Our Story Continues...Foley to Button

It's been about 8 weeks since Hailey had her G-tube placed. When I was in my class to learn to care for a child with a g-tube they did not tell me that she would have to have this tube hanging out of her for 8 weeks. Everything I used in the simulation class was based on the "button." The button is placed 8 weeks after surgery and it's a low profile "button" that you attach the feeding tube to at the time of the feedings then un-attach. 

The tube she has now is very cumbersome. It is pretty long and causes me great axiety. I am always afraid it's going to snag or get caught on something, not close all the way, get clogged...etc. We have had a handful of times when the adapter from the feed bag has un hooked it's self and there was stomach contents and formula everywhere. The button is suppose to make things easier...we'll see.

Hailey is scheduled to have the button on Thursday. It's not anything she will need to be sedated for, but I know she'll cry, she'll scream, and she'll fight. Last time the Dr. messed with her tube to measure it she fought and kicked and bled all over the place. I have seen way to much of my own child's blood.

Another thing causing me great angst is that the end of the year is coming up and our deductible starts over. We have applied for disability through social security for Hailey which we had been denied and we also applied for Katie Beckett that we have not heard word on. Our insurance will not cover Hailey's formula at 100%. Apparently that's not a medical necessity either? 

I looked up the price of her formula and it's not pretty:

This is for a case of 24 cans. Hailey uses 6 cans a day. One case at 24 cans is $200 and will last us 4 days! $200 every 4 days! Now I'm not a math whiz by any means, but this is going to cost a small fortune.

If I didn't have high blood pressure before, I will or I do now. Maybe Josh more then me. I am doing research on getting this at a lower cost, but this is one of those supply and demand things. I think they sell this on Amazon also, but they can charge you what they want, you need it. What are you going to do? Can't go without...

So first I will worry about Thursdays appointment then I will go back to worrying about this.

To be continued.

Our Story Continues...Silence is hard.

How do you miss someone who is laying right next to you? Hailey hasn't spoken for 4 months now. When it's me all day long with her I am the only one who talks. It's me, Hailey and 2 dogs and I only hear my own voice. Most of the day it's silent except for the tv.  She used to talk ALL the time. She cries and she tries so hard to say things like mom and Josh. 

That's a funny story. For those of you that don't know, Hailey has called her dad Josh and not dad for the longest time. She started out calling him Josh from the beginning. It was only until recently when she started going to school she started calling him dad. 

I think that video is so funny. She did that all the time. If Josh was home but out of her site she called and called until he appeared.

Josh had told me a few weeks back that he didn't like looking at old videos of her anymore and I didn't understand why. I could watch them just fine...until now. Now I know why he can't. Just the other day I was watching a Hailey video with her and I couldn't stop crying. She used to talk and now she can't. Josh and I talked about if it would have been easier to have her be how she is now all along. I don't think I would have like that though. I love my video of her telling me she loved me right before we got to Salt Lake in September before she stopped talking. I can't watch it but I am glad I have it.

I guess it's true when they say the grass is always greener. What hurts less? You never having heard your child talk, or having heard her child be able to talk and then having it STOP.? I try everyday to work with her to speak again. I mainly work on her saying mom, or yes and no. When she tries really hard that is when the spasms start and we stop and she rests. The main way we communicate with her now is by asking yes or no questions. She moves her head so slightly yes or no when you ask  her a question. I know how hard it is for her to try and speak but I can't bring myself to completely have her stop trying. She still laughs and smiles and it's mind boggling to think that someone can still laugh and smile having gone through what she has and is, but I am grateful she does.  It's also funny she tries to be "naughty" just so we laugh at her. She will be laying next to me and try to grab the tabs off her diaper to try to take it off. If I make a big deal out of it she keeps doing it over and over. It's actually great OT with her using her hands...LOL!

