Where to start??!!

I'm thankful that tonight is the last night in the hospital, however, I just found out that there are a few laptops on this floor for patient's to borrow. I guess I could've played online the past few days, but that's OK. I got to catch up on Dr.Phil and other fine, high quality shows :)

I guess I'll start at the beginning. Monday we went to see Dr. Coker (The Ped Neuro out here). He did a hands-on exam, something our Ped Neuro in Pensacola did not do. He gathered a detailed history. And then Matthew had a seizure in his office. Obviously I would never wish a seizure on my baby, but I was actually glad that he could witness this occurrence. He finished the exam and we talked medications. He asked if the Ped Neuro in P'cola discussed the medication ACTH. I said, "no". Dr. Coker went on to describe it. He mentioned it was very expensive--ah...I do remember our P'cola Ped. Neuro mentioning this medication. However, he did not go into details. Kind of like, "oh there is another treatment...but it costs A LOT of money". Well, Dr. Coker discussed the med, including side effects. They weren't as scary as I thought--let's see...weight gain, round (moon) face, mood/fussy change, sleep pattern change and glucose in the urine. I was thinking side effects like...kidney complications,etc. Those are serious, but not as scary. Dr. Coker said, "I'd like to admit him and run tests". I said, "let's do it". And here we are.

We had a 24 hour EEG. Matthew was also filmed during it, I think that is amazing! Then when the doc reviews that EEG, he can see spikes and see what Matt was doing. We did a 24 hour urine collection, IV, CT Scan and blood labs. The urine was through a catheter, which had complications. We were a few hours away from removal and we discovered the catheter was causing him to bleed, puss and a slight blister. It looked SO painful. It certainly explains the fussiness. When the Dr on the floor saw it, he kept flinching and gasping. It kinda looked a little like a meat ball. Not the shape it's supposed to be. The swelling has gone down, he is peeing OK, so we don't think there is internal damage, but there is a slit because the cath was pulled during the seizures. We'll have to see if he needs a stitch or something. Poor baby.

We started the ACTH treatment. The doctor said that we would see a difference in a few days. He wanted to keep us in the hospital to monitor the effects of the medication and he wanted to make sure that when we were discharged, we were having no seizures. We have almost gone 48 hours without a seizure! That's the longest we've gone since his first one!

I'm having a hard time with the injections. Everyone has said, "oh, you were born to give injections" referring to the fact I've been diabetic for almost 20 years. Let me just say, when it's your child, it's the hardest thing. I had a hard time watching him get his normal immunizations. Now I'm the one poking him with a huge needle. My diabetic injections are a small, short needles. His is a larger, thicker needle that goes much deeper. But, it is what it is. It's my baby, if it make him better, I have to do it.

I haven't been sleeping much. I haven't showered everyday. I've been with Matthew almost the entire time while he's in the hospital. I went back home once to shower and say hi to Morgan. Other than that, I've been by his side. I even started ordering my meals to come to my room (rather than going to the cafeteria) so I wouldn't leave him. It's funny because I thought I was tired and exhausted before, but this is even more intense. I think once we're home, Matthew will understand his surroundings and maybe perk up. He's also having diarrhea because of the antibiotics and has horrible diaper rash. He screams when I clean him up.

The plan is now to leave IL this weekend and drive back home to FL. My mother-in-law has volunteered to drive back with me. Chris is very busy and stressed out in FL (Did I mention our house was stuck by lightening and fried a some of our electronics/phone/internet/direct TV).

My goal was to be home by my 30th birthday (Monday, Oct 20) and it looks like we will!