kndfamily: Addie's procedures

Addie's adventure started last week on Tuesday when she came home early from the summer program she was participating in with a high fever a week before her procedures. Argh!!! Luckily our doctor was able to get her right in and started her on antibiotics for an upper respiratory infection. It was a long week waiting for the fever to go away because we couldn't move forward unless she was fever free. Thankfully, Friday it really stayed down and we crossed our fingers that was it!

Since she was having a colonoscopy, she had to do a cleanout. For anyone who has done it, it's not fun. And, it doesn't taste good. We had to mix a bottle of miralax with 64oz of Gatorade. She got to choose the flavor, as long as it wasn't purple, blue or red. When I saw the instructions, I crossed all my fingers and toes knowing this was the same one Jackson had tried before and it didn't go well. The final instructions were to call the on call GI doc if she wasn't tolerating it. She took her first med Saturday night to get things moving. We decided to start earlier than they said on Sunday just in case (that's what you do when you are 2 hours from the hospital). She had to take another med and then wait about 2 hours to start the drink. We did. She got three 8oz drinks down before she started to throw up. We took a break, tried again and this continued all afternoon. We let her swim on and off, hoping the activity would help. She was going to the RR, but no where like what they tell you. So about 4pm when she wouldn't drink anymore (hadn't since about 12) I put a call into the doc. She wanted us to get 2 enemas a few hours apart and try that and then see if she would drink anything else. Off to the store I went and we tried. First one kind of worked. Second one, not at all. At this point, we were nearing 8pm and we knew there was still more to go. In an effort to relax her, we looked up "poop songs" on youtube and found a hilarious parody of "Let it Go" related to gas. (The things a mom will do). My mom was there and was a huge help, she got her to drink one more 8oz glass while laughing to "Let it Go."

We called the doc back to let them know our progress and she wanted us to come into the ER to finish her cleanout there. ARGH! I knew what this meant, and so did she since she and Jackson had been discussing this all week. We threw things into bags and off we went to the ER. We got there about 11:30 and got started.

Addie was terrified of getting an IV and the NG tube. They did the IV down in the ER before she was moved up to a bed. Our nurse was awesome, and between he, Dave and another male nurse they were able to hold her arm/body still enough to get the IV in. She thankfully calmed down after it was in and got to ride like a queen up to her room. Her nurse upstairs was awesome. She did a great job of showing her what was going to happen with the NG tube, and then explained that we were going to the treatment room to put it in because they wanted to keep her room her safe place. Once in the treatment room, the four of us tried to hold her (Dave and I along with two nurses). Holy cow, she is much stronger than Jackson. They had to call in another nurse as well as use a sheet to mummy wrap her to keep her in one place. It was torture for all of us. At one point, tears started to roll down my cheeks and Dave told me to go out. Instead I turned my head, held on and continued to talk her through it. (I didn't realize she had seen my tears until a few days later she asked why I had been crying when they put the tube in. I explained to her that as much as I knew they needed to do it, it made me sad that she was so scared and it hurt and I couldn't stop it). The tube went in, and thankfully she didn't throw it up or pull it out. We couldn't have handled it again. After the tube was in, her nurse returned with a heating pad because her IV was hurting and they have found this helps (it did!!) and a few surprises for being so brave. We took a quick field trip down to x-ray where they checked that the tube was in the right place and about the time they took the x-ray both Dave and I looked at one another and we both hit the wall (mind you, it is now 3am). We headed back up to her room where the nurses had already gotten it ready for sleep. She hooked Addie up to her IV and the go-lightly stuff. She also came in with a cup of the go-lightly and said the doctor wanted her to drink one. Dave and I looked at one another as Addie said "No Way!" The nurse got her to try it, and she almost spit it out on her. Thankfully, the nurse was able to get in touch with the GI and she didn't have to drink it. After answering some questions for the nurse, it was bedtime...at 3:45am.

I slept an hour and 15 minutes (I know thanks to my fitbit). I woke up when they came in to draw blood. Addie didn't stir. She had one nightmare a bit later, but went right back to sleep. Dave finally woke up about 8:30 and got some coffee. Addie woke up earlier and she and I watched TV. They increased her solution and after the nurse change, added a second drip of go-lightly. Thankfully, she started going and it worked!!!! Chicken broth! (I don't know that I will ever look at that the same again).

Addie finally fell back asleep, but about 10am a visitor was walking outside and wanted to stop in. They saw she was asleep and were going to keep going, but we motioned them in. Smokey is one of the therapy dogs who visits kids at the hospital, and seeing him walk in lit up Addie's eyes. It was what we all needed at that point. She snuggled and petted him. He laid on her lap and just about fell asleep. His visit was definitely a highlight of the morning.

Right after he left, our day nurse came in and let us know that her procedures were still on (there was some question now if they were going to be able to still do them at their scheduled time) and they would be down to get her at 11!! Addie and I quickly hopped in the shower and rinsed off. We were ready for them before they got there. We met with each doctor. Our pulmonologist did a great job with Addison, explaining what was going to happen. She listened and talked with him and then went right back to her headphones. Anesthesia and GI stopped by and she was ready to go. We were with her until she fell asleep. She was brave and only started crying right before she fell asleep. I cried on the way out of the room. Dave went to get us lunch and I paced. Her bronchoscopy was first, and he came out to let us know it was done and structurally everything looked good. He said, "we will get to the bottom of this thing." Dave and I chuckled over lunch because of course it looks good. It would be to simple to have something figured out right away. GI came out after her EGD and colonoscopy and also said structurally everything looked good. He said she did really well and he planned on discharging her from the hospital when she could tolerate solid foods.

We were finally brought back to the recovery area (holy cow they make you wait FOREVER!) and she was still asleep. She had a nurse sitting with her and after about an hour, the nurse woke her up. Addison woke up calm. She said, "it's done?" She was tired, but ready to go home. After some observation, we were transported back to her room where more surprises and crafts had been left for her to do upon her return. She did her puzzle and really wanted to go down to the Zone (one of the kids areas). Our nurse didn't think that was a good idea because of the anesthesia. Dave and I just wanted to get home. He slept and Addie and I figured out the puzzle and the Barbie. The doctor came in and decided Addie could eat if she was ready. She ordered pancakes and ate a whole one complete with a blue gatorade. No throw up!! I was able to show the nurse clearance from our pulmonologist that he was discharging her and she got our paperwork ready and we were ready to go.