Just got off the phone with Laurier who tells me that the weather in Edmonton was even nicer than here in PA today! And that was just the beginning of his positive report....
Things are really picking up speed with Donovan's healing. Today was a very busy day of learning to keep scrupulous records of anti-rejection meds....they need to be taken at the exact same time each day, and recorded.
Next was pulmonary function tests...and guess what? The new "breathers" are working at 60% (that's the fev1 number, the amount of air exhaled in one second, an important reading for lung function) and this is great for a first test. It will take about six months for the lungs to kick in to high gear. Each day Donovan will record his blood pressure, pulse and PFT (pulmonary function) numbers, and brings the info into clinic, where they will look at the trend. This will help him to note if any rejection is going on.
Then, on to the gym where they are really cracking down and getting Donovan to practice stairs, in and out of the tub etc. and see just what kind of support equipment he may need for a while at home. It's going to take a while to build that muscle strength that we all take for granted. He is now able to get up off a chair or bed unassisted. Yay Donny!
The swelling of the feet and ankles is finally subsiding, they tell me....The slippers we bought Donovan a week or so ago are falling off his feet now. I know this will make him feel a lot better, not having to look down at puffy feet.
Believe it or not, they bought a third roommate into Donovan's shared room...and yes, there is only room for two beds! They jammed a third patient between the two for the day! I can't imagine how crowded it was! They did find a room for the poor soul by evening...
We are so pleased with how everything is going, but just a few items that are still concerning. One of the side effects of the meds is insomnia, and Donovan has it in spades. Sleeping pills are not working...so they are going to try to find the right combo....let's pray it works!
There's also an area of one of the lower lobes of one of the lungs that isn't quite inflating properly, so the techs are getting Donovan to lay on that side and do his "slurpee machine" breathing exercise. As I understand it, he just needs to force air into that area. Let's pray it responds to treatment.
I'm not sure how things are going with the low blood, and lack of hemoglobin, but no news is good news for now. I think I've been told the white cell count is still decreasing which is great!
Best of all, for the first time in a month, Donovan got to breathe outside air. They loaded him into a wheelchair for a walk in the lovely autumn weather! I'm so happy for him!!!
Here on the homefront, things are busy, but I've had the privilege of sharing our miracle with so many wonderful supporters....Stephen's soccer team parents at a game today, and at a parent's meeting tonite. These folks have been great in assisting with our part in the planning of his team's trip to Charlottetown on Sunday. I've also had long leisurely lunches with family and friends and plan to go out again with the girls from my work on Thursday...the days are passing quickly. It's so odd, feeling like I've been away from home an eternity, but at the same time almost like I've never left at all. But I must say I'm loving my own bed, and all my familiar stuff!
Well, that's another day on our journey. Discharge is looking like it will be sooner rather than later, by the way they are handing the reigns over to Donovan. This is all still so continually amazing, and we constantly thank God for all his wonderful works in our's and our son's life.
God bless each one of you as you walk this road with us.
love,
Beth
Tuesday, September 30, 2008
Sunday, September 28, 2008
Greetings from Prince Albert!
It's just Beth here, not the whole family. Well, I do have my youngest Stephen, now within a hug's reach. It was decided quite suddenly this morning that I would come back home to be with our youngest before he leaves for soccer nationals in Charlottetown next week. Then I'll head back to Edmonton while he is gone. After that, I think depending on how Donovan is doing, Laurier & I will take turns staying in Edmonton. Folks, this is a time when clones are needed, quite badly. One of me to be here, with Stephen, and one in Edmonton with Donovan!
While it was difficult for me to leave today, I am encouraged by the way Donovan is getting around on four wheels, taking the long way around the unit with the walker! Logan came to visit his buddy again today...thanks Logan! (And sorry Sharon for the way I slaughtered your name...I was thinking of someone else who spells their name that way, not you! )
So this week is all about teaching, and learning. We have so much to learn about the care of second-hand-lungs! There's the anti-rejection drugs, testing blood sugar and administering insulin shots, and of course, our old favorite from cf days, pulmonary function tests, which we now get to do at home...but we have to buy our own machine for it. I hope Laurier takes a lot of notes.
I'm sure Laurier will get to go to the gym downstairs with Donovan as well this week. He (donny) has a lot of muscle strength to rebuild. Do you know when your body is under extreme stress as Donovan's was pre-transplant, it actually devours muscles. So that explains the trembly legs and arms.
So, sorry I didn't get to say goodbye to Kristen & Connie & Lauren and Shauna....but I hope to see you next week, preferably in the ICU both recovering from transplant surgery!!! I'm praying...you'll let me know, right?
My daughter Amy was kind enough to drive me home today, and turns around tomorrow morning to head back to Battleford for work. Isn't she sweet? I'll probably fly back there next Sunday evening.
Hope you all have a good night. God Bless each of you. I'm going to tuck my 14 yr. old "baby" in now, something I haven't been there to do in a looooong time.
love,
Beth
While it was difficult for me to leave today, I am encouraged by the way Donovan is getting around on four wheels, taking the long way around the unit with the walker! Logan came to visit his buddy again today...thanks Logan! (And sorry Sharon for the way I slaughtered your name...I was thinking of someone else who spells their name that way, not you! )
So this week is all about teaching, and learning. We have so much to learn about the care of second-hand-lungs! There's the anti-rejection drugs, testing blood sugar and administering insulin shots, and of course, our old favorite from cf days, pulmonary function tests, which we now get to do at home...but we have to buy our own machine for it. I hope Laurier takes a lot of notes.
I'm sure Laurier will get to go to the gym downstairs with Donovan as well this week. He (donny) has a lot of muscle strength to rebuild. Do you know when your body is under extreme stress as Donovan's was pre-transplant, it actually devours muscles. So that explains the trembly legs and arms.
So, sorry I didn't get to say goodbye to Kristen & Connie & Lauren and Shauna....but I hope to see you next week, preferably in the ICU both recovering from transplant surgery!!! I'm praying...you'll let me know, right?
My daughter Amy was kind enough to drive me home today, and turns around tomorrow morning to head back to Battleford for work. Isn't she sweet? I'll probably fly back there next Sunday evening.
Hope you all have a good night. God Bless each of you. I'm going to tuck my 14 yr. old "baby" in now, something I haven't been there to do in a looooong time.
love,
Beth
Saturday, September 27, 2008
Step by step
With a much less high-tech walker....physio today suggested one lap with the 'zombie walker' then another with a regular four-wheeled type! Now that's progress! And after that, for the first time in over 4 weeks, a shower!!! That must have felt fantastic for Donovan. No more sponge baths, and hair-washing ventures in bed.
There's also all kinds of wonderful rumors abounding here about passes from the hospital, and (get this) discharge in the future weeks. Now, all these different doctors have to get their collective heads together, and actually decide on when these things will happen...and then Laurier & I can actually make some plans about what we will do....but how good to know things are going this well! PTL!
We are going to have a very busy week with so much learning. We know very little about all the testing required for blood sugar & insulin, nothing about the anti-rejection drugs, and we've still not had a pulmonary function test....something we will do daily at home to check on Donovan's lungs each day. These tests will tell us if his body is rejecting the lungs (he's never been rebellious...let's hope it won't start now!). This week he will begin physio at the gym downstairs as well. We'll meet lots of other transplant folks there as well, which will be good for Donovan.
A busy afternoon for Donovan today....one more unit of blood, which means vitals checks very often for the 3 hours the transfusion takes. Let's pray this is the last. Also, one of the docs this a.m. didn't think antibiotics would stop so soon. I hope they make up their minds, because this affects the fluid restriction. This particular doctor really needs to learn to smile & lighten up a little! He scares me!!!
Well, I'm in the family room, and going to dig into my new book while Donovan sleeps. Actually it's your book Logan L.(I'll get it back to you on your next visit) "The Shack" by William Young. Check it out! Very interesting.
Take care everyone, and Happy 2 Week Transplant Anniversay Donovan!
Love,
Beth
There's also all kinds of wonderful rumors abounding here about passes from the hospital, and (get this) discharge in the future weeks. Now, all these different doctors have to get their collective heads together, and actually decide on when these things will happen...and then Laurier & I can actually make some plans about what we will do....but how good to know things are going this well! PTL!
We are going to have a very busy week with so much learning. We know very little about all the testing required for blood sugar & insulin, nothing about the anti-rejection drugs, and we've still not had a pulmonary function test....something we will do daily at home to check on Donovan's lungs each day. These tests will tell us if his body is rejecting the lungs (he's never been rebellious...let's hope it won't start now!). This week he will begin physio at the gym downstairs as well. We'll meet lots of other transplant folks there as well, which will be good for Donovan.
A busy afternoon for Donovan today....one more unit of blood, which means vitals checks very often for the 3 hours the transfusion takes. Let's pray this is the last. Also, one of the docs this a.m. didn't think antibiotics would stop so soon. I hope they make up their minds, because this affects the fluid restriction. This particular doctor really needs to learn to smile & lighten up a little! He scares me!!!
Well, I'm in the family room, and going to dig into my new book while Donovan sleeps. Actually it's your book Logan L.(I'll get it back to you on your next visit) "The Shack" by William Young. Check it out! Very interesting.
Take care everyone, and Happy 2 Week Transplant Anniversay Donovan!
Love,
Beth
Friday, September 26, 2008
Moving day again!!!
In the grand scheme of things, it's a minor annoyance, but when you're the one going through it, it's major. Yes, we had a private room for 24 hours, then another patient needed isolation, so it's shared digs once again. How frustrating. This has Donovan at his wit's end! The transplant ward is quite small, and has only about 4 private rooms, so they are at a premium. He is on the list for one, but it remains to be seen when that will happen. How about we turn this over to God? He knows all of our needs, and knows what Donovan needs.
Ok, now for good news. Twice around the ward with the "Zombie Walker"....two laps in one session. That's twice as good as yesterday!!! He's fighting for all he's worth, and we couldn't be more proud. It is exhausting though, and Donovan is not gaining strength at the rate he wants to. He's more than a little frustrated with his baby Bambi legs, so needs all the encouragement we can give him.
It was wonderful for Donovan to have a surprise visit from his very good friend Logan today, and Logan's sister Sherren. It was great for all of us to see you Logan! Fresh from European travels, and more recently from school in Winnipeg. It's friends like you that are helping Donovan pull through this major event in his life, and we are so grateful for your loyalty! Bless you! Sherren, we appreciate your prayers and support as well. Wonderful to meet you!
Of concern today is Donovan's need once again for more "transmission fluid" aka blood. He received another unit today, and will get one tomorrow as well. From what we understand, his bone marrow just isn't producing the red cells he needs. Not sure why, but God knows. Let's bring this need to Him, and ask for plenty of red cells!
Amy & Tyler are here for the weekend, and Katie (and the world's cutest unborn grandbaby) as well as her husband Kurtis were also around today. Nothing like family, but we miss you Stephen!!! So much!!! Katie and Amy helped Donovan was his hair in bed today, quite a feat involving plastic garbage bag funnels and a tray...I wonder if they'll demand the favor returned one day?
A little more good news...there is talk of an end in site for IV antibiotics. Do you know we are into our fifth week of them? What a haul. But as we understand it, the transplant infectious diseases specialists (there's a mouthful) are talking about discontinuing them about 2 weeks post-transplant which will be tomorrow. This will mean Donovan can drink more liquids, as he will get less through IV. Yay!!! His white cell count was down to 14 today, and we can all celebrate that. If we can go down to 11, we'll be within normal range....
Yes, this has been quite a life-changing process, and yes, we are all tired. But these small gains buoy us on. Dr. Ghorpade (the surgeon) has even suggested to Donovan that perhaps next week he'll be able to get an afternoon pass from hospital. If you hear whooping and hollering from Edmonton, that will be us! (me, anyway.)
Love & Prayers to all,
Beth
Ok, now for good news. Twice around the ward with the "Zombie Walker"....two laps in one session. That's twice as good as yesterday!!! He's fighting for all he's worth, and we couldn't be more proud. It is exhausting though, and Donovan is not gaining strength at the rate he wants to. He's more than a little frustrated with his baby Bambi legs, so needs all the encouragement we can give him.
