Wednesday, November 28, 2012

Our Story Continues...Halloween

Now that we are home things aren't any easier. Hailey being on a continuous feed is a real pain. At this point I was almost scared of IT. It being, the food and making sure the bags are full and tubes are primed and machine is charged. It can be the tube site and cleaning it everyday and freaking out that I'm not doing it right. It meaning being in charge of all the medications and doctor appointments. Worse of all I was even kinda scared of Hailey. She would freak out when we touched her or adjusted her or especially if we transported her from bed to couch - couch to wheelchair - wheelchair to car seat - and vise versa. She would scream as if in extreme pain and she would cry and cry and it was horrible. I couldn't hold her, I could barely comfort her or calm her down. It had been WEEKS since I held her in my arms. I didn't want to hurt her or trigger her morrow reflex. It was driving me insane. I asked her pediatrician if this is how it's going to be or what's going on or if it's going to get better. Well...how was she going to know? She did say to give it time. Hailey has been traumatized with all the hospital stays and poking, and drugs and probably didn't know what was going to happen next. Every other time we were in a car we ended up in the hospital with her. It was incredibly hard. We avoided going anywhere we didn't have to. If we needed to go to the store Josh would go after an already long day at work. He ran all the errands while I stayed home. My house has never felt so small before. It was days and days before I even stepped out of the house. I decided that I had to get her out of the house before we went insane with cabin fever. I didn't want this to be a frivolous trip. If Hailey was going to cry from being put in and out of the car I better make sure the "In Between" time was something fun. I decided to take Hailey to her classroom Halloween Party. I had asked her teacher if that was okay and she had said of course!
I dress Hailey up in one of her costumes. I say one because in the mist of all this happening with being in the hospital and out of state I never went shopping for a costume. My older sister was great enough to have bought a costume and send it over for Hailey. Then Hailey's grandma had also bought a costume for Hailey as well.
Dressing her was such a challenge but I don't think there is anything that isn't a challenge anymore. So I dress her and put her in the car (she cries) and I drive over to the school and get her in her wheelchair (again she cries) I wheel Hailey out to the playground where all her classmates are. As soon as I get close enough for the kids to see us they ALL come running to Hailey. They tell her that they missed her and it was so heartwarming to see and hear.
Back in the class room things are a little odd because I didn't take into account that Hailey doesn't take anything by mouth and they are having a classroom party with cupcakes, juice and candy, none of which Hailey can have. That kind of broke my heart. I wondered if Hailey felt sad or frustrated that she wasn't "allowed" any of it. She was in good spirits as usual and in the end was happy to see her teachers and friends.
 Later on that night after a costume change...
We got ready to go with Hailey's cousin, my sister, my brother in law, my mom, my mother in law, my father in law, and Josh's grandparents, trick or treating! 
I know Hailey didn't get to eat any candy and it wasn't very practical to take a child in a wheelchair trick or treating because you can't wheel her up every single house because of steps, but I still think she had fun. We are still going to treat her like a normal 4 year old and do all the fun stuff there is to do. It may not be easy, but it'll be worth it.

Tuesday, November 27, 2012

Our Story Continues...Surgery Day

We get word that Hailey will be having Surgery for a G-Tube placement on Friday Morning. It's just me and Josh in Utah this time. No family around, but Josh and I are doing better at learning to lean on each other more. They have us watch a movie about G-Tube placement and what to do when, but it's very unrealistic as there is a stuffed doll as the patient. I am told that at 4:30 that afternoon there was going to be class for parents with children who are having G-Tubes placed and between Josh or I going we decide that I should go and Josh will stay will Hailey in recovery. 

Hailey's Surgery is at noon and should only last 1/2 just for the surgery. Prep and recover is about another hour to hour and a half. We walk with Hailey as they roll her to the surgery floor and we meet with the doctors and they ask us if there as ever been problems with Hailey being sedated. We tell them about her tachycardia and they will end up using gas to keep her under, but either way it's going to be rough. We each kiss her goodbye and give hugs and they roll her away. The feeling of handing over your child to COMPLETE strangers, doctors or not is gut wrenching. You will not be with her or any where near when they cut open your baby. If she is scared you do not know, if she is in pain you can't help, she is in someone else's hands and care. The nurse walks Josh and I down to the waiting room where it is PACKED with parents and family and friends...of others. There is a family behind us where there had to have been at least 20 people as part of the family. The little boy that belonged to that family was having a brain tumor removed and the surgery was a success and it sounded as if this family had won the lottery. 

The waiting room was really nice. They had water and coffee available along with snacks of cookies which you were welcomed to. There was no TV, but there were magazines. There was a reception desk where you check in and give your name and they tell you they will call you up when your child is in recovery and 1 parent can go to see the child. An hour goes by and we see Hailey's Surgeon. He tells us everything went great and Hailey is in recovery. They will call us when 1 of us can go see her. He will see us tomorrow.

Another 1/2 hour goes by and they call "Parents of Hailey." Josh says that I can go with her and he'll meet us back in the room. I follow the directions of how to get to where Hailey is. Once I get there and they see that I am there for Hailey the nurse is pretty frantic. She says that Hailey has been screaming and they just keep giving her morphine which should calm her down but doesn't. I get there and Hailey's eyes are closed but she's crying. I tell them that she doesn't know what's going on or where she is or what is happening to her or why she is in pain. I ask if I can lay in bed with her and they say that's fine. There is a song that Hailey learned in school that she really loves. It's called Willaby Wallaby Woo. I must have sang that song 100 times! She'd calms down but then cries again. We are there for about 45 minutes until the Pediatric doctor comes down and releases Hailey back to her room. They ask if I want to stay laying down with Hailey. Well...not really but I will. I get motion sick remember! They wheel us both back to the room and Hailey falls asleep. I guess that morphine finally caught up to her. I had about 20 minutes to get to my class when I got out of the bed. The nurses were looking at Hailey's tube and what I saw was NOT pretty. I saw this long tube with a Urine sample cup at the end. Inside the cup was the end of the tube and blood. Lots of blood. Hailey's stomach would be draining blood for 12 hours. She'll begin eating in 24 hours. Now that she was asleep and Josh was there I had to go to that class. 

