Monday, September 17, 2012

Our Story Continues...Back in the Hospital - April

Hailey finished her steroid wean on Thursday April 19th of this year (2012). Monday morning I noticed that she wasn't walking completely straight. I been through this enough times that the slightest little mis-step makes my heart race. She just FINISHED steroids how could this be happening. From August of last year she lasted until January. From January she lasted until April, but she's having an episode only 3 days after her wean. I call Josh right away and tell him what's going on and I almost even doubt myself calling him. What if I am over reacting? Do I really see something? It's such a slight change that I almost ignore it. Josh rushes home and we head to the neurologist. This part is interesting. I call Josh at 9:00am we at the neurologist by 11:00 am. I got the first available appointment. The Dr. sees she isn't walking well and tells us that this time he wants us to go to a different hospital. Sunrise Children's Hospital is right around the corner and he will call ahead to tell them that we are coming. He wants her to do another round of IVIG. Me thinking that that's all that's going to happen I am slightly less freaked out then all the other times. We get to the hospital and they have her room ready at 2:00pm. This is a NICE hospital! We get a semi-private room. This room is a sibling room. There is a sliding glass door that opens up the room next door into one HUGE room. We talk to the admitting Dr. and we go through our WHOLE history with her. She said that she has to wait on the medication orders from the neurologist, but in the mean while the attending physician and the neurologist have spoken. Here's where things go wonky.


  • They want Hailey to have another Lumbar Puncture immediately BUT there is no sedation technician available. So what's going to happen? Keep reading...
  • They also want Hailey to have another MRI. One of the head and neck, one the whole length of her spinal cord.
  • We will still have the IVIG and that's going to start tonight.
So for this lumbar puncture they won't sedate her but they will give her a Analgesic. They said that she shouldn't be in any pain after taking the medication and that she won't remember anything. They will also numb her back. Everything should go smoothly...well...it doesn't. 

They put the numbing cream on her and have to wait 45 minutes for it to work. I ask them what they are going to look for this time because they already checked for MS back in August. They want to re-test. When time comes to begin the procedure they ask Josh and I if we wanted to stay. We both think it'd be best if we did stay. How I wish I could un-see or forget what I had to see them do to my little baby. I needed some analgesic medication. They prep the area, put gowns, get this HUGE needle ready and then tell us that they have to basically bend Hailey in half so they get the poke right. Right away Hailey starts crying. I know she's terrified. I'm terrified. The nurses sit her up on the bed and put Hailey's head in between her legs. Hailey is WHALING! I am practically underneath the bed between the nurses legs so that Hailey can see me and I hold her hand. The Dr. is talking through it. He says that  the nurses have to hold her perfectly still, but Hailey is freaking out, trying to get out of this wrestling hold they have her in. The nurse is practically laying on top of her body that is folded in half. The Dr. pokes with a needle and I guess he misses because no fluid comes out. They are going to fill 4 vials. Again he says to hold her still. I am trying to talk to Hailey and tell her that we are there. I couldn't even tell you how long it's been. The Dr. pokes again and it works. The fluid starts flowing we just have to wait for the vials to fill. When that's all done they release Hailey and she just has a bright red face and is covered in snot from crying. I think I was covered in snot too. 

So now that that's over with the nurses clean up this mess and then say they will be back to put the IV in...O.M.G...

They want to start the IVIG at 6:00 pm it's 4:00 now. I ask them to wait until they are ready for the IVIG then do the IV. They ask if that's okay with the main doc and it turns out to be fine. But when 6:00 rolls around I am dreading the poke...

TBC...