Brown and Pink Polka Dots : Two surgeries

Its been a long few days here and I am going to try to write this in a lot of detail partially to tell the whole story and in part for record keeping for me.

Thursday:
Thursday morning Lydia's nurse came for her visit. We were excited that Lydia is over 5kg. Her nurse called GI to let them know her weight. Oxygen came at 11:30. Then I started packing the car which was quite the task as every time I brought something outside Lydia would start to cry and vomit. We had told Ronald McDonald House (rmh) that we would be there around 5 once Brent got done with work so we had a little time so the girls and I went to the zoo for a bit. It was a really nice day out and the walk was really nice. We even got to watch an elephant paint! Once we were done at the zoo we headed over to rmh and we checked in. First we met with a staff member who did all of our paperwork with us and then three volunteers took us on a tour. They took us to the magic room where Jilli got to pick out a toy and book for both her and Lydia. She decided Little Mermaid Play-dough was perfect. We then went up to our room and got settled. Thursday night they had dinner at the house provided by a group of volunteers. It was really yummy! After dinner we headed down to the art room where art therapy was happening. An art therapist from the hospital was over helping with art projects and there to talk. We met another family in art therapy and we were able to talk about of medical journeys both families are on. Being a parent of a medically complex kiddo puts you in a club, not a club you really signed up for but sure pay lots of dues on, but when you meet another member there is a connection there that is hard to explain. A strange medical language is spoken and conversations are not about the latest movie or pop culture but about what doctors work hard and what doctors make you want to scream. After art therapy we gave the girls baths (in a stand up shower so it was an interesting adventure) and then tried to get them to sleep which neither of them were very interested in. Brent ran to Walgreens because I forgot to pick up Jillian's laxative from the one by home on the way up and then he came back and everyone attempted at sleeping, however it was a night of little sleep.