I was so scared to go to this class. It was suppose to be an hour long and I was going to learn everything I needed to know about G-Tubes. There was 1 couple besides me in that class and their daughter didn't even have a G-Tube yet. This would be a hands on class. We learn how G-Tubes work and what may happen, like Granulation Tissue, Venting, cleaning the wound, checking and filling the balloon, what to do if the tube falls out....
WAIT! How come this whole time leading up to this I hear how easy a G-Tube is and how great it's going to be for feedings and medication and blah blah blah. No one said anything about it ever maybe FALLING OUT! I can barely look at a finger with a paper cut on it and now I might have to replace a tube in my daughters stomach...What the!
I was shocked. My head was pounding. It was my turn to be tested on changing a dressing and securing the feeding tube from a button:

Well that's all fine and dandy, but they don't tell you, "Hey, by the way. Your kids stomach tube will look NOTHING like this at all." They did say that the tube and the feedings that start in 24 hours will be ALL YOU. I will clean the real wound tomorrow, I will dress the real wound, I will be putting medication down my child's tube. I ask SO many questions. I am freaking out because I am the only one taking this class. If Josh asks me a question about this I am suppose to know the answer. If I have a question what happens? Who do I ask? This is too much. I need some of that morphine. I go back to Hailey's room and the nurse asks how it went. Well the class was suppose to be an hour long but with all my questions it turned into 2 1/2 hours long. I felt bad for that other couple that was there...

Later that night the night Peds doctor comes in and says that we need to discuss pain managment. They want to give Hailey harder meds. They want to give her Oxycodone every 4 hours. That didn't turn out to be a good idea. Hailey's breathing slows...way down. The dose was too much for her to handle so they end up cutting it in half. Josh goes to Ronald House because they finally have a room for him. It was a rough night. Every night was a rough night. They have to drain that cup o'blood every few hours and check vitals and they are in and out all night. 

After 24 hours they want to start feedings. They want her on 1 ounce of food an hour for 12 hours, then 2 ounces of food for 24 hours. Then they want to try bolus feedings where they will eventrually gibe Hailey her whole feed of 250 ml's in one hour. Hailey ends up not tolerating it and goes back to continuous feeds for 2 weeks! We need a medical infusion supply vendor to bring us everything we will need for continuous feedings. We need a machine to do it, we need bags that hold the feed, we need the formula. We end up getting only enough for 8 days then I will get a big shipment when we arrive home. After a couple days of being on narcotics Hailey is beyond constipated. They end up doing an x-ray and seeing Hailey is pretty backed up and will need a pretty big enema and daily miralax. She can't poop on her own. 

We are getting closer to going home and I am getting closer to having a nervous break down. I will have to be in charge of all of this. This is too much. What happened to the crap about just plug her in, feed her and unplug her? (it gets worse later)

I talk with the speech pathologist about communication boards and why Hailey wants to bite on our hands and fingers to sooth herself. She suggests picture cards to help communicate with Hailey. I am STILL in the process of making these: 











 After Hailey gets her Enema and poops, she is back to being in a good mood and smiling again. We take her outside to get some fresh air and before we leave a nurse drops off a blanket that was made for Hailey:
 Josh does his entertaining by balancing pumpkins on his head. Hailey thinks this is great. I can just imagine her thinking, "Check my dad out. He can balance a pumpkin on his head like no ones business. He's pretty awesome."
 Before we could leave the Rehab doctor said that Hailey had to do PT and HAD to use a stander. A machine that will help her stand up and bare weight on those legs again. She hasn't stood on her feet in WEEKS!
Don't let the picture fool you. This was 10 minutes after screaming and crying. They had bubbles blowing and a mirror in front of her and she did calm down enough to give a smile. While we were there the Rainbow Kids popped up again. I asked Josh if it was just me or were they coming around a lot more often this time around. I was afraid that they were coming around more because we were closer to "the end" then I thought...
 We couldn't be at the hospital and not have Pet Therapy come see us. This puppy friend even climbed up onto Hailey's bed. CUTENESS!!
 After being the ones to administer Hailey's medication through her tube and learning how to use her feeding machine it was finally time for us to go home. Again we would only travel half way to Cedar City, but I was a nervous wreak. Just us. No nurses to lean on. While packing up the car I had seen someone standing by the car. It was the social worker I had been working with while we were there. She wanted to say goodbye and good luck and reassured me that I will be okay. I wanted to cry. Everything is always so overwhelming for me. I thought it was incredibly sweet she met up with us to say goodbye and give me a big hug.

We end up driving to Cedar around 3 pm and it should have only taken us about 3 hours. Well about an hour into driving Hailey gets uncomfortable. I suggest we pull over to vent her. What "Venting" entails is you stop the machine from feeding and you stick a HUGE 60ml Syringe (no needle) into the tube and release any trapped gas. The syringe filled up and I had to close it off to get a new one. She was still crying to I decided to take her out of the car seat and hold her and burp her like you would a baby. Well. Instead of burping she vomits...on me. So...I clean me off, clean her off, put back the syringe of food in her stomach and turn off the feeds for the rest of the ride. I know it's suppose to be continuous but who wants to eat after they vomit? It's only for 2 hours I know she won't starve.

