TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

HOME AGAIN!!!!! Wednesday, May 27, 2009

Give thanks to the Lord, for He is good.
His love endures forever.
Psalm 136:1

Yay! We finally made it home yesterday afternoon. The doctors were happy with Tyson's progress so they released us. We are trying to settle back into the swing of things. Despite Tyson being awake all night in the hospital on Monday and Tuesday night, he had an OK night last night...probably because it is a bit darker in our house. He is still not as strong as he used to be and most likely will require some physiotherapy at home to rebuild his muscles. The surgery has interfered with the strength of his head and neck muscles, shoulder muscles, and pec muscles so he is not quite as sturdy as he used to be. We will also be receiving home care 3 times a week to keep an eye on his heart function (like heart rate, respirations) and the state of his incision. He is still not eating quite as much as he used to so we have to keep a close eye on that, but overall he seems happy to be home. And we are too!

Day Fourteen Post-Glenn - Tuesday, May 26, 2009

"The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song."
Psalm 28:7
Tyson is doing GREAT! Last night he was drinking well so they pulled the Ng tube. He was weaned off the oxygen today. The tegaderm tape that was used to hold down the oxygen prongs onto his cheeks left nice red rashy cheeks, and he's also had the tape on his face for two weeks from the ventilator being taped to his cheeks too. Poor boy has inhertied his mother's sensitive skin.
His PIV line came out today as well as the heart pace maker wires that they put in before surgery. He has lots of little dents and scars all over his body from lines, tubes, and wires, and his incision is healing nicely. The last time he had bigger scars from the chest tube stitches than the actual incision itself.
Last night I went to the RMHouse to sleep and apparently Tyson gave the nurse a hard time. He only slept from 12am-1am and was awake pretty much the rest of the night! He would cry whenever she left his room but when she came back he would smile and want to play games. The nurse ended up doing all her paper work and such in Tyson's room so that he would be happy. The tv entertained him for a while too. When I got here at 7am he was still awake and ready to go! He spent most of the morning awake but he did sleep the whole afternoon since they gave him morphine before pulling out the pacemaker wires. I am concerned that he is a little mixed up about his days and nights, but once we get home I am sure he wil figure it out again. The other kids will keep him awake.
I got to nurse him again and when doing a pre and post weight, we figured he drank over six ounces. Yay!
So things are looking really good and my guess is that we should be able to go home by Thursday-ish. That is if things continue to go well.
Thank you all for your prayers and support. Thanks also to Nic and Candice who came up for a visit today. It was a great to spend the afternoon with you!
Mel:)

Day Thirteen Post Glenn - Monday, May 25, 2009










"As for God, His way is perfect;
the word of the LORD is flawless.
He is a shield for all who take refuge in him.
For who is God besides the LORD ?
And who is the Rock except our God?
It is God who arms me with strength
and makes my way perfect."
2 Samuel 22: 31-33

TYSON IS IN STEP-DOWN!
Things have really started to pick up for Tyson in the past two days. As you can see from last night's blog update, he was extubated last night at about 6:30 pm. They had him in the head box for a while afterwards to give him a bit of extra help. He is doing very well and the chest x-ray this morning showed that the right lung collapse is healed! Sometimes all they need is to be breathing and coughing on their own in order to re-inflate the lung themselves.
He is now in a Step-Down room on the fourth floor! He is still on a bit of oxygen to help him out a bit and his sats are in the high 70's, low 80's.
As far as medications go, he is off the morphine infusion but will still be getting Tylenol when needed. He is still on Lasix to help him flush out fluids. But he hasn't been on Milrinone (the IV version of Captopril) for about a week now. I asked the cardiologist if this means that he will no longer need Captopril at home and he thinks it is unlikely that he will need it! So no more Enox injections and no more Captopril either! He will probably still be on Lasix for a few days after we go home but that is no big deal. It looks as if he will not be on ANY medications anymore after that!
Today his arterial line was taken out and the stitches from his chest tubes were taken out. He is still on the sats monitors obviously, and his PIV line is still in his hand, just in case he needs some meds through IV.
He drank three bottles today and I will most likely get to begin nursing him again tomorrow. As long as he drinks enough each time and he gains well, they will pull the Ng in time too.
Last night Brian and I were playing with Tyson and making faces at him and he actually laughed at us! It wasn't a very loud laugh because his throat still hurts from being intubated so long, but he was definitely laughing! Brian and I were laughing and crying at the same time when we heard this lovely sound coming from our son's mouth! It is so good to have Tyson starting to get back to normal again! (And we heard the nurses arguing over who gets to take care of Tyson last night! Either that or they were fighting over Brian, not quite sure which!)
Mel:)



