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...