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!  

Into the hospital we go

We check in tomorrow morning at 7 AM. UUG.

I spent 4 hours cooking this afternoon but I think I finally have all of his food ready for the week. The good news about that is that I don't have to think about what to feed him, it's already ready.

He's done pretty well with the no nursing thing. He will still root around a bit and get upset when I don't give him any BUT he does accept it and will let me rock him. I'm very excited that he will let me rock him and snuggle him without nursing. I've been spending lots of time pumping, which sucks (pun intended) but Jack is worth it.

If you are the praying type, please pray that we get what we need from these tests, that he has enough seizure activity to actually do the tests, that they don't stick him too many times, and that we are out of there as quickly as possible. Don't pray for patience because we all know where that leads, just pray that it flies by.

This surgery evaluation and this diet are huge steps for us. And hopefully, one of them will be our saving grace and will stop his seizures.

Out of the Hospital

I have a lot to say about Jack and his recent trip to the hospital, but he's teething so I've gotten no sleep. None. At. All.

At our follow up visit with Dr. Kane, the neurologist, he wanted to do a longer EEG to make sure that the staring spells Jack has been having weren't seizures. He was so positive that it was nothing and that Jack was fine, but my mommy instincts were going off. I was really hopeful that they were just on over load from everything that has gone on so far. So the EEG was to catch one of these spells on the EEG and eliminate any problems.

We checked in on Monday morning at 7:00 to hook Jack up to the EEG. That. Was. Awful. It took everything in me not to cry with him. It took about 2 hours to get everything hooked up. They had to cement the electrodes to his head with glue and cold air, it was horrible. Almost as bad as the day I wasn't able to feed him all day. Not quite that bad, but close.

He was leashed. We could move around the room, but that was it. And it was a royal pain to keep up with those things. Jack was not a happy camper. The first 24 hours weren't fun, but the second 24 were awful. That's right, we were there hooked up to that think for 48 hours.

After the first day, after not seeing any staring spells, the doc had looked at the EEG and said that so far it looked perfect. The next day at noon-ish he came by, said that he was going to go scower the EEG and that we needed to talk about when we wanted to go home. We felt like we were damned if we did and damned if we didn't. We really wanted to catch one of these spells on the EEG but at the same time we had no idea when it would happen and Jack was so upset about being hooked up to that thing.

Dr. Kane came back about 2 hours later and said that he was really sorry but he was wrong and he found some abnormalities. They indicated that Jack is having partial seizures. The whole conversation is a blur. He said that Jack might grow out of this in a few year. Yeah, YEARS. Or it may be something he has for the rest of his life.

Let me go on a little tangent here and say that we all have our shit to deal with. Some people have weight issues, I've had pain issues and lived in constant pain for 2 years, and some people deal with mental health issues. We all have something to deal with, this is Jack's.

Anyways, after a sleepless night in the hospital where Jack was up every 45 minutes we got unhooked and bolted home. He was so happy to be at home and playing with his toys.

Saturday evening we finally got to talk to the doctor. He called after he went over the rest of the EEG. We didn't get a staring spell on the EEG but the spikes indicate that something isn't right. He recommended not medicating him and waiting it out a little. If it's going to get worse, it will be obvious and we'll call right away and get medicine started. However the doctor is hopeful that this will go away on its own. In the mean time we are treating him with acupuncture.

Knowing that there is something wrong with my baby's brain and that there isn't much I can do but wait for it to get worse is stressful to say the least. We're just praying that he doesn't come out of this with any brain damage and that this is all just a bad memory sooner rather than later.

He hasn't slept well all week. I haven't eaten dinner 3 nights because I'm just too tired. Hopefully the teething will end soon and we can all get some much needed rest.

Here is my little man all hooked up and taking it well... the first day.