We get to the hotel which is another home away from home since we have been there so many times and set up for the night. Hailey has to be at a 45 degree angle at all times so we stuff her with pillows and we try to relax and get a good nights sleep, but who are we kidding. There has not been a good nights sleep in MONTHS why would it start now? Hailey was up all night crying, and me venting her. It was like we were on a loop with that. Morning came to fast and we pack up and leave. It wasn't until we get home that I realize I FORGET THE CHARGER TO THE FEEDING MACHINE!!!!! I felt like such an idiot. The first of many many mistakes I will make.

But at last, we are home.
Will things ever get any easier, will I ever get a full nights sleep, what else is in store for us. There is more to come.

To be continued...

Sunday, November 25, 2012

Our Story Continues...back in the hospital to SLC

When we arrive at the local ER they see that Hailey is pretty unresponsive and so so pale. In the triage she is vomiting, has a 104 fever and has diarrhea. They rehydrate her with a bolus IV and draw blood. They also give her rectal tylenol, and antibiotics in case this is an infection. They take our history, even though they have everything on file and tell us to get comfy, because they will be admitting her and when there is a room ready we will move. It's about 11 am before we get to our room, her fever is down and she has an IV running. I tell them she hasn't eaten in a few days and they have us try to give her some jello. 

 The same regular doctors that were there the first time come in to talk to us and I didn't realize how much better Primary Children's was until I wasn't there anymore. At PCMC you hit the call nurse button and a nurse is in your room before your finger comes off. Here you wait....and wait...and wait. It could be 10 minutes that your IV has been alarming before a nurse comes in on their own or you physically get up and go get them.
We discussed why we went to Utah, and what was recently going on with Hailey. Since we obviously knew Hailey has neurological issues and was unresponsive to us they wanted to do an EEG of the brain. She has never had one, but I did mention that I was curious as to why they never ordered one in Utah when we were there. I asked one of the neuro doctors on her team there and they said that in Hailey's MRI it's all white matter (or lack there of) that they were seeing issues with. Seizures occur in grey matter and there didn't seem to be an issue with that. Not knowing what to expect with an EEG we were all curious how Hailey would react to it. Like usual she was a champ. A little fussy with the probes being stuck all over, but nothing too major. When I watched the screen of the EEG and all the crazy lines all over the place I was sure there was going to be some thing new we would learn...luckily there wasn't. We were told that her EEG was consistent with a child that has leukodystrophy.

 Then some blood came results came back. Her blood count came back at a 7. Normal is 12-15. When we left Utah her blood count was a 12. 5 days later it's at a 7 she is losing blood fast and A LOT of it. They wanted to know if her number was going up or down so we waited 12 hours to see, which I wasn't too happy about, but they had to know and we needed to start somewhere and 7 was our starting number.

 Hailey was so pale. She usually has really pink chunky cheeks, her face was ghost white. They drew her blood at 3 am and at 8 am they came in to tell us her blood count was at a 6.2. She is still losing blood. At this point since she is litterally losing liters of blood, they want to make sure she isn't bleeding internally. There is no blood in her head, no blood in her urine and then they want to test her stool, but she hasn't eaten so how can she poop? They order an enema to go along with a Guaiac test. Where they will test her stool. *Side note: Could you imagine being the person who invented this test and then had it named after you? Kinda embarrassing* Anyway...
So they gave her the enema and then did the test. I remember the nurse and her CNA doing the test and saying, "that looks like a negative to me, all done." So no blood in her stool. Where did the blood go? We would have noticed if she was leaking liters of blood and I haven't seen any. When I talk to the doctor to ask, "now what?" They tell me they are waiting on the Guaiac test. Um...you already got the results it was a negative. Well, they couldn't find the results of the test anywhere. I guess the nurse didn't log it where they were looking for it and it took HOURS to confirm that the results were indeed negative. Oy! My head!
So I can ask again, "now what?" Well now we still have to figure out where the blood went. We talked to a hematologist, who was really great with Hailey and getting her to do what was asked of her. In the end we discover that Hailey had Hemolytic anemia associated with the IVIG treatment she had. It was a side effect that she had never had before, but was having now. She was going to need a blood transfusion. In order for that to happen she will need a PICC line placed. Yes...a PICC line. Like the one we JUST removed!! She will need to be put under and have it placed and that was going to happen this afternoon.
In my head I am not freaking out because I knew that she did well just a few days ago with it being put in and the placement takes about an hour and then she'll have the blood transfused. Well like usual things don't go as planned. We are taken up to the ICU and we wait for about an hour and a half before anyone even comes in to tell us that they are running late. She was supposed to have the PICC line placed at 2pm and they didn't get started until 4pm. Well when 5:30 rolled around and we had heard NOTHING, we start panicking. We ask the nurse to check and give us info. We are waiting in Hailey's room and at 6:00 the room phone rings and unfortunately I answer it. It was the Placement Team. The head doctor was on the phone and says, "we are unable to place the PICC line. Hailey is too dehydrated and we can't get a vein. We have tried repeatedly. It's urgent that she get the blood transfusion and the only other option is a central line." I have no idea what that means? I asked what that entailed and he said that it's like a PICC line but it's placed in the neck and they needed permission to do it...NOW. Well, crap. So I quickly explain to Josh what the heck is going on and we both know we weren't going to say no, stop, don't do it. When I ask how long more the procedure will be they tell me, it'll be about 15 more minutes, but Hailey is fine, breathing normal, oxygen is good. So I give consent and wait...again.
They tell us that we can go up and wait for her or that they will bring her down when she's done, but we go up and walk her to the room. They get the cold blood from the blood bank and there were a lot of signatures needed in order for it to start to flow. It was going to take nearly 4 hours for the whole transfusion. I just sat and watched in wonder. Who was so kind and generous to give their blood to my daughter?
It wasn't the prettiest time and it was pretty hard to get Hailey to be fully awake and smile. The line went straight into her neck and it looked so uncomfortable. She slept almost all night and the night doctor came in and said they will draw blood at 4 am and then every 8 hours to monitor her number.

