Monday, September 17, 2012

Our Story Continues...We are released from the hospital

A quick review.

  • Hailey was admitted to the hospital for the second time January 12th
  • Another MRI was done, now they are thinking Chronic ADEM, MS, or Leukodystrophy
  • We try 5 IVIG treatments that don't really seem to have worked
  • Our regular neurologist has a look of complete dread when he talks to us
  • We do a huge blood draw for the Leukodystrophy panels
  • We get to take her home, but she isn't walking or even baring weight on her legs
Okay here we go...

This is the second time we are taking Hailey home from the hospital and she doesn't seem any better then when we got there. No one thinks the IVIG treatment worked. We take her home and day 1 goes by fine. Day 2 not so much. Josh wanted to go work out, so off he went. Josh's mom was getting ready to go running. I am downstairs with Hailey and she tells me softly and weakly that her head hurts. Not even 2 minutes later she vomits. I call Josh to come back home and Josh's mom helps me clean her up. She vomits again and again. I call the hospital and ask them what I need to do. The Dr. on call says she could have caught a bug in the hospital, or she could be vomiting from the IVIG treatments. (Turns out we later find out it was from the IVIG/Steroids) She continues to vomit for a straight 24 hours. We try and keep her hydrated, and try to feed her rice or saltines. I didn't even have the desire/urge to feed myself. My friend Sarah cooked a few different meals for our family and brought them over. We were so grateful for that. Now Hailey has a fever, but they said not to bring her in unless it's like higher then 102* or something ( I don't quite remember that one exactly) so we give her tylenol and hope she keeps it down. I stay awake the whole night changing her cold compress on her head. We have Hailey in our bed and towels everywhere. We also had a bucket, but what 3 year old can make it in a bucket? It was a very long night. Hailey wakes up around 3 am and wants juice and a cracker. She eats 1 and sips the gatorade and falls asleep. After the 24 hours she stops vomiting. 

In 2 weeks we will see our neurologist and he will put her BACK on steroids. In the mean while we have to see our pediatrician and ophthalmologist. Our pediatrician is as confused as we are as to what is going on and really offers no help in any direction. Since Hailey has been off steroids for so long we opt to continue with her vaccinations before she's put back on. Once a child is on steroids she's not able to have ANY vaccinations for 6 weeks. She gets an MMR and Rubella shot along with a Flu shot. She doesn't have any reactions to them, and honestly I was surprised but relieved.

We got back to see our Ophthalmologist and she dialates Hailey's eyes. Apperantly that stuff burns and Hailey isn't a fan. The Dr. says she has become near sighted in her right eye. The same eye that went crossed last August. Right now there is no need for glasses but we have appointments every 6 months.


Once again when Hailey is home for 1 week and she practices walking with a walker. At first she was kinda scared or intimadated by it. Her grandma and I decide to have it decked out for her. She gets the hang of it pretty quick. (On a side note looking back at these pictures I had forgotten how thin she was, the steroids will/have done a doozy on her. You will see in future posts)



 Both Grandmas are with Hailey and the game of choice is Candyland. I can't even tell you how many games of Candyland we all played. Hailey is also into puzzles, but only watching you put them together while she supervises.
It's a new year so we get to have 12 more sessions of therapy at the Rehab Facility. Since we didn't think to change our insurance before the beginning of the year we have another $10,000 deductible which with that IVIG we totally reached within 3 weeks of the new year. Make sure you take note. Our insurance is that same as it was last year, nothing was changed. That info comes in handy later on.

Hailey goes back to see the neurologist first he is shocked that she's walking on her own. By shocked I mean totally and completely confused. We both had bet that he wasn't expecting that to have happen. He decides to puts on SUPER high steroids. 1 tsp = 5mLs she had to have 8 tsp or 40 mLs a day for 10 days. This will go down every 10 days for 3 months. By the way this stuff tastes HORRID! After trying to get this kid to take her medicine for the first week and having her gag every single time we tried hiding in different foods. I tried pudding, chocolate milk, prune juice nothing would mask the taste. We later found out that Walmart could flavor it by adding about a 1/2 pound of sugar to it. (exaggeration)
Since we have to go through so much of this stuff we have to go back and get refills quite often. The first time I went to Sam's club to pick up a refill they tell me that the insurance will only pay for X-amount of medication every month and she had reached that limit. So what are my choices? She needs this medication. We were told we could pay out of pocket and it's nearly $200. I think to myself I pay for insurance on a monthly basis, but they won't cover all the prescription needed. I am having to pay out of pocket anyway what do I need insurance for?
The next time I get a refill from Sam's club something super odd happens. The girl rings it up and I say I have insurance and the price for the same amount I just paid out of pocket was HIGHER then it was WITH insurance. HUH!?!? I told the girl that I was sleep deprived and I think I heard her wrong. With insurance the price is Higher then without? I asked her if that is what she just said and she said, "yes." That makes absolutely NO SENSE!! So I pay without insurance and the lower price. Ridiculous. But I don't care because I believe this stuff is truly helping Hailey. If I have to buy it by the barrel then so be it.

It's mid February and everything is back to normal now. Hailey is walking on her own and also back to her old self. Even talking better then ever.

For Valentines Day we decide to bake cake pops for her school's Valentine social. She's my favorite helper in the kitchen. She LOVES baking!

In late February early March Hailey's grandparents came down and Hailey went for her first sleepover with Josh's parents. I was a total mess letting her out of my sight. I remember having to take a melatonin to fall asleep. She was fine, I knew she'd be fine. I just need to have her close to me. 
 We also celebrated Josh's moms birthday while they were down with some yummy mexican food and mariachis.
In April a HUGE accomplishment was Hailey had been able to go up and down the stairs all by herself! It truly was a big deal. How many people take pictures of their kids going up the stairs, and yes I have video too! Everything is going great except that she is being weaned off of her steroids and is nearly done. It's starting to freak me out. I know she'll be done soon.
 We make the most of every day. For Easter we had lots of fun. We dress up like bunnies.
 We dyed Easter Eggs
 We went for Easter Egg Hunts.
We get Easter Baskets from the Easter Bunny

 Hailey is doing great and LOVING Pre-School!
 We even participate in a FLASH mob! 

Can you believe how great she is doing? We go back to the neurologist and he has the results for the 6 types of leukodystophies we had a blood draw for. He said that all six came back normal! I was convinced that there was no way she could have such a terrible life threatening disease. The Dr. said to continue to wean her off the steroids and he'll see us back in 3 months.

Towards the end of her wean it's April. She'll be on 1/2 mL every other day for ten 10 days then she'll be off again. When the last day of taking medication comes I give her the last dose with tears in my eyes. I know that these steroids are what's keeping her "Hailey" I just know that without them she'll relapse.

3 days without steroids and we are back in the hospital again...

TBC....