Day Eleven Post-Glenn - Saturday, May 23, 2009

"I will praise you, O LORD, with all my heart;
I will tell of all your wonders.
I will be glad and rejoice in you;
I will sing praise to your name, O Most High.
Psalm 9:1,2
This is the first day since Tyson's surgery that Brian and I feel that the end is maybe in sight! Tyson's sats have continued to improve over the past two days and today they were in the mid-to-high 70's all day; we even saw a few 80's in there. This is more of what we want to see! The plan is to continue weaning him off the vent until his pressure supports and oxygen concentrations are on the lowest they can go, then they will extubate, and then we should be on the home stretch. As long as Ty continues to do well overnight and they can wean him from the vent even more, they are aiming at Sunday or Monday for extubating. We are praying for this to be true! (Preferably Sunday but that may be pushing it?!)
Once the ventilator is gone, the meds can be taken orally and so can the milk! Either bottle or breast, we are not sure yet, but I am hoping to start feeding him again as soon as possible because I am pretty sick of the "milking parlour."
Yesterday there was no update because we were pretty busy with our kids. I was able to attend Braden's Field Day and it was great for me to get out of the hospital for the day. We all spent the night at the Days Inn, compliments of the Jennifer Ashleigh Children's Charity. This morning we did some swimming at the hotel and then spent the rest of the day at Sick Kids in the Play Park and at Marnie's Lounge. My Mom and Dad visited in the afternoon and then took the brats home again later in the day.
Today we received a phone call from Ronald McDonald house and they had an opening for us! So we moved our things over to the house, which is a five minute walk from the hospital. The room has two double beds, two dressers, a bathroom, a tv, cleaning supplies, and we share a kitchen and laundry room with 4 other rooms on our floor. The kitchen comes equipped with a kettle, microwave, fridge, stove, etc. and there's also access to a barbeque on the deck. There's even a games room and lounge area on the second floor for our other kids to enjoy, with Nintendo and a big-screen tv, fooz ball, air hockey, and a computer with Internet access too! So if Tyson's stay in ICU becomes longer than we hope, we can do some groceries and have all the luxuries that we have at home. (Did you know that the Ronald McDonald House even has a school for siblings of patients that are staying in the hospital for even longer periods of time - like for organ transplants or cancer patients? Isn't that cool?)
Brian and I are very thankful for how God has provided for us during Tyson's four hospital stays so far. We've never gone without food or somewhere to sleep. Some beds have been better than others, but we are thankful for a place to lay our heads!
Today Tyson managed to wiggle out of yet another PIV line, one that they just put in last night! They use this line for his morphine drip, and to administer his two antibiotics and lasix. The nurse was going to speak with the fellow tonight to see if Tyson really needs another IV or not. Then they can stop his morphine infusion and just give him oral antibiotics and lasix through the Ng tube, and an oral form of morphine through Ng when needed. We'll find out more about that later tonight. I am hopeful that they won't have to put in another PIV line, because this means that the doctors are also admitting that Tyson is one more little step towards recovery!
That's the update for today. We would like you to keep praying for Tyson's speedy recovery and that he can move to the fourth floor soon.
Have a blessed Lord's Day tomorrow everyone!
Brian and Mel:)

Day Nine Post-Glenn - Thursday, May 21, 2009

"Peace I leave with you; my peace I give you.
I do not give to you as the world gives.
Do not let your hearts be troubled and do not be afraid."
John 14:27
Tyson had his heart cath done today. Thankfully they did not have to do any coils or stents at this time! There were no collateral veins that they could find and although the pulmonary arteries are a little small, the cardiologists do not think it is significant enough to be causing low sats. So the heart cath was completely exploratory and it ruled out any cardiac issues. I asked about the future prognosis for the hypoplastic (small) pulmonary arteries. (If you remember, Ty's surgeon Dr. VanArsdale said they might need one more surgery before he can continue on with the final Fontan surgery.) This cardiologist Dr. Benson said that it is possible that Ty might need another surgery on these arteries but it is unlikely. If he did, it would be a balloon angioplasty or a stent done in the cath lab again (so no open-heart surgery.) They will keep a close eye on these arteries with future echo cardiograms, but as long as they continue to grow as Tyson grows, they should be fine. (But we are keeping an open-mind to changes of heart/mind along the way!)
So they are thinking that the low sats are from his respiratory issues and with a combination of the antibiotics, regular physio therapy, and time, they should improve. How much time? Only God knows and we will not let our hearts be troubled about this. In His time He will heal Tyson.
So there are two respiratory issues that could be causing the low sats and it is difficult to tell which one is affecting the sats the most. The right upper lung collapse (where the pneumonia was found) is healing more and more each day. There is also the left lung compression I described yesterday. No one knows which one is causing the low sats, it will be a waiting game to figure it out and hopefully it doesn't last too long.
I asked the doctors on rounds this afternoon what the plan is for the next few days. They said that we continue with the antibiotics and physio and the sats should slowly make their way up.
This morning before the heart cath, the sats were better than I have seen them since before Ty's surgery, mid-to-high 70's. In the back of my head I thought, "Hmmm.....maybe we won't need a heart cath afterall." But it's good to rule out the cardiac issues too. Once Ty got back from the heart cath, the sats were back in the 50's, even dipping into the 30's when they suctioned and bagged him. After physio they made their way back up to the high 60's.
Ty handled the heart cath ok. He came out of the general anasthetic ok and smiled at me when he woke up. He's been very happy lately but still needs to have his hands restrained or he will try to pull the ventilator out. He's very sneaky too! He tends to hook a finger or thumb in there and not let go!
Ty also had a hearing test done this morning. We have entered Tyson into a study on babies on lasix for prolonged periods of time, as they can sometimes suffer hearing loss as a result. We've also met a lady here whose daughter suffered profound hearing loss as a result of being on gentamicin. (Ty is on gentamicin as an antibiotic for the pneumonia, and lasix as a diuretic to help him flush out fluids.) Anyway, Tyson endured an hour long hearing test which indicated that he has mild hearing loss in both ears. The audiologist was pretty sure that it is a result of congestion in his ears due to the pneumonia, and she says the nerves appear to be in tact. Hopefully his hearing comes back once the pneumonia clears up completely. It sure explains some suspicions I have had about his hearing since the surgery.
We plan to have the kids over for Friday night and Saturday. A wonderful charity called the Jennifer Ashleigh Children's Charity has given us a donation to use towards hotel accommodations. So I am sure the kids will look forward to another visit to Toronto, sleeping in a hotel and swimming at the pool. They also enjoy Marnie's Lounge, a games lounge here in the hospital. Although they cannot see Tyson until he is on 4D, it's good to have some family time, even if it's not in our own home.
Till next time,
Mel:)

