Fragile Child Syndrome

We went to see Isaac's pediatrician today as a follow-up and so he's on page with all that has happened in the last three weeks. He has been a source of support for us too while in the hospital, called to check-in and sent a stuffed animal and balloon. He was devastated by the news when he first heard as well.

The follow-up went well. The concern of keeping Isaac's head protected is what we're moving forward with here. And of course the paralysis on the left side of his face. I'm seeing it become more pronounced which is hard.

Anyway, he said one of the big concerns and what we need to be careful of is going forward as parents with Fragile Child Syndrome. I did some research and haven't actually found this to be an actual medical diagnosis but our doctor said it's similar to post traumatic stress disorder. It's just us going forward and working on not treating Isaac like every bump and bruise is the end of the world. Obviously right now we are very over protective. It's just that way. You would be too. But as the fractures heal, the need to be over protective is going to decrease and it might be hard as a parent to let that go. I totally get it and I admit that it may be hard for awhile to let it not affect how we treat Isaac. . . but we'll always try to do what's best for him. And sometimes, as the doctor pointed out, what's best for him may be different from what's best for us. Ya follow?

He recommends I stay home with Isaac for awhile longer to give him the 1:1 attention he needs right now and just take it day by day, week by week. His daycare is working with us and when we drop Sydney off in the mornings, I let him play a little with me supervising so he gets used to it. Actually a nice transition for him!

We have appointments upon appointments for a little while. Followups mostly. We still are not sure if he'll need some rehab. I think a lot depends on what happens with his face. His speech is sometimes difficult to understand. Like he's had some dental work done if that makes sense....

Nap times have been a challenge. I can't leave him alone in his room. I can't or I won't - not sure really. Obviously the best to err on the side of caution in my opinion! So we've changed out his crib and put a mattress on the floor. It's not really working. Nap times and bed times are a pain and he needs good sleep. So I just keep trying. I'm counting on we'll find what works best right before he goes back to daycare and has to acclimate again!

Home Sweet Home

It feels so good to be home!! I could absolutely care less that it's a dreary, rainy weekend. Thank goodness we aren't camping at Lake Wenatchee like were supposed to be!

Being home is perfect. We have been playing and playing and playing. Isaac wears his helmet intermittently. It should take 8 total weeks for the fractures to heal. Slowly life will return to normal. I will go back to work, Isaac will start his new daycare and we will be happy to move forward.

Helmet

Homeward Bound

Thanks to all those who helped me in my "Please don't drip" chant. It worked!!! We are going home today!!!

I can't quite believe what we've gone through in the last 2 1/2 weeks and I don't think anyone thought we would be where we are now. Our child has come out of this with a small hearing loss and paralysis on the left side of his face. No inpatient rehab and possibly no outpatient rehab - at least on the PT side. He is running, jumping and dancing. Just like that. Miracles Happen is right!!! Thank God for answering our prayers!

They are looking into ordering a helmet as it will take 6 more weeks for the fractures to heal. During that time, he'll need to be closely watched. Some rehab will be needed - like speech and possibly some OT (occupational therapy).

I wish I could find my camera cords but again, I can't. I'll have to share pictures later.

Uneventful Update

So now we're waiting...for the drip to stop! It's slowed WAY down - maybe 6 drips today. Tomorrow the neurological surgeon comes to evaluate and actually try to get it to drip. If it drips, we stay all weekend, if it doesn't, we go HOME!!!

Please don't drip. Please don't drip. My friends tonight brought up the idea of sticking something up there so it won't (as a joke of course).

So if it drips, we reevaluate on Monday. If it's still dripping, then they do a ct scan to figure out exactly where the drip is coming from and surgically fix it. This would be a bummer!!! Of course we just want what's best for Isaac. The concern with the leak is not really that it's leaking but that if something is leaking out, then bacteria could get in. Huge infection risk.

It has been determined that he will do outpatient rehab down in Olympia. Wahoo! Not sure what the frequency will be yet. In a way I'm scared to go home. Then his care is all up to me and he's moving a lot. I will need to be on top of his every move. Another bonk on his head would be awful. As time passes, we'll get a better idea of how long 1:1 care will be required...

Hearing Test Results

I was fully prepared to be told that Isaac's hearing was completely lost in his left ear but IT'S NOT!!! He has partial hearing - it's not perfect but we will take it. This is good in more ways than one. It means his hearing nerve was not severed and since the hearing nerve is in very close association with the facial nerve, means the paralysis in his face could recover. Isn't it amazing?? I am so incredibly happy!! Keeping the faith and staying positive works!!

We weren't given specific results of the cat scan yet but we do know that we have four days for this drip to stop or surgery may be required. It has slowed down quite a bit so hopefully it dries up soon!

Also, the rehab doctor came today and saw Isaac walking...yes walking - and he was amazed. I mean truly this boy is a MIRACLE!! Anyway, he said that because of his impressive progress, outpatient rehab could be all that he requires. At first I really wanted inpatient - as it would be so all-encompassing and would definitely propel him in the right direction but looking at Isaac's progress now, I'm not sure he needs it! Outpatient rehab would require a few appointments per week to work on a few issues that do still need a bit of work.

We are definitely looking forward to normality again - however it may be. I picked Sydney up at daycare this afternoon and we went to the end of the summer party, then she came up to the hospital. When I had to say goodbye to her, it was devastating. For both of us. She wants to come home and be with us - it's hard to have to tell your daughter that right now, Isaac needs us more than she does. Very hard. I keep reinforcing that this will all come to an end soon and we miss her very much but every day that goes by makes it tougher. Not quite sure how I'm going to make this up to her.

Not Much To Report Today

No news is good news I guess! It's been a pretty slow day. I had the morning by myself (well with Isaac of course) but no dad to hang out with Isaac while I showered, got coffee, etc. so it was a bit of a challenge. Luckily, I survived!

Isaac wakes up ready to play. He sees his cars and trucks and wants to get going. PT had a good session with him, the challenge is still balance. His muscles are a little weak also - I've noticed his thighs are a little less chunky and his pants a little baggy. Not surprising after being in a coma for five days and being fed by a tube for three.

Medically he's still waiting for the CT scan but they've put that off to tomorrow so they don't have to sedate him twice. So 11am tomorrow is the hearing test and either before or after is the CT scan. Then we are counting on the move to Children's. I honestly could see them putting it off until Thursday but the pediatrician saw no reason to put it off. Time will tell...

This hospital is starting to feel very small....I really just want to go home and get back to our "normal" life.