Saturday, February 7, 2009

New Diagnosis

Well we're home. We ended up in the hospital a little longer than we planned. Kendall was a champ. When we went in to get her electrodes glued to her head, she choked and vomited all over her clothes, blankets, everything. From there she started to have a runny nose, and as chance would have it, she developed croup during the night and had to have a breathing treatment. (I guess it was both a blessing and a curse that she got sick while we were in the hospital! If we had been home and she sounded like that, I'm sure we would have ended up in the ER anyway!) I guess they treat croup pretty seriously in the hospital now, as we were in a room with signs all over the door stating everyone who entered needed a mask and a gown and had to enter through a different door so the rest of the hospital wouldn't get infected?? I thought croup was just a cold and the throat swells resulting in the "barking seal" cough?! I guess its changed since Kamden used to get it every month when he was a baby! Anyway, we made it through and are home now!
The Dr. on call was Dr. Malik. He is an epileptologist and a neurologist. He is also the one who read her VEEG's the past 2 times. When before there were just "pre-emergent" hypsarrythmias, now they are full force. We now have an official diagnosis with Infantile Spasms. More on that in a bit. I wish I could say I am surprised, but I'm not. Dr. Malik came in on Thursday night to explain to me that he has followed Kendall's case and knew she would eventually have Infantile Spasms. Not sure why they never told me that to begin with?? He also told me that "children like Kendall will aspirate" and he ordered a swallow study. He said now with the Infantile Spasms added to her list of diagnosis, there was another blood workup he wanted to do. They proceeded to take a TON of blood from my poor baby. I asked the tech what they were testing for and she read off the list. A factor V (which is a coagulation test...possibly could explain what caused her stroke to begin with if she has a clotting problem...but I highly doubt it is that easy.) They also tested for Metabolic disorders (which we have already had tested....so i guess there are more of those as well.) Kendall had all of her genetic testing done when we were at the Geneticist a few months ago. (including the Micro-array) Anyway, a whole other list of things were added including a urine test too. We go back to Dr. Malik in 2 weeks to discuss the results.
Before we were discharged, we had a team of people (dressed in their gowns and masks) come in to talk to us about our future. They kept referring to Infantile Spasms as a "chronic illness." I hadn't heard it referred to in that manner before, but I guess its just semantics. Anyhow, in a very somber tone, they explained that Infantile Spasms is a very rare, catastrophic, seizure disorder that can have devastating results. She sensitively explained that in a lot of cases, the children end up with physical impairments and mental retardation (hate that word.) They probably thought Justin and I were the most cold hearted people in the world cause we both kind of looked at each other like um, we already expected that and have come to terms with that based on Kendalls MRI, and our last Dr.'s "call a spade a spade" attitude. The problem here is, Kendall already has a ton of brain damage. I looked at the MRI pictures with the Dr. again, and had a shocking reminder that she has 2 big cysts already in her brain. If the seizures continue, more damage will occur. This means, she could lose skills she already has. Sure, she's very developmentally delayed already, but she can suck and swallow, breathe on her own, and has a darling personality. If these continue, those skills will inevitably go away too. THAT was my biggest fear. I also learned that 1 or 2 of these spasms in one day is as damaging as 150. They HAVE to go away completely.
So, how do we make them go away completely? Well, my first answer to that is lots of prayer! I'm calling on each one of you to add Kendall to your prayer chains. All of them! Stop right now, and say a prayer for her! Every church in this town will know Kendall's name if I have anything to do with it. Second, we will start increasing her Topamax. This Dr. didn't agree with the dosage from the Dr. at Children's, but he does want to increase it. If we still see them by the end of the week, we increase some more. Third, if we still see them, we will talk about other more intense treatments (shots for 8 weeks, combinations of medicine, and possibly brain surgery.) BUT...we are praying for Topamax to work now. Right now.
While I appreciate the Social Worker, Dr.'s and the Nurse from the hospital coming in and explaining our new diagnosis so well, (justin called her a walking pamphlet!) I couldn't help but think where the heck were these people 5 months ago when we really needed it?? I guess I have to get used to knowing these Dr.'s are only human. Things fall through the cracks, we will have to explain her history over and over every time someone or something new enters the picture. That is our new normal.
On a positive note, we have everything set up with our MDCP (medically dependant children's program.) On Tuesday we will be spending the night in a nursing home, then Wednesday, Medicaid will become Kendall's insurance secondary to our primary insurance. No more co-pays, etc. This will certainly lighten the financial burden for us and enable us to focus on getting the best care/therapies for Kendall no matter what. (too bad we couldn't have gotten it in place before this last hospital stay!!!!) No, but we feel very blessed.
One day at a time!

5 comments:

Jessica said...

I'm praying and I will ask everyone I know to pray. Lots of love to you all.

Cjengo said...

You know I am praying for you, and I wish the results were different. Dr M and the nurses told us that Jude's grand mal tonic clonic can be worse and IS, but I believe he has IS too. Is anything worse or better though? I think we start coming to grips with the fact that our lives will always be intertwined and laced with rotten news. So we just move forward with the information we have, performing the best we can, until the next log of information comes along. I personally think you are doing an amazing job, and no one could love Kendall more. You are in my thoughts, and I am sorry you are having to deal with this SUCKY situation with her. She is to precious to deal with seizures. I am sorry, but happy she has you for a mom.

TwinsRock08 said...

Jocie, I will have Jeff's mom add Kendall to their prayer list at their church as well. I am praying everyday her. You are the strongest person ever.

Reagan Leigh said...

Sending prayers your way. I know how difficult this disorder can be, but I've also seen many miracles! Hang in there and if you have any more questions please don't hesitate to contact me!
Tera

Dawson said...

Just wanted to introduce ourselves and let you know that we too have lived with I.S. Our story is a little different than most but we know what you are going through. The only things that sustaind us through those dark days was prayer, God, and faith. I will be praying for you as you go through this. Miracles DO happen. It happened to us and it can happen to you too.