slow and steady progress

It's like two steps forward and one step back around here.  Jack is definitely making progress.  I'm still not sure how I survived that first week after surgery, I guess just reminding myself that he won't remember all of this, but the whole thing was ugly and something that no parent should have to go through.  And no child for that matter. 

He is finally playing some instead of just sitting on my lap and screaming.  He is still very attached to me and Jonathan, but does okay now when Jonathan leaves for work.  I even got to go out to our Epilepsy Support group a few nights ago.  He cried when I left, but did okay and even went to bed without me. 

He is still sleeping in the bed with us but we are thinking about trying to transfer him back to his own bed next weekend.  We aren't getting much sleep. 

Today was a rough afternoon.  We weren't sure what was wrong, but guessed at pain by the way he was throwing himself around and screaming bloody murder.  We gave him pain meds and he turned into his normal happy self.  The doc said that he wouldn't need pain meds anymore, but he doesn't know Jack like I do.  Hopefully we will be done with it soon though, he went 2 days without anything at all.  Slow and steady progress! 

The big news that we got at the follow-up appointment is that we will start weaning the diet in 2 weeks!  TWO WEEKS!  We though that it would be 3 months, so the 1st of the year, before we would start this. 

We haven't seen anything that we know is a seizure, though we have seen some suspicious movements, but the doctors think it's just from the surgery.  But I haven't seen it in over a week, so all is good on the seizure front. 

And FYI, putting a child who is on steroids on a calorie restricted diet is just mean.  The poor baby is constantly crying for food.  I've even increased his calorie intake and he is still always asking to eat.  The sweet guy wanted broccoli and eggs and avocado for dinner so that is what he got, but he cried for the 30 minutes that it took to calculate everything out and get it cooked.  And yes, you read that right, he actually asked for specific foods!  He has been talking up a storm, some of which we still can't understand, but he is clearly making progress already.

But back to the diet thing, this means that he can actually eat Thanksgiving dinner with us!  We will have to make a few low-carb dishes, but it will be so much easier!  When the doctor told us that and left the room, Jonathan and I both sat there and cried a little.  For us to be able to eat the same dinner as a family is a huge deal.  Something we have dreamed about, but has never happened.  We can go out to eat and order off the menu.  He can have as much of the things that he loves most, like salmon or steak and avocado, as he wants.  We still can't give him cookies, or cake, or junk food, but he doesn't need that stuff anyways.  And neither do we for that matter.

I find myself a little overwhelmed, given that I have done nothing but keto for him for 19 months.  I have been emailing with the dietitian and to be honest, I'm not even sure how to get that many carbs into his meals.  It sounds crazy, I know, but we are planning on continuing to do the gluten-free thing and it seems like it is either one extreme or the other.  I'm sure I will find a balance in there somewhere, it's just going to take so adjusting to.

 
This is a keto meal.  There is a ton of butter and heavy cream in the eggs and then about 1 tbsp of apple sauce for a small amount of carbs.  He loves strawberries so that is where he can get a few and I of course have some keto cookies that I will continue to make for him but it is certainly going to take some getting used to measuring his veggies out in a cup instead of on a scale. 

Digging Deep

First, here are a few pictures from the hospital.  I don't think much of a re-cap is necessary.  It sucked, that pretty much sums it up.

Those bandages had to be changed way too much!

The look on his face here pretty much says it all.

This is how we slept the whole time and spent most of our days.  I haven't slept in a crib in 30 years and I don't want to again!

This was a prayer blanket made for him by the women at a Catholic church out in Marble Falls.  He still likes to sleep with it.  

This was looking at some cards made for him by a class of students down in Houston.

And looking at a book of Seize Hope pictures that was made for us.  His nurses were awesome! 

We called this a spiked drink.

And on the last day with the grid in, Tuesday, he was finally starting to feel a little better, he wanted to sit on the floor and we even got a few smiles out of him.

 We were prepared for the crappiness of the grid, we were not however prepared for the severe anxiety that would come after the 2nd surgery. 

 

 We all started to go a little crazy in the PICU again.  If you look closely, you can see the swollen little rock star. 

He was VERY excited when he finally got to ride in a wagon!  He rode and rode and rode but Mama had to be there with him.  The next day the only way I could get him to ride in anything was for me to sit in a wheel chair and hold him and then someone could push us.

 

One evening he perked up for about 10 minutes and was telling that dog to stay.  He was giggling and being his normal happy self.  I'm so glad that we saw that, otherwise I would be extremely worried.    

 We did have a lot of visitors in the hospital, which was great.  And some of them cheated at tick-tack-toe.

And others danced with bugs!  Jack of course slept right through his cousins being there and woke up 5 minutes after they left. 

 

We got let go last Saturday, I think mostly because the NP who was there saw how badly Jack was freaking out whenever anyone dressed in scrubs would enter the room or even try to talk to him in the hall.  They all decided that he would actually heal better at home.

We were hoping that the anxiety he was having would ease up a bit after getting home, but sadly we were sorely mistaken.  Up until Thursday he did nothing but sit on me and scream bloody murder.  I can't go to the bathroom without him having a major melt down.

He is now sleeping in our bed with us.  I was sleeping in his bed with him but he would flip out in the middle of the night if he woke up because Daddy wasn't with us.  Then when Daddy was with him he would flip out that I wasn't there.  In the bed with us, we all get more sleep so we are going with it until he adjusts a bit.  

Thursday he finally started to loosen up a little.  I still can't pee without him flipping out but he is finally interested in a few books and the ipad and he isn't screaming non-stop.  He still gets very upset is either Jonathan or I walk out of sight.  The poor child goes into major melt-down and just flips out.  I can't really blame him.  The last time I left him someone cut open his head and scooped out part of his brain, so who could really fault the child for having a little separation anxiety?  I must admit though, I was not at all prepared for this part.

Some of our friends went through this a little over a year ago and they told us to take video of the things that he can do so that if he needs therapy, we could just use the video as references for what he could do.  So I took a lot of video!  I was somewhat prepared for him to have some seizures, for him to lose some skills or speech, but none of that happened!  I did not expect him to have massive anxiety attacks though.  I just wish there was something more we could do for him.  Our 2nd day home from the hospital I yelled at one nurse on the phone and cried to another and finally got the doctor to call me.  He gave us some anxiety meds to give Jack, which helped a little but not much, and said that it was just going to take time.  Like I said, we are having to really just dig deep to get through this. 

And there are very few shirts that I will actually put over his head because they stretch enough!