Hailey was at school when I had talked to her neurologist. I called Josh in tears and told him we had to book it to Utah and admit Hailey to the hospital. He assures me it'll be okay and to pack up get ready and we will leave that night. I arrange for my mom and sister to stay at my house to be with our dogs. They helped out so much by doing that. It took one less thing off my mind. Josh came home and we packed up the car and headed out. Each time we had been to Utah we take 2 days to get there so that's what our plan was this time also. We stopped half way through and spent the night in a hotel. I didn't sleep that night which is becoming a bad habit. The next morning when Josh was packing up the car I laid with Hailey in the bed. I knew she was getting worse and this was the worse she's ever been and I didn't know exactly how much worse it was going to get. I took out my phone and shot a little video. I just asked Hailey questions to hear her voice. I told her I loved her and she told me she loved me. That was the last time I heard her voice so clearly and she didn't struggle to say it.
Our 2nd leg of the drive went by pretty quickly. When we arrived at Primary Children's they had been expecting us so they had a room ready for us. Immediately after arriving a nurse was in our room and getting some info, but not the usual info I was used to giving. She asked if Hailey brought any stuffed animals or favorite toys with her. Cue Lambie. Lambie was immediately logged onto Hailey's file and there was a note made that Hailey sleeps with Lambie and that Lambie is to go where Hailey goes. They told us that they want us to be a part of Hailey's medical team and they encourage any and all questions. Cue me. I always seem to have questions and I have to interrupt as the doctors talk. I know it's incredible annoying, but it's how I work. They invite both parents to spend the night with the child, if the parents need anything ie: snacks, soda, free internet just ask. It's all available to you. They invite you to take your child anywhere in the hospital you wish. You can go on any floor, you can go outside on any of the patios, you can go to the playroom (which is HUGE), you can even go out to the parking lot if you wanted to. I have never been to a hospital as open and freeing as this one. Hailey's neurologist met us in the room and let us know that even though he won't be at the hospital during our stay he will be involved 100%. He said that we will be meeting with our team tomorrow. I interrupted. A whole neurology team? No. Not just a neurology team. There are neurologists, cardiologists, rheumatologists, Rehab Doctors, physical, occupational, and speech therapists, pediatrics, even genetics. There have got to be at least 20+ different doctors that will be helping Hailey. That isn't including all the students either. So we need to get a nights rest and we will start bright and early in the morning.
The next morning we are awaked by a slew of Doctors and they start writing on the board what they have already discussed and planned for us.
This is a picture of that board:
When the doctors say that Hailey will need an IV put in my anxiety starts to rise. Every time at every other hospital putting in an IV has always been a huge pain. Between not finding any veins, or poking and missing or blowing veins it's going to cause any parent anxiety. When the nurse said that she was going to call the IV team I was curious as to if it was because we said we always had bad experiences or because we were on a neuroscience floor and I assume each kid on the floor would be a harder poke then a regular kid. Nurses in Las Vegas place IVs. At PCMC they have a whole team that JUST do IV placements. They do hundreds a day, thousands a week. They are pros. The IV team arrives and I am holding my breath and when Hailey sees the tourniquet she starts to cry. Before we could even get to the other side to comfort her they were already done placing it. One poke, right in the vein, and it's done! Impressive!
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.
When your child is sedated they are so vulnerable. You have to have trust and faith in the nurses and techs that when you hand your child over they are in the best hands if they are not in yours. The first 5 times was extremely hard to do that. This time I was calm and I remember I didn't cry. I often judge if I had a good or bad day by how many times I cried. Except when I blog. When I blog I ALWAYS cry.
Hailey went in for her MRI and we shortly discover that the white matter demylation had now spread to her central nervous system. That's why the spasms were happening. Hailey isn't able to lift her arms or use her hands now, her chewing has gotten worse. She doesn't even want food in her mouth. The speech therapist change her diet to a mechanical soft diet. It's basically pureed foods. Hailey is not a fan and is refusing to eat. Not a good sign.
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.
We take advantage of being able to explore the hospital. We are often outside on the patio in the fresh air. We are always encouraging Hailey to laugh and smile. Our on going motto is, "If you don't laugh, you'll cry." That couldn't be more true then in our case.
