Something I will never be used to, even though this was Hailey's 7th or 8th MRI I have forgotten now, is having Hailey sedated for each MRI. She is always in good spirits, but you have to remember, ignorance is bliss. She never knew what was going to happen each time. We kept her happy and laughing, which is very easy until it was time to go under.
They don't waste time here. They want Hailey in with physical therapy and occupational therapy asap. They do push her which we encourage. We know it's not easy, and we know it's uncomfortable, but we also know it's the best for Hailey.
You will hear me sing the praises of PCMC, but like our luck, even with the best intentions things don't always go smoothly...
Like all people I learn from my mistakes. One of them was thinking to myself, "if Hailey isn't eating or drinking (which we have told the doctors) why wasn't see on IV fluids?" I should have said that out loud. No I'm not a doctor, I might not always know why something is or isn't being done, but if I don't know I should ask. Hailey can't ask so I have to be her advocate.
They sedate her for the Lumbar Puncture and during the whole process they let me and Josh be in the room. After about an hour into the procedure where they should have been done by now they tell us that they poked her 3 times and can't get any fluid. They have to pull her off sedation. They want to try again tomorrow. That doesn't fly well with me. I ask why there is no fluid and they say she might be dehydrated. I ask why they didn't think to prepare Hailey's body to have fluid with an IV infusion? The doctor had told me that if that was something I had wanted to have done that I should have spoken up. I had a confused look on my face and I wasn't very polite at this point. I ask her what other options there were since no one was capable of getting this needed fluid. The doctor had said that the other option was to do it via fluoroscopy. Which is like real time x-rays. It's very expensive and they might now have a tech available. I tell them never mind the cost find a tech and get it done. Since they pulled Hailey out of sedation she won't be able to be re-sedated so we need to move it quick before she wakes up with a huge needle in her back. After they luckily find a tech we roll Hailey down there and get this done. One nice/scary thing they do here at PCMC is let the parents be involved in every procedure it is safe to do so with. So Josh and I go down with her and I wish I took pictures of this place. It was a room sponsored by the Utah Jazz so it was painted like the inside of a locker room with a huge x-ray machine and a 70 inch tv/computer screen.
The tech has us wear lead gowns and turns on the machine. He see where the spaces in Hailey's spine are and puts a pair of scissors at the mark and then marks her back with a sharpie. He is in and getting fluid in about 10 seconds flat. I looked at him and said, "well you made that look easy." He answers with, "well, I did cheat." So at least we have our fluid and we are back in our room and Hailey is recovering...but then something happens.
The monitors are going off and there are alarms and nurses and doctors in the room. Hailey's heart went tachycardic (too fast if you don't want to click on the link) They don't have the monitors in the neuroscience floor to monitor that so we have to move Hailey to the surgical floor. Moving floors was like being poor and hitting the jackpot. When you are a patient on the second floor, the rooms are so tiny and there is no space to move around. You have leave the room and walk down a hall to go to take a shower and good luck if you forget something! Up on the third floor it's like the Ritz! The room is 3 times the size. The bathroom has a shower in it, and your only a hallway away from the playroom and the patio.
So back to the monitoring. Hailey is put on a monitor where it records her heartbeats and heart rates. Her alarms are going off all night! The nurse is constantly in checking on her and the recordings are sent to cardiologists. Hailey ends up having an echocardiogram and an EKG and during the ECHO she falls asleep so they get a pretty accurate reading which is good. We find out several things. They start off by asking us if Hailey has every passed out or complained of being lightheaded or dizzy. Which she wouldn't but she hasn't ever passed out. So during the ECHO they don't see the tachycardia, they say that her heart had went wenckebach which is an electric conduction problem. They diagnose her with WPW - Wolfe Parkinson White Syndrome. They at least calm us down by saying that at this point there really isn't anything that they will do about it, but they are aware and they are monitoring it. We find out later that the medicine they use to sedate her which is called Ketamine (Not propofol like we are used to) causes tachycardia...
So we've had an MRI and Lumbar Puncture. Next up is a nerve conduction test. I had mentioned that the Dr. at UCLA wanted us to do that so that was on our schedule. I'm thinking in my head that they are basically going to electrocute my child. Here is Hailey before the NCS:
So we had been at PCMC for nearly a week and I haven't slept well, I've cried some and I just needed to be in a dark quiet place if only for a few minutes. The social working I had been talking to had recommended I try their mediation clinic. It's called Take 20 4 U. They talk you (and anyone else there) through a 20 minute mediation session. I really enjoyed it. At first I didn't think I would "get into it" but before I knew it I had to catch myself from falling off my bean bag from being so relaxed. I really appreciated the opportunity to go and do that, and if they offered it everyday I would be there.
- "She'll be in a wheelchair, but whatever"
- "It is what it is, so whatever"