A few weeks after my last post I still hadn't heard from Surgery so I called my go-to gal, Rebecca with the Feeding Team and she got it done. We had less than a week from when we scheduled the surgery to the date of surgery. It was set for July 5th. Now, you all must understand that July 4th is kind of a big ordeal for my family. It is my Grandpa Nagele's birthday and we have always had a big party. My parents have been hosting it for years and this year they had it again. My father is one of ten children, and has two aunts; four cousins from one and seven cousins from the other. Well, all the cousins have kids my age and we are all having kids now... so it's a lot of people! I think my mom was anticipating 125ish total. We also have two meals and games. Well the party was planned for July 4th and Em's surgery the next morning. So we were busy before her surgery, which is how I like it. Not a lot of time to think about it.
I went to my parents place the morning of the party to make mac-n-cheese (and utilize my mom's kitchen :D) and try to help out as much as possible. A lot of my dad's family helped this year and came early, which was sooo nice! And this year it was a hot one. We spent the majority of the day in the house with Em. She got to visit with family, met some of our family for the first time, had one last swim and a quick photo shoot with an ear of corn and we eventually went home.
The next morning we got up early and went to Same Day Surgery. Her surgery started on time but went over a little bit which stressed me and Jake out. But no complications and we eventually went back to recovery. The nurse there asked us if we wanted to see it and I said no. Jake and I were starving, hadn't eaten anything substantial since the night before, and I pass out easy. So she called our nurse we would have upstairs in A4 and when she told her Emileigh's name she knew us. Haha! We had had her before and her mom and my mom were childhood friends. It was nice knowing someone would be there that knew her history. We eventually were transported and settled in our room. Jacob had to work the next day so he left late that night and my Aunt Mare stayed with me. My mom has scoliosis, among other ailments, and I have a hard time having her stay in the hospital in the uncomfortable chairs and horrible pull-out bed. She would stay, if I had let her.
For reference here are a few pictures to give you an idea of what I'm talking about in the upcoming paragraphs:
So, anyways, Em was just on IV fluids and pain meds for 24 hours. Changing her diapers became difficult and she wasn't doing so good. Her back arching came on full force, she was vomiting, screaming like I had never heard before, and inconsolable for a majority of the time. I really thought to myself "what have I done?" Everything was going so good and then I had to go and do this and make her miserable. At one point my sister showed up to visit and I about lost it. They were putting a tube down her nose and into her stomach to suck the fluid from her stomach in hopes she wouldn't vomit so bad. Ellen said she could just tell. Looking back I really don't know how I didn't spontaneously combust. We eventually went to radiology and they did a contrast study and decided to pull her tube out a little more. The balloon was causing her to vomit by blocking her intestines. That helped a bit but it eventually went back to how it was. It got bad enough that by day three the Medical Response Team had been called twice and the second time we were sent to the PICU.
We stayed in the PICU for three days. I actually liked the PICU. We had a hospital bed AND a recliner! We just couldn't eat back there but I will give up food in my room any day to have a bed OR recliner in my room. I felt at ease there and was able to start joking with the staff again. And for the second time since January we had a doctor who knew someone with a PMG child. In the PICU we had a overnight doctor who knows Robert Rummel-Hudson and asked me if I had read his book. I think she could tell by the look on my face at how shocked I was that she even knew what PMG was. We had a quick chat and she had to go but she eventually saw Em vomit and could not believe it. Finally a doc had seen it! I think her seeing it allowed us to stay a little longer.
We eventually were moved back to A4 once a room was open and I was adamant about having that hospital bed in my room. And by golly, we kept it. We rode on it to A4, signed a waiver, and wa-la! Mommy and Em got to continue sleeping at night in a bed for the rest of our stay. We continued trying to get her comfortable and stop the vomiting. We had another contrast study and they deflated the balloon a little and pulled it out again. I happened to run into our GI doc in the hallway and he said he hadn't had that happen before (having a tube pulled back twice in a week). But he reassured me that if the balloon was the problem that there were ways to fix that.
Her vomiting got slightly better each day and on day 11 we went home. Once we were home I did feel better that I would be able to shower and sleep more "normally" but coming home also stresses me out. Honestly, I don't remember much after we came home. It must have been pretty uneventful besides the regular stuff that comes with a tubie and the new stuff of stoma care. She did develop granulation tissue around her stoma and a script for steroid cream was sent to the pharmacy. So we started that 4 times a day for a few weeks. After that we didn't have any issues until the day before Jacob and I were planning on going on a long weekend to Lake Douglass near Sevierville, TN. I tried all freaking day to get someone to see her and got the run around with everyone. Eventually we had to take her to the ED. We got in around 5 or 5:30pm and they diagnosed her with a UTI and about 4 hours later we were home. Quickest ED visit EVER!
Jake and I went on our trip and Em did fine. Once we came home we had to start a second round of steroid cream on her stoma and she had developed thrush on her tongue. So I called our pediatrician and told them she does not take anything orally. They phoned something to the pharmacy and I go to pick it up and guess what?! It was an oral liquid (1 mL 4x a day)! Freaking awesome >:/
All while this was going on I was convinced her tube site looked weird. We took pictures of it to show some nurses and I talked to a few people and they said it seemed fine. Finally, I called and said for my sanity that they needed to look at her. We brought her in and the nurse practitioner within a minute said she was sending us to interventional radiology... meaning she thought the balloon was pulling through the tract. We go down there and yup, it was pulling through. I was highly pissed off that day. And that's all I'll say about that.
Currently, we have a small hole in the tube (the portion on the outside of Em's belly near the G,J and balloon junction) and we will be going to see the surgeon on Thursday about that (we've just been taping it). She is seeing OT and PT biweekly on alternating weeks and will start weekly speech therapy in two weeks. Plus she has all of her clinic check-ups and early intervention appointments. Last week we had six appointments from Wednesday through Friday. Friday we were there from 8:30am to 4:30pm. So you can see it engulfs our lives sometimes. But whataya do? You do what you have to. But on the plus side... someone is turning 1 year old in a few weeks :) Finally we can throw a party and celebrate!