Day Eight Post-Glenn - Wednesday, May 20, 2009

" '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 hope and a future."
Jeremiah 29:11
Today Tyson's team of doctors made a decision that we didn't really want them to make. He is going to the cath lab tomorrow to have a heart catheterization done. This involves intubation (that's one step done already) and a general anaesthetic. They will send a catheter in through the groin as well as the neck to look at the pulmonary arteries, and investigate how the blood is flowing, and to measure pressures.
They are basically looking for two main things that could be causing low oxygen saturations. They are trying to find out if there is blood escaping and flowing where it's not supposed to go. These are called collateral veins or vessels. If they find collateral veins, they will coil them off to stop the blood from escaping where it shouldn't go. This procedure would be done at the same time as the heart cath, using the heart catheters.
They are also trying to find out more about the narrowing of the pulmonary veins that Tyson has. (Or was it the pulmonary artery that was the problem, I don't know - that is why I need Brian there with me when they explain these things because I still don't get it all....) If they are too narrow, that could be reason for low sats. This problem can be solved by doing what's called a balloon angioplasty. They insert a balloon-type "things" into the vein and dilate it to widen it. They may also have to consider putting in a stent or two, depending on what they find with these narrow veins. If Tyson does indeed need a stent, it would involve more blood thinners.....aka Enox needles. We will cross that bridge if/when we get there.
Tyson was a happy baby again today. He spent some time in the chair again today. This morning they were going to try the t-piece off his ventilator again to see if he would be able to move forward towards extubation, but now that they have decided to send him to the cath lab, they obviously aren't planning this anymore.
If the low sats are a cardiac issue, the issue can be resolved through the cath lab and we should see an improvement in his saturations immediately.
The morning x-rays showed a small improvement but still some consolidation on the right upper lung. I know the pneumonia is clearing up nicely because Tyson has been in a good mood these past two days.
And oh yeah, the IV team had to come AGAIN to put in another line! What a little Hudini, he finds a way to wiggle those lines out.
In the meantime, Tyson is still receiving a healthy amount of breastmilk through his Ng tube, which won't come out until after the ventilator is gone. I am still pumping like crazy and very hopeful that the issues can be resolved and that I can start nursing him again soon. Tyson will not be losing weight this time around, since he is getting 110 ml (almost 4 oz) every three hours round the clock.
Even though a heart cath is not a pleasant procedure, especially considering the risks which I won't talk about, and I try not to think about, we know this will give us the answers we are waiting for. Hopefully tomorrow we will have answers and can finally move forward in Tyson's recovery.
Please pray that Tyson's heart cath tomorrow will go smoothly with no complications, and that God will give the doctors answers to our little boy's health.
Mel:)

