"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!

One Step Forward, Two Steps Back...

Tyson had a good night last night and managed to get some sleep considering he's in a hospital.  Brian spent the night with him so I could sleep at home with Addisyn and Kenya.  Being Tyson's Mom takes a good night's sleep on a *good* day,  let alone a grumpy day in the hospital, so I need all the sleep I can get right now.

When I got there this morning, Brian said that he was doing so well that they removed his oxygen at about 7:30am, keeping sats stable at 88-90!  He was very chipper all morning and being goofy, playing with the bed making it go up and down, watching a lot of tv, and being a very loving character.  Convinced that the extra oxygen overnight as well as the IV antibiotics were really helping and making him healthy very quickly,  I was very hopeful that home was on the horizon already.

Since then however, things have gotten worse and not better.  I noticed some fluid retention in his hands and under his eyes, his belly was very hard and distended, and his mood ever since he woke up from an afternoon nap was absolutely horrible.  His sats also were slowly dropping back into the low 80s.  I mentioned it to his nurse several times, who showed no real concern.  (I eventually told her he needed to be put back on oxygen...there's no need for him to struggle like that when the O2 is readily available.)  Finally when his mood did not improve and I realized he hadn't peed all day, I began to get *really*concerned.  I asked them to weigh Tyson.  When he got on the scale my mouth dropped and I asked for a different weigh scale because the result was 16.8 kg!  Tyson is only 15 kg on a good day!  What does all this mean?  He is retaining fluids and needs to be put on Lasix.  I insisted that Dr Murphy come to re-assess him but was told several times that he would be back in the morning.  Once I added up how much fluid he actually drank today (over 800 mls plus) in addition to the 50ml per hour of saline they push through his IV line, I was very concerned that his body was retaining too much fluid.  At Sick Kids, when he is struggling with pneumonia, they have him on IV Lasix to help his body flush out the fluids.  So I kept insisting that Dr Murphy be notified of his input and output numbers, and that he has gained almost 2 kgs, and that he be made aware of my concerns.  At this point, I was almost ready to pick him up and drive him to Sick Kids myself!  I felt like I had to advocate for my son more than I've ever had to in my entire life.  Oh they must hate me there now, but I don't care.  I have to do what I have to do.  The nurse did end up calling Dr Murphy after I cried to her about my instincts that he needs Lasix to help him drain this extra fluid.  Dr Murphy ordered a chest x-ray and once the results were in, he made his way back to the hospital to re-assess Tyson (being a heart kid you have to be SO careful that the build-up of fluid isn't a result of heart failure as opposed to a lung issue.)  The x-ray showed that the build-up in his lungs is slightly worse than yesterday but is still in the lung area..indicating infection...but no fluid around the heart.) We had a very long chat about what I think should be done and why he was hesitant about it and such, and after some more blood work (second time today, poor screaming fellow!) Dr Murphy did order IV Lasix.

He is now peeing like a mad-man!  And my Mom is the one who will be up at night taking him pee every time ;)  She is staying with him overnight so that we can sleep at home :)

I am hoping that he has a good night with my Mom.  When we left he was having a wonderful temper tantrum but I'm certain my Mom can handle it :)   Please keep those prayers going up!

*****OK so I think I should just add that I am not trying to bad mouth Headwaters Hospital.  Most of the staff have been very pleasant and very good with Tyson and they do want what's best for Tyson.  I think today we just got stuck with a nurse who was not incredibly bright.  We had to repeat things to her a few times before she actually caught on.  And even then I wonder if she ever did catch on.  I trust Dr Murphy 100% that he knows what he's doing with Tyson :)  *****


Leanne Lodder said...

Hi Melissa! I am sorry to hear about poor Tyson. We will be praying for you tonight:). I wish I could do more for you. take care of yourself and your baby too. I will also pray for Brian and your boys to have a little more patience again and to help you out when needed. Thinking of you guys

Anonymous said...

Wow, you go girl! :)
Praying for you and Tyson and all of the family that he recovers quickly and you are all home again.

Lots of love!
Lea and Derek

Anonymous said...

Hey Milissa,
We are thinking and praying for you guys. I'm glad you stuck to your guns and really advocated for him. Sometimes people forget parents are the best guide to gauging how the child is doing. Tyson is a blessed little boy!
Paul and Krystle