It was wonderful for Donovan to have a surprise visit from his very good friend Logan today, and Logan's sister Sherren. It was great for all of us to see you Logan! Fresh from European travels, and more recently from school in Winnipeg. It's friends like you that are helping Donovan pull through this major event in his life, and we are so grateful for your loyalty! Bless you! Sherren, we appreciate your prayers and support as well. Wonderful to meet you!
Of concern today is Donovan's need once again for more "transmission fluid" aka blood. He received another unit today, and will get one tomorrow as well. From what we understand, his bone marrow just isn't producing the red cells he needs. Not sure why, but God knows. Let's bring this need to Him, and ask for plenty of red cells!
Amy & Tyler are here for the weekend, and Katie (and the world's cutest unborn grandbaby) as well as her husband Kurtis were also around today. Nothing like family, but we miss you Stephen!!! So much!!! Katie and Amy helped Donovan was his hair in bed today, quite a feat involving plastic garbage bag funnels and a tray...I wonder if they'll demand the favor returned one day?
A little more good news...there is talk of an end in site for IV antibiotics. Do you know we are into our fifth week of them? What a haul. But as we understand it, the transplant infectious diseases specialists (there's a mouthful) are talking about discontinuing them about 2 weeks post-transplant which will be tomorrow. This will mean Donovan can drink more liquids, as he will get less through IV. Yay!!! His white cell count was down to 14 today, and we can all celebrate that. If we can go down to 11, we'll be within normal range....
Yes, this has been quite a life-changing process, and yes, we are all tired. But these small gains buoy us on. Dr. Ghorpade (the surgeon) has even suggested to Donovan that perhaps next week he'll be able to get an afternoon pass from hospital. If you hear whooping and hollering from Edmonton, that will be us! (me, anyway.)
Love & Prayers to all,
Beth
Thursday, September 25, 2008
He's arrived!!!
Donovan has made the one floor journey up to the family room....to update his facebook page! Yay!!! Of course that means he's doing better...and don't we all love to see & hear that! Thank you God!!! And to all of our prayer warriors...another big hug!
I have to make mention of another good thing, and that is Donovan's enormous appetite. It's probably drug induced, but we'll take what we can get. He's got over 2 weeks of not eating to make up for, so this is a welcome side-effect. Note to visitors: He'll eat pretty much anything that isn't tied down....so watch your possessions. One "bummer" is that he has to maintain a low-sugar diabetic diet for now, so we can't buy him all the treats we'd like to. That's ok, though, as Donovan never was a 'sweets tooth' kind of guy, unlike someone else in the family.....(guilty as charged)!
Another good news report...twice around the unit today....50 meters or so with the help of the "zombie walker" once in the a.m. and again later. He is really determined to strengthen up, and occupational therapy showed up to assist with this with small hand-weights today. Look out, Arnold!!!
And one more praise item...(you're not getting tired of this are you?) We got moved to a private room today....Hooray!!! this was no small feat, as single rooms are hard to come by. We hope this will provide Donovan with a better night's sleep, and allow us to visit more freely. It's just the icing on the cake. Hope we won't have to move rooms again till we're gone for good!
Hey Chantal....thanks so much for all the encouraging notes. Donovan is finally up to opening all of them, and thankyou Annette for the lovely carved letter opener...it's coming in really handy.
And thanks to all of you for your love and support! Today is a really good day!
Love, Beth & family.
ps. Donovan who is right here in the flesh beside me sends all his love and thanks!
I have to make mention of another good thing, and that is Donovan's enormous appetite. It's probably drug induced, but we'll take what we can get. He's got over 2 weeks of not eating to make up for, so this is a welcome side-effect. Note to visitors: He'll eat pretty much anything that isn't tied down....so watch your possessions. One "bummer" is that he has to maintain a low-sugar diabetic diet for now, so we can't buy him all the treats we'd like to. That's ok, though, as Donovan never was a 'sweets tooth' kind of guy, unlike someone else in the family.....(guilty as charged)!
Another good news report...twice around the unit today....50 meters or so with the help of the "zombie walker" once in the a.m. and again later. He is really determined to strengthen up, and occupational therapy showed up to assist with this with small hand-weights today. Look out, Arnold!!!
And one more praise item...(you're not getting tired of this are you?) We got moved to a private room today....Hooray!!! this was no small feat, as single rooms are hard to come by. We hope this will provide Donovan with a better night's sleep, and allow us to visit more freely. It's just the icing on the cake. Hope we won't have to move rooms again till we're gone for good!
Hey Chantal....thanks so much for all the encouraging notes. Donovan is finally up to opening all of them, and thankyou Annette for the lovely carved letter opener...it's coming in really handy.
And thanks to all of you for your love and support! Today is a really good day!
Love, Beth & family.
ps. Donovan who is right here in the flesh beside me sends all his love and thanks!
Wednesday, September 24, 2008
Lazarus....
That's my friend Verla's new name for Donovan. His comment? "It works!" (Lazarus was the biblical character Jesus raised from the dead.)
I was thinking about that today as physio assisted Donovan on his very first walking venture! They use a giant walker which Donovan has dubbed "the zombie walker" It has an adjustable padded arm bench and handles to grip onto, as well as a harness underneath in case your legs give out. I follow behind with a wheelchair for him to sit in as he needs breaks. Today, the virgin voyage out of his room, he went down a hall, across the bottom of the hall, and up about 3 room lengths on the other side! Wow! Needless to say he was all a-tremble when we finished. But we were able also go on a "just for kicks" wheelchair ride and show him around a little after the walk.
Donovan was very tired today....the schedule is very tight as I mentioned earlier, so we need to continue to pray for restful sleeps. Today as I was helping him remove adhesive remains of bandages from his body, I felt the air under the skin in his chest. The weirdest thing...feels like rice krispies snap, crackle, popping....so Jerry S., tell me about this! You are the expert in all things respiratory! I know, it will probably go away....
I know you may be getting tired of this, but here's my worry list for tonite....(and I know I shouldn't worry!).
---continuing hi-ish white blood count, and we don't know why....it runs about 15-20
---swelling in legs is more tonite, even with diminished liquids....I know I shouldn't worry about this!
---Lungs are a little crackly, but I guess mine would be too if they were "new to me"
---Blood sugar readings are "all over the map" but this I'm told will settle.
---They (the docs) are puzzled as to why he needed blood yesterday...they are checking for sources of internal bleeding...but of course nothing is obvious.
Now, having laid that all out, I feel better and will pray and not worry. You will too, right?
I have to share with all of you how touched Donovan is by your thoughts, prayers and support. Each night we pray together before we leave him. Each time we do, he begins to thank God for everyone who is thinking of him and praying for him, and the tears begin, his first, then mine. He is humbled, grateful and his heart is overflowing. So, thank-you from Donovan!
For those who are coming soon to see him, he is still new-born kitten weak, and unable to be very animated. Emotions take a lot of energy to express, but he feels things deeply. Visiting takes a lot of work, but he enjoys just being "sat with" and will love to see you for short periods!
Good nite and God bless from all of us in Edmonton.
love, Beth
I was thinking about that today as physio assisted Donovan on his very first walking venture! They use a giant walker which Donovan has dubbed "the zombie walker" It has an adjustable padded arm bench and handles to grip onto, as well as a harness underneath in case your legs give out. I follow behind with a wheelchair for him to sit in as he needs breaks. Today, the virgin voyage out of his room, he went down a hall, across the bottom of the hall, and up about 3 room lengths on the other side! Wow! Needless to say he was all a-tremble when we finished. But we were able also go on a "just for kicks" wheelchair ride and show him around a little after the walk.
Donovan was very tired today....the schedule is very tight as I mentioned earlier, so we need to continue to pray for restful sleeps. Today as I was helping him remove adhesive remains of bandages from his body, I felt the air under the skin in his chest. The weirdest thing...feels like rice krispies snap, crackle, popping....so Jerry S., tell me about this! You are the expert in all things respiratory! I know, it will probably go away....
I know you may be getting tired of this, but here's my worry list for tonite....(and I know I shouldn't worry!).
---continuing hi-ish white blood count, and we don't know why....it runs about 15-20
---swelling in legs is more tonite, even with diminished liquids....I know I shouldn't worry about this!
---Lungs are a little crackly, but I guess mine would be too if they were "new to me"
---Blood sugar readings are "all over the map" but this I'm told will settle.
---They (the docs) are puzzled as to why he needed blood yesterday...they are checking for sources of internal bleeding...but of course nothing is obvious.
Now, having laid that all out, I feel better and will pray and not worry. You will too, right?
I have to share with all of you how touched Donovan is by your thoughts, prayers and support. Each night we pray together before we leave him. Each time we do, he begins to thank God for everyone who is thinking of him and praying for him, and the tears begin, his first, then mine. He is humbled, grateful and his heart is overflowing. So, thank-you from Donovan!
For those who are coming soon to see him, he is still new-born kitten weak, and unable to be very animated. Emotions take a lot of energy to express, but he feels things deeply. Visiting takes a lot of work, but he enjoys just being "sat with" and will love to see you for short periods!
Good nite and God bless from all of us in Edmonton.
love, Beth
Good news (from the family room)
Tucked away on the fourth floor of UAH (university of AB hospital) is a cozy little room with nice furniture, a huge tropical fish tank and 3 computers for public use. My little safe haven from all things medical. So it's here I sit while Donovan tries his best to get in a little snooze before the onslaught of physio. (onslaught? sounds more gruesome than it actually is....they mostly do strengthening and balance exercises!)
How about a little lunch-time good news? The last of the chest tubes came out today! Yay! So, we're down to one, count 'em, one, IV pump. That's down from at least seven in the ICU. We now need to ask God to keep the new lungs nicely inflated and working at top capacity. The four holes from the chest tubes are stitched up, but need to heal.
A concern of recent is Donovan's fluid restriction. The doctors are very vigilant about keeping the new lungs "dry" not overloading them with too much fluid in his system. Because he gets many IV meds and tube feeds at night, and needs to swallow so many pills throughout the day, they must keep what he drinks in a 24-hr period down to abuot 1 litre. That is not a lot! I've never really kept track of what I drink, but this restriction plays games with the head, and makes me thirsty for him! Let's pray this restriction is lifted soon. At this time, 1:30 pm, he only has about 11/2 cups left to drink till tomorrow morning! It goes all too quickly. He's still swollen in the feet and legs, but that is decreasing.
There is talk of decreasing the tube feeding that he has had nightly for about 7 years or more. Donovan used to need over 3,000 calories a day to keep strong for breathing, fighting infection and gaining weight. Guess what! Without a couple of faulty lungs, he may no longer need nightly tube feeds. Eventually, we may be able to remove his G-tube entirely! I hadn't even thought about that til now!
Strength is being gained daily, but Donovan still isn't walking on his own. This is something we'll work on at the gym downstairs now that the last chest tube is out. It's hard to support the upper body with a "shark bite" in your chest. The staples will stay in another week and a half or so, so we've got a ways to go.
Thankful for every inch we gain on this journey,
Beth
How about a little lunch-time good news? The last of the chest tubes came out today! Yay! So, we're down to one, count 'em, one, IV pump. That's down from at least seven in the ICU. We now need to ask God to keep the new lungs nicely inflated and working at top capacity. The four holes from the chest tubes are stitched up, but need to heal.
A concern of recent is Donovan's fluid restriction. The doctors are very vigilant about keeping the new lungs "dry" not overloading them with too much fluid in his system. Because he gets many IV meds and tube feeds at night, and needs to swallow so many pills throughout the day, they must keep what he drinks in a 24-hr period down to abuot 1 litre. That is not a lot! I've never really kept track of what I drink, but this restriction plays games with the head, and makes me thirsty for him! Let's pray this restriction is lifted soon. At this time, 1:30 pm, he only has about 11/2 cups left to drink till tomorrow morning! It goes all too quickly. He's still swollen in the feet and legs, but that is decreasing.
There is talk of decreasing the tube feeding that he has had nightly for about 7 years or more. Donovan used to need over 3,000 calories a day to keep strong for breathing, fighting infection and gaining weight. Guess what! Without a couple of faulty lungs, he may no longer need nightly tube feeds. Eventually, we may be able to remove his G-tube entirely! I hadn't even thought about that til now!