Day Seven Post-Glenn - Tuesday, May 19, 2009

"Never be lacking in zeal, but keep your spiritual fervor, serving the Lord.
Be joyful in hope, patient in affliction, faithful in prayer."
Romans 12:11-12
Tyson had a pretty ok day. After his chest physio this morning, the physio therapist suggested we put him in this cool blue rubber chair to see if he would enjoy sitting up. HE LOVED IT! HE SMILED AT ME FOR THE FIRST TIME IN A WEEK! Vicki was there to witness the big smiles and he even gave her a few too! Tyson was also given a few toys to play with too which he seemed to enjoy.
Unfortunately he may not get to enjoy holding the toys for too long since he keeps wiggling the peripheral lines out of his hands and kicking them out of his feet. They took the central line out of his neck since it was causing discomfort and instead put two in his feet and one in his hand. But he keeps on kicking or wiggling the lines out somehow! Last night he had two lines replaced, since they both came out of his hands. So they put one back in his hand and one in his foot (his big toe, actually.) Today he managed to kick the one off his foot and the one on his hand might need to be replaced too since he somehow wiggles it out. He is a brat! The bruises from his Enox needles are finally almost all gone but now he has bruises all over from all the IV lines they keep having to put in! He's also had his hands restrained the whole time so that he doesn't yank out the breathing tube but sometimes when we let his hands go for a minute while he is getting physio or being repositioned, he sneaks his hand to his face to pull at things. And he is so quick too! He almost self-extubated today!
His chest x-ray looked better again today and the pneumonia seems to be clearing up quite nicely. The cardiologists are happy with his progress and are amazed at how much better he looks today. And he sure was happier today than most days, only crying when they suctioned him or did physio. He also was awake for a good part of the day and had good long naps throughout the day too.
His sats are still low, in the high 60's for the most part today. If his x-ray improves again tomorrow, they will try the t-piece on the ventilator again to see if he would be ready for extubation soon.
A nurse practitioner talked to me today about some of the results from his bronchoscopy that he had done yesterday (the procedure where they sent a camera into his bronchials.) Apparently one of the main airways in the left lung is compressed. This could be totally unrelated to his heart condition, he could have been born with it, OR it could have happened during surgery when the pulmonary artery was widened and the artery is now compressing against the airway. It's impossible to say for sure why he has this, but it could be a reason for the low sats as well. It's difficult to say for sure whether this is the cause, since we are still waiting for the pneumonia to clear up first. Apparently the moraxella bug is a nasty one and it can take a few weeks for the lungs to completely heal after catching this bug. So right now it is difficult to say if the doctors are more concerned about the compressed lung or the pneumonia being the cause of the low sats. I guess they deal with one factor at a time and go from there. I am trying not to look too far ahead and am praying that the sats will improve once the pneumonia is totally clear.
Till next time, please keep praying for our little guy!
Mel:)

Day Six Post-Glenn - Monday, May 18, 2009

(HAPPY BIRTHDAY KAREN!)

"The LORD is my light and my salvation—
whom shall I fear?
The LORD is the stronghold of my life—
of whom shall I be afraid?"
Psalm 27:1
Tyson is making very slow, baby steps in his recovery. Yesterday the sats stayed in the 70's for most of the day but today they sat in the high 60's most of the day. The chest x-ray this morning did show some improvement and the cardiologist is still optimistic that his low sats are due to an infection.
The results from the BAL culture swab came back positive for a pneumonia-causing bacteria. Its official name is Moraxella catarrhalis which is a bacteria that can live in the back of your throat for a long time and not cause many symptoms. It's difficult to say for sure how Tyson caught it or how long he had it, but it may have been pushed into Tyson's lungs during the intubation process. Anyway, he is on antibiotics and the "bug people" upstairs (the ones who work on the petri dishes, etc) will find a specific antibiotic that will kill this bug. Each bacteria has a specific sensitivity to a particular antibiotic and the "bug people" will figure this out and if Tyson needs to switch meds, they will switch it. Right now he is on gentamicin and another one, but a quick google search tells us that the Moraxella catarrhalis is sensitive to penicillin or erythromycin.
Tyson had a procedure done this morning called a "bronchoscopy." It involves sending a camera-catheter down his bronchial tubes to have a look around at what kinds of secretions are developing inside. This bronchoscopy didn't show anything conclusive, except that he has an infection. Tyson was sedated for the procedure so that he was not uncomfortable, but as a result he spent most of the day sleeping.
This afternoon we enjoyed a visit from my parents who dragged along three adorable children! They enjoyed a weekend camping at Valens with their cousins and they filled us in on all the exciting details! It must have been quite the weekend because my Mom lost her voice somewhere in the process. Out of practise, Mom?!
Brian is leaving tonight and heading back to work for the week and I am having some company tomorrow but if anyone is bored on Thursday or Friday, I would love some company! There's only so many Sudoku puzzles I can do! :)
Until next time,
Brian and Mel:)

