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!

Children's Hospital

I'm waiting for the RN to come in to have me give Matthew an injection--so I will be brief. We are admitted to Children's Hospital out here in IL. We have a diagnosis of Infantile Spasms, which is different that what we have been treating for--Epilepsy. We will be inpatient for a couple of days, the doctor is optimistic we will see results within a few days. He feels we will see Matthew have an uplifted personality. He feels that seizures will stop with this medication. The medication is called ACTH. I will write more in detail in the future. I will say, however, it is projected to cost about $200,000 for the course of the treatment. That is medication only, not hospital stay, not tests, etc. The medication is $25,000 per vial of medication. It is an intramuscular injection which I will have to give him. Matt's being a little trooper and we're hoping to see the difference in a few days.

Appointment with Dr. Coker

Friday I was talking to my dad when the house phone rang. It was the RN from Dr. Coker's office (Ped Neuro). She said they had an opening at 1030 AM Monday. Obviously I took the appointment. I canceled my December 11th appointment (which I had no intention of waiting for...I knew we'd get in soon, but Monday is sooner than I thought).

Chris leaves for Pensacola on Monday before Matthew's appointment, but his mom will go with Matthew and me. We still haven't straightened out insurance, we followed up on the referral status last Thursday. Dr. Banas (PCP) left several portions of the referral blank. She started to fill it out last Tuesday, so really it should have been accepted by now by the insurance. If she had called us to tell us she had questions, we would've assisted. The funny thing is, when we faxed the form that needed to be filled out for Tricare, we also faxed her a cheat-sheet that had all the addresses and names she needed to fill in.

Chris called Tricare and Dr. Banas's office Friday. She correctly filled it out and faxed it back to Tricare. It was not in Tricare's system at 600 PM but that's doesn't mean they hadn't received it. Either way, this is not stopping us from attending the appointment on Monday.

One step closer

I called the Ped Neuro that we would like to take Matthew to yesterday. I had his RN's direct line. She explained that there is a 2 mo wait for an appointment~BUT there is a stand-by list. I of course, was extra perky & sweet as sugar to her because she controls the list. She said that she goes down the list when there is a cancellation. She explained that she won't leave a message, so if person #1 doesn't answer the phone she calls person #2. I told her we're pretty much up here waiting around for appointment. She seemed optimistic that we would be in within a week or so.

Matthew's seizures have not really improving. He has been having seizures everyday still, but EVERY night he's have one between 10PM-12AM. It's frustrating bc he might be sleeping and he wakes up having them. Last night I had him in bed and he had his 11PM seizure and he threw up EVERYWHERE. It's frustrating and tough. We wish we could take these crappy seizures away.

BRRRRRR

No change in status yet for Matthew up here! We're having a nice time visiting family & friends. I'm getting to sleep in every other day (Chris and I are rotating). Unfortunately, I have a cold. But, when you change from 89 degree weather to 60 degree weather, it happens. Matthew is getting lots of cuddles, snuggles and love from friends and family.

We faxed the referral form that insurance gave us to Matthew's PCP today. It needs to be filled out by the PCP and then sent back to insurance. We'll call tomorrow to see if the PCP has completed this. Chris has bought his plane ticket back to Pensacola Oct 14. It would be nice if we were done by then, but I am not sure we will be. He'll then drive back up here after the appointments and we'll drive that fun, fun, fun drive back to P'Cola.

Moving Forward...and then back

We went and saw a new PCP today. She was very nice and was willing to work with us on a referral. She said that she writes her referrals on a prescription and then we take it to the specialist we want. This, of course, is VERY different when we get a referral from our military doc. We called up Tricare to see if this would be acceptable. Nope. The good news is, before we left his appointment, she said if they have another form to fill out, just fax it to her. So looks like Monday we'll be doing some extra work.

Rescheduled Appointment....

We didn't make our appointment yesterday. When Chris called to check on the status of insurance, they hadn't processed it yet. (although we faxed it). Although they said they would back date it to the day it was received, we decided to wait until Friday to see the Pediatrician ~ We don't want something to screw it up and it mess up our referral down the line.

Matthew has been doing well. He has been more interactive. But, last night he was up until midnight (I was up with him, lucky me) and then he had a seizure around 1230AM. He usually doesn't have night seizures, but the last two nights he has.