Strength is being gained daily, but Donovan still isn't walking on his own. This is something we'll work on at the gym downstairs now that the last chest tube is out. It's hard to support the upper body with a "shark bite" in your chest. The staples will stay in another week and a half or so, so we've got a ways to go.
Thankful for every inch we gain on this journey,
Beth
Tuesday, September 23, 2008
Transmission Fluid...
They are adding a couple of pints to Donovan, as he measured "low" this evening.... I'm talking about blood of course, but isn't it really just transmission fluid? That should pink up his cheeks a little, (the ones on his face, people!) I wonder how many units he's received already? There were four that I knew of in ICU, and probably a few during surgery. So to my sister Jewel and all you other regular blood donors, a big round of applause and thanks! Make that a standing ovation!!!
We had a good day with Donovan. He was up and at 'em, giving himself a wash up on the side of the bed when we got there....did I mention he says sponge baths by young nurses are "over-rated!" He doesn't think all the personal attention is worth the trouble of getting "new breathers".
Found out he did have a pneumothorax, or partial collapse of one of the new lungs. It's better already, so I couldn't even spend time worrying about it! Darn!!! So the 15 litres of oxygen I spoke of yesterday worked their magic, I guess. There's talk of the last chest tube coming out tomorrow, and we will personally supervise the tight stitches, so no more leaks in his chest!
On the "praise" side of things for today, thanks for that dice game, Joan & Roger & Julie...we played it with Donovan & Katie today. Lots of fun! And what a joy to do something all together, something so normal...having a few laughs is as good a therapy as the stuff they run into Donovan's veins, (in my non-medical opinion).
Hey, more good news, his white count is down a little. Let's keep praying all the way to normal. I'll give you till the weekend, so get on it!!!
And how do y'all like the new looks of this blogsite. That would be the handiwork of my darling husband, who just couldn't stand not renovating something! He was appalled at the feminine template I had originally chosen, and didn't want Donovan offended when he eventually looks at this....and hopefully adds his own opinion. Is this more gender neutral? Or even a little masculine? I'm not sure.
We're still considering our options for long-term here in Edmonton. No decisions yet, but I'm thinking we may stay here at my friend Verla's house. It really is getting to be home, and I think I'd be too lonely in a new space. I'll just have to suck up my fears of Edmonton traffic! But there's time for all those decisions. Have I mentioned we may be here till Christmas or beyond? So far, we're on a pretty great curve, healing-wise, but we're told to be prepared for anything. There are always hurdles, but we'll let God deal with that....and He's doing a great job of getting us through thus far!
For those of you who have visited and seen all the post-surgical patients walking around hugging those red plush heart pillows on Donovan's ward, he now owns two of them! (One for each lung?). I was getting a kick out of watching these bent-over people pushing IV poles, walking gingerly up and down the halls, holding these heart pillows. They looked like victims of broken romances (hearts?) Apparently Telus supplies these pillows to the heart surgery ward, because it helps to hold a pillow to the surgical site for support. Donovan call them his "coughing pillows". He's doing well, but it does hurt to cough.
Please do remember to pray for "K" and "L" two fabulous young women, each waiting here for a set of lungs! They so deserve them! Each has been through a lot. It's hard for me not to feel guilty that we jumped through the hoops so fast, although we didn't have any wait time left to speak of. Each of these gals has been on 'the list' for months. Waiting in hospital seems endless.
Indeed, we are blessed and highly favored. Each time I tell our story both to medical people and friends, I come to realize it more and more. Just as it is going to take time for Donovan's healing to be complete, the realization of our miracle will take time to fully hit home.
Well, off to bed with me. Thanks for listening everyone!
love, Beth
We had a good day with Donovan. He was up and at 'em, giving himself a wash up on the side of the bed when we got there....did I mention he says sponge baths by young nurses are "over-rated!" He doesn't think all the personal attention is worth the trouble of getting "new breathers".
Found out he did have a pneumothorax, or partial collapse of one of the new lungs. It's better already, so I couldn't even spend time worrying about it! Darn!!! So the 15 litres of oxygen I spoke of yesterday worked their magic, I guess. There's talk of the last chest tube coming out tomorrow, and we will personally supervise the tight stitches, so no more leaks in his chest!
On the "praise" side of things for today, thanks for that dice game, Joan & Roger & Julie...we played it with Donovan & Katie today. Lots of fun! And what a joy to do something all together, something so normal...having a few laughs is as good a therapy as the stuff they run into Donovan's veins, (in my non-medical opinion).
Hey, more good news, his white count is down a little. Let's keep praying all the way to normal. I'll give you till the weekend, so get on it!!!
And how do y'all like the new looks of this blogsite. That would be the handiwork of my darling husband, who just couldn't stand not renovating something! He was appalled at the feminine template I had originally chosen, and didn't want Donovan offended when he eventually looks at this....and hopefully adds his own opinion. Is this more gender neutral? Or even a little masculine? I'm not sure.
We're still considering our options for long-term here in Edmonton. No decisions yet, but I'm thinking we may stay here at my friend Verla's house. It really is getting to be home, and I think I'd be too lonely in a new space. I'll just have to suck up my fears of Edmonton traffic! But there's time for all those decisions. Have I mentioned we may be here till Christmas or beyond? So far, we're on a pretty great curve, healing-wise, but we're told to be prepared for anything. There are always hurdles, but we'll let God deal with that....and He's doing a great job of getting us through thus far!
For those of you who have visited and seen all the post-surgical patients walking around hugging those red plush heart pillows on Donovan's ward, he now owns two of them! (One for each lung?). I was getting a kick out of watching these bent-over people pushing IV poles, walking gingerly up and down the halls, holding these heart pillows. They looked like victims of broken romances (hearts?) Apparently Telus supplies these pillows to the heart surgery ward, because it helps to hold a pillow to the surgical site for support. Donovan call them his "coughing pillows". He's doing well, but it does hurt to cough.
Please do remember to pray for "K" and "L" two fabulous young women, each waiting here for a set of lungs! They so deserve them! Each has been through a lot. It's hard for me not to feel guilty that we jumped through the hoops so fast, although we didn't have any wait time left to speak of. Each of these gals has been on 'the list' for months. Waiting in hospital seems endless.
Indeed, we are blessed and highly favored. Each time I tell our story both to medical people and friends, I come to realize it more and more. Just as it is going to take time for Donovan's healing to be complete, the realization of our miracle will take time to fully hit home.
Well, off to bed with me. Thanks for listening everyone!
love, Beth
Monday, September 22, 2008
Oh, Monday, Monday....
The first day of fall...who would have ever thought we'd be spending the start of this season in Edmonton...but here we are. I think I will ask God if we could start the next season happily at home in P.A.
We had a wonderful nurse today, "Gitelle" so extremely efficient. And physio did show up as promised, so it was out of bed a few times for Donovan. Those legs and feet really need strengthening, but we have noticed small improvements in balance already. Soon he'll really be assisting with transfers to the chair. And we hope to get those wheelchair rides in, just for fun, soon, instead of a means of transport to x-ray etc.
We do have a few prayer needs tonite....The chest tube removal is still giving us troubles...it was suggested tonite that Donovan go on a large amount of oxygen (15 litres) by mask and rebreather bag to help deal with the re-absorbtion of air/fluid as we understand it. Laurier and I had stepped out of the hospital when this suggestion was made, so we didn't get our questions answered, and this bugs us both. Plus I just hate the sight of oxygen masks. I know, it's not a respirator tube, so I should just "suck it up", but somehow it seems like a step backwards. His oxygen sats (level of oxygen in the blood) are fine on room air, so the new lungs continue to thrive, but this is just a precaution, or to help, or something....
Also, Donovan's white blood count is way up, which suggests infection, although there is no obvious infection. No fever. Lungs are clear! They are checking his urine, as he was catheterized for an extended period...but no signs of infections there either. Another blip on the radar screen, I guess! He is getting a veritable truckload of antibiotics, so it should cover any bug. But please ask God to continue his wonderful healing work tonite, and to wipe out any infection....thanks guys!
We checked out a suite closer to the hospital today, new and furnished, though very expensive. ($1500-2000/mo.) We are thinking about what would be best for Donny when he comes out of hospital. He will have to continue to go in for daily checks, clinics and physio, for a couple of months, so close would be good! It would be great to not have to deal with the very crowded and at times slow parkade.
A few more good signs today...Donovan checking out TV listings, instead of vacantly watching the screen, and talk of being bored! Time to start puzzles, board games, etc. But I know how he feels, I'm getting a little restless myself! Saw a yoga class today in the activity room of the apartment we looked at and just about crashed it! Will have to check in to an exercise class here. Elizabeth, how's things at Bravo??? I miss you and the gym so much!!!
And as for my "wedding crasher" family, I can't wait to get the video and see who truly made fools of themselves...cough, Gregor, cough....saw the preliminary pics of people getting "corsaged"...but where's the good stuff, Lennie??? The spun gold dress? How we would have liked to have been there, next time Jason??? oh, get a grip, just kidding!!!
Well, off to bed. And hopefully on to another day of healing and better news tomorrow....
love & prayers,
Beth
ps. Dennis & Paulette, thank you for the wonderful card & gift. How nice to meet Nicole, and so sweet of her to deliver it to us. She's wonderful! Hope you are both well, and maybe we'll get to see you here as well!
We had a wonderful nurse today, "Gitelle" so extremely efficient. And physio did show up as promised, so it was out of bed a few times for Donovan. Those legs and feet really need strengthening, but we have noticed small improvements in balance already. Soon he'll really be assisting with transfers to the chair. And we hope to get those wheelchair rides in, just for fun, soon, instead of a means of transport to x-ray etc.
We do have a few prayer needs tonite....The chest tube removal is still giving us troubles...it was suggested tonite that Donovan go on a large amount of oxygen (15 litres) by mask and rebreather bag to help deal with the re-absorbtion of air/fluid as we understand it. Laurier and I had stepped out of the hospital when this suggestion was made, so we didn't get our questions answered, and this bugs us both. Plus I just hate the sight of oxygen masks. I know, it's not a respirator tube, so I should just "suck it up", but somehow it seems like a step backwards. His oxygen sats (level of oxygen in the blood) are fine on room air, so the new lungs continue to thrive, but this is just a precaution, or to help, or something....
Also, Donovan's white blood count is way up, which suggests infection, although there is no obvious infection. No fever. Lungs are clear! They are checking his urine, as he was catheterized for an extended period...but no signs of infections there either. Another blip on the radar screen, I guess! He is getting a veritable truckload of antibiotics, so it should cover any bug. But please ask God to continue his wonderful healing work tonite, and to wipe out any infection....thanks guys!
We checked out a suite closer to the hospital today, new and furnished, though very expensive. ($1500-2000/mo.) We are thinking about what would be best for Donny when he comes out of hospital. He will have to continue to go in for daily checks, clinics and physio, for a couple of months, so close would be good! It would be great to not have to deal with the very crowded and at times slow parkade.
A few more good signs today...Donovan checking out TV listings, instead of vacantly watching the screen, and talk of being bored! Time to start puzzles, board games, etc. But I know how he feels, I'm getting a little restless myself! Saw a yoga class today in the activity room of the apartment we looked at and just about crashed it! Will have to check in to an exercise class here. Elizabeth, how's things at Bravo??? I miss you and the gym so much!!!
And as for my "wedding crasher" family, I can't wait to get the video and see who truly made fools of themselves...cough, Gregor, cough....saw the preliminary pics of people getting "corsaged"...but where's the good stuff, Lennie??? The spun gold dress? How we would have liked to have been there, next time Jason??? oh, get a grip, just kidding!!!
Well, off to bed. And hopefully on to another day of healing and better news tomorrow....
love & prayers,
Beth
ps. Dennis & Paulette, thank you for the wonderful card & gift. How nice to meet Nicole, and so sweet of her to deliver it to us. She's wonderful! Hope you are both well, and maybe we'll get to see you here as well!
Sunday, September 21, 2008
The trouble with chest tubes is....
