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 nine 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!
my fortress and my deliverer;
my God is my rock, in whom I take refuge.
He is my shield and the horn
of my salvation, my stronghold.
Psalm 18: 2
and all these things will be given to you as well.
Therefore do not worry about tomorrow,
for tomorrow will worry about itself.
Each day has enough trouble of its own."
Matthew 6: 33-34
Tyson is doing well. He seems to be drinking an awful lot! He takes 80 mls at a time, eating every 2 1/2 - 3 hours round the clock! Brian has been VERY helpful and even gets up for one of his feedings in the middle of the night. One of the advantages of bottle feeding, I was beginning to think there weren't any at all! I might as well take Brian up on his offer while he is on holidays, because once I am nursing Tyson, it will all be up to me!
Tyson was 7 lbs 12 oz on Tuesday when the nurse came over. This morning he weighed 8 lb 4 oz....so he is steadily gaining!
He seems to be a pretty happy baby, although he is quite demanding because he is hungry so often. I've tried to give him more than 80ml each time but he often ends up spitting it up.
Right now he is squawking for some more food so I better get his meds ready, feed him, and get him (and me) into bed.
Tomorrow morning a home care nurse is coming over to have a look at his incision site. She was supposed to come on Monday morning but I asked them to come in earlier because the incision seems to be oozing a little. Nothing too concerning, but it should be looked at. We have covered it with gauze so that his clothing does not rub against it and cause discomfort.
Tomorrow afternoon Tyson is going to be baptized along with his new cousin Mikayla! We are happy that the Lord has provided for Tyson in so many ways! Excited about his big day tomorrow!
That's all for now,
"Your love, O LORD, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the mighty mountains,
your justice like the great deep.
O LORD, you preserve both man and beast.
How priceless is your unfailing love!
Both high and low among men find refuge
in the shadow of your wings."
Psalm 36: 5-7
YAY! WE ARE HOME!
The LORD is my strength and my shield;
indeed, he who watches over Israel
The LORD watches over you,
the sun will not harm you by day,
The LORD will keep you from all harm
the LORD will watch over your coming and going
"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."
Today was another AMAZING day with Tyson's progress! This morning the nurses took out the arterial line in his leg and I also got to give him a bath. He actually is wearing clothes now too since he is no longer in the bed with the overhead heater but in a "real" crib now. We started bottle feeding him too! Once he can comfortably take at least 2 oz from a bottle, they will also take out his Ng tube. For now, he is taking about 1 oz at a time and the rest goes in his Ng tube. I am spending only 15 minutes at a time giving him the bottle, and then the rest will go into his tube. This is because they do not want Tyson burning too much energy on sucking and then he won't be interested in the next feeding.
This morning Vicki and Melissa W came to visit and they also took me out for lunch. It was nice to see them again. This afternoon Brian's parents came with Tante Hanna for a visit. This visit was a lot shorter than we had hoped for, since Brian's Dad helped me move things from my hotel room. I didn't get to see much of Mom or Tante Hanna but I am thankful that I got things moved out of my hotel room.
The plan as of this morning was that I would move directly into a private room with Tyson and skip the "Step Down" room altogether! This was because Tyson has made so much progress in the last 48 hours and he has pretty much done everything that he needs to do in Step Down (getting rid of tubes, introducing bottle feeding, etc.) But as of now, because of staffing issues, we will be moving to Step Down after all. This means he will be in a room with three other babies before moving into our own private room. I haven't checked out of the hotel yet because I know that there are always little glitches along the way. I didn't want to be left without a place to lay my weary head! So I will most likely be spending one more night in the hotel, it just means I have to take some minimal things with me since we moved everything over to the hospital already! LOL There is a possibility that there will be a place for me to stay on the fourth floor but nothing is ever known for sure until later in the evening.
sing praises to our King, sing praises.
For God is the King of all the earth;
sing to him a psalm of praise."
Psalm 47: 6,7
I am just FLYING today! Things are progressing so well that we may be headed for the much-anticipated fourth floor by as early as tomorrow!
This morning when I came in to see Tyson he was back in the headbox. The CPAP was really annoying him and he had quite a fussy night. He couldn't settle down into a deep sleep so they took him off CPAP and put him back in the headbox. He is doing well there and there doesn't seem to be any reason why he should need to go back on CPAP.
I had a look at the x-rays of his lungs that they took early this morning and guess what?!?! The fluids are disappearing and his left lung is back to normal again! So excited for this step in his recovery. Looking forward to moving up to the fourth floor soon!