The next morning Hailey was back and smiling. The color was back in her cheeks and her number was at a 10 by 7am, but she would continue to have her blood drawn through out the day. Her numbers kept going up little by little. After we had been there for 4 days and she was finally stable in terms of her anemia we get talking about the eating and drinking thing...

It's been over a week since we left Utah, and Hailey has barely eaten, but after that transfusion it's like she gets a burst of energy. She wants to eat it just looks like when I put food in her mouth she doesn't know what to do. She either keeps the food in there and does nothing with it, or she swallows over and and over and over. Either way she looks like eating is super uncomfortable for her and it's making me nervous. The attending on the floor says that it's time to think about maybe putting in a g-tube. That way Hailey can get the nutrition that she needs and if she can tolerate food again some day she could still take food by mouth. There are several issues. One, she has leukodystrophy and her team of doctors are in Salt Lake and we are in Las Vegas. Two, the PICC team said that her veins are traumatized and they don't think taking a good central line, that works perfectly well, out so that we can travel is a good idea. They can't discharge Hailey with the line in. It would take us over 8 hours to get to Utah if we drove without the line in. She wouldn't dehydrate in that short of time, but how would it go to put in another line if needed? The end solution to getting Hailey to Utah with the central line still in place was a hospital to hospital transfer via Life Flight. They would be able to have the line in, monitor Hailey and get us to Utah in about 2 hours. That was going to be our plan, but we needed to get it approved by insurance first. So we stayed at the hospital over the weekend and on Monday I was ready to say forget it. We could have been in Utah 2 days ago and she could have had her g-tube placed already. They said they just needed one more day for the medical board to review Hailey's case and to give us a yes or no. One more night at the hospital.
Tuesday morning we get the approval from insurance which I would have bet money on that I didn't think we would get. We did have to sign a ton of papers and say that we would pay if the insurance didn't.
Then we were told that the Vegas team got called out to Reno and don't know when they would be able to get us. When Primary Children's heard that we couldn't give them an ETA they arranged to come get us instead. Primary Children's to the rescue...again!

I am not good with motion. I get motion sick so easy. I always have. I was worried about going with Hailey. How would I take care of her and her needs if I am puking and can't take care of myself? So I took precautions. Josh bought me dramamine and these motion sickness wrist band pressure point things.

The flight team arrived and we were getting everything ready to go. Josh would drive to Salt Lake and meet us there late late that night. Hailey was in a good mood...but it wouldn't last.

Hailey and Lambie...ready for take off.
This was our plane. We had to take an ambulance from the hospital to the private airport. No celebrity sitings, just us...
In the above picture you can see Hailey having a morrow reflex with her arm out. Just going from an ambulance to an airplane would cause it and flying would be even worse...

Ignorance is bliss. This child did not know what we were in for. Everything started off fine. We took off, we were in the air for an hour and a half and then...we had to fly through a hail storm!! They told me it was going to get real bumpy for the next 20 minutes. They didn't tell me the plane would attempt to fall out of the sky several times. Hailey awoke the first time we dropped, reflexes going crazy. The second and third time we dropped she started getting sick. If we weren't strapped down, we'd be air born. She was lying down on her back and was unable to roll over to vomit. She was starting to choke on her vomit and they had to get the suction out and the hose had a kink and it didn't work. So the flight nurse is trying to scoop the vomit out of her mouth and fling it on the floor while the plane is shaking and dropping. I start to lose it. I didn't eat before we flew so I don't know where anything was going to come from, but it did. I started to vomit, Hailey was vomiting. The flight nurse is trying to help and I told him to take care of her. There was vomit ALL over. It ran down her neck into her central line, in her hair, in her clothes, on the blankets on lambie, on the floor...EVERYWHERE. I couldn't stop heaving. I just kept hearing, "hold on 15 minutes." "Just 10 more minutes." "5 Minutes we're going to be fine." It was the worlds longest 20 minutes of my life. I totally need a refund on the crap I bought to prevent that from happening.

When I could see ground I was relieved but still beyond motion sick. Hailey looked scared, I was scared. I was also so mad at Josh for saying that he would have wanted to be the one to fly with Hailey while I drove. After we land they transport Hailey to another ambulance and the flight crew had to clean out that plane and clean the puke off of everything before we could leave. I asked for a trash bucket and told the flight nurse to find the suction and get it ready but making sure that it worked this time.

The flight crew said that they had NEVER experienced such a rough flight. I told them that they will always remember my little Hailey then. I said it was our gift to them...LOL!

Once we arrived at the hospital there was a whirlwind of doctors and nurses ready to take care of Hailey. Poor thing was covered in vomit and was in pain since she threw up her Baclofen. The doctor gave an order for valium and we started to get Hailey all cleaned up. They took off her dressing that covered the central line and re-did all the tubing and put clean dressings on. They had orders for Hailey not to eat but start an IV and if she wanted to drink I had to add thickener to the liquid first. Well, Hailey was pretty out of it and I wished so bad that I had some of what she was having because I was going to have some serious PTSD after that ordeal. Around 11 pm I sneak out of the room and my stomach was wanting food even though my brain questioned it. I walked down to the cafeteria and thought out loud, "What are we doing back here? Why does Hailey have to go through all of this? There has to be an easy way out of all this. I got my food which just ended up being fries and a Diet Dr. Pepper and went back to the room. Josh got there about an hour later and we tried to figure out sleeping arragments. We didn't have a room at the Ronald House yet. I gave him the couch and I slept in a chair. Morning came way to fast.