Day Five Post-Glenn - Sunday, May 17, 2009

"He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint."
Isaiah 40: 29-31


Tyson's chest x-ray from this morning showed some improvement and his saturations have gone up! The sats now sit in the low to mid 70's. The respiratory therapist also tried something different on him today. It's kind of hard to explain but we will do our best. It's a t-piece tube that connects to the tubing off the ventilator. It gives Tyson less CPAP pressure but still gives him oxygen. They sometimes use this as a test to see if he would be ready for extubation. Unfortunately, because Tyson was still intubated for the process, it was almost harder for him to breathe using this t-piece, since the intubator tube still goes down his throat and it is almost like having to breathe through a straw. Tyson was also quite agitated when they tried it so he wouldn't calm down enough to let us see if he could handle this well. So after ten minutes they replaced the t-piece with the normal ventilator tubes again and will try again tomorrow. Hopefully by then his sats continue to improve and he has less secretions in his lungs.
It is difficult for us to keep seeing Tyson in this condition because he always looks so sad. Sometimes when Brian or I stand by his bedside while they give him a deep-suction (to get the secretions out of his lungs) it seems like Tyson gets more upset because he just wants us to pick him up. He gives us this look in his eyes like, "Why aren't you helping me, Mom?" He does a lot of crying too when we stand by and stroke his face, the tears are streaming down his cheeks and his face looks distressed but there is no sound coming out of his mouth.
It is hard because we remember Tyson as being a lovable, smiley guy who now does not smile at us anymore. We can't blame him much, there really is no reason for him to smile at us right now. I think he is pretty confused as to why we aren't helping him or picking him up when he cries. I did get to hold him for a while yesterday afternoon because I couldn't wait any longer. I thought I could wait until he was extubated but who knows when that will be. It is a complex process for them to move him from his bed to my arms because of all the tubes, wires, but the ventilator is the biggest obstacle. I think his nose hurts when it gets moved around too much and I am sure it is pretty sore and raw by now.
The chest tubes were removed yesterday and the central line that went into his neck was also pulled out. This is a relief because they cause a fair amount of discomfort for him too. But once that breathing tube is out, he will feel so much free-er I am sure!
We are definitely ready to see Tyson extubated and move on to the fourth floor. It is difficult to see our son like this and we would really like to have the old Tyson back again. But on the plus side, Brian and I are getting really good at Sudoku puzzles!
Until next time,
Brian and Mel:)

Day Four Post-Glenn - Saturday, May 16, 2009

"May He give you the desire of your heart
and make all your plans succeed.
We will shout for joy when you are victorious
and will lift up our banners in the name of our God.
May the LORD grant all your requests.
Now I know that the LORD saves his anointed;
he answers him from his holy heaven
with the saving power of his right hand.
Some trust in chariots and some in horses,
but we trust in the name of the LORD our God."
Psalm 20: 4-7
The text we chose for yesterday's blog update was so very appropriate for Tyson and his life right now. " Listen to my cry for help, my King and my God, for to you I pray. In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation." Psalm 5: 2-3.
When we arrived in Tyson's room this morning, the cardiologist fellow said to us, "I think we may have found something on Tyson's chest x-ray this morning." He led us to the computer where we saw the x-ray, which was very different from yesterday's x-ray. Different, but not in a good way. It clearly had progressed from bad to worse overnight and the nurse also mentioned that the secretions which they suction from his ventilator tube several times per day have gotten worse in the last 24 hours. Tyson also had a bit of a fever yesterday evening and throughout the night.
Although this may seem like pretty bad news, we are quite happy about it for one main reason: this indicates that the decrease in Tyson's oxygen saturations are most likely a result of a lung infection, and not a result of the heart surgery gone bad!
They have taken a BAL culture swab of the secretions and we will have results shortly about what the infection is exactly, but for now they are treating it as pneumonia and Tyson has been placed on two antibiotics to treat it. If the results come back to a different type of lung infection, they will change the antibiotic to something more specific for that particular bug. (Every bug has as specific antibiotic that kills it.) It is common for babies on ventilators for an extended period of time to catch what's called a VAP (ventilator associated pneumonia.) This is why they do try to extubate as soon as possible after surgery, to reduce the risk of infection. Because Tyson had failed extubation twice (once in the O.R. and once later that afternoon) and he had increased work of breathing for so long on Tuesday and Wednesday while he tried to breathe on his own, he was probably more susceptible to catching a bug because his immune system would have been compromised.
So that is what they are leaning towards right now. If a lung infection is indeed the cause of the low sats, the antibiotics should help improve his sats as quickly as tomorrow morning. Once we know for sure what type of infection it is and the antibiotics do their job, his sats should improve and he can be extubated when they feel he is ready, and he will not need a heart cath afterall.
We are praying that the infection is the cause of low sats, because then it is a simple problem with a simple solution. Having to do a heart cath means that something went wrong with the surgery and it could need to either be reversed or fixed by another surgery. We are really hoping not to have to go down that road with Tyson. He has been through so much already and it would be nice if he can continue to move ahead from this point on!
Please keep praying. God is so good and He will give the doctors answers. Until we know for sure, we keep waiting and praying and practising patience. We won't learn patience and trust if our patience is never tested. God is pruning us and moulding us into the people He wants us to be. We are so thankful for being able to rely on Him for all things!
Brian and Mel:)

