Normal, Normal, Panic, Normal
It has been too long amigos…sorry about that. I’m probably decompressing from all the stress I didn’t realize I was feeling at the time, but I have been indescribably tired these last few weeks. I guess trying to let it roll off your back has consequences. What lesson is there to be learned? I’m not really sure, except if you deal with something like this, be prepared for the crash. I suppose it’s not unlike the way you feel after minor-ish car accidents. Initially, you don’t feel so bad, but the next day you feel like you were beat up. I do feel kind of like someone has pounded my emotions in the face, and I still haven’t quite recovered.
Last week Declan went to see the neurosurgeon for his follow up apointment. His head is something like 2cm smaller! His stitches are healing well. His sutures (the places where the bones of your skull meet) are now overlapping a little as a result of his head getting smaller. It’s not terribly noticable, but when you look you can see the lines where the bones meet. This may take quite a while to correct, but it’s not really a big deal.
The Neurosurgeon did tell Kayleigh that he saw “something” on the MRI that no one had noticed up to that point. He didn’t seem terribly concerned, but he also didn’t seem to have much as far as details go either. Just “something”. Declan will have to go back again in the next few months for another MRI so they can look at “something” again. So…normal, normal, PANIC. This is where our assertiveness is going to have to kick in. Kayleigh is going to call the nurse and search for some more clarification on what “something” means. For now, we’re back to normal mode, since worrying won’t accomplish anything.
In another normal, normal, panic, normal moment, two Saturdays ago I watched Declan and Amelia solo for the first time since surgery. Kayleigh left for work and everything was going fine. Amelia was watching some Super Why and I was just started giving Declan his first bottle. About 2 minutes in he lost it. He cried, and screamed, and cried. When I tried to get him to drink a little more he’d just gag. He screamed, and screamed, and wouldn’t stop. Kayleigh called when she got to work and I let her know that I was starting to get a little panicky. She made some suggestions, and had to start work. (I’m pretty sure she was about to jump back in to the car and make the long trip back home.) So I’m walking around with irate Declan, jiggling him around, and trying to calm him down, then…he burped. Yep, that was it.
It was completely unlike Declan to cry for so long (15-20 minutes of crying seems like an eternity when you start thinking you may have to load up and head to the emergency room). He did the same thing the following Monday. We think he may have outgrown the formula we were giving him, and he was just getting tummy aches. Shoo!
(It’s been about another week since I wrote this. Instead of changing it, I thought I’d just add that Kayleigh did check on “something”. The nurse called right back this time. She explained that there’s a small fluid pocket in Declan’s brain. The Doctor isn’t worried, but does want to keep an eye on it. Another note: in the picture above, the larger line you can see on the left hand side of Declan’s head is a part of his shunt. A tube runs off of that in to his brain. On the left you can see one of the overlapping sutures.)
Until next time…yawn!
Posted on June 11, 2011, in L-I-V-I-N and tagged hydrocephalus, shunt. Bookmark the permalink. 4 Comments.
Just a thought, but Katrina had colic pretty bad when she was that age. Essentially, they get gas, sometimes from a formula that doesn’t agree, but don’t quite know how to pass it. We learned to turn her upside down and give her belly massages to work the gas bubble out- not sure if you can do that with Declan, but might give you an idea you can work with. Thanks for continuing your writing.
We used to rub Amelia’s belly too. We do need to check with the Doc about Declan. You can actually feel the tube in his stomach and it’s right in the area where we’d be massaging.
This must make every normal thing seem terrifying. My poor brother, of course you and K are tired. You’re both under so much stress. You need to find somewhere to go, maybe once a week, where you and K can be with other adults and Amelia can play with other children her age. Some place with peace. Hint hint. Some place with guidance and support. Hint hint
I love you both and you super cute littles too. Declan couldn’t possibly look more like you 🙂 Take care, call me if you need me… or if you’re ever in this neck of the woods. We need to get together.
Thanks for the update. Like Sammy’s Trina, my kids had issues with gas, reflux and colic. I could give you tons of advice about soothing it, but not sure that you might not injure the tube you mentioned. Ask you dr about pushing his knees to his chest tk help relieve the gas pressure. If it won’t hurt him, it’s an almost instant fix.
Best of luck and hang in there. Love to you all!