Now in my head I am thinking, the team will come in already knowing that we are here for a G-Tube placement and we'll get the ball rolling with that and we'll be out of here is 3 days tops! The team came in and started talking about how they have a schedule set for an EEG, a swallow test, meeting with infectious disease, and an exome sequence test....Um? Where is place G-Tube in that list? Why all these other tests? You tell me last time that our daughter has pretty much the worst of the worst of diseases and that we need to enjoy the time we have left with her even though they can't tell us exactly how much time that is and now you want to do MORE tests?! They tell me that they just want to make sure that they are crossing everything off the list. If there is by some chance that Hailey has something else that presents like Leukodystrophy but that has a treatment they want to do that. Then on the other hand if that falls through you have to relive the leukodystrophy diagnosis...So then I bring up that Hailey literally just had an EEG like 4 days ago. Since it was done in Vegas they would feel better if they did the test themselves. They also do a more extensive test. The swallow test has to be done before you put a kid through surgery. To make sure that something that drastic is needed. So then why this Exome Sequencing test now. We were told last time we were here that the team decided against it. Well Hailey's case of have leukodystrophy isn't a common case. Usually when kids get diagnosed with it they just go downhill immediatly. There is no "getting better" with IVIG or Steroids. All those times she was in the hospital and went home and walked again and talked again, and ran and was better then she ever was should NOT have happened, does NOT happen. How did she go from completely unable to walk, talk, and bare weight to, running, jumping and speaking in complete sentences and then back down again. Right now she hasn't walked in over a month, hasn't spoken, hasn't been able to sit up, or eat or drink. Now it's happening too fast. With Exome sequencing they will need to test over 2500 of Hailey's genes. Then they also take my blood and Josh's too. They should be able to see where the "faulty" gene is from. We learn more about the Exome test and it ends up sounding like a bad fortune teller that only tells you bad things that will happen to you. If I have the gene for breast cancer it will tell us. If we have the gene for Huntington's Disease it will tell us. It will tell Josh and I that we have the gene for any specific diseases that there is most likely no cure for. So why did I sign the papers to want to know that?? I couldn't tell you. I guess first and foremost if there is something in that test that will help Hailey then I want to know. Second, if I do have a gene for a really crappy disease, well...I already have it. I can't get rid of it. Third, if we can find out if this is a gene that will show up again in one of our siblings or siblings children it would be helpful for them to know. They most likely won't do anything with that information but if it were me and I had heard there was a chance I would have a child born with a genetically fatal disease I would have NEVER had wanted to have children. So we signed the consent papers and with that you are agreeing to finding out the results...ALL the results, not just the ones that would be helpful for Hailey. The test comes back in 15 weeks and the anticipation of those results are going to give me an ulcer.
In the mean while they take Hailey's blood and the kids crew comes by with a project for Hailey and I to do together. Here is a pumpkin we painted together.

Josh thinks it's no big deal to get your blood drawn. He just sits there all calm and lets the lab tech do what she needs to do:
Me on the other hand who has had blood drawn before and has never enjoyed the experience, still freaks out over the anticipation of the needle piercing the skin...OUCH!!!
But it gets done and the blood is off for Exome Sequencing...I have yet to sit and think about how much this test is going to cost...
So now next on the list is the swallow study. We go down to the x-ray room and suit up in our lead aprons. They have different consistencies of food that they will be giving to Hailey while they record live x-rays of how it goes down. With pudding first Hailey swallows but the pudding only goes half way down which causes her to swallow repeatedly. It keeps going back up and she swallows and finally it goes down. Then with a nectar consistency, her brain doesn't tell her trachea to close so now the doctor on standby is ready for Hailey to aspirate. After the second try he calls off the test and says it's too dangerous to continue. In other words...She fails with flying colors.

They decide that until they can figure out if it is safe for Hailey to under go surgery they will place an NG or Nose Tube that will be giving Hailey food. It's something that the nurse does and It was not easy. First the have to measure Hailey to see how long the tube will have to be. Then they lube the tube so they can stick it up her nose and down her throat. In order for this to work, Hailey has to swallow at the exact right time. They try 3 times and finally it goes down with a swallow. It's bothersome and Hailey doesn't like it, but after 1/2 a day she is done trying to mess with it and they can begin feeds.

After the EEG, Haiely's hair was pretty goopy. The tech set up a inflatable bath so that we could wash Hailey's hair. She was also able to get her central line removed. When they did that they saw Hailey had developed adhesive burns on her neck. 

Until we get word on the surgery, Hailey continues with Therapy. Here she is with occupational therapy. They were throwing bean bag animals down a barrel and I would catch them at the bottom. Hailey had a lot of fun!

Dr. Chung! He was on our neuro team, but his rotation had come to an end. He was a very compassionate doctor who answered every question we had and was always at the hospital. We could track him down in the hallway in the middle of the night and ask him to come look at Hailey and he always would. He was first in the room for rounds and he was always so sweet to Hailey. He is a great Doctor and when he told us his rotation was over and he was off to another part of the hospital we were truly sad that we wouldn't see him again. With a big hug and a picture with Hailey and Lambie we said goodbye. It was awesome meeting such a great doctor.

We finally get word that Hailey will indeed being having a G-tube placed the next morning. Hailey will be taken into surgery and a whole new chapter will be starting....

To be continued. 

Thursday, November 22, 2012

Thankful

I could say that there is a lot that I am so angry about, but there is a lot to be thankful for. There is no way Josh or I could do half the things for Hailey without the thoughtfulness and kindness of family, friends, and strangers. We are seriously blessed to have been able to share Hailey's story, as hard as it has been for me to re-live all this, with everyone.  The way we have had people reach out to us, and offer help, Share Hugs for Hailey, post pictures of necklaces, and comment on status updates, and everything else has been beyond incredible. We very very much appreciate it and do not take any of it for granted.
There was a time last month when Josh got upset with me because I wanted to take over for someone who was trying to care for Hailey, but she was crying continuously. He called me ungrateful and I want to make sure that people don't think I take them for granted when I try to do things on my own or deny help. When you offer help and I say that I can do it, I know you are trying to help and I very much appreciate it, but there are somethings I just can't let go of yet.  
Hailey has some of the best Family and Friends, and strangers who have become friends, that anyone could ask for and we are thankful for that!