Day Three Post-Glenn - Friday, May 15, 2009

" Listen to my cry for help,
my King and my God,
for to you I pray.
In the morning, O LORD, you hear my voice;
in the morning I lay my requests before you
and wait in expectation."
Psalm 5: 2-3
Another day of waiting. The settings on the ventilator were turned down a great deal overnight and it is now on one of the lowest settings possible, called CPAP mode. This basically just gives Tyson pressure support while breathing. Tyson is breathing on his own but the machine is just keeping his lungs open a little, preventing them from totally deflating so it's easier for him to take the next breath. This is the final step before extubation. However they will not be extubating in the next day or two until they can figure out why his sats remain in the low 60's.
An echocradiogram (ultrasound of his heart) was done this afternoon. They did what's called a "bubble study" which involved making bubbles in a syringe full of saline solution, and injecting these bubbles into the central line in Tyson's neck (the central line goes directly to his heart). The injected bubbles can be seen on the screen of the echo monitor. This tells the doctor where and how the blood is flowing by following where the bubbles go. The cardiologist said that from the echo report, there appears to be good "Glenn blood flow" (blood flowing from the superior vena cava to the pulmonary artery, which is what they connected during surgery) but he also said that they've been fooled by the bubble study before. Sometimes there can still be blood escaping elsewhere in the heart from another vessel, which could be causing the low sats.
The only way to know for sure if there is blood escaping where it shouldn't be going, is to do a heart catheterization. The cardiologist is a little hesitant to opt for this immediately since it is a very invasive procedure involving general anasthetic and intubation (well, he already is intubated! LOL)
So the short term plan is to wait for tomorrow's chest x-ray and see how the right lung collapse is healing. Once the right lung is 100% repaired, if the sats do not improve, then they know for sure that the low sats is NOT a lung issue but a heart issue. Then a heart cath will be done. So there will be no extubation unless the lung is 100% repaired and the sats go up. If the lung repairs but the sats remain low, Tyson will stay intubated since he would need the machine during the heart cath anyway.
Low sats are not harmful for the short term, so waiting a few days before doing a heart cath is not a big deal. However, in the long-term it can cause damage to the brain because the brain will not be getting enough oxygen. So this needs to be figured out.
So Tyson will be staying in Intensive Care for a while yet, until they can get this mystery solved.
Please keep praying that the Great Physician can help Tyson's other physicians figure out what is wrong.
Mel:)

Day Two Post-Glenn - Thursday, May 14, 2009

"Be still before the LORD and wait patiently for him." Psalm 37:7
Today was a pretty uneventful day in Tyson's recovery process. He has not moved too far forward today at all. Because he had such a terrible day yesterday, he is pretty much exhausted and he spent most of his day sleeping.
Although they have turned down the settings on the ventilator, he is still fairly reliant on it and his oxygen saturations are not very good at all. He has stayed in the low 60's all day. The only time I saw him go to the 70's was immediately after physio therapy on his lungs, which happens three times a day right now. (It involves some percussion exercisers on his chest and some deep suctioning with a vacuum-like tube to remove secretions.) The doctors are pretty baffled and have tried experimenting with the settings on the ventilator. They have turned the oxygen concentration levels up and down, experimented with the PEEP settings (pressures), the SiMH rate (resp rates) and nothing has worked to improve his sats. Sometimes it takes a few days for the body to get used to the new pulmonary blood flow as it changes the whole way the blood circulates. We just have to wait it out and if it doesn't improve in the next few days, Tyson will go for another heart catheterization. He had a heart cath done in March in preparation for this surgery. It is done in the CDIU (Cardiac Diagnostic Interventional Unit - or "cath lab") here at Sick Kids and it involves sending a catheter through his groin into the heart to measure blood flow and pressures, etc. This may tell the doctors more about why his sats are not improving.
I am feeling a little scared about this because the last time Tyson was in the hospital with pneumonia, I met a woman whose son was in the hospital for over 3 weeks because his sats were not improving and no one could figure out why. Other than that, he was healthy and eating well but he just couldn't bring his sats up so they were applying for home O2. I am really hoping that something can be done about Tyson's low sats and we won't have to resort to going home with him on oxygen.
Tyson has had a few chest x-rays today to see if maybe extra secretions are causing the low sats. The right lung collapse is almost totally re-inflated. The re-intubation helped with that, so that is one good thing about the ventilator. However, his lungs are still very wet looking and they have increased his dose of Lasix (or Furosemide, a diuretic to make him pee) they are also going to try putting him on an additional diuretic to try to get rid of some of the extra fluids. He gets 3 oz of breast milk every three hours round the clock, through the Ng tube.
So....here I sit.....waiting for a change in his condition. It sure takes an extra measure of patience since this whole time we thought Tyson was such a fighter. I'm sure he won't be intubated for the rest of his life but his recovery time may take longer than we anticipated. They won't be extubating him anytime today anymore but they will continue to turn down the settings on the ventilator overnight. If his sats are going to stay low with or without the ventilator, they might as well extubate and then figure out the problem with low sats later. I'm not 100% sure what the plan is as far as extubation, but I do know it won't be today or tonight.
Please keep praying guys. It means so much to us to have the communion of saints experiencing this with us. We could not get through this difficult time without the prayers of the people and the help of our Heavenly Father, who knows our every need even before we ask!
Take care, (and Brian: I LOVE YOU!)
Mel:)