Also, once the fluids are totally gone and stay gone for a while, there is no reason why he should need to continue on the portagin so I will definitely be talking to the head Dr. again about putting him back on breastmilk. He is too skinny and they need to fatten him up some more.
They've also finally increased his feed again....for a baby who was being breastfed prior to surgery and getting the exact amounts he wanted, to going with small amounts of portagin, he was quite hungry. I kept telling the nurses that they need to increase his intake because he kept chomping down on his soother...but I guess they can't increase it too quickly especially with fluid in the lungs, for fear that he might asperate. So they are increasing the quantities a little quicker now, and soon should be back up to the minimal requirement of 2 oz. Personally I think he needs even more than that (based on what my other babies ate at this age) but we have to wait and see how his tummy tolerates that first. This afternoon he was given 45 mls (an ounce and a half) and he had that digested within no time!
"I will say
of the LORD,
"He is my refuge and my fortress,
my God, in whom I trust."
Although it was difficult to leave Tyson in the morning, it was just as difficult to leave Orangeville again at night. Our hearts are being torn in many directions. When we saw Tyson in the morning, he had just been suctioned, and he was very upset and working extremely hard to breathe. (As you know, he was extubated on Friday evening and has been working very hard to breathe ever since.) They told us in the morning that if he continued to work that hard, they might have to put him on CPAP. CPAP still allows Tyson to do all the breathing on his own but it gives him an extra "whoof" during each breath. It's kind of like sticking your head outside a bus while it's moving....!
When we visited Tyson again on Saturday night, he was on CPAP because there had suffered a slight lung collapse in his left lung. (not even the lung we were concerned about in the first place!) He was breathing peacefully on CPAP and as long as he does well and his saturations stay constant, he will not likely need to be re-intubated. The nurse says that many children need to be on CPAP after being extubated and even 35% of children need to be re-intubated.
This morning Tyson was still breathing very comfortably. There doesn't seem to be talk about re-intubation (*phew*) because he is doing so well on CPAP (according to the nurse he is 100% better than last night.) (And yes, I got to hold him! That felt sooooo good!) This afternoon after church we saw him again and the nurse mentioned that he had a rough afternoon because he is very annoyed with the CPAP in his nose. The plan is to take off the CPAP sometime during the night and put him back in the head box to see if calms down. They also gave him a small dose of a sedative to calm him down. (Where did he get his temper from?)
Tyson has also been taken off of morphine by IV but they have been giving him small amounts of morphine (or a form of morphine) directly into his NG tube (feeding tube - NG tube is nasogastric tube.) The blood pressure medication he had on IV has also been discontinued and is being given by NG tube too (called captopril). These are all steps to making it more possible for him to go to a Step Down room. The less IVs he has, the better.
Today I waited around all day for Tyson's extubation. (Well, kinda. I had some company throughout the day too. Gerald and Michelle came in the afternoon and then Derek and Lea came at dinner time.)
Tyson had to fast 4 hours before and 4 hours after the procedure so they stopped his feeds through the NG tube at about 3 am, expecting him to be extubated early on in the morning. Then they decided to give him a blood transfusion first so that his heart didn't have to work so hard after the extubation and he could concentrate on his breathing more. That takes two hours to complete. So he should have been ready to have the breathing tubes taken out by about 3pm but the Respiratory Therapist didn't come in till after 5:30 pm. Long story short, he was extubated just before 6 pm and put in a "head box" to get some moist air into his lungs so they don't dry out. This should be gone by morning and I will hopefully be able to hold my son!
That's all for now!
Tyson in the headbox
(Please excuse the stupid placements of these pictures, this blog is really ticking me off! Every time I move something where I want it and then hit "save", it does it's own thing once I publish it!)
I had Marg (G) and Jenn VdS come down for a visit today. Then later Ed and Gwen came in after visiting with Ed's Dad. In the evening, Rob and Anne came over as well as Robert. It is so nice to have company, especially with Brian back in Orangeville. However, I am now going to have to start writing things down in my notebook because I totally forgot about Rob and Anne coming! I was on my way down the stairs to meet Robert at 7:30 and Anne just happened to be sitting there.....apparently we had made arrangements with them to meet at 7 pm but I must have totally forgotten! Good thing I was at least counting on Robert's visit, or else Rob and Anne might not have found me! (If this ever happens in the future, go to the CCCU on the second floor and have reception buzz Tyson's room to look for me. If I'm not there, I am on the computer on the fourth floor - in the Cardiac Diagnostic Unit! LOL)
If anyone wants to get a hold of me please call Brian or Karen VS for my hotel numbers.