THANK YOU!

Hailey at School 11/21/12
Happy Thanksgiving! 

Monday, November 19, 2012

Rainbow Kids


A part of Hailey's "team" I didn't talk about was the Rainbow Kids Team. Here is a description on what Rainbow Kids does:

Rainbow Kids Palliative Care Program

Rainbow Kids is a consultation service that can be provided to any child experiencing a life-limiting illness.  The Rainbow Kids team consists of a social worker, chaplain, nurse practitioner, nurse, and doctor. 
When I was first told about having to talk to the Rainbow Kids I didn't really understand what they did. I had to look up Palliative Care which I did. One part of the definition of Palliative care stuck out. That part was: 

Palliative care (from Latin palliare, to cloak) is an area of healthcare that focuses on relieving and preventing the suffering of patients. Unlike hospice carepalliative medicineis appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases, as well as patients who are nearing the end of life. (I guess that part is us)

I didn't know exactly what they wanted from me or wanted to talk to me about, but I soon realized that's all they wanted to do was talk. They all have their own part in talking to a family. The social worker was a fun guy in a batman shirt who occupies the sick child while the parents talk. I kind of went into a corner and tried to ignore them.

The chaplin has a way of getting you to talk even if you don't want to, but I didn't really fall for it...then. Josh did. Maybe he wanted to talk to talk to them I don't know. The chaplin see Josh wearing a University of Oregon Ducks shirt and got him talking about sports, then football, then he said the golden words....Steve Prefontane. Josh knows all there is to know about him and was more then happy to share what he knew, even though I had the sneaking suspicion that it was a lure. He just wanted to get Josh talking to warm him up for the bigger questions to come. 

We were asked a few times what we wanted to do in regards to Hailey's Quality of Life. I looked that up also: 

Quality of Life (QoL) is a phrase used to refer to an individual’s total wellbeing. This includes all emotional,social, and physical aspects of the individual’s life. However, when the phrase is used in reference tomedicine and healthcare as Health Related Quality of Life (HRQoL), it refers to how the individual’s wellbeing may be impacted over time by a disease, a disability, or a disorder[1]

I don't know if that's a trick question or if they are testing us to see if we know what we are doing with our sick kid. I wanted to ask them what answer they are looking for with that type of question. What kind of quality of life do you think we want for our kid? We wants what's best...duh? We want Hailey to be happy. I wonder if they thought we were putting her through too much. We have done the same thing over and over. We've done 8 MRI's 3 Lumbar Punctures, Countless blood draws, and we have always got the same answers with every test. Maybe they think we should stop. When is enough enough. Well they aren't there to tell you that. They are there to talk to you until you figure it out yourselves.

At first I was really nervous about them popping up here and there but then one of them asked if I knew about the Make~a~Wish Foundation. After you hear that your kid should be "Making a Wish" so many things go through your head. It becomes real. 

I think they might have been more help to us if we had our family around. Then they could go talk to them and "counsel" them. I wouldn't mind talking to a counselor, but I don't live in Salt Lake. They came right after we talked to one of the neurologists that told us that if we were to guess how long would we think we would have Hailey around for. Josh said he doesn't think that she'll make it to age 10 and she said that was a very generous guess. We might have until she is 10 but at what cost? Apparently things are only going to get worse. Once we got home and were only there for two days we ended up in the Hospital again. My next post will pick up there. I just noticed that I didn't add the part about the Rainbow Kids in my last post and they come into play later in our story so I had to make sure I mentioned it. 

To be continued...





Thursday, November 15, 2012

Our Story Continues...We have to do SOMETHING...

Every morning before the doctors do their rounds I get my morning wake up call from Doctor Chung. He comes in early to ask how the night went, what my concerns or questions are and what's on the schedule for today. It is so easy to talk to him about what I am thinking. It's really helpful since I stay up all night, thinking and crying and wondering what is next. He is truly compassionate about Hailey's case.
(OllieFur Therapy Cat)
When the rest of the Neuro team comes around we discuss wanting to try IVIG treatments again. Hailey has really deep veins from being so swollen from steroids, and even though she is off them now it is going to be a while before we see that skinny little face that I have forgotten about. Josh and I ask the head of the team if IVIG would be an option and was so pleasantly surprised when he said that he wouldn't mind trying it...it wouldn't hurt (Please remember this part!!) I had said that I understand how expensive IVIG is and that it's not something to waste, but if it works...The Doctor said jokingly, "don't worry, we sprinkle that stuff like pixie dust here." I felt a sense of relief. Hailey has had IVIG treatments before like I have blogged about in the past. Nothing has ever went wrong before, and every time after IVIG we had seen incredible improvment. If we do see improvement this time it will lead them to think this may have something to do with an autoimmune brain disease which would lead us in a different direction. The one difference in this IVIG treatment is that they want to place a PICC line. A line they will place in a big vein in Hailey's body that will rest right above her heart. They need to place her under sedation again...for the third time in less then a week. I ask how long the line stays in and they say they will remove it before we leave...when we leave...whenever that is.
The placement surgery lasts about 1 hour and they do it right in the room, but Josh and I have to leave. I don't think I could stand watching any more procedures at the moment anyway. Josh asked if I wanted to go get something to eat while we wait. I can't eat right now, and besides I have had more corn dogs in the past week then I have in my whole life. We decide to wait on the patio. I grab my phone and Josh grabs his iPad and we sit on the patio with our electronic devises and another couple comes out on the patio with their baby. They sit in front of us and they are holding their baby, holding each others hand and talking to each other. It got me thinking. That's how they are coping with whatever they are going through. They are better at it then I am.
 The hour goes by, slowly...and Hailey is out of surgery and the PICC line is in her arm. They will use the PICC line to draw blood and administer the IVIG. They will start tonight. They gave Hailey this cute little pink blanket with Frogs. Every time I turn around someone at the hospital gives her a new blanket. Whom ever is making them and donating them to the Children's Hospital, THANK YOU!
 I have time to waste until Hailey comes out of sedation. They had left the daily craft in the room and since Hailey doesn't wear a size 7 1/2 flip flop I decided to make the craft. You take strips of fabric and tie them around the flip flops and they are like HUGE pom poms. So I ended up with some new shoes. They didn't stay on very long, the hospital was so cold so I had to put my socks and boots back on!

