Josh and I got to spend last weekend in the hospital... again:(
As I have said before, Josh hasn't been doing well since surgery on Augast 15th. The appendicostomy or ACE is working, but the side effects are horrendous. He vomits and passes out, cries and pukes some more. A handful of times he has also been having seizures. The cleanouts are effective and the numerous xrays that we have had over the last 7+ weeks show his colon looking better than ever, with no stool build up.
After the worst reactions we have had so far two weeks ago, I was pushed way beyond my comfort zone. I think I just snapped and couldn't take it anymore. During this time the Colorectal Clinic decided Josh was too complicated for them and turned him over to GI for everything, including managing his flushes... which they normally do. They said Josh's reactions were something they had never seen before and didn't feel comfortable with him.
So fast forward to Sept 28th.....
After talking to the nurse for Dr. O'Gorman all week about Josh it was suggested we might have to do an inpatient stay to figure out what was going wrong. With our schedule and Scott working to pass his test this coming monday for his new job, we decided to go ahead and hit the ER and be admitted.
Before we were admitted the attending ER doc and pediatrician for PCMC wanted to see what happens when we do a flush. They were flabbergasted at his reaction.
It was then decided to do a Video EEG during his hospital stay to see if he was having seizures we werent' aware of, and try to catch one while he was having these passing out episodes. He was a trooper as usual and handled his "super hero hat" as we called it, extremely well. Every single new nurse, tech or resident doctor that came in our room had to acknowledge his "super hero hat".
At times he felt up to playing with his iPad, but it was a rough stay.. .they continued to do flush after flush with made him vomit a ton and sleep alot. It wasn't fun..... that is all I am saying.
And these pictures about sum up how he felt the whole time.
Child Life did show up and brought him this race track with cars. He loved it when he felt up to playing with it. And as usual for our hospital stays we watched Transformers over and over.
While we were there the motorcycle club BACA (Bikers Against Child Abuse) came with about 50 motorcycles and a Santa Clause and passed out presents and tattoos for the kids. Josh wasn't able to go down to the lobby, but his friend Jonah (who was a patient a few rooms over) brought Josh his gift back. I wish we could have gone down because I think Josh would have LOVED it. But we were hooked to his EEG and he couldn't go.
We were discharged on sunday after 48 hours in the hospital. With no answers and no plan. This was a very frustrating thing for me. Everyone that was involved with Josh's care was very concerned over his reactions, but nobody has any idea why these flushes bring on such a reaction in him. The resident we had both daytime days, took quite the interest in Josh and did some research and came up with a pretty good theory. I am not going to get into the details of it right now, since GI hasn't had a chance to come up with a plan or even give me any input on what they think is going on. The hospital stay wasn't a waste of time since we were able to get about 40 hours of video EEG and I have documented proof of what is going on with Josh. But nobody has a good plan or idea of where to go right now. It is a hard pill to swallow.
Although Josh did not have any of his seizure episodes while we were there so I have no idea if we are any closer to answers there either. But.... I received a call from his neurologist office on monday (day after discharge) that Dr. Filloux wants to see Josh tomorrow morning. So I am not sure what made that happen this fast, but I am happy to have some prayers answered. I have called numerous times and told them what is going on with Josh and the soonest they could get him in with his neuro was Jan. 7th. So this is indeed a good thing.
Now I will leave you with a picture of Josh passed out during a flush. This is not OK. And nobody can convince me that we can go on like this. It has to stop.