We were able to even catch a few sunsets. Here in Utah.
They have lots of activities and they have lots of toy donors at the hospital too. They invited us to go out to the parking lot where there were tons of motorcycles. You could look at all the different ones, take pictures and then get a toy at the end.
Hailey was scheduled to have another Lumbar Puncture. This will be her 3rd in one year. She'll have to be sedated...again.
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:
She handled it very well like usual and that test did not look fun. The doctor performing the test is world renowned. She travels to different countries and she just happened to be there to do the test for us. So they put these little pins into different parts of Hailey's legs and send different levels of signals through her. She winces and wimpers but she doesn't cry until the end. The last part of the study is where they stick a very long needle next to the muscles in your leg and listen to the electric currents from your brain to the muscles and how long it took and how strong it was. Now this test even though it may sound informative didn't really add anything treatment wise to Hailey, it just crossed some things off the list, which is what most of these test are doing.
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.
They continue to work with Hailey on her PT OT and ST which we also appreciate. Since I have been having problems with our insurance over the issue of therapy for several months if we can take Hailey down to the gym while we are here for any therapy we will. The problem I have with my insurance is that first they gave us 12 weeks of therapy 45 minutes each therapy 1 time a week which is nothing compared to what Hailey needs. Then I got a letter saying that they changed their mind and will not allow Hailey to have Speech therapy and not only will they not pay for the remaining weeks I had left they won't pay for the ones we already had.?!? They said that they don't cover therapy due to a child having a developmental delay. Well, Hailey doesn't have a developmental delay, she has a disease. So I appeal it and they rule that they will pay for the ones we already had but no future therapy sessions. So I appeal again and I get the same ruling. So now I am appealing with a doctors note that states a new diagnosis. Well see how that pans out, but since this happened already and I am in the present writing this I can tell you I am still fighting to get Hailey what she needs Therapy wise...
Not only am I fighting to get Hailey the therapy she is in need of I am also fighting to get her disability under social security. I filled out all the paperwork and I had an interview. During the interview I get cut off. The social worker says to me, "You own a house, you own a car, and your husband has a job? You're not going to get approved so I am going to go ahead and stop this interview." I had told her that yes, we have all that but that shouldn't matter. If Josh has a job or not Hailey still has a disability and is fighting a genetic brain disease that will eventually take her life. How is that fair. Why isn't there some law that states that if a child has a disability then they automatically get what they need. Why don't they take into account the tens of thousands of dollars in medical bills we have, take into account the lien on the house that the hospital put because they wouldn't take payments and wanted the whole amount that was due at once? How do I get around this? What do I do? The social worker says the easiest way is to get a lawyer. I tell her that I will just pay for that with monopoly money. So while here at this hospital I meet with the social worker for this hospital and I get some info on different foundations to apply for while I wait to appeal the original denial. It's not like we are looking for money, I want the therapy she needs to at least have the best quality of life. That phrase haunts me. "Quality of Life" It'll come into play later in the week.
So things are stressful of course, how could they not be. Like I had said before, when I am stressed or in a bad place I shut down. I want to be alone and take care of my kid. I don't want to leave the hospital and go sleep and come back the next day. I don't want anyone to tell me I need a break. Does Hailey get a break? No. So I don't need a break. I don't want to talk to anyone because I fear they will ask me the dreaded/annoying question, "how are you doing?" I could write a whole blog post of how much I hate when people ask me that. How am I doing? How would you be doing? How would you be if you found out your child has so long to live and during that time she will be in pain and in a wheelchair and unable to control painful spasms in her legs and you haven't had a night where you didn't fall asleep only to wake up from a nightmare and then continue to live that nightmare while awake. How would you be doing? Often times I see other parents in the hospital crying and I think I want to go up to them and ask if there is anything I can do for them rather then ask how they are doing. But when I am upset or crying I just want to be left alone. Josh is the opposite. He wants and needs his family around and they are very thoughtful to be there when Josh needs them. They don't even think twice about saying that they will be here when Josh needs them. This was one of those times that Josh needed his family near him. One night things got pretty intense.