 The next day after IVIG I am looking for any small sign that something is happening or going to happen. She isn't using her hands, she isn't talking and she still has extreme spasticity and is still taking the Baclofen. I am still waiting to see a result in regards to that. I try getting her to talk to move her arms and hands, but I am not getting far.
We just happen to be at the hospital for Hospital Bingo. We went down to the playroom to participate. If you are unable to go to the playroom they also broadcast it on TV and you can call in with your Bingos. Everyone's a WINNER at Hospital Bingo!

 We were lucky that even though we were SO far from home we have a lot of friends in Utah. Our Friend Allison brings us dinners and then our Friends Josh and Lindsay bring us goodies from a wonderful place called The Sweettooth Fairy. They also bring their sons who play games with Hailey and put a smile on her face.

 Hailey enjoying music therapy. We want to try and get her to keep using her hand so we put a maraca in it. That night didn't go very well. For some reason Hailey is vomiting. They give her Zofran and keep an eye on her monitors but are curious as to why that happened. In the mean while I tell the Doctors that she's not eating or drinking. Something seems worse?

The next day. Hailey wakes up Happy. The Kids Crew comes around and every kid picks a prize for being "Brave Today." She picks a hide and seek "bean bag." You can see her PICC line in her right arm. I decide to dress her in real clothes. Everyone likes her "Super Hailey" shirt.


 We go for our daily walk around the hospital and we run into Roxy a therapy dog at the hospital. Roxy and Hailey hit it off. Roxy is the first small dog that we've seen. All the other dogs have always been big dogs. Roxy reminds Hailey of her dogs at home.


 Towards the end of our trip we get a visit from Josh's parents. It's always helpful to have family around and they are only a phone call a way when we need them. Right before they got to Utah Hailey was having more and more morrow reflexes. It was so uncomfortable to watch her go thru that.
 This is our To Do list on this floor. We are still continuing with therapy and IVIG and I have a lot of questions going through my head.

-Hailey is basically a wet noodle and her head keeps flopping off the side of her wheelchair headrest. I bring that up to the nurse and she tells the Rehab team and they end up sending a representative from the wheelchair company to our room. He looks at the chair and gets on the phone to order us a winged headrest. It'll be waiting for us when we get home. The techs name was Jared and incredibly helpful!

-Still on the subject of wet noodle I am incredibly concerned about giving Hailey baths. We tried in the hospital and it was a 3 person job. Josh ended up getting half way in the tub to hold Hailey up while I soaped her up and rinsed her off. I can't do that on my own, and it's terrible unsafe. We find out that there are bath chairs that are adjustable to be laid down in but insurance doesn't cover those because it's "not a necessity" to take a bath in a bathtub. Insurance.
The nurse calls out PT and they said they will see what they can do. Not even a few hours later they come in and say that a bath chair was donated to the hospital with instructions for it to be given to a child that would benefit from it. They asked us if we would like to have it. This is that chair:
 I am speechless? There was someone that donated something so expensive? Wow! This chair will make it so much easier and safer for Hailey to be able to take a bath and Thank you to whoever you are that donated it!

- One last concern was a car seat for Hailey. The one we came with would not be the one she was going to be able to leave with. She has no trunk or core strength and can't keep her head up in her booster chair. They call the Car Seat specialist to come and look at Hailey and see what she might need. They suggest this:

Just earlier that morning Josh had to take our 15 year old blazer the the mechanic because the brakes were going mushy. We just had to pay $700 to get that fixed. Now they are saying we need this car seat for Hailey. They see the blood drain from my face. I start to have a panic attack. I guess I should have waited for the tech to finish her sentence. She said that she could get us one if we could pay $50...What? Huh? Excuse me? There was one donated to the hospital to be used at a Special Needs Carseat Clinic and they are able to sell it to us for $50. In-Crebible!

Now by this point I kinda feel as if I had 3 wishes and I just used them up. This hospital was going above and beyond. They cared and they are helpful. This was the hospital we needed to be at. I wish we had been here on August 6, 2011.

The last night of IVIG was pretty bad. Hailey was not eating, not drinking, vomiting, sweating, had a fever and no one knew why. Since she can't turn over and puke we have to have suction. So we pretended that we needed to do some housekeeping and vacuum her mouth. It was enough to put a smile on her face and suction the vomit. Again they gave her zofran and some rectal tylenol. The day after the final IVIG treatment they said that we could go home. Josh's parents would be coming home with us. We would take a few days to get home, but before we left I asked again if I should be concerned about her not eating and drinking as much as I think she should be. One of the doctors from the pediatrician unit had said that maybe she isn't drinking as much because we have her on IV fluids and she doesn't feel thirsty. Maybe once we take her off them she feel thirsty and drink? Well she's the doctor right...wrong! I still felt uneasy about her going home and not eating. I addressed how she doesn't look like she can eat safely, she looks scared when she eats. They said that once she gets used to the mechanical soft diet she was put on she should start eating again...keep an eye on it.