When you remove them, they leave holes in your chest. That is, if you have very little fat on your chest, as is the case with our lean boy! The good news is 2 more came out today. The not so good news is, the holes didn't close properly, so with each breath, Donovan was literally moving outside air into his chest cavity. And the scary thing is, he was the one who "picked up" on it. So, x-ray, stitches, and lying on his right side were all supposed to move the air to the other side where the remaining chest tube would vacuum it out. Hmmm, yeah, right! Didn't happen. This evening, we found out that there was still a small amount of air leaking in from the bigger of the two holes. So now we are trying a pressure bandage and the side-lying position.
So, that can be #1 on our prayer list today, that all the air moves out, or there will have to be a new tube inserted. Ouch!!! Not fun!!! And please ask God to remove worry & anxiety from Donovan's mind. He needs peace to heal. Can you imaging holes in your chest??? might make me a tad anxious!
Donovan lost his catheter today, and made one commode-chair trip to the john! We're celebrating sitting on the toilet like we did when he was a toddler. I should have had some M&M treats for him. Yay!!! So, fewer and fewer tubes remain. He is reclaiming his body bit by bit. He's talking more, and eating a regular diet now. We can even sneak in outside treats! It is fantastic to see the return of the appetite! He will need to gain some lost weight, but we don't know how much. He's retaining fluid right now, so actually is about 10 lbs or so heavier than pre-surgery.
Today Donovan's wonderful surgeon, (remember "Dr. I love you" from an earlier post?) aka Dr. Ghorpade, was kind enough to show us photos taken during the transplant surgery. We saw Donovan's old lungs, all misshapen and discolored, scarred, bumpy, and totally used up. Then, there was a picture of these beautiful, pink, firm lungs inside the opening to his chest. How wonderful. And no, they didn't make me feel squeamish at all. I was transfixed by the wonder of it! How does he do it? I have no idea, but I am thankful science has improved to this point. We owe each new breath Donovan takes to this doctor and hospital.
Well, it was a teary goodbye to Amy and Stephen this afternoon, who head back to Battleford and PA, but we know we'll all be together again soon. There is talk of a visit with cousins next weekend as well. Laurier & I ventured out to a mall today to pick up new PJs for Donny, and there's talk of new slippers, because after sitting in a chair comes walking!!! Those old swollen feet will be gone in a flash! (his, not mine!).
And hey, family, I want wedding reports and soon. Photos too! What did the bridal party wear? Did Jason stumble on his vows? (the "till death" part?) How was the meal and dance??? Don't spare the details....
This week we can expect the physio people to be on Donovan's case constantly, no rest for the wicked. How exciting it will be to get him in a wheelchair and actually show him where he's been living the past two weeks!
A special thanks today to Vince & Anne Hill, your gesture of support was very touching. We miss you guys...keep a pew warm for us. And when does the class start Anne?
To Hagels and Friesens for getting Stephen to Battleford and back....wow, thanks sooooo much. You're awesome. We miss our 'baby' so much! It was great to have him here this weekend.
To all of you who continue to hang in there with us, it means the world. Each prayer and gesture is felt and appreciated. All of you are number 1 on our "praise list".
In the grip of God's grace,
Beth
ps. Could I be so bold as to ask you to pray for a fellow named Tom, who was in a near-fatal motorcycle accident? We met this lovely family in our first ICU unit, and continue to run into them all over the hospital. Incidentally, Alice, this is Danica's mom's first cousin. She also knows the Draders (our son in law's family) from church. Small world. He is making strides, but it will be a long haul for him and his family.
So, that can be #1 on our prayer list today, that all the air moves out, or there will have to be a new tube inserted. Ouch!!! Not fun!!! And please ask God to remove worry & anxiety from Donovan's mind. He needs peace to heal. Can you imaging holes in your chest??? might make me a tad anxious!
Donovan lost his catheter today, and made one commode-chair trip to the john! We're celebrating sitting on the toilet like we did when he was a toddler. I should have had some M&M treats for him. Yay!!! So, fewer and fewer tubes remain. He is reclaiming his body bit by bit. He's talking more, and eating a regular diet now. We can even sneak in outside treats! It is fantastic to see the return of the appetite! He will need to gain some lost weight, but we don't know how much. He's retaining fluid right now, so actually is about 10 lbs or so heavier than pre-surgery.
Today Donovan's wonderful surgeon, (remember "Dr. I love you" from an earlier post?) aka Dr. Ghorpade, was kind enough to show us photos taken during the transplant surgery. We saw Donovan's old lungs, all misshapen and discolored, scarred, bumpy, and totally used up. Then, there was a picture of these beautiful, pink, firm lungs inside the opening to his chest. How wonderful. And no, they didn't make me feel squeamish at all. I was transfixed by the wonder of it! How does he do it? I have no idea, but I am thankful science has improved to this point. We owe each new breath Donovan takes to this doctor and hospital.
Well, it was a teary goodbye to Amy and Stephen this afternoon, who head back to Battleford and PA, but we know we'll all be together again soon. There is talk of a visit with cousins next weekend as well. Laurier & I ventured out to a mall today to pick up new PJs for Donny, and there's talk of new slippers, because after sitting in a chair comes walking!!! Those old swollen feet will be gone in a flash! (his, not mine!).
And hey, family, I want wedding reports and soon. Photos too! What did the bridal party wear? Did Jason stumble on his vows? (the "till death" part?) How was the meal and dance??? Don't spare the details....
This week we can expect the physio people to be on Donovan's case constantly, no rest for the wicked. How exciting it will be to get him in a wheelchair and actually show him where he's been living the past two weeks!
A special thanks today to Vince & Anne Hill, your gesture of support was very touching. We miss you guys...keep a pew warm for us. And when does the class start Anne?
To Hagels and Friesens for getting Stephen to Battleford and back....wow, thanks sooooo much. You're awesome. We miss our 'baby' so much! It was great to have him here this weekend.
To all of you who continue to hang in there with us, it means the world. Each prayer and gesture is felt and appreciated. All of you are number 1 on our "praise list".
In the grip of God's grace,
Beth
ps. Could I be so bold as to ask you to pray for a fellow named Tom, who was in a near-fatal motorcycle accident? We met this lovely family in our first ICU unit, and continue to run into them all over the hospital. Incidentally, Alice, this is Danica's mom's first cousin. She also knows the Draders (our son in law's family) from church. Small world. He is making strides, but it will be a long haul for him and his family.
Saturday, September 20, 2008
28 Staples....
Counted 'em today. Armpit to armpit, spaced 1/2" or so apart. They are holding the big "clamshell" incision together, as it's officially called. We prefer "sharkbite" it's more exciting and dangerous. He'll have one impressive scar, that's for sure. Should be good for impressing the opposite sex on the beach!!! The staples will come out next week.
So, as my friend Jan said, we (I mean Donovan) is now in the Bridal Suite, a private room. How fantastic to have all my kids able to spend time freely with Donovan, no one "on the clock" counting our visiting minutes, and not limiting us to 2 at a time. Having said all that, part of our visit is spent whispering quietly while he sleeps.
Donovan is sitting up for short periods of time now, some of it in a chair, and some on the side of the bed. Woo-hoo! He stands with help, but the legs are definitely that of the newborn"bambi" variety. It will come.
So tonite, we still need to ask for prayers for a good, deep sleep...preferably without vivid and/or scary dreams for our son. He also would like to lose the "Kankles" or calves that lead into big,swollen feet. He's got about 10 pounds of fluid on him. He is also having some blood pressure issues, due to the antirejection drugs, and blood sugar that is all over the map. The continuous insulin drip is being exchanged for shots, and this should help with regulation. of the blood sugar. He's also complaining about bad, bad heartburn...is he mistaking this for incision pain? Not sure, but same location. So...a few things that God can help us "tweak" although He's been so gracious already.
On the blessing side...coughing is coming easier, we've seen a few smiles, and he's definitely living in the here and now! And no complaints of pain with any pokes, prods or procedures. Thank you God! We've bought him a P.S.P. (one of those portable playstation thingies) and he has shown some interest in that. His Ipod has been listened to .... he's coming back to his old techno self....
Blessings abound with all the visits, encouragement and prayers of friends. We love you all, and thank God daily that we are not journeying alone...
I was able to hear most of my poetry on CBC today...I think I missed the first poem only. Yes, kleenex required. Sorry about that, folks, but writing is my therapy. Keeps me out of a rubber room.
Off to do something normal for a change...watch a movie with my kids!
love, Beth
So, as my friend Jan said, we (I mean Donovan) is now in the Bridal Suite, a private room. How fantastic to have all my kids able to spend time freely with Donovan, no one "on the clock" counting our visiting minutes, and not limiting us to 2 at a time. Having said all that, part of our visit is spent whispering quietly while he sleeps.
Donovan is sitting up for short periods of time now, some of it in a chair, and some on the side of the bed. Woo-hoo! He stands with help, but the legs are definitely that of the newborn"bambi" variety. It will come.
So tonite, we still need to ask for prayers for a good, deep sleep...preferably without vivid and/or scary dreams for our son. He also would like to lose the "Kankles" or calves that lead into big,swollen feet. He's got about 10 pounds of fluid on him. He is also having some blood pressure issues, due to the antirejection drugs, and blood sugar that is all over the map. The continuous insulin drip is being exchanged for shots, and this should help with regulation. of the blood sugar. He's also complaining about bad, bad heartburn...is he mistaking this for incision pain? Not sure, but same location. So...a few things that God can help us "tweak" although He's been so gracious already.
On the blessing side...coughing is coming easier, we've seen a few smiles, and he's definitely living in the here and now! And no complaints of pain with any pokes, prods or procedures. Thank you God! We've bought him a P.S.P. (one of those portable playstation thingies) and he has shown some interest in that. His Ipod has been listened to .... he's coming back to his old techno self....
Blessings abound with all the visits, encouragement and prayers of friends. We love you all, and thank God daily that we are not journeying alone...
I was able to hear most of my poetry on CBC today...I think I missed the first poem only. Yes, kleenex required. Sorry about that, folks, but writing is my therapy. Keeps me out of a rubber room.
Off to do something normal for a change...watch a movie with my kids!
love, Beth
Info on how to listen to my Donovan Poems....
Hello Everyone,
For those of you who were asking, Laurier found a way to listen online to CBC radio....if you are out of Sask. I hope this works. I have no idea where in the hour-long program my poems will be aired. Anyway, I hope this works for you!
CBC RADIO ONE Program Guide
SoundXchange is heard Saturdays from 5 p.m. to 6 p.m. on CBC Radio One (102.5 AM in Regina, 94.1 FM and 540 AM throughout Saskatchewan). A live stream of the program can also be heard on the Internet during the Radio One broadcast.
http://www.cbc.ca/listen/streams/r1_regina.html
Coming Up on SoundXchange: September 20: From the (stylish) heart…
Juno nominee Elizabeth Shepherd and Trio played at the Saskatchewan Jazz Festival in June.
Plus Beth Gobeil brings us another stunning set of poems from the world of parenting a critically ill young man...Grad Song for Donovan.
Click on link below to listen online.
http://www.cbc.ca/listen/streams/r1_regina.html
We are off to the hospital with the family today (again), hoping to find Donovan got some sleep. Update to follow later. Happy wedding Day Jason & Jessica. Wish we were there in Yorkton with you! Love you,
Beth & Laurier
For those of you who were asking, Laurier found a way to listen online to CBC radio....if you are out of Sask. I hope this works. I have no idea where in the hour-long program my poems will be aired. Anyway, I hope this works for you!
CBC RADIO ONE Program Guide
SoundXchange is heard Saturdays from 5 p.m. to 6 p.m. on CBC Radio One (102.5 AM in Regina, 94.1 FM and 540 AM throughout Saskatchewan). A live stream of the program can also be heard on the Internet during the Radio One broadcast.
http://www.cbc.ca/listen/streams/r1_regina.html
Coming Up on SoundXchange: September 20: From the (stylish) heart…
Juno nominee Elizabeth Shepherd and Trio played at the Saskatchewan Jazz Festival in June.
Plus Beth Gobeil brings us another stunning set of poems from the world of parenting a critically ill young man...Grad Song for Donovan.
