Friday, October 29, 2010

G-Tube/Fundo Surgery Update

baby Mason recovering from Nissen wrap/fundoplication
A little TV goes a long way during recovery...
We sure have been appreciating all the prayers coming our way ... Mason has had a kind of rough recovery, not so much from pain (they are giving him Fentanyl really often, every 1-3 hrs as needed), just because his intubation was so hard (they had to try 3 times and kind of traumatic on his throat/lungs to do he is real swollen in there and has quite a case of stridor from it (sounds wheezy/barky/loud every time he breathes, kind of similar to croup). He's had 2 treatments for it but so far they haven't done much except prevent him from sleeping (they are adrenaline aerosol "vapo" treatments). He had a very hard time sleeping afterward the entire 24 hours, even when his pain was controlled the first night--they had to keep suctioning his vent because he had a really huge and unexpected amount of secretions/saliva down in it. Of course the constant suctioning drove him nuts. He didn't sleep hardly any from when he woke up from surgery Wednesday (around 2 pm) until after I left (around 2 pm Thursday) so I was really relieved to hear he zonked out after my mom got there and slept well most of the afternoon since. He has been wearing some kind of humidity helmet/hood for the stridor but they took it off this morning b/c he wasn't a fan. Pray his stridor gets better on its own (today so far is going MUCH better both pain-wise and stridor-wise)...and that he can slowly wean off the Fentanyl without a lot of pain or withdrawal. Also, pray LOTS of protection over his is looking like it might be giving out and if it does he has to get a new one for Fentanyl and fluids since he's not up to full feeds (just on a slow drip of Pedialyte through his G-tube, but that will change to formula this evening, Lord willing). He's already had some dirty diapers so that part is great :) But if his IV dies that will be bad because he is SUCH a hard stick and there won't be much of a way to sedate him for that if his IV gives out. Thank you for praying that it holds out as long as they need it!! :)

Monday, October 25, 2010


baby Mason getting NG tube feeding if this situation hasn't been confusing enough, it just got even more so.

It turns out that at least one other person in the known universe DOES have Mason's exact deletion of 14 genes. We were kind of hoping that if someone else had ever had it, it would give us some insight to how to treat Mason better.

BUT. Not exactly the scenario we were looking for has transpired. It turns out that this one other person (at least that we know of right now) guessed it. 

ME. Myself. And I. 

That's right. His own mommy has it. The FISH blood work we had showed the least likely scenario of all--the one the geneticist said they totally did not expect at all. But of course if we've learned anything on this journey so far, it's to expect the unexpected. The geneticist expected the test to show that this deletion was brand new in Mason, in which case it was probably the reason for all his issues. Or, he expected it to show that Brian or I had all the genes Mason is missing, just possibly rearranged (called a balanced translocation - anyone can have translocations and not show symptoms or a syndrome of any type, but when they pass it on to a baby it can become a deletion). Well the test showed that I am missing the very same chunk of genes he is. ??? is all we can think. I always knew he was a mama's boy. But ... a little more of mama than is good for him I guess. But what does it all mean?

We have no idea. The geneticist's best guess is that, since I have the deletion and have no huge health issues like Mason, then another mutation somewhere (another un-tested-for-yet syndrome) is behind Mason's issues. Obviously this brings up a lot of questions we will have to talk through with the doctor before we have any idea what the next step is. For example, he's a boy...I'm not. Things may play out differently based on that fact with the very same deletion. But right now it basically means we are back to square one, trying to find what is actually causing all these problems. It may be a really long time until we have answers, if ever. Obviously if we have Micah tested and he has this deletion too and he is "generally okay" (although we know Micah has never been exactly the picture of health) then it means that probably this deletion causes SOME problems but by itself shouldn't cause the degree of problems Mason is having and they will need to test for other things as he has other symptoms growing up and a clearer "syndrome" emerges. (He hasn't had any genes for specific syndromes tested at all yet--he's only had a test looking for missing chunks of genes, which they found. But for example if they think he has a particular known syndrome instead, something known to be caused by a change on a certain gene, they can look at that gene. Right now they have no clue where to begin looking at the genes since his set of symptoms is so unique. But we do have some theories and ideas for them on where to start and will be talking to them more about this later in the week we hope.

In the meantime, the ball is rolling to seeing the light at the end of the NICU tunnel. Wednesday is the day scheduled for Mason's G-tube surgery, with Nissen wrap (see previous post for the why's and what's of this). It's scheduled for 10:30 am. Please pray with us that they are able to control his pain much better this time than after his malrotation surgery and that he doesn't have any withdrawal issues or more seizures and fevers in the recovery period (which will be longer and more painful than if he was getting the G-tube alone).

Today he had a repeat heart echo to be sure the final heart defect, a VSD, is gone (they have a hard time believing it would close up on its own in only 10 days but we have a big God so I don't doubt it!!). He also had a repeat kidney study today to make sure his swelling is gone that he had when he was born. He has a few other consults and tests to be done before he can go home ... a skeletal survey x-ray, developmental pediatrician, another MRI probably, etc. But if his recovery goes well that's the get us trained in all his home care needs and to go home!! He's still growing like a weed...check out the meat on his bones!! Last night he crossed the 12 pound mark! :)

It's Monday here's what I've been trying to tell myself to get through another long week:

I gotta keep my eyes on Jesus
Through the weak days;
In a world where we really don't belong,
I've discovered if I keep my eyes on Jesus
Through the weak days,
Then even on the weak days
He'll make me strong.

- Steven Curtis Chapman

Mason's Mix

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