"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!

Fri. March 18, 2011

Tyson is starting to get extremely frustrated that he isn't allowed to do anything. And frankly, so is his mother. I am so claustrophobic now, it's not funny. We can't have the door open, even a crack. No opening windows, no opening doors, and poor Tyson can't go outside the room at all. (I at least can sneak out when he's sleeping to grab a bite to eat or some fresh air.) We have done all the puzzles, read all the books, blown an entire bottle of bubbles...and watched enough Treehouse to drive Mama to the nut-house!
This morning a lady visited the hospital with her dog and was letting the kids pet him. She knocked on the door and started to come in. Tyson of course was thrilled to see a "goggy!" But at the last second, the lady saw the sign on the door saying that Tyson was sick, and she immediately pulled the dog out of the room and said, "I'm sorry I didn't see the 'droplets' sign, we're not allowed in here." And she yanked her dog out of the room just as Tyson was about to pet him. She apologized over and over, but seriously, couldn't she have read the sign on the door BEFORE entering? Tears filled my eyes, realizing now that Tyson has been shafted again, and realizing that *I* have to calm him down again. I should have called this lady back and let HER calm Tyson down after not being allowed to pet the dog. I should have let HER be the one get kicked and slapped in the face because he was so upset that the dog got ripped away from under his nose. He just doesn't understand. I should have let HER try to explain to my 2 year old why he can't go out to the playroom to play, or why he can't pet a dog when everyone else can, or why he can't enjoy events going on around the hospital while all the other kdis can, why everyone has to wear a gown and mask when entering our room, and why our door remains closed tight every single second of the day and night.
Despite the fact that he is cooped up in his room, Tyson is in a better mood today than yesterday, and he seems to have a bit more energy. He is still only satting on the edge of 70. I did see a 73 and 74 today, but only while he was sleeping. When he gets out of bed to play, he sats 55-60. The nurse practitioner thinks that the reason he sats so low when active is because the blood is shunting through his fenestration, so she said not to worry if his alarms go off everytime. So now we sit on the play mat in the room with him satting 55-60 and the alarms dinging the entire time.
The NP also is going to refer Tyson to a respirologist, so we can have him assessed with regards to his "asthma" or "reactive airways" or whatever you want to call it. He coughs all winter long and always seems to have wet lungs. It's hard for anyone to really know what to do about it. His pediatricain thinks he will outgrow it when he's 4 or 5.
Tyson's "just in case" IV line plugged today, so they pulled it out :) Now he has two free hands to eat, drink, and play. I am hoping he is "allowed" to have a bath tonight now that his IVs are out.
His INR level is back down again so we can start him on coumadin again tonight. He's really not eating well at all so I'm not sure how that will go but we'll see.
It's not likely that we're getting out of here anytime soon. The NP said that Influenza A is a nasty bug to catch for a healthy person, let alone a person with single ventricle, and only one good lung. First he has to get well enough that the sats get back to where they should be (80s) and THEN he has to be weaned off the O2. Praying for patience in the meantime...
Brian is staying with Tyson at the hospital for the weekend and I am at home with my kids. (Well, not all of them, I am picking Braden and Merrick up in the morning.) It was time for a break from the hospital. I am so in love with the man I married; he is willing to do whatever it takes to make this rollercoaster easier on us all. He stayed home with the 3 older kids on Monday while I took Tyson to the hospital, then he came up to Sick Kids to be with Tyson and me on Tuesday and Wednesday, then back to work for Thursday and Friday, and now he's taking his turn with Tyson for the weekend. I will see you on Sunday babe! :)
Tyson started de-satting some more during his afternoon nap while I typed up this first update. He was sitting at about 62-64 the entire time he slept. Usually it is typical for kids to de-sat when active and to have higher sats when sleeping. Once he awoke, the sats were even worse, dipping into the 50s several times. We keep encouraging and encouraging him to cough (and bribing him with candy) but it seems like he's all coughed out. He sounds really good today, cough-wise. There doesn't appear to be much left for him to cough out. Physiotherapy on his lungs was stopped today because he has such a good cough, and he's up and moving around again. It's more important to have the physio when he's inactive and lying in bed all day.
So......why the low sats? A respiratory therapist paid us a visit and I asked why they can't just turn up his O2 from 2 litres to the 4 litre maximum? The reason is that they don't like kids under age 2 to be on more than 2 litres of O2 through the nasal prongs (castulas) because then too much air is being forced through their tiny nostrils and they can get very dry. So she suggested putting an O2 mask OVER the nasal prongs to see how his sats improve. It worked! His sats immediately rose to about 75. So now he has the O2 prongs up his nose as well as the O2 mask over his mouth and nose. Let's see how well he sleeps for Brian tonight....
So as you can see, home is not in the immediate future for Tyson :( It is possible that he can all of a sudden turn a corner and be on the mend soon...but he will be there at least another week I think.
Brian and I are trading duties again on Sunday night. I just needed a break so that I can re-group for another long week ahead.
Please keep Tyson in your prayers. And pray for patience for Brian as he entertains a two-year old all weekend :)


Anonymous said...

Dear Melissa:
That is tough, man, can't imagine having the patience and strength to go through what you are...especially when you were just hoping for a week off with your other kids. We're thinking and praying for you all often!!
MaryLynne and family

RK said...

ooooooooooh Melissa. I have tears in my eyes for you when I read about tyson... I can't imagine trying to help my little son understand why the dog couldn;t come in...why other kids are allowed to do things and he can't...why he is not allowed to go anywhere. It breaks my heart....It tortures yours and Tysons. I am so very very sorry for you and Tyson. I thought of you yesterday when I read your update. I wondered to myself, how you were doing emotionally. We moms can sometimes, if we're intuitive enough, see between the lines. You of course have the crying moments, when no one is watching...But remember, as I know you do, that God sees every tear, and knows EXactly how you feel and what your fears are. All along, and in the near future. Keep strong sweety...Ask for YOUR strength too! Praying always for you Melissa, and Brian and especially that Tyson gets well.
Love, Aunt Rita and Uncle Jerry

Aunt Rita said...

p.s. Not alot of mothers can relate to painful heart-aches such as you have....but I have been there with Eric. Can't play the sports with the boys, can't run, couldn't even do leap frong with the kids...got tired easy...My heart ached and broke time after time for what he couldn't do. And watching him as a child TRY, hurt almost as much.
But thanks be to God, our boys are strong in the Love for the Lord. No one knows their future but Him alone. In the end, it will all be ok....all ok. For we have Him to watch over us all, and knows their heart. Better than themselves.
love, Me.

Sara said...

The longest I ever had to stay with one of my boys was 9 days with no visitors, no calls, no computer...and a baby under 5 lbs that I was trying to care for with the NICU nurses.
I only have a very tiny idea of what you are going through...very tiny. Have you used up all your songs repertoire together or taught him some new ones?:-) Praying that God will give Tyson what he needs to be patient and help his Mommy since she is tired too. We continue to hold you up to the Lord. :-)

Anonymous said...

Wow ... we can't imagine what you all are going through during this difficult time. We pray for you constantly ... that God will give Tyson healing and all of you patience, wisdom and comfort. Big "virtual" hugs from all of us!

Grant, Marg ... Lindsay & Shaelyn

Anonymous said...

we are all thinking of you and your family during this time. We continually pray that you (and Brian) have the patience and strength to get you through this!!
Gerald,Michelle & Family