Click on link below to listen online.
http://www.cbc.ca/listen/streams/r1_regina.html
We are off to the hospital with the family today (again), hoping to find Donovan got some sleep. Update to follow later. Happy wedding Day Jason & Jessica. Wish we were there in Yorkton with you! Love you,
Beth & Laurier
Friday, September 19, 2008
Moving right along....
Out of the ICU we go....on Day 6 post transplant! Let's just put in perspective how remarkable this is, then pass all the glory on to God. As I mentioned in an earlier post, if you were "healthy" yet needing new lungs, were in the community waiting for a phonecall that lungs had come in, you could expect to be out of ICU in a week or so. Let us remember Donovan was transplanted from life support....not in any way ideal condition for surgery. But down the hall we went on day 6, first to a double room, then to the much-awaited private room. Hooray! no more "calling in" before we visit, only to be put off multiple times....
Donovan also had the "necklace" or central line in his neck removed, which makes him feel and appear much more normal.
To round out our wonderful day, Amy and Stephen joined us for the weekend! How fabulous to have the whole family living, laughing and loving together. I just want to keep them all in hug's reach forever, but I'll settle for the time we have together now. We had a lovely stroll down Whyte ave. today, in the beautiful autumn weather with golden leaves falling gently and crunching underfoot! One day, in the not too far future we'll have Donovan with us for an outing! Can't wait!
Ok, let's get to our prayer needs...Donovan's number one priority is meticulous care of these brand new "breathers".... he needs to use what we have dubbed his "slurpee machine" on the hour to keep coughing and keep pneumonia away. It one of those breathing aparatuses that makes you cough. It's tiring and painful. Let's pray it gets easier.
I had enough nerve to ask his doc today if it was too much to expect to be out of hospital all together in another couple of weeks. He replied that it would be "pushing it." But hey, we're out of ICU on day 6....so anything's possible! Let's pray it into being! Sleep for Donovan is stil a prayer need. Last nite he was plagued by nightmares, even with a sleeping pill. Let's pray against any bad dreams, and hope as well that being out of the constant stimulation of the ICU will help to this end.
Let's praise God for unimagineable goodness and grace! Donovan is much less anxious and worried today. He's happy and mellow. His siblings are thrilled to have their brother back. We just feel so blessed! No rejection or signs of infection thus far....
Ps. 23 keeps floating through my mind..."The Lord is my shepherd, I shall not want....He restores my soul.....surely goodness and mercy shall follow me all the days of my life...."
Rejoicing to be one of the Flock,
Beth
ps. For any of you that live in Sask, and are poetry fans, I have a suite of poems to be aired on CBC radio tomorrow at 5pm on the show Sound Xchange. The timing of this airing is very ironic indeed, as these poems all relate to Donovan, and come from our experience last fall when we first started talking transplant. If you get the chance, give a listen and let me know what you think. They are to be read by an actress and set to music. I think there are 6 poems in all.
Donovan also had the "necklace" or central line in his neck removed, which makes him feel and appear much more normal.
To round out our wonderful day, Amy and Stephen joined us for the weekend! How fabulous to have the whole family living, laughing and loving together. I just want to keep them all in hug's reach forever, but I'll settle for the time we have together now. We had a lovely stroll down Whyte ave. today, in the beautiful autumn weather with golden leaves falling gently and crunching underfoot! One day, in the not too far future we'll have Donovan with us for an outing! Can't wait!
Ok, let's get to our prayer needs...Donovan's number one priority is meticulous care of these brand new "breathers".... he needs to use what we have dubbed his "slurpee machine" on the hour to keep coughing and keep pneumonia away. It one of those breathing aparatuses that makes you cough. It's tiring and painful. Let's pray it gets easier.
I had enough nerve to ask his doc today if it was too much to expect to be out of hospital all together in another couple of weeks. He replied that it would be "pushing it." But hey, we're out of ICU on day 6....so anything's possible! Let's pray it into being! Sleep for Donovan is stil a prayer need. Last nite he was plagued by nightmares, even with a sleeping pill. Let's pray against any bad dreams, and hope as well that being out of the constant stimulation of the ICU will help to this end.
Let's praise God for unimagineable goodness and grace! Donovan is much less anxious and worried today. He's happy and mellow. His siblings are thrilled to have their brother back. We just feel so blessed! No rejection or signs of infection thus far....
Ps. 23 keeps floating through my mind..."The Lord is my shepherd, I shall not want....He restores my soul.....surely goodness and mercy shall follow me all the days of my life...."
Rejoicing to be one of the Flock,
Beth
ps. For any of you that live in Sask, and are poetry fans, I have a suite of poems to be aired on CBC radio tomorrow at 5pm on the show Sound Xchange. The timing of this airing is very ironic indeed, as these poems all relate to Donovan, and come from our experience last fall when we first started talking transplant. If you get the chance, give a listen and let me know what you think. They are to be read by an actress and set to music. I think there are 6 poems in all.
We're slowly become less "high maintenance"
The tubes are coming out! Well, one did anyway...3 chest tubes to go! And the epidural pain control is history as well! But don't worry, Donovan says the pain is not too bad.
There's also a big cental line into a vessel in Donovan's neck (I call it his necklace), that will be changed to a "Pik-line" in his arm soon, maybe tomorrow, which incidentally may be moving day for Donovan...out of ICU! Yay!
So, the physical healing is definitely on track, but we need some prayers tonite for all the emotional healing. As we all know, recovery from surgery always has peaks and valleys, and today was kind of a valley day. Some of the drugs in use are known for mental confusion and anxiety, and that double-edged sword was being felt today. Much reassurance was needed, as well as re-orienting to time and place. We finally made a calendar for Donovan, so he could see the timeline of his journey through the health system. I hope it will help. Donovan didn't sleep a wink last night, so this made today extra-hard. Let's all pray that today was his last in the 24-hr. marathon of the ICU.
Blessings today include praying with our son, hearing his voice thank God for his new lungs and pray for the donor family. We also felt God's peace descend on us in that little room, and, incidentally found out that his nurse today, a young fellow, was also a believer. He shared some stories of his mission trip to Africa. God is so good!
Katie was able to come this afternoon bearing ultrasound photos of "uncle Donny's" soon-to-be little niece or nephew! what a boost!
Chocolate pudding made its way into today's ever-expanding menu, as well as a cream soup. That put a smile on our son's face!
Well, it's once again way past bedtime. Thank you for all the wonderful emails and comments. You are all very special to us!
till next time.....Beth
There's also a big cental line into a vessel in Donovan's neck (I call it his necklace), that will be changed to a "Pik-line" in his arm soon, maybe tomorrow, which incidentally may be moving day for Donovan...out of ICU! Yay!
So, the physical healing is definitely on track, but we need some prayers tonite for all the emotional healing. As we all know, recovery from surgery always has peaks and valleys, and today was kind of a valley day. Some of the drugs in use are known for mental confusion and anxiety, and that double-edged sword was being felt today. Much reassurance was needed, as well as re-orienting to time and place. We finally made a calendar for Donovan, so he could see the timeline of his journey through the health system. I hope it will help. Donovan didn't sleep a wink last night, so this made today extra-hard. Let's all pray that today was his last in the 24-hr. marathon of the ICU.
Blessings today include praying with our son, hearing his voice thank God for his new lungs and pray for the donor family. We also felt God's peace descend on us in that little room, and, incidentally found out that his nurse today, a young fellow, was also a believer. He shared some stories of his mission trip to Africa. God is so good!
Katie was able to come this afternoon bearing ultrasound photos of "uncle Donny's" soon-to-be little niece or nephew! what a boost!
Chocolate pudding made its way into today's ever-expanding menu, as well as a cream soup. That put a smile on our son's face!
Well, it's once again way past bedtime. Thank you for all the wonderful emails and comments. You are all very special to us!
till next time.....Beth
Wednesday, September 17, 2008
"So you guys just decided I should get a transplant?"
....He's baaaaack! And that is how our first morning conversation began, with Donovan beginning to be more oriented to the here and now, his voice 50% stronger than yesterday.
For those of you who were following the mass emails before this blog, you may remember our journey started Aug 31, with a hospital stay in S'toon, and Donovan being air-ambulanced here on Sept 8. Sept 3, Donovan experienced a massive lung hemmorage, and that is about his last memory, as that led to his being sedated and put on the respirator. As we gently reminded him again today that he was now in Edmonton, and had been here about 9 days, he wondered if we just decided, randomly, that it was time for the transplant. Gulp! What a huge bite of his reality that was for us. We are informing him little by little of the events that led up to our double-lung miracle, but he was still in the place today of wondering what led to his lung bleed of Sept 2. The puzzle pieces will fall into place as he heals. Donovan was also a little ticked today because physio didn't show up when they said they would, and "don't they know how important chest physio is when you have CF?" We were overjoyed to tell him that his "daily beatings" ie. chest percussion and drainage were gone with his old beat-up lungs....forever!!! Yay!!! He does, however, have to do new breathing exercises, and start strengthening all of his bed-ridden muscles!!!
But honestly, "Taste and see that the Lord is good." Today was another good day...are you getting tired of hearing that? I hope not, because we are told to be cautiously optimistic, and so here is where I will vent the good stuff! How about this for openers....today was day one of a liquid diet! Juice! Jell-o! A little trouble swallowing water, but that will come. And that hand-mouth coordination is coming right along....C'mon, how many of you can get a spoon of jello to jiggle right to your mouth every time? Huh? And, are you ready for this, Donovan was told to take off his oxygen tubing...too much oxygen in his blood, upon the hourly blood gas test! Is God extravagantly good to us? C'mon, Donovan, too much oxygen? Are those new lungs bragging???Donovan commented to a doctor today, "what's happened to my dexterity?" Ok, a 4-syllable word on day 3 post-surgery? I think his noggin is doing just fine...and he was informed that the neuro-muscular block they injected him with to help with ventilation will take a while to wear off....
The days are busy in the ICU, with someone bugging the patient about every 5 minutes, IV bags to hang, physio, personal care, blood tests, all the bells and whistles to check, on and on it goes. Rest time is at a premium. The nurses are wonderful, but often stressed and tired. On our prayer list tonite is patience for us, Donovan and the ICU staff. And of course praise for his continued healing...boy, would we like to be out of ICU, but we'll wait it out....
Thanks to the Hagel's for driving Stephen to Amy to come and see us on Friday, and to Bev E. for coming to see us today from Ft. Sask. What a wonderful distraction, those adorable kids. The only problem with today's visit is it really makes me miss preschool! (And you, Laurie!)
And to all who have left wonderful, encouraging comments...thank you so much to every one of you! I am way too low-tech to know how to reply to you on this blog, but if you post your email addresses (if I don't have them) I will try to comment back, if time permits. But know that I read and love the comments. I miss so many of you!!! I want to go home!!!
So tomorrow I am to bring a mirror to the hospital so Donovan can see his "shark-bite" incision, and also his Ipod. Time to get back in touch with the world his Rip-Van-Winkled from a couple weeks ago. Should be a good day!
To my family, know that I am missing being a part of Jason & Jessica's wedding plans, but my heart is with you!
Love & prayers,
Beth
For those of you who were following the mass emails before this blog, you may remember our journey started Aug 31, with a hospital stay in S'toon, and Donovan being air-ambulanced here on Sept 8. Sept 3, Donovan experienced a massive lung hemmorage, and that is about his last memory, as that led to his being sedated and put on the respirator. As we gently reminded him again today that he was now in Edmonton, and had been here about 9 days, he wondered if we just decided, randomly, that it was time for the transplant. Gulp! What a huge bite of his reality that was for us. We are informing him little by little of the events that led up to our double-lung miracle, but he was still in the place today of wondering what led to his lung bleed of Sept 2. The puzzle pieces will fall into place as he heals. Donovan was also a little ticked today because physio didn't show up when they said they would, and "don't they know how important chest physio is when you have CF?" We were overjoyed to tell him that his "daily beatings" ie. chest percussion and drainage were gone with his old beat-up lungs....forever!!! Yay!!! He does, however, have to do new breathing exercises, and start strengthening all of his bed-ridden muscles!!!