So even though I miss her talking to me terribly, I am glad she once did. The silence really gets to me, and will probably drive me insane one day. I am glad I have all the videos of her even though they are SO hard to watch. I am starting to forget how she once was, what her voice sounded like. What sound her laugh made, because now it's so hard for her to do so. I am super glad I can hear her tell me she loves me on the videos even if she can't do it right now.

Our Story Continues...A ramp

An issue that we never thought we'd have is getting Hailey in and out of the house safely. As I said before she has "issues" with bumps or changes in levelness...(is that a word?) Bumps in the road set off her reflexes and it scares her and then she cries. When I had a meeting with a home nurse agency they suggested a wheelchair ramp in case there is an emergency. If we were to get a home nurse that there should be 2 accessible exits (ramps would be best) and we didn't have one let alone 2. Josh racked his brain to think how we would get this done and how we would be able to even pay for it. I think insurance should have to pay for it, but since they don't even pay for bathing items seeing how they think bathing is not a necessity that wasn't going to happen. We were stuck. We didn't know what to do, or how to get it done. 

A local construction company came to our rescue! They offered to help give Hailey a ramp to safely get in and out of the house. Josh had called me to let me know they were coming the next morning to start and that he'd be on his way to start to clear the backyard. My mom was over and she sat next to Hailey while I went outside to start to move bricks. My dad also came to lend a hand.
Josh got home around 7pm and my brother in law came over to help him. They had everything cleared in about 2 hours.

Backyard is ready for cement! 

 This was our backyard after we removed the bricks from it. We had it all ready for the crew to come in level it out and pour concrete. They would also pour from the side of the house to the front. Perfect for Hailey's chair.

 They did everything in 2 days! They framed and leveled and the next day they would pour the concrete. I was so excited this was happening for Hailey. What a generous company to help us with this HUGE task that we had been worrying about.

 Here are our old steps! 

 Time to pour the concrete!!

 Removing the old concrete. 

 Leveling the backyard out after the concrete has been poured. 

Everything looked great! We just had to wait until it cured and we'd be able to use it. You know how you don't know how much you use something until you can't?

The ramp works great! We are so thankful to have had this done for us. We were complete strangers who needed help and help came. Thank you to the crew and everyone involved that helped make this happen. It is truly appreciated and it means so much to us!!

Coupons Help

I started using coupons right after Hailey was born. I wasn't "working" but I still wanted to DO something more to contribute. I found coupons, I learned how to use coupons and I applied what I knew and was able to gain a great stockpile of essentials. I am not an EXTREME couponer. 

I did have quite the tower of TP going but be realistic. You will use toilet paper for years and years so why not get it for FREE? There was a point where you get burned out, but like any habit it's hard to stop. I did have to stop when Hailey got sick. We were able to use what I had on hand and not have to run to the store for little things like deodorant, toothpaste, and shampoo. Well Hailey's been sick for over a year and really needed more attention now then ever. I can't just leave her with a sitter to run to the store to grab something. Josh has a full time job then comes home to help with Hailey. By the time she is asleep at night where we can get things done around the house like dishes or laundry it's already almost midnight and we have to sleep sometime. 

Even though my stockpile isn't what it used to be, I still have enough to help us get by until I can have a coupon day where I can shop for essentials. Using coupons is A LOT of work but for the most part there are people out there who write coupon blogs that pretty much tell you when something will be on sale and where to find the coupon for it, so that helps. 

This was my most recent shopping trip that I was able to use coupons for. Both manufacture and store coupons and in the end my subtotal was -$0.40!
I ask all my family members for their coupons and I try to keep everything organized. I wish I lived in a place where we had a supermarket that doubled coupons or even tripled coupons. I haven't been able to coupon for actual food because it's not available where we live, but for now the soap, toilet paper, shampoo, conditioner, toothpaste etc. is a good start.

Winter One Day ONLY Special!!!

Announcing a Winter One Day ONLY Special!

Today only, until midnight PST we will have 3 special winter colors on BLACK pendants available! I will have to limit how many we will be selling because I want to be able to get these out to you before the holiday! These aren't only "Christmas Colors" either! Check them out:

The cost on these are at $10 gift each! You can pick them up from me for no cost of shipping or shipping is $3.95 for up to 4 necklaces, $5.95 for 5+. Remember these are placed on BLACK pendants!

