Parker's Promise

I have not posted much in the past few days. It had been a bit more up and down this week. Some things have been going great, and others have been some major steps backwards. I know often there are two steps forward and one step back. It feels like this had been 10 steps forward and just two steps back in the grand scheme so I can't complain, but it has still been hard.

I think much of the up and down has been worrying about the transition to go home in a few weeks and the whole g-tube thing. Those that know me well know I have worrying down to a fine art. I don't feel like it is excessive or more than most mother's, but I like to  plan and unknowns make me nervous. And my child is missing his skull bone. And I have 3 other kids at home. And he is not eating or drinking enough. And it's the holidays. And my in-laws have to go home eventually... and.... you get the idea.

Oh and I got less sleep last night which always makes me more emotional. But after having a good cry with the nurse practitioner and a good nap (which the nurse could not wake me up from when I was supposed to give meds and leave for therapy. oops) I am feeling much better. :) One advantage about worrying and planning ahead is that it makes you think of things before and enables you to plan and avert disaster. Yes???

It was good for me to figure out today what I am really worrying about. Parker is not eating well. He was not before and he is eating even less now. Then the whole fluids thing. They purposefully took him off fluids Sat night and Sunday was rough. He wouldn't drink anything and by that night he was dehydrated and lethargic. We gave him lots of fluids that night and I was so thankful for his PICC line. Monday was great. Monday night they got him all ready for bed and set up with his IV fluids.  The next morning I went to get him up and the blankets on top of him were soaked. And under him. And all around him. And there was a tiny bit of dark pee in his diaper. The IV had become disconnected early in the night and ran all over his bed. The poor kid was soaked, cold and dehydrated. This week made me a whole lot more open to the g-tube- for several reasons- but without that PICC line we would have ended up in the ER twice this week. G-tubes are our friends.

So, back to the cry with the nurse practitioner, I was sharing my concerns with Parker eating and she mentioned they are thinking of doing the g-tube earlier. I did not even know that was a possibility. I am so relieved it will not be right before we go home.  Because of our plans for Thanksgiving, we are going to schedule it for the week right after. I feel so good about it.

Before we go home, we can get a "pass" where we can take Parker home from the hospital for the day to try it out and see how things work. Usually they do it on Sunday when they don't have therapy (I love that they don't do therapies on Sunday because they say it's a day of rest both for the therapists and the kids). We are going to get one on Thanksgiving so we will get to bring Parker home for the day!!! I think it will make for a very special holiday and will be so good for the kids to have both their parents home and their baby brother.

So the surgery will be the week after instead of right before we come home. It will extend his stay a bit, but that is not a bad thing since he will continue getting therapies. And it gives me more time to adjust to the g-tube instead of doing it RIGHT before we go home. I really feel good about it. Thanks to all of my wonderful sweet friends who have told me how wonderful g-tubes are and how much stress they relieve. We can use some stress relief. :)

Another thing I've been worrying about is bringing him home without a skull bone. That's understandable, right? Apparently it takes 6-8 weeks to make a prosthesis and they have not even imaged him yet. We have not even spoken to the neurosurgeon since we arrived here 9 weeks ago. And his helmet is too big for him to roll around on the floor with which is what I see him doing a lot at home while he plays. So in my conversation with the wonderful NP, we are going to image him for the prosthesis while he is already under for g-tube surgery which means we can start that process before we go home. They are also going to order him a new smaller helmet in a couple weeks when the swelling goes down even more.

So. All is well. And I feel soooooooo much better.