But honestly, "Taste and see that the Lord is good." Today was another good day...are you getting tired of hearing that? I hope not, because we are told to be cautiously optimistic, and so here is where I will vent the good stuff! How about this for openers....today was day one of a liquid diet! Juice! Jell-o! A little trouble swallowing water, but that will come. And that hand-mouth coordination is coming right along....C'mon, how many of you can get a spoon of jello to jiggle right to your mouth every time? Huh? And, are you ready for this, Donovan was told to take off his oxygen tubing...too much oxygen in his blood, upon the hourly blood gas test! Is God extravagantly good to us? C'mon, Donovan, too much oxygen? Are those new lungs bragging???Donovan commented to a doctor today, "what's happened to my dexterity?" Ok, a 4-syllable word on day 3 post-surgery? I think his noggin is doing just fine...and he was informed that the neuro-muscular block they injected him with to help with ventilation will take a while to wear off....
The days are busy in the ICU, with someone bugging the patient about every 5 minutes, IV bags to hang, physio, personal care, blood tests, all the bells and whistles to check, on and on it goes. Rest time is at a premium. The nurses are wonderful, but often stressed and tired. On our prayer list tonite is patience for us, Donovan and the ICU staff. And of course praise for his continued healing...boy, would we like to be out of ICU, but we'll wait it out....
Thanks to the Hagel's for driving Stephen to Amy to come and see us on Friday, and to Bev E. for coming to see us today from Ft. Sask. What a wonderful distraction, those adorable kids. The only problem with today's visit is it really makes me miss preschool! (And you, Laurie!)
And to all who have left wonderful, encouraging comments...thank you so much to every one of you! I am way too low-tech to know how to reply to you on this blog, but if you post your email addresses (if I don't have them) I will try to comment back, if time permits. But know that I read and love the comments. I miss so many of you!!! I want to go home!!!
So tomorrow I am to bring a mirror to the hospital so Donovan can see his "shark-bite" incision, and also his Ipod. Time to get back in touch with the world his Rip-Van-Winkled from a couple weeks ago. Should be a good day!
To my family, know that I am missing being a part of Jason & Jessica's wedding plans, but my heart is with you!
Love & prayers,
Beth
Tuesday, September 16, 2008
Day 3 "I have used lungs" or Houston, we have attitude!!!
Those precious words were some of the first that Donovan quietly articulated once the tube was out and a whisper of a voice returned to him. Wanting to see "where he was at" mentally, I reminded him he was in the ICU and his double lung transplant had occurred. "Donovan, can you say I have brand new lungs?" "I have used lungs" he informed me!!! What a guy!!!
He is weak, tired, oh, so very tired, but he is breathing on his own, with only a little extra oxygen via nasal cannula (tubing to his nose). We continue to be overjoyed, but not without a few anxieties. He tends to set off alarms when he drifts in and out of sleep, which is about every 10 minutes, and has episodes of apnea, or stopping breathing. Some kind reassurances of the staff helped to allay our fears of re-intubation, but it could happen. We are to expect hurdles and bumps, but let's continue to pray for healing and strength and steps in the right direction. How wonderful to see the respirator tube out, and a male nurse today shaved his facial hair into a nice goatee!!! He looks great!
Do you remember that old TV sitcom "Malcolm in the Middle"? Well, the way Donovan is speaking sound an awful lot like the character Steve, the black kid who was in a wheelchair with some kind of breathing issue that made him speak very, very slowly and breathlessly...that's Donovan today. The back of his throat is very swollen and irritated from 2 weeks of intubation. It will be a few days till he can swallow properly and drink as well. Today was a rinse and spit day...
More from Donovan today: Mom: "There's dad Donovan, say hi to your dad." Donovan: "I can say hello myself!" Also, he has begun to cough, which is very difficult and probably painful, but necessary. He has a suction tube to help with removal of secretions from his mouth. His hand-eye coordination is not there yet, and the tube is hard for him to wield with shaky hands. Laurier noticed him making motions to his mouth with the tube and asked if he needed help. "no, just practicing," says Donny. Also, he told Katie the tube should be marked with as marker as to where he is to pick it up, so as not to put an eye out with it if he picks it up to low on the "hose" part...Katie solved this by wrapping a rubber glove around it...he thanked her and made her cry!!!
Best part of today, saying "I love you, son" and (finally) hearing "I love you too!!!" Need I say more?
Well, just this...."For I know the plans I have for you" declares the Lord, "Plans to prosper you and not to harm you, plans to give you a hope and a future." Jeremiah 29:11
Praying for a future that glorifies God...and with continual gratitude for all of you on this journey....
Beth & Laurier
ps...there is a young lady we know of in hospital who also needs a pair of new lungs...please pray for "K." and have everyone you know sign those donor cards!!!
He is weak, tired, oh, so very tired, but he is breathing on his own, with only a little extra oxygen via nasal cannula (tubing to his nose). We continue to be overjoyed, but not without a few anxieties. He tends to set off alarms when he drifts in and out of sleep, which is about every 10 minutes, and has episodes of apnea, or stopping breathing. Some kind reassurances of the staff helped to allay our fears of re-intubation, but it could happen. We are to expect hurdles and bumps, but let's continue to pray for healing and strength and steps in the right direction. How wonderful to see the respirator tube out, and a male nurse today shaved his facial hair into a nice goatee!!! He looks great!
Do you remember that old TV sitcom "Malcolm in the Middle"? Well, the way Donovan is speaking sound an awful lot like the character Steve, the black kid who was in a wheelchair with some kind of breathing issue that made him speak very, very slowly and breathlessly...that's Donovan today. The back of his throat is very swollen and irritated from 2 weeks of intubation. It will be a few days till he can swallow properly and drink as well. Today was a rinse and spit day...
More from Donovan today: Mom: "There's dad Donovan, say hi to your dad." Donovan: "I can say hello myself!" Also, he has begun to cough, which is very difficult and probably painful, but necessary. He has a suction tube to help with removal of secretions from his mouth. His hand-eye coordination is not there yet, and the tube is hard for him to wield with shaky hands. Laurier noticed him making motions to his mouth with the tube and asked if he needed help. "no, just practicing," says Donny. Also, he told Katie the tube should be marked with as marker as to where he is to pick it up, so as not to put an eye out with it if he picks it up to low on the "hose" part...Katie solved this by wrapping a rubber glove around it...he thanked her and made her cry!!!
Best part of today, saying "I love you, son" and (finally) hearing "I love you too!!!" Need I say more?
Well, just this...."For I know the plans I have for you" declares the Lord, "Plans to prosper you and not to harm you, plans to give you a hope and a future." Jeremiah 29:11
Praying for a future that glorifies God...and with continual gratitude for all of you on this journey....
Beth & Laurier
ps...there is a young lady we know of in hospital who also needs a pair of new lungs...please pray for "K." and have everyone you know sign those donor cards!!!
Monday, September 15, 2008
Day 2, "Is it tired in here, or is it just me?"
Good Evening....I will try and get this post in between yawns and stretches...and give God all the glory for a fine day 2 with borrowed lungs....
Laurier and I are still finding ourselves on red alert for danger whenever we call into the ICU to see if we can visit Donovan and get put off for procedures etc. "what procedure, what are they doing, is he ok?" These paranoid thoughts tumble through....we are still so jangled inwardly, when of course, they are just changing a line, bathing him, doing checks, etc. etc. It will take awhile, having walked through a minefield of illness and real danger. I can sure relate to those returning soldiers.....
Now for the day's health report: 2 eyes open, count 'em, both looking and blinking with interest, just not at us. There's something on the ceiling that is really holding our boy's interest! I am a little jealous, but hear from those who've been through it, that delusions, halucinations and the like take precedent over the living for a while after such major trauma. It's a little freaky, but we're getting used to it. But one precious gift from today is a crooked semi-smile, just on the corner of his lips, beside the ventilator tube taped to his mouth, a smile I asked for, a smile I got!!!
Speaking of the vent, the oxygen concentration is now a mere 25% (you and I breathe 21%) so we're close...we went from controlled to assisted, then back to controlled support, but "it's all good". They inserted the aforementioned spinal anasthetic to assist with pain control, so thought they'd give him the vent support a little longer. We're told it'll be out tomorrow or the next day. We can surely wait, but to be honest, I'm really impatient for this. Do you know how long it's been since I've seen that boy's scruffy moustache? It's been all covered with tape and tubes...nearly 2 weeks, or is it more???
What else? We've got toe wiggling, shoulder scrunching, hand clenching, one-eyebrow raising (a Donny special), many facial expressions, my least favorite of which is eyeball-rolling....I'm told to hang in there, and when all the narcotics are finally flushed out, we'll get our Donovan back....
So good to see Dave & Linda today, who know so much of what transplant is all about, also Ali, Connie R., my food-pushing (just kidding), sisters, & of course Verla...thank you all for your support....
What a beautiful day this has been! Many more days ahead on this road, and although we do anticipate a few bumps and hurdles on our journey to breathing easy, we know that as you all walk alongside, those hurdles will be navigated, and the bumps smoothed away!
Finding joy in the journey,
Beth
ps. A few prayers needed for the unjangling of those upset nerves...I'd like to NOT have cardiac failure at every alarm, bell, beep & buzzer in the ICU, and of course for Donovan's detox process. Standard prayers for acceptance of the lungs and no infection still apply. Just pray as you feel led.
Praise God with me for every comment I've heard today that says, "He's doing so well!" from those "in the know," the medical folks. We are so very, very thankful for our miracle, every minute, in the midst of our fog & fatigue. And we include all of you as part of that miracle!
Laurier and I are still finding ourselves on red alert for danger whenever we call into the ICU to see if we can visit Donovan and get put off for procedures etc. "what procedure, what are they doing, is he ok?" These paranoid thoughts tumble through....we are still so jangled inwardly, when of course, they are just changing a line, bathing him, doing checks, etc. etc. It will take awhile, having walked through a minefield of illness and real danger. I can sure relate to those returning soldiers.....
Now for the day's health report: 2 eyes open, count 'em, both looking and blinking with interest, just not at us. There's something on the ceiling that is really holding our boy's interest! I am a little jealous, but hear from those who've been through it, that delusions, halucinations and the like take precedent over the living for a while after such major trauma. It's a little freaky, but we're getting used to it. But one precious gift from today is a crooked semi-smile, just on the corner of his lips, beside the ventilator tube taped to his mouth, a smile I asked for, a smile I got!!!
Speaking of the vent, the oxygen concentration is now a mere 25% (you and I breathe 21%) so we're close...we went from controlled to assisted, then back to controlled support, but "it's all good". They inserted the aforementioned spinal anasthetic to assist with pain control, so thought they'd give him the vent support a little longer. We're told it'll be out tomorrow or the next day. We can surely wait, but to be honest, I'm really impatient for this. Do you know how long it's been since I've seen that boy's scruffy moustache? It's been all covered with tape and tubes...nearly 2 weeks, or is it more???
What else? We've got toe wiggling, shoulder scrunching, hand clenching, one-eyebrow raising (a Donny special), many facial expressions, my least favorite of which is eyeball-rolling....I'm told to hang in there, and when all the narcotics are finally flushed out, we'll get our Donovan back....
So good to see Dave & Linda today, who know so much of what transplant is all about, also Ali, Connie R., my food-pushing (just kidding), sisters, & of course Verla...thank you all for your support....
What a beautiful day this has been! Many more days ahead on this road, and although we do anticipate a few bumps and hurdles on our journey to breathing easy, we know that as you all walk alongside, those hurdles will be navigated, and the bumps smoothed away!
Finding joy in the journey,
Beth
ps. A few prayers needed for the unjangling of those upset nerves...I'd like to NOT have cardiac failure at every alarm, bell, beep & buzzer in the ICU, and of course for Donovan's detox process. Standard prayers for acceptance of the lungs and no infection still apply. Just pray as you feel led.
Praise God with me for every comment I've heard today that says, "He's doing so well!" from those "in the know," the medical folks. We are so very, very thankful for our miracle, every minute, in the midst of our fog & fatigue. And we include all of you as part of that miracle!