Day One Post-Glenn - Wednesday, May 13, 2009

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1: 2-4

Today Tyson had to take a big step backwards in his progress. (Two steps forward and one step back is what he seems to like to do!)

He had a really good night last night. He started taking breastmilk by bottle and guzzled it down quickly. He was clearly hungry! We had to start him off very slowly because after surgery there is always concern that the stomache will not tolerate the food. He guzzled 1 oz of breast milk in about one minute flat. I asked the nurse for one more ounce since it seemed like such a tease to him, but I wasn't allowed to give him any more. By 1 am he was tolerating 2 oz at a time. So that was good and he seemed to settle to sleep ok.
However, Tyson had a very, very rough day. He sure had a LOT of attention today by a lot of different medical professionals. He has had someone at his bedside all day long. Usually at least two nurses as well as either a fellow doctor, cardiologist, respiratory therapist or physiotherapist. He has really struggled to breathe all day and there is a fair amount of sub-costal in-drawing on the left side and a chest x-ray this morning revealed some fluid in his lungs. (It is common for this to happen after surgery, as it did the last time too. The fellow doctor was happy with how his morning x-ray looked compared to yesterday's and he is not concerned about this fluid being chylothorax. The drainage coming from his chest tubes is also red, not the milky-white substance that would indicate a chylothorax leak. So thankfully, it does not appear to be a chylothorax leak and he can remain on breastmilk.)
But because of Tyson's struggle to breathe all day, the low oxygen saturations (he's been in the 60's all day) and the in-drawing in his chest, they ordered another chest x-ray for this evening. It showed the beginnings of lung collapse on his right lung. They have tried everything they can today to get him to breathe easier. He was on oxygen with the nasal prongs this morning, then they had to put him on CPAP to help keep constant pressure in his lungs so he doesn't have to work so hard to breathe. Then they put it on Bi-PAP mode which gives him even more support than the CPAP mode. None of these things are working for him and he continues to put a lot of effort into breathing, so now they have decided to re-intubate him. :(
As much as this is a big step backwards in his recovery, the breathing tube will allow his lungs to re-inflate. This will also give his lungs a rest overnight and if he does really well and rests up, they may even see if he's ready for extubation again tomorrow. The goal is always to take the tube out as quickly as possible (and keep it out) because the longer it's in, the greater risk of infection and the greater risk that Tyson will rely on it for breathing. So they do not really want to re-intubate but there really is no choice left. They've done everything they can to help him. It's not a decision they make easily and they have debated it back and forth all day. Tyson is kind of on the fence: if he was a little bit better they would just leave him as is, and if he was a little bit worse, they would definitely intubate. Brian and I gave them the go-ahead to re-intubate since we feel he needs the rest and he will be much more comfortable this way. We don't love the fact that he is taking a step backwards, but we also do not enjoy seeing our son work so hard and being so upset every time someone comes near him. He has been fighting all day, and every small thing is annoying him right now so his body just needs a break for now.

Tyson is also back on Ng feeds for now since they don't want him to aspirate. Now that he is being re-intubated, they will not give him any more milk until at least 4 hours after intubation. Then they will proceed with Ng feeds again. But I am ok with that, since it is my milk they are giving him and not that gross portagen like last time.
Tyson has also been given some chloralhydrate and ativan to keep him sedated, since he is very unhappy with everything going on. He is also still on morphine and they are giving him good doses of Tylenol too. He wants to pull at the wires and tubes coming out of his body and he has had a pretty cranky day. This could also be due to the changes in the direction of his blood flow to the lungs. Before his surgery, blood was flowing through the BT shunt to get to the lungs. Now that the shunt is removed, the superior vena cava is what carries the blood to the pulmonary artery, which then brings the blood to the lungs. Sometimes babies have to get used to the changes in blood flow and can experience head aches for a while after the surgery until they get used to it.
So that is the update for today. I will try to do my updates every evening between 7pm-8pm, since that is when the nurses change shifts and we cannot be in the room anyways. Brian is staying with me for a while yet this evening and then he will go back home to start work again tomorrow. There isn't much he can do here for Tyson; I am here for Tyson and Brian is here for me. But I will be ok for a couple of days on my own, since I know I am not really on my own anyway! We are reminded always that God is in control and that not a hair can fall from our heads without His Fatherly hand. Tyson, too, is in God's loving and powerful hands and we lean on Him for strength. Please keep praying!
Brian and Mel:)