** This next part is pretty personal. I did talk with Josh in regards to blogging about it and letting the whole world know what happened this night. I have always been honest about what we are going through. We agreed that we aren't keeping any secrets but Josh did want me to put that this next part is being told through my eyes and what I saw and what I felt. Josh may not agree with it and he is more then welcome to tell his side and how he thought things went down, but for now this is what I think had happened. I will also edit some of the language used**
We had been in the hospital for over a week and Josh was staying at the Ronald McDonald house and I was staying with Hailey. I had asked Josh if he would mind staying late tonight just so I could get a few hours sleep. He agreed. Around 2:00 am Hailey starts crying. I get up and Josh tells me to go back to sleep (yeah that's gonna happen) so I lay there and listen to Hailey continue to cry. I hear him ask her, "what is it? what's wrong?" and I think to myself is he really waiting for her to answer? He knows she can't right? Well the crying gets worse I try to get up to go to her again and Josh insists that he's got it, she's fine. Well obviously she's not fine. Now I am getting mad that he keeps telling me to let him handle it because he's not doing a very good job at it. Finally Hailey goes from crying to whaling and I get up and tell him to let me take care of her. He raises his voice at me and says again he can take care of it and I tell him freaking out and yelling at me isn't going to help anyone. Then Josh turns into someone I have never met. A different person. I am going towards Hailey and he gets up and walks toward me. He yells that he isn't freaking out. Hailey isn't telling him what's wrong and he kind of puts his hands up but as I am walking towards Hailey I see him clinch his fists, fall to the floor, pound the crap out of it and say with tears running down his face that he can't handle this. It's too much. He doesn't know what to do anymore. He's done with this. He's on his knees crying. While I do feel some tiny need to go comfort him because he's obviously having a nervous break down I have to go toward Hailey and comfort her first. While I am sitting by Hailey and Josh is crying his heart out I hear myself being less then sympathetic towards Josh. I tell him that just so he knows and he is aware Hailey's hand was the size of a baseball mitt. Her IV had gone bad and she had been crying in pain that whole time because of that. It really really irritated me that he went that far. The majority of the people I have told this story to, take Josh's side and say, "well I would have broke down a long time ago, I'm surprised he didn't do that sooner, give him a break." I just think in my head that if he would talk to me or anyone when he was feeling overwhelmed or if he cried on a daily basis as I do maybe he wouldn't have exploded. I also didn't like how he did that in front of Hailey. Even if she may not have understood or remembered what had happened I still think it was a little too intense to have done right in front of her. I mean I get it. I'm not heartless, that is just what I felt at the time. After I get the nurse and we take the IV out Hailey passes out pretty quick and I tell Josh he needs to go. I wanted to call his mom to tell her that I know she's coming but this is what happened and Josh needs to talk to someone. If it's not me then anyone. It's almost 4 in the morning and I think about maybe I should call his brother have him talk to Josh, but I don't. I am not the type of person to keep quiet about anything. If you did something to me that needs to be addressed I'm going to talk to you about it. Josh knows this, but when I ask if we could talk about what happened later that morning when he came back he pretended like it was no big deal. It was a big deal. He said that he had an intense moment but it's over now and he's good. Um...no. The discussion doesn't end there if I have anything to do with it. I'm am halfway wanting him to even apologize to me for what happened. He said that even though he walked towards me it's not like he would have ever touched me or hurt me. I told him that I was glad he knew that because I didn't. He wasn't going to continue to talk about it. He said it's done and it's over.
I still feel that he needs to talk about what he is feeling to someone. I hate when he's on the phone with someone about Hailey and at the end of the sentence he says, "whatever"
- "She'll be in a wheelchair, but whatever"
- "It is what it is, so whatever"
Drives me insane to hear those words come out of his mouth, but I guess that's his coping word. I know he doesn't really mean it, but I wish he'd stop saying it. I also wish when Hailey is crying in pain that he would stop telling her to "calm down." How's that going to happen? This was not another whatever moment. Since then I don't fell as if I could ever be the one that gets to go to Ronald House and get some sleep while I leave him here with Hailey. I don't feel comfortable in not being around when Hailey might have some pain and have him "handle it." Don't know if I will ever be now...
So that was hard to re-live. I guess this post is getting pretty long and there is too much more to continue on this same post. So...To be continued.