Sunday, September 14, 2008
Day One....this is as good as it gets! "Dr. Weikauf"
Ok, first off, everyone gets a hug! Everyone!!! Not wimpy noodle arms or a 3-back-pat man hug, but a big tight bear hug, with little animated red cartoon hearts floating all around as I'm hugging you.....That's the kind of day it's been (as Lloyd Robertson would say....)
I just found out you could comment on my blog, so I read your comments, aw shucks, are you ever niiiiiice.....thanks, people....
I bet you want some good news, don'tcha? Well, I won't keep you waiting. How about this for starters...Dr. Weikauf (post transplant care doc) said of Donovan's "Rockstar" nite (that's how a nurse described Donovan when I impatiently phoned the ICU for an update in the wee morning hours, she said, Donovan, he's a rockstar!!!) anyway, where was I? oh yes, Dr. W. said, "Day 1, this is a good as it gets!" Then he went on to describe several other less terrific scenarios that could have played out because of the very serious condition (and that's putting it in PG language) that Donny was in when he went into the OR.
The main thing today was to make sure he was comfy, I think he was mostly, and to get him off the sedation. We accomplished that! That lots for day one!!! He has many painkilling drugs on board and tomorrow will get an epidural for pain control. Amazingly, this type of pain med that is used a lot for childbirth can in this case be isolated to a few inches on either side of his clam-shell incision, which goes horizontally across his chest from armpit to armpit.
As far as getting that breathing tube out...well, we are going to go at Donovan speed for that. His comfort level and "numbers" will let us know when he is ready to be extubated. The respirator today was on the lowest possible setting, but it was controlling Donovan, whereas tomorrow we want it to be only assisting, and then we hope to fire the thing shortly after and have Donny do the whole breathing thing on his own! Sound like a plan? We hope so....
Yes, I do get my hyper-ness out on this blog. But seriously, I spent a lot of time today trying to wrap my head around our situation...a lot of time I'm sure looking like I was the one on drugs....and I think I may feel like this for some time. So if any of you see me with a glazed-over post-traumatic stress disorder look on my face, aimlessly wandering the halls of U of A...well, that's just me....for a while anyway.....
On a side note...I have the world's most amazing husband, and yes, I now know for sure (I've always suspected) I'm darn lucky to be his wife. He has held up and held me up unbelievably through our roller-coaster....Of course he's also cased the whole hospital and made mental notes and verbal ones on how the whole joint could be better run, including improvements to personnel, machinery, useage of available space ...you have to truly know Laurier to appreciate this. What a guy!!!
Ok, now I'm just rambling. But I'd like to leave you with this ( a fave of my family, that's been in my head all day)... Psalm 103: 2-5 "Bless the Lord, O my soul and forget none of His benefits, who pardons all your iniquities, who heals all your diseases, who redeems your life from the pit, who crowns you with lovingkindness and compassion, who satisfies your life with good things, so your youth is renewed like the eagle's.
Soaring with Eagles.....Beth, Laurier & Donovan
ps...a few prayers to get off the respirator...can we do it troops? Thanks!
pps. So nice to see Chantal, Kaylee & Shenoa who drove in from S'toon. Thanks guys!!! (and mind that speed, Chantal). You are so loyal. Love ya!
Roger, Joan & Julie, you were the hands and feet of Jesus to us when we needed you most...you were there! We love you and will miss you. It's only 2 hrs away, Julie!!!
And to my sisters, Jewel & Ghislaine...what can I say....thanks to West Jet for getting you here...and to you for feeding me and getting me through. I love you
till tomorrow,
Beth
I just found out you could comment on my blog, so I read your comments, aw shucks, are you ever niiiiiice.....thanks, people....
I bet you want some good news, don'tcha? Well, I won't keep you waiting. How about this for starters...Dr. Weikauf (post transplant care doc) said of Donovan's "Rockstar" nite (that's how a nurse described Donovan when I impatiently phoned the ICU for an update in the wee morning hours, she said, Donovan, he's a rockstar!!!) anyway, where was I? oh yes, Dr. W. said, "Day 1, this is a good as it gets!" Then he went on to describe several other less terrific scenarios that could have played out because of the very serious condition (and that's putting it in PG language) that Donny was in when he went into the OR.
- So, today, it was wake-up time for Donovan. But it wasn't anything like, snap, ok, where am I? It was more one eyelid lifted a quarter of a mm., another eye, a 20 minute doze, repeat process while ecstatic parents repeated appeal to sleepy son to please, please, open your eyes, squeeze my fingers....wiggle your toes, earth to Donovan.....after several hours we did get both eyes simultaneously open, but only for a few seconds. The porch light was on, occupants were questionable, if you get my drift. We gently announced he was breathing with new lungs, and assured him repeatedly that he was in the best care possible and doing wonderfully. I recall the word "miracle" being tossed around like a baseball!!!
The main thing today was to make sure he was comfy, I think he was mostly, and to get him off the sedation. We accomplished that! That lots for day one!!! He has many painkilling drugs on board and tomorrow will get an epidural for pain control. Amazingly, this type of pain med that is used a lot for childbirth can in this case be isolated to a few inches on either side of his clam-shell incision, which goes horizontally across his chest from armpit to armpit.
As far as getting that breathing tube out...well, we are going to go at Donovan speed for that. His comfort level and "numbers" will let us know when he is ready to be extubated. The respirator today was on the lowest possible setting, but it was controlling Donovan, whereas tomorrow we want it to be only assisting, and then we hope to fire the thing shortly after and have Donny do the whole breathing thing on his own! Sound like a plan? We hope so....
Yes, I do get my hyper-ness out on this blog. But seriously, I spent a lot of time today trying to wrap my head around our situation...a lot of time I'm sure looking like I was the one on drugs....and I think I may feel like this for some time. So if any of you see me with a glazed-over post-traumatic stress disorder look on my face, aimlessly wandering the halls of U of A...well, that's just me....for a while anyway.....
On a side note...I have the world's most amazing husband, and yes, I now know for sure (I've always suspected) I'm darn lucky to be his wife. He has held up and held me up unbelievably through our roller-coaster....Of course he's also cased the whole hospital and made mental notes and verbal ones on how the whole joint could be better run, including improvements to personnel, machinery, useage of available space ...you have to truly know Laurier to appreciate this. What a guy!!!
Ok, now I'm just rambling. But I'd like to leave you with this ( a fave of my family, that's been in my head all day)... Psalm 103: 2-5 "Bless the Lord, O my soul and forget none of His benefits, who pardons all your iniquities, who heals all your diseases, who redeems your life from the pit, who crowns you with lovingkindness and compassion, who satisfies your life with good things, so your youth is renewed like the eagle's.
Soaring with Eagles.....Beth, Laurier & Donovan
ps...a few prayers to get off the respirator...can we do it troops? Thanks!
pps. So nice to see Chantal, Kaylee & Shenoa who drove in from S'toon. Thanks guys!!! (and mind that speed, Chantal). You are so loyal. Love ya!
Roger, Joan & Julie, you were the hands and feet of Jesus to us when we needed you most...you were there! We love you and will miss you. It's only 2 hrs away, Julie!!!
And to my sisters, Jewel & Ghislaine...what can I say....thanks to West Jet for getting you here...and to you for feeding me and getting me through. I love you
till tomorrow,
Beth
Saturday, September 13, 2008
New lungs, new life....thank you our wonderful God
10:13 pm
"Behold, I make all things new"
What a day, I keep thinking I'll wake up and this will have been some kind of dream....but it isn't!
The surgery went without a hitch. Out with the old, in with the new! I love Dr. Ghorpade! He doesn't know it, but I am officially his biggest fan!!! Thank you for saving my son!!!
At about 5:30 pm, after having been put off twice, we were permitted to see our dear son, and see the rise and fall, rise and fall of his chest, normal breathing.... a miracle. I have never in my life witnessed such silent beauty. Donovan is breathing with a ventilator, but it is very slow and quiet. No whirr of a loud respirator forcing abnormal amounts of oxygen into reluctant dying lung tissue...just a soft whisper of air.
We stayed with him and rejoiced at God's gift of goodness, his mercy to us, and then left the wonderful medical team care for him. We are so tired, beyond exhausted. There is the outside chance they will take him off the respirator tomorrow, and that would be truly wonderful, but we will accept small, baby steps in the healing direction.
Donovan will get a spinal block for pain tomorrow, and although we look so forward to seeing his beautiful dark brown eyes open, we know it will be a lot for him to take in. Can you imagine waking, having the past 2 weeks lost to you, finding you've almost died and now have had major life saving surgery???
Please stand in prayer with us against our two new enemies...infection and rejection. The immune-lowering anti-rejection drugs that Donovan will take the rest of his life have begun! Pray for a gentle easing into reality for Donny, and for control of pain.
Stand in praise with us at timing for this that was orchestrated by the hand of God for His purpose and glory...."His thoughts are not our thoughts, His ways are not our ways..."
Thank-you to you, our wonderful transplant journey family. You are all fabulous instruments of our Glorious God!!!
More from a clearer, more well-rested mind tomorrow......
love,
Beth
"Behold, I make all things new"
What a day, I keep thinking I'll wake up and this will have been some kind of dream....but it isn't!
The surgery went without a hitch. Out with the old, in with the new! I love Dr. Ghorpade! He doesn't know it, but I am officially his biggest fan!!! Thank you for saving my son!!!
At about 5:30 pm, after having been put off twice, we were permitted to see our dear son, and see the rise and fall, rise and fall of his chest, normal breathing.... a miracle. I have never in my life witnessed such silent beauty. Donovan is breathing with a ventilator, but it is very slow and quiet. No whirr of a loud respirator forcing abnormal amounts of oxygen into reluctant dying lung tissue...just a soft whisper of air.
We stayed with him and rejoiced at God's gift of goodness, his mercy to us, and then left the wonderful medical team care for him. We are so tired, beyond exhausted. There is the outside chance they will take him off the respirator tomorrow, and that would be truly wonderful, but we will accept small, baby steps in the healing direction.
Donovan will get a spinal block for pain tomorrow, and although we look so forward to seeing his beautiful dark brown eyes open, we know it will be a lot for him to take in. Can you imagine waking, having the past 2 weeks lost to you, finding you've almost died and now have had major life saving surgery???
Please stand in prayer with us against our two new enemies...infection and rejection. The immune-lowering anti-rejection drugs that Donovan will take the rest of his life have begun! Pray for a gentle easing into reality for Donny, and for control of pain.
Stand in praise with us at timing for this that was orchestrated by the hand of God for His purpose and glory...."His thoughts are not our thoughts, His ways are not our ways..."
Thank-you to you, our wonderful transplant journey family. You are all fabulous instruments of our Glorious God!!!
More from a clearer, more well-rested mind tomorrow......
love,
Beth
New Lungs
Hi, this is Alison for the Gobeils. Right now Beth, Laurier, Laurier's brother, Katie and Kurtis should be going into the ICU to see Donovan after his successful lung transplant.
Thank God, thank God, thank God. We are celebrating!
The surgeon told us there were no times that he was worried during the procedure. The new lungs are working. Donovan is off of life support (the heart-lung machine) but still has the respirator. That should come out after he is awake in a few days. He may be awake as early as tomorrow.
As with any lung transplant, the next 24 hours are critical, so keep praying. But thank you for all your prayers today and throughout these weeks.
Everyone is very happy here.
Thank God, thank God, thank God. We are celebrating!
The surgeon told us there were no times that he was worried during the procedure. The new lungs are working. Donovan is off of life support (the heart-lung machine) but still has the respirator. That should come out after he is awake in a few days. He may be awake as early as tomorrow.
As with any lung transplant, the next 24 hours are critical, so keep praying. But thank you for all your prayers today and throughout these weeks.
Everyone is very happy here.
5hrs into the surgery....
" Delight yourself in the Lord, and He will give you the desires of your heart....."
We still feel a little like we are in the middle of made-for-TV movie special, you know, all melo-dramatic, bad actors, phony plotline etc...totally low-budget and unbelievable. "he's dying, no wait, dr's on the phone, they've located donor lungs, they're gonna do the surgery"!!!!