Glenn Surgery Update #2

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28
Again, we marvel at the goodness of God! Tyson was extubated (breathing tube out) this afternoon at about 3 pm. He had an oxygen mask on for a few hours afterwards, but was clearly unimpressed with it. It is connected to an elastic tie that goes around his head. At one point the nurse turned her back only to find Tyson yanking at the oxygen mask and he had it pulled 6 inches away from his face with both hands! They didn't think he would appreciate it snapping back across his face, so they decided to go with the nasal prongs instead. He is much happier with this, as are we! He will stay on O2 at least until tomorrow.
Tyson is progressing well, his sats are remaining in the 70s for now. His blood pressure is a little high but that is because he is very upset and in a fair amount of pain. He is on morphine and tylenol, but hunger is also adding to his frustration. He won't settle to sleep very well but soon enough he can have a bit of breastmilk in a bottle to see how well he will tolerate that. He has had about 3 oz of water and is keeping it down but his appetite is not quite satisfied with water. They usually wait 4 hours after extubation before giving anything by mouth but the nurse allowed Tyson a bit of water because his throat was probably dry from being intubated and he was showing his temper again. Later tonight they will allow some breast milk in a bottle and if he tolerates it well, I can most likely nurse him again in the morning. (YAY!)
Tyson looks healthier post-op this time around compared to last time because he is no longer intubated and he is fully awake, no sedatives at all anymore. The more alert they keep him, the better his chances of breathing well on his own. It is difficult for Brian and I this time around too. His last surgery he was a sick baby going into surgery and a sick baby coming out. Today he was a healthy-looking baby going into surgery and a sick baby coming out. So it's hard to see our smiling happy baby now crying and in pain. But one day at a time, and he will pull through. We've experienced God pulling us through it the first time and we know He will not let us down again. He will work this for our good, and Tyson's too.
I also asked the nurse the big question, "Is Tyson on any blood-thinners right now?" And she smiled and said, "Nope!" So this means that he is no longer needing the Enoxaparin, and we will not need to give him any more needles! The mitral valve that they repaired was patched closed but it wasn't an extensive amount of patchwork, so no blood thinners are needed at this time. If they had've replaced it with a mechanical valve, then he would have needed the blood thinners.
I will leave the update at this for tonight. Brian and I are heading to bed soon (probably once the hockey game is over....) We are staying in a surgical waiting room for the night. It's a small room with two couches that can be used as beds. We are thankful for some privacy, clean sheets and a place to lay our weary heads.
Thanks for your prayers. Please continue to pray for a speedy recovery, and that the doctors don't find some horrible chylothorax leak like they did the last time. (It took me a while to get to start nursing him and I would love to be able to continue!) Please also pray that Brian and I can cope with what lies ahead in Tyson's future, as it is still unknown.

Brian and Mel:)

Tyson's Glenn Surgery

Hi all. Tyson had his Glenn surgery this morning. He went into recovery at about 11:45 am, and then he was admitted to ICU, and we got to see him at about 1:00pm. He looks good but is still intubated. They tried to extubate in the OR already (they like to push things along as quick as possible after this surgery) but he stopped breathing so they will try again later this afternoon or this evening.
When we met with Tyson's surgeon Dr. VanArsdale this morning before surgery, he mentioned that on the last echo, he noticed that Tyson also had a leaky valve in his heart that he was going to try to repair today. He wouldn't really know what he could do about it until he went in to see it with his own eyes.
After surgery, Dr. Van Arsdale reported that it was a standard second-stage Glenn surgery, and that he was able to close the leaky valve as best as he could (it is a valve in the heart that is leaking blood because it has started to split open.) Dr. VanArsdale is unsure how long this repair will hold but will be keeping a close eye on things through future echos.
We also got some unsettling news about the veins that bring blood from the lungs back to the heart. When Dr. VanArsdale was operating, he noticed that the veins are quite narrow. This means that blood may back up in the lungs and not be able to flow easily back to the heart. There might be too much blood in the lungs and this will affect his breathing. They might not be able to continue on with the Fontan surgery (the third stage surgery) until they know more about these narrow veins. Unfortunately, this may involve an additional surgery before the final Fontan surgery. Things are still very uncertain right now but we will know more when we meet with Tyson's cardiologist and when he has another echo to look at what is going on in there.
I don't understand everything right now, Brian and my Mom understand it better than me, but right now I can't process it enough to relay it any better than that. We hope to have more information at a later time.
Please keep Tyson in your prayers as he recuperates from surgery.
Brian and Mel:)