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!

Day Six Post-Fontan

The roller coaster ride continues. Yesterday we were soaring high with the news that the JP drainage was chyl negative and we could be going home just as soon as they found the right Coumadin dose for Tyson.
Today during doctor's rounds, I hounded the cardiologists a bit for answers as to why Tyson's sats are still lower than "normal" post-Fontan. I am concerned that because the Coles procedure didn't go 100% as planned, this may affect his long-term energy levels and overall health once we're home. Understandably, I am concerned about the lower than normal O2 sats. So I asked them about his hemoglobin levels: does he need a transfusion? What about the albumin levels: losing all that blood in the JPs would decrease the protein in his blood. Will an albumin transfusion improve his sats? Are his small pulmonary veins contributing to the low sats? While I was drilling the cardiologists with my 21 questions, I inadvertently found out that the chyl test done yesterday was not completed properly and they would have to send the drainage away again today for more accurate results. Apparently when deciding whether or not to treat a patient for chylothorax draining, there are three levels that need to be tested and considered: triglycerides, lymphocytes, and chylothorax microns. For some reason, they didn't test for the chyothorax micron levels, so it is not 100% confirmed that Tyson is chylothorax negative. Because there is still a fair amount of drainage, even after taking off the suction effect of the JP drains, they want to re-test all three levels to be sure they can send us home with the drains.

I am very disappointed with this news. But we're hoping and praying that the results will still confirm that Tyson is chylothorax negative.

Tyson's albumin levels in the blood are a little low, which is from a lot of blood draining into the tubes. So this morning they put an IV line in again, and they are giving him a blood transfusion as soon as he wakes up from his nap. I am wondering if this would help his sats, since they've been dipping into the mid 70s again the past 24 hours. But the cardiologist this morning says his hemoglobin is fine so that wouldn't make a difference.


I am sitting here scratching my brain as to why his sats would be lowering. His sats now are lower than they were pre-Fontan! To be sure, they won't be as high because of the fenestration which relieves some of the pressure, so there is a lot of blood passing through the fenestration. But immediately out of surgery, his sats were 92, then 85ish in Step-Down, then 80s for the next 2 days, and now the baseline is about 75-80. Since they took the suction effect off the JPs, there is automatically less draining into the JPs. This means that there is a danger that the fluid could seep into his lungs. So the nurses are constantly listening to his lungs to see if there is still good air entry. If they hear any fluid at all in there, that means his body is not draining the fluids appropriately and the Lasix is not doing its job.


So needless to say, with all the checking and re-checking his breathing to make sure he is not aspirating, do you think we got a tonne of sleep last night? Nope! Tyson was nicely settled by 9:15 am and at 10:30pm when the nurse came to empty his JPs, do vitals, give meds, etc, Tyson woke up and was wide awake until about 1:30am. He totally thought it was morning time, asking to watch tv! Once he settled again, the resident/fellow cardiologist was called in and checked his breathing a few times between 1:30 and 5am...because his sats were in the mid 70s. All that walking in and out of our room kept Brian and I both awake, and cause Tyson to sleep very restlessly all night. He basically slept from 9:15-10:30 and then again from 1:30 - 5am. Of course he was very irritable this morning. So he had a nap and was slightly happier at lunch time. Now he is sleeping soundly again, and once he's awake he will receive his transfusion.

Brian left this afternoon to go back to work for tomorrow. I am sure the older ones will be happy to see him, and thanks Mom and Dad for giving them some stability at this difficult time. Give them extra squeezes from me...and I hope they are feeling better soon!

I hope this blog post makes sense. I am working on limited sleep these days and I have fuzzy brain again :) I hope to post more underneath this blog post, later tonight when we find out more about the chylothorax results.

Please keep praying!

Mel:)

5:00pm

The nurse practitioner just came in to inform me of the test results. The chylothorax microns have come back negative. That is news we were praying for. HOWEVER, the other two levels are on the border line. Unfortunately in the medical field, not everything is black and white. I thought if it's chyl negative, it's chyl negative. But the other levels (triglycerides and lymphocytes) test for fat levels in the drainage, and if these levels are too high, they treat it with a low-fat diet anyway. Tyson's levels are right on the borderline. ARGH! Are you kidding me?

So now what? The Nurse Practitioner is not going to do any dietary changes yet at this time because there has been significantly less draining since they took the JPs off suction and let them drain naturally. The total drainage from both JPs a few days ago was over 300 mls and now it is below 200 mls total. This is a bonus which means that there MAY be an end of the draining soon. Please keep praying that the draining will STOP.

The staff cardiologist might disagree with the NP and opt for the low-fat diet anyway, so we'll wait till morning to see what he thinks. Either way, we would know in a few days whether or not we're here for the long-haul or whether they'll let us go home for Christmas.

Quite honestly, when we were preparing ourselves for this surgery, we had prepared ourselves for a long stay. We even celebrated our Santa Claus early just in case we didn't make it home in time. We've saved one big gift for each of our kids to open after Tyson returns home, that gives them something to look forward to later in December too. So being here over Christmas wouldn't totally surprise or disappoint us, since we were mentally preparing for that anyway. But going home earlier than expected is always a blessing!

This afternoon Tyson is much happier than he was this morning. He had a decent nap this afternoon, and is now confined to the bed for a few hours until the transfusion is complete. (He's happily watching tv while I type up this update from our own room...thanks to the laptop I am able to borrow from Avertex! Thanks Jason and Grant for arranging this for us :) I can tell in Tyson's eyes that he is still exhausted from the lack of sleep last night, but hopefully he has a better sleep tonight. The Nurse Practitioner said they won't have to interrupt his night with vitals every 6 hours tonight since he is doing well. The sats are back up to 83-84 this afternoon. It is beyond me why the sats are fluctuating so much! I don't think anyone really has answers for that one.

Brian and I are both so encouraged by the prayers going up from all over the world. It brings tears to my eyes to think that there are people everywhere praying for Tyson and for us; friends and family in British Columbia, Manitoba, the United States, Australia, Holland, and England. And many of these people we've never even met! God is so good, all the time! We are so thankful for a wonderful communion of saints and for the people who consider themselves "prayer warriors." So, in case we haven't said it enough yet, thank-you for your prayers! THEY ARE WORKING!

Mel:)

3 comments:

Aukema Family said...

Will keep praying for sooooo many things, a negative test result, better sleep for Tyson and YOU, always in my thoughts and prayers...
"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God"
Hey is there a number i can call you at during the day / afternoon when Ty is sleeping one in which i pay not you :)
It was a glorious snow day here today, lots of snow and blowing. Looks like another one on the way for tomorrow :)
Please tell Brian if he's coming home at all he's more than welcome to come here for supper, ANYTIME !
Prayers go up, blessings come down ♥ Teresa

Joanneke said...

And we will continue to keep praying. That is the only place we can go to for help, and we have complete confidence that our heavenly Father will give you all you need from moment to moment, day by day.

Henry and Jules said...

For someone with a fuzzy brain you sure have your medical terms downpat ;} We will continue to pray for you all...We are so thankful that you continue to TRUST, TRUST, TRUST...and we will pray that God will bless you all with peace and strength. God bless Melissa.