Except it's not a movie, and it is happening. Surgery started a 8:30 appox. It takes a long time to remove very sick CF lungs, and the transplant surgeon who also put him on the heart/lung bypass machine last nite did just that a few hours ago...then the new lungs...get this...from a 20 yr old male donor, made the scene. These are bright pink (I'm assuming ) un-sick, un-CF lungs. Custom made to order! Hallelujah!
Does it get any better.....why yes, it does. Donovan's double lung transplant in #386 for the hospital, but they have only transplanted from a heart-lung machine 4 times at this hospital. It is risky. But we are doing it, and will update you as we can.
Pray for continuing dr. wisdom, for healing, for no complicatons, for no rejection, for peace for us all....
Dancing in delight, (mostly)
Beth
We still feel a little like we are in the middle of made-for-TV movie special, you know, all melo-dramatic, bad actors, phony plotline etc...totally low-budget and unbelievable. "he's dying, no wait, dr's on the phone, they've located donor lungs, they're gonna do the surgery"!!!!
Except it's not a movie, and it is happening. Surgery started a 8:30 appox. It takes a long time to remove very sick CF lungs, and the transplant surgeon who also put him on the heart/lung bypass machine last nite did just that a few hours ago...then the new lungs...get this...from a 20 yr old male donor, made the scene. These are bright pink (I'm assuming ) un-sick, un-CF lungs. Custom made to order! Hallelujah!
Does it get any better.....why yes, it does. Donovan's double lung transplant in #386 for the hospital, but they have only transplanted from a heart-lung machine 4 times at this hospital. It is risky. But we are doing it, and will update you as we can.
Pray for continuing dr. wisdom, for healing, for no complicatons, for no rejection, for peace for us all....
Dancing in delight, (mostly)
Beth
new lungs today....??? we are hopeful....
2:30 a.m. Sept 13/08
Dear friends,
Trust in the Lord with all your heart, lean not on your own understanding, in all your ways acknowledge him, and he will direct your path....prov 3: 5-6
This is an email I've been anticipating and dreading. As posted earlier, Donovan had a very rough day and was very unstable for most of it. Sats were running low, C02 high, a bad situation.
By late this evening, we were holding out little hope for his recovery, or to become stable in time for lungs. I've been feeling so sick with anxiety at the hospital, that this evening Laurier's brother Roger went with him as he had planned to help with evening physio. Things were bad on arrival. Discussions were held whether to begin life support, a machine to clean the blood, oxygenize it and return it to the body, since Donovan's lungs are failing so rapidly.
He came home with this devastating news, and we all fell apart with grief (especially me). Katie came in from her home in Leduc, and we contacted our other kids, trying to decide if they should join us, or wait it out at home.
One phonecall later, and there is talk of a possible donor being assessed. Laurier & Katie went back to the hospital, and the doctors explained as they were moving Donovan to the operating room, that coming in for a transplant from home has become routine surgery, transplanting from the ventilator is a little more serious, but they have done it in the past, but transplanting from a life support machine, is no longer routine or somewhat serious, it is major. Lots of risks....
The good news is, the lungs will arrive early in the a.m., and are a match for our Son. Praise God!!! There is a small chance these dr's may reject them, but it is slim.
The surgery is set to begin at 8-10 am and last at least 6 hours.
Ok praying people, on your knees, go!!!! Let us pray all day tomorrow for wisdom for these specialists, a night with no crisis for Donovan, and a fresh chance at the breath of life. Spread this around the world, we need it. This may be and probably is his very last chance for recovery....
My heart is in my throat, I feel I have been through every describable emotion, but the ride is not stopping here...there is tomorrow to think of.....
pray for peace for us as we wait here and Amy in Saskatoon, Stephen in Prince Albert. For Roger, Joan & Julie who are grieving and hoping with us tomorrow. For our mothers, and other relatives....we need peace and calmness.
For the surgeons as they do this very complicated, life-saving surgery, for God to supernaturally equip them . For an uncomplicated as possible surgery.
For strength for Donovan, peace in his heart, for healing and rest...good blood pressures, everything stable as it can be.
Pray as God leads you on this day of days.....it may be the best day yet for Donovan!
Dear friends,
Trust in the Lord with all your heart, lean not on your own understanding, in all your ways acknowledge him, and he will direct your path....prov 3: 5-6
This is an email I've been anticipating and dreading. As posted earlier, Donovan had a very rough day and was very unstable for most of it. Sats were running low, C02 high, a bad situation.
By late this evening, we were holding out little hope for his recovery, or to become stable in time for lungs. I've been feeling so sick with anxiety at the hospital, that this evening Laurier's brother Roger went with him as he had planned to help with evening physio. Things were bad on arrival. Discussions were held whether to begin life support, a machine to clean the blood, oxygenize it and return it to the body, since Donovan's lungs are failing so rapidly.
He came home with this devastating news, and we all fell apart with grief (especially me). Katie came in from her home in Leduc, and we contacted our other kids, trying to decide if they should join us, or wait it out at home.
One phonecall later, and there is talk of a possible donor being assessed. Laurier & Katie went back to the hospital, and the doctors explained as they were moving Donovan to the operating room, that coming in for a transplant from home has become routine surgery, transplanting from the ventilator is a little more serious, but they have done it in the past, but transplanting from a life support machine, is no longer routine or somewhat serious, it is major. Lots of risks....
The good news is, the lungs will arrive early in the a.m., and are a match for our Son. Praise God!!! There is a small chance these dr's may reject them, but it is slim.
The surgery is set to begin at 8-10 am and last at least 6 hours.
Ok praying people, on your knees, go!!!! Let us pray all day tomorrow for wisdom for these specialists, a night with no crisis for Donovan, and a fresh chance at the breath of life. Spread this around the world, we need it. This may be and probably is his very last chance for recovery....
My heart is in my throat, I feel I have been through every describable emotion, but the ride is not stopping here...there is tomorrow to think of.....
pray for peace for us as we wait here and Amy in Saskatoon, Stephen in Prince Albert. For Roger, Joan & Julie who are grieving and hoping with us tomorrow. For our mothers, and other relatives....we need peace and calmness.
For the surgeons as they do this very complicated, life-saving surgery, for God to supernaturally equip them . For an uncomplicated as possible surgery.
For strength for Donovan, peace in his heart, for healing and rest...good blood pressures, everything stable as it can be.
Pray as God leads you on this day of days.....it may be the best day yet for Donovan!
Friday, September 12, 2008
September 12,08
Today is a tough day. Donovan "Decompensated"overnight,meaning he couldn't get enough oxygen in his blood. They had to do an emergency bronchoscopy,so now he is recuperating from that. He also will have another one today,to check the amount of secretions in his lungs. They feel that the sedation necessary for him to be on the respirator is not allowing him to clear his lungs. He may need daily "bronchs". The transplant doc is telling us to be hopeful for lungs, and that he is the number one priority for transplant in the hospital.
They may do a "trach" tube on Monday, as this is easier to access for airway clearance,and he may need it anyway after the transplant, till the new lungs "kick in". He also got a new line in his neck vein, as they couldn't put all the needed meds in his old port.
Donovan's neighbor and friend Alison Starks came to visit today. She goes to university here, so that was a welcome bright spot. Also, my friend Annette Stevens who I haven't seen for ages came to visit with her daughter on her way to Red Deer. These visits are welcome distractions and keep me sane!!!
Looking forward to seeing Joan & Roger & Julie, Laurier's brother & family this weekend.
Still feel like we are hanging on for dear life....our son's and our's. We know you are all praying and feel your support and prayers.
The serenity prayer comes to mind....God, give us the grace to accept what we can't change, courgae to change what we can, and the wisdom to know the difference.
Prayer list: Brand, spankin' new lungs (or slightly used,but still in good cond'n) as soon as possible!!!!
A much better night! No de-satting, (low oxygen levels)!!!
We now have a fungus to fight in addition to the usual bad-guy bacteria, so let's pray for the antibiotics to kick in full force!!!!
Strength to continue, minute by minute, hour by hour day by day....when the nerves are frazzled and all the news is bad.
Thank you/blessings....a great, convenient place to stay, my friend Verla's. A reduced rate parking pass, to offset enormous costs of "the big city"
support from our great medical team....and of course, all of you, friends & family, helping us feel we're not alone...
The blessings of a God who created the entire universe out of nothing, as well as every cell in Donovan's complicated body....That we know God personally, and that "He cares for us...."
Asking him to bless all of you.....
Beth & Laurier
They may do a "trach" tube on Monday, as this is easier to access for airway clearance,and he may need it anyway after the transplant, till the new lungs "kick in". He also got a new line in his neck vein, as they couldn't put all the needed meds in his old port.
Donovan's neighbor and friend Alison Starks came to visit today. She goes to university here, so that was a welcome bright spot. Also, my friend Annette Stevens who I haven't seen for ages came to visit with her daughter on her way to Red Deer. These visits are welcome distractions and keep me sane!!!
Looking forward to seeing Joan & Roger & Julie, Laurier's brother & family this weekend.
Still feel like we are hanging on for dear life....our son's and our's. We know you are all praying and feel your support and prayers.
The serenity prayer comes to mind....God, give us the grace to accept what we can't change, courgae to change what we can, and the wisdom to know the difference.
Prayer list: Brand, spankin' new lungs (or slightly used,but still in good cond'n) as soon as possible!!!!
A much better night! No de-satting, (low oxygen levels)!!!
We now have a fungus to fight in addition to the usual bad-guy bacteria, so let's pray for the antibiotics to kick in full force!!!!
Strength to continue, minute by minute, hour by hour day by day....when the nerves are frazzled and all the news is bad.
Thank you/blessings....a great, convenient place to stay, my friend Verla's. A reduced rate parking pass, to offset enormous costs of "the big city"
support from our great medical team....and of course, all of you, friends & family, helping us feel we're not alone...
The blessings of a God who created the entire universe out of nothing, as well as every cell in Donovan's complicated body....That we know God personally, and that "He cares for us...."
Asking him to bless all of you.....
Beth & Laurier
Wednesday, September 10, 2008
September 10,'08 We're "on the list"
Hello Everyone,
Today is a landmark day in our transplant journey! About 1pm today, the transplant coordinator came in to Donovan's ICU room to say we're on the list. While I wish this was a nationwide, worldwide list...it is not. It covers Sask., Alta, and northern BC. Quebec has its own territory, as does Ont, and mainland BC. etc. If one other territory does not need its organ, they will offer it to another region.....so the wait is on.
Today's news: I called last evening and Donovan was still stable. This morning he had no fever, and was afebrile all night! Good news! I was so anxious to see him open his eyes, but he seemed to sleep right through chest physio, coughs and all. We met with the social worker who works with lung transplant, and she gave us lots of homework to do....papers, papers, papers...
Donovan was "awake" for awhile after the coordinator gave us the thumbs up for listing...he tried so hard to communicate, and gestured he wanted to write to us many times, but as yet is too weak....you can only imagine how frustrating this is for all of us! But so good to see those lovely big brown peepers of his.
So we are excited, anxious, thankful, emotional.....a little scared, trusting God, our all in all to bring us through praising his name.....hope to get all of you on this list to follow along, and one day rejoice in the gift of life for Donovan!
Today is a landmark day in our transplant journey! About 1pm today, the transplant coordinator came in to Donovan's ICU room to say we're on the list. While I wish this was a nationwide, worldwide list...it is not. It covers Sask., Alta, and northern BC. Quebec has its own territory, as does Ont, and mainland BC. etc. If one other territory does not need its organ, they will offer it to another region.....so the wait is on.
Today's news: I called last evening and Donovan was still stable. This morning he had no fever, and was afebrile all night! Good news! I was so anxious to see him open his eyes, but he seemed to sleep right through chest physio, coughs and all. We met with the social worker who works with lung transplant, and she gave us lots of homework to do....papers, papers, papers...
Donovan was "awake" for awhile after the coordinator gave us the thumbs up for listing...he tried so hard to communicate, and gestured he wanted to write to us many times, but as yet is too weak....you can only imagine how frustrating this is for all of us! But so good to see those lovely big brown peepers of his.
So we are excited, anxious, thankful, emotional.....a little scared, trusting God, our all in all to bring us through praising his name.....hope to get all of you on this list to follow along, and one day rejoice in the gift of life for Donovan!
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