We were ready to go home. We had been here for over 10 days. 10 Very long, stressful days. It was already late in the day by the time we got all situated and ready to go. We decided to have Josh check out of the Ronald House and we got a room where we (Josh's parents and us) could be close enough we could grab them if we needed help with Hailey. We tried to go get something to eat that night and again Hailey wouldn't eat or drink. She just wanted to sleep.
We laid in bed and relaxed getting ready for what we thought was going to be a good nights sleep. Hailey kept waking up screaming. I would rotate her and she'd fall back to sleep, but I kept thinking this kid HAS to be so hungry. Tomorrow we would head out to Cedar City and sleep there for one night and continue onto Vegas. Before we left Salt Lake there was a place I HAD to stop:
The Sweet Tooth Fairy bakery. Their cake bites and cupcakes are beyond yummy, and priced fairly well so we stopped.

On our way home with the 5 of us in the car and a wheel chair, bath seat and 5 suitcases we headed out of Salt Lake. Hailey still hasn't eating and I give teaspoons of water, but I know it's not enough. We stop at a Maverick and pick up one of Hailey's favorites....Pizza and holy smokes she is eating. Super tiny bites but it's going down! Finally she is hungry and I feel relieved until...she vomits! Ugh... So we stop and clean her up and continue to the hotel.
We get there and decide to try another one of Hailey's favorites...Panda Food. HA HA ! She likes Panda Express and used to call it Panda Food. So Josh and I leave her with the grandparents and get Panda Food. She barely eats any of it though. That night was ROUGH. Screaming, crying waking every 10 minutes, rotating her more crying this time me. When it was morning and everyone was awake I asked how everyone enjoyed their 20 minutes of sleep last night?

We gather our things and head into Vegas. Hailey sleeps and cries and we let her bite on our hands and fingers. It seems to calm her and if my sanity is saved but I loose a finger so be it right. It was a long trip home but we finally make it and it's a Sunday. She is still not eating or drinking enough.

Josh's dad heads home, but his mom stays to help and my mom is here too. Monday all day she is in and out of sleep but awake most the day,  night time comes and she is screaming and crying and having spasms and is in such pain. She was due for her baclofen at 10 pm it was 8 so I give her some tylenol to get the edge off but it doesn't work. More screams and crying. I call Utah at 3 am and talk to the Rehab doctor on call and tell him I gave her the medication at 10 and she is screaming. He said to give her a double dose and then increase the dose thereafter so I did. Well...now all day Tuesday it's like she is in a coma. She won't wake up, she won't eat, she won't drink. She didn't sleep the night before so she is sleeping now. She was due for her medication at 2 am but she slept through it...we all did. 4 am rolls around and she is puking, but she hasn't eaten so there is nothing to throw up. Her eyes are rolling in the back of her head and she can't look at us. We were in the emergency room with in 15 minutes. We are back in the hospital after just being released from the hospital. This time we are in Las Vegas though. What is going on now? What could possibly be wrong with Hailey? I had no idea what I was in for or what Hailey would have to endure now...

To be continued...



Thursday, November 8, 2012

Online Donations - and a recap

(Always a smile on her face no matter what!)

Hailey's Uncle Adam and Aunt Megan set up a web donation page for her. If you would like to make a donation you can see the page at www.rally.org/hugsforhailey

We have had a lot of changes happen lately and I haven't caught up on this blog enough to keep everyone up to date on everything. Here are some posts that are going to be coming up. I have a goal to be caught up by the beginning of 2013!


  • Hailey is in diapers 24/7 - Not just regular kid diapers. These are Adult small "briefs." They hold better with the amount she is expelling. These are not an item covered by insurance. We go through 6 - 8 a day and they are not cheap.
  • Hailey had a G-tube placed about 3 weeks ago. She is now being feed through a machine that runs the food through the tube into her stomach. The insurance only covers $2500 of formula a year. Formula is about $350 a month. 
  • With the G-tube you need lots of extra medical items. You need the feed bags that hold the formula that get changed every 24 hours. You need 60cc syringes to use to vent Hailey. You need: dressings, q-tips, bottled water, tape, feed adapters and venting bags. 
  • Our insurance still won't extent Hailey's Speech, Occupational, or Physical therapy.
  • I have applied to medicaid and social security through disability and was denied. I then applied for the Katie Becket Foundation.
  • I also filled out an application for Positively Kids respite. 
  • We don't have a wheelchair accessible vehicle so it's difficult to take Hailey anywhere on my own. She is nearly 4ft tall and 52 pounds. I am about 5'4".
  • We still have to travel out of state for most of our doctor appointments and follow ups. That costs, gas, and hotel, and time away from work. It's seems like every time we turn around one of the cars we have is in the shop. With our 15 year old Blazer we needed brakes on the way to Utah fixed, then on the way back 10 days later we needed a new fuel pump...when it rains it pours.
  • I applied for a private duty home nurse and my insurance said that Private duty nurses are EXCLUDED from my contract policy.
  • Hailey was put on new medication...self explanatory
  • To keep Hailey from getting bedsores we are constantly rotating and stuffing pillows under her. She doesn't have a hospital bed that does it automatically so most of my night is spent awake doing that every 2-4 hours. 
  • I haven't had this kid dressed in actually clothing in over a month and when I go to dress her she has NOTHING that fits anymore. We need to go clothes shopping for stretchy pants and winter clothes, so not to add pressure to the g-tube site until we get it changed from a foley to a mickey.
  • I am going to learn how to make communication boards for Hailey. She is only communicating by moving her head for yes or no answers. When she does it takes so much of her energy to do so.


Hopefully I can get back on track and finish up this year by the end of this year...


To be continued...

Saturday, November 3, 2012

Our Story Continues...Primary Children's Medical Center

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.