So that's my update for today. In your prayers tonight and tomorrow, please pray that Tyson's extubation goes well and that he can breathe strongly on his own, and that his lungs stay clear. I am a little worried about a lung collapsing but realize God is still in control of those things too!
When I visited Tyson this afternoon, the nurse said yes, they would be taking him to IGT (Image Guided Therapy) tomorrow to have the chest tube re-inserted so that the fluid could drain. So nobody really knows for sure what is happening. I am supposed to be meeting with one of the doctors later this evening to figure out for sure what is going on.
The problem is a bit of a vicious circle. If Tyson was off ventilation, he could excrete the fluid better himself by coughing it up, etc. But they don't want to exubate him until they know what the fluid is. So it seems kinda like nobody really knows how to move forward until Tyson figures out what he is going to do about it. The ventilator is still turned off, while being on CPAP support mode (Tyson initiates all breathing on his own while the machine just supports him.) When they tried to turn his PEEPS down this morning, (please don't ask me to explain that one) he wasn't ready for that yet, so they had to keep him on support mode. Basically it looks like it's going to be a waiting game until Tyson can either cough up that fluid or figure out how to breath completely unsupported. So we have to patient. I know that Tyson will figure it out when he is good and ready. Once he is off ventilation, I can hold him again. But I have to be patient.
The doctors lean towards the fluid being lymphatic fluid, caused by a small nick in one of Tyson's lymph nodes. It is possible that during the surgery one of his lymph nodes were nicked and they are now leaking into his lung. If this is the case, it wouldn't mean long-term effects for Tyson since it would most likely heal itself in 6-8 weeks. BUT.... it would mean some more emotional effects on ME, because Tyson would not be allowed to have any breastmilk until after that time, since the fat in breast milk can affect the healing of the lymph node. This is a bit upsetting for me right now, but I am going to have to learn to be patient! Pumping is still going ok but of course, it's more effective and certainly more rewarding to actually be nursing a baby, not a pump! It is hard for me since there is nothing I can do for my son at this time except possibly provide some nutrients and nourishment but I can't even do that right now! And it's hard having him still on ventilation and possibly another chest tube, because that means I still can't hold him! It's hard....I have to be patient....but I had opportunity to squeeze my older two boys extra hard today!
We had a great visit with our boys again. They were thrilled not to have to go to school today since they got to meet the Toronto Maple Leafs!!!!! There are some pics below of some of the players, Kaberle and Kubina for sure and I have no idea who the other one was.....Brian told me but I forget who it is.
Brian thought it was pretty cool too! Once while they were in the elevator, Brian's Dad nudged him and said, "You better behave now!" And Brian turned around to see Ron Wilson smiling away at him! Oh what a fun and busy day!
Speaking of busy, Brian and I were also busy moving our things from the hospital parent room to the Days Inn on Yonge and Carlton. I got a phone call from Ronald McDonald House today who said that our name has been moved to the top of their waiting list and in the meantime, we can enjoy a complimentary stay at the Days Inn Hotel for as long as Tyson is in Critical Care. So since we are most likely going to be bumped from the parent room soon enough (to give priority to other parents who might need it more), we decided to jump on the offer and move out. So Brian helped me move everything over this afternoon while our kids were oogling over the Maple Leafs (although I am sure Brian would rather have been there!) The room includes two double beds and a tv, so if we wanted to have our kids stay over night with us sometime, we have that option. It means I will be walking to the hospital in the morning and back again at nights, but I like the idea of having a bed to sleep in (as opposed to a pull-out couch) and my own bathroom and shower, my own fridge, and I will have a tv to watch for those nights that I might have trouble sleeping. There's also a pool and hot tub, etc there so if we had the kids over one weekend they could enjoy that as well. We are hoping not to be here too much longer and then be in a room on the 4th floor with Tyson, at which time we would have a bed, tv, bathroom, etc. But again, we have to be PATIENT!
I was talking with Keith today (remember the Christian couple we met whose son had the same surgery as Tyson 6 months ago) and he says there is a way they can still feed Tyson breastmilk called an EBM study. It basically involves skimming all the fat from the breastmilk and giving it to them that way, then they still get the nutrients and antibodies from their mother. This protagin stuff they give instead does not really put fat on their bodies like breastmilk can. So I will talk to the head dietitian Sara Farmer sometime tomorrow about that. Another waiting game.....
That's all for now,
My help comes from the LORD,