Busy morning?

Just a quick request for prayer. Timmy's G-tube came out this morning. We have put it back in, but it needs to be evaluated before we can continue feeds. This probably means a trip to Rochester this morning. Not much time for updating, but prayers are appreciated.

Good morning!

Some more of the many faces of Timmy.

*disclaimer* I know there are weird shadows, but if I use flash he closes those big beautiful eyes. :)

A friend from church gave him a monkey rattle last night. He's still getting the hang of it.

For some reason, I can't stop taking pictures.

Because his face keeps changing.

It is different between when I hit the button and the camera takes the picture.

But they are all good.

Those were all taken less than a minute before he had a coughing fit and went into his severe distress mode. Hacking, struggling to breathe and everything. It only lasted a few minutes and he was back to being calm for the last two pictures.

How is Timmy Doing?

Yes, we know the big question everyone is wondering and praying about. 

"How is Timmy Doing?"

This is an easy question to answer, and a hard question to answer. Sometimes, Timmy acts well, feels well, and smiles a lot. But even in that, a little congestion or mucus in his throat throws him for a loop and he struggles to breathe and he hacks and coughs and sounds like he is dry heaving. 

Then there are days where something seems off. This week, he wasn't wetting diapers as frequently as normal one day. This is important because if he is not wetting diapers, it may mean that he is holding on to more fluid, and that is a problem for patients with congestive heart failure. The fluid builds up around the heart and lungs and makes it harder for the heart to work and harder to breathe. At the same time, his oxygen sats were going down much lower than normal, and he was panting more. If one thing gets thrown off in his balance of medicines, feeds or how his body is tolerating them, it throws a lot of other things off.

This week's medical imbalance seems to have been related to gas issues, and have been resolved. Timmy is back to being active and content most of the time. All the while, we keep finding out how many things we still don't know about caring for a child like Timmy. The steep learning curve continues. So we continue to ask questions (even ones we have asked before and didn't absorb the answer well), and continue to adjust in little ways to help Timmy out.

We are thankful for each new day and each new smile and strange look that Timmy gives us. 

Off to the Doctor today

We weren't scheduled to see a doctor in December, but Timmy's G-tube stitches are causing some inflammation, and probably should be removed. We thought we heard the stitches were dissolvable, but at this point is is clear they aren't. It has made him a bit fussier over the past couple of days, so we asked the visiting nurse yesterday, and she told us she needed a doctor's approval to remove the stitches. So we needed to make an appointment. So, hopefully the stitches will come out today and Timmy can rest a little easier.

He slept better last night than he has been with the help of some ibuprofen, so we are hopeful that the trouble sleeping has just been because of discomfort from the stitches.

He is up over 11 pounds as of his weigh-in yesterday, and continues to look well, and move around quite a bit. His weight is 3 pounds higher than what it was for most of his time in the hospital. His diagnosis hasn't changed, but we are still praying it does, and are thankful in the meantime for having a growing baby.

Here are the pictures!

Just follow this link to see them all!

PICTURES!

Picture 'update'

He sometimes seems a little far away.

He sometimes plays with his cannula.

He doesn't mind his occasional nebulizer treatments.

And he sleeps a lot.

Another good checkup!

He looks so good!

Dr. Kitchen said it on Monday.

Dr. Orie said it on Wednesday.

The nurse from the VNA said it today. 

They all say he looks really good. Good coloring, good muscle tone, he is really content, he moves around well, even going as far as to call him a little miracle. How else can you explain a terminally ill child with a medical 'rap sheet' that makes doctors say "Oh wow!" and "That is a complicated case," that acts and behaves more like a healthy child. His tests this week did not show any great improvement on how his insides are working, he is still in heart failure, he still has a regurgitation in the valve in his hear, he still has two good sized holes in his heart. But he is happy and healthy.

We are praying for our little miracle to turn into a massively huge miracle. (One that requires the surgeon on his case to do back flips down the hall) We are rejoicing for even the small miracles of a 'healthy' sick child. And we are enjoying all the smiles, snuggles, cooings and all the looks from our baby boy. The future isn't certain for any of us, but when we take it moment by moment, the choices are easy to make. Hold him, snuggle him, sing to him, play with him, and love on each other as a family. We are blessed.