Winter Blue and Berry are solid colors while Holly has a glitter shimmer to it! To order just email me at HugsforHailey@live.com and in the subject line put Winter One Day Special. As long as I have your  order before midnight PST tonight you will be able to get in on this offer.

If you need to stuff stockings or you are a secret santa in need of a gift consider sharing Hailey's story with others by giving a Hugs for Hailey Necklace!!

Our Story Continues...AFO's

We were scheduled to go back to Utah in early November to Hailey get Botox injections in her calves. With the spasms Hailey always has her legs stick straight. Here is a picture of her feet while she is in bed with her "therapy dog" Daisy. 

After the botox injections she will have to wear Plastic Boots called AFO's or Ankle-Foot-Othosis. They will stretch her to a 90 degree angle. We had to go to a prosthetic clinic to have Hailey fitted before we got to Utah. 

Hailey was fitted by first takings molds of her feet which wasn't fun, then we had to go back to pick them up before we left to Utah. When the tech placed her feet in the splints Hailey was NOT a happy camper. Having her AFO's on are incredibly painful. It's similar to have super tight muscles and having some stretch and stretch them and not stop no matter how much you plead. :-(

 We comfort Hailey with things she can chew on. She only wanted to chew on Josh at this point. Notice how she is holding his finger as she is biting down. What a good dad. It's not like she doesn't bite incredibly hard either. It HURTS!! We did get to the point where we were teasing her about biting daddy and she shot a smile here and there thinking it was pretty funny.

 Of course lambie was there. We can't go to an appointment without our trusty sidekick!

 So we got our AFO's and headed to Utah. Another long drive, another hotel room to sleep in, another night away from home. We have our appointment and Hailey gets her injections. She screams and cries. The doctor asks how we think she is depression wise. Um? I guess I never thought of it. She asked if Hailey got upset when she is around kids that are running around, if she gets upset that we can't understand her or what she's asking for since she doesn't speak anymore. She gets upset but I can always calm her down, but I guess depression is something to be expected. I just thought I would need medication before she does. She's such a trooper. To be put in this horrible situation and to still be able to smile. I can't imagine many if any people in her situation could do that. I don't think I could.

We discovered that we needed to invest in knee high socks! She wears them under her AFO's. She is better at wearing them, but I don't know when I will be able to get her to wear them 24/7. She wears them to school, but if she thinks about them being on her feet she cries and cries. I know they hurt, but I know they help. I just can't explain that to her. I don't want her to think I am just being mean. Then I think that there are kids that sick or not have parents that are "being mean" to them.

So we wear them as much as we can but she's not at the point where she is wearing them to sleep at night. We hardly get any sleep as it is I don't know when I want to try having her sleep all night with them...

TBC...

Our Story Continues...Cupcakes and Hugs for Hailey

While we were in Utah after Hailey's surgery I found out that  Happy Thoughts Bakery (a local at home cupcake bakery) wanted to have a fundraiser for Hailey. I was so overwhelmed with emotion that someone who I barely knew and who had never met Hailey wanted to do something so generous for Hailey and our family. Every time I thought about it I got teary. 

Then all the vendors that donated items to the event was amazing. More people who did not know me or Hailey or Josh wanted to help. They donated time, they donated items they just showed up to drop off a donation. It was AMAZING!

There was a silent auction with some really great items! 

 Tons of fun things for kids!

 We even brought Hailey down to make an appearance and she did GREAT!! 

 I want to make sure that I thank our Friends (New and Old) and our family members and everyone who was a part of Cupcakes and Hugs for Hailey. Everyone who donated items, helped spread the word, and came out.

Megan - You will always hold a special place in my heart for doing this for my daughter! Saying thank you will never be enough!

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.

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...

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.

Hailey's dad 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. 

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! 

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 care, palliative 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...