Friday:
We got up at 5am to turn Jillian's pump off and get ready. We had to check into the OR at 7am. We walked over to Children's around 6:30 and grabbed breakfast at Cafe West. We headed up to surgery and checked us in. They started to do vitals on Jilli and he had a little freak out with the temperature probe. It took me a second to figure it out but then I realized how much like an EMG needle that looked like so once we showed her that it was not a needle and we used it on Peppa Pig first then she was fine. She was very chill waiting as she watched TV. We also had a nursing student and her instructor working with us so it was a full room. The nursing instructor was enjoying holding Lydia... until she pooped all over :) Jillian's surgery was scheduled for 8:30 so around 7:55 they gave her relaxing medicine. Jilli is so funny on that stuff. Every time she starts grabbing for things that are not there and tries to get up however she looses all control of her muscles so it is always an adventure to keep her in the bed. Everything looked like it was going to happen on schedule. Our GI dr stopped by (not the one doing the surgery) and we talked for a little bit. She said there was a possibility that Lydia would get a GJ tube during surgery and that made us very happy. Then the doctor for the surgery came in and we talked about how we only wanted to Botox if there was the webbing they were looking for and how we did not want it if it was not needed. He said ok and then stuff started getting a little weird because there was a bunch of stuff about if IR was needing to be involved in the girl's surgeries and suddenly it was after 9 and Jilli still had not gone back. Jilli's relax meds completely wore off before they wheeled her back into surgery at 9:30 but the anesthesiologist let her watch Frozen on her phone on the way in so she was happy. We hung out with Lydia in pre-op during Jillian's surgery. Around 10:30 a med student came in and said that Jilli's piloric sphincter looks great and does not have webbing but they called up to our GI and she said that she wanted the Botox anyhow so they were coming to get our permission. This is a crappy spot to be in because your kid is already in surgery. Honestly its not the Botox itself that was my concern, it was the mention of g feeds that was making me nervous. Brent and I had to make the choice on the spot. While there are little risks with the Botox itself all of the implication with us is what had us scared but we felt a little backed into a corner at that moment because everyone said we needed to try it. Brent and I debated for a moment and then agreed to it because we knew it was a hoop we had to jump through to get our kid what she needs even if it does not help her they need to try it to see if it might. As the med student walked out of the room I broke down. Around 11:30ish they came in and said that Jillian's surgery went well and she was in recovery. The doctor came in and showed us pictures. Her piloric valve looks perfect, she has some extra folds in her stomach but don't know why or what it means, and she has a couple of sores in her stomach from the holes of the g port of her gj tube because sometimes stomach lining will get stuck in them and that is likely the cause of the blood we sometimes see in her g drain bag. Then he said that we will need to test to see how the Botox worked (this is the part I am stressed about) so maybe we should pull her gj tube next week and put in a g and she how she does. This is where I got mad. No, that will NOT be happening. You put Botox into a valve that was not broken and somehow think you fixed her genetic disorder... We will not be feeding all of her food into her stomach for a week because I can tell you what will happen... you will fill her lungs with fluid and we will be in the hospital with a very very sick child and I am not willing to risk killing my kid for this experiment. Aspiration pneumonia takes a ton out of her and sets her months behind in all areas and she gets it when we feed her 10mls of baby food once in 24 hours... I can only imagine what would happen if we put 1,160ml into her stomach. The doctor said we could talk to our GI about it (I think he was done talking to me at that moment) and said we didn't have to start anything that day. My mom called to check to see how stuff was going and at that point I was pissed and she said she was leaving work to come help. A few minutes later they came and said they were ready to take Lydia back. After they left Brent and I just stood in pre-op and tried to hold ourselves together. They then walked us to the waiting area to wait for Jilli to wake up enough. That wait felt like forever. After a while they came back and said that one of us could go by Jilli so I went. She was just waking up and gave me a little smile. She said she had a boo-boo and we played guess the body part until I figured out that it was her ankle that hurt because that is where they ended up getting the IV in. Jilli looked like they had done the Botox in her lips as they were very swollen but that slowly started to come down. The nurse turned Sofia the First on for her and she was happy. The nurse and I talked and she agreed that if it was her she would not pull the gj and feed into the g (the thought behind pulling the gj is because the j keeps the piloric valve open but she can't handle g feeds because Botox into the piloric does not fix the reflux or the aspirating). It made me feel better at that moment to talk to a medical professional who is fresh ears and hear them as concerned about the plan as we were at that moment. There was also confusion if Jilli needed to go to IR (she didn't they were able to get her tube back in the right place during surgery) and about a test that neuro asked for them to run on a part of the stomach tissue they biopsied (still not sure if that got worked out). A little while later Lydia came out of surgery screaming and it broke my heart to hear her scream and not be able to go to her. Thankfully they called Brent back a little while later so he was able to comfort her. Brent and I then popped between the girl's recovery rooms. I went into Lydia's room and noticed she still had a NJ tube in so I knew they had only put a g tube in and my heart was sad since before the surgery it sounded like a real possibility that she could come out with a GJ (when she went into surgery we did not know what kind of tube she was going to get). When the doctor talked to Brent he mentioned that we could see about getting it switched to a GJ next week.
Jilli was ready to move to the next recovery area while Lydia still needed to stay in the first area so Brent went with Jilli and I stayed with Lydia. A little while later my mom met Brent and Jilli is recovery. Lydia's nurse went on lunch and a different nurse came in. We have had him multiple times before in recovery so it was a friendly face and we talked about the upcoming walk and about remodeling houses as Lydia slept in my arms. It took my mind off the frustration we were experiencing and that is just what I needed at that moment. It took a while for the room to be ready for Lydia on the 11th floor but then he took us up.
We were on the floor for a few minutes and then Brent, Jilli and my mom joined us. Then our friends Stacy and Caroline came up (they drove 3 hours each way on Friday just to support us and love on us). I was so grateful for friendly faces and Jilli was so excited to see Caroline. We got settled into the room and then a med student walked in. We talked a little bit about the plan and then he said we should think about feeding Lydia in the g. I literally gripped the chair as my blood pressure rose to a level I am not sure it has hit before (after he left Brent, Stacy and mom said they are all amazed I didn't deck him) I explained to him that would NOT be happening and how this child vomits and chokes on her own saliva multiple times a day and that was the point of doing the surgery, so that we could drain her g... not to feed into it because that is dangerous. He also said that she now could not get her GJ tube until she is 7.5kg (she is 5kg, at first we were told the rule was 5kg to get gj, then turned to between 5-7kg at the discretion of IR and now it suddenly got higher meaning we are going to have to keep her NJ in longer) That med student left the room and never came back. I didn't yell at him, I just very bluntly stated that what he was telling me was wrong and was not going to happen. I ended up with a headache from my blood pressure spike from that conversation. I could not fathom how my kids both had surgery to help with issues but neither of them would fix the underlying issues and for some reason GI suddenly thought my kids were "cured." They were looking only through a GI lens and a narrow GI lens at that. I am a logic person and this all was so far from logic. Stacy, Caroline, Jilli and I took a walk to the gift shop. Caroline wanted to buy the girls balloons (they only have the safe kind there thankfully! I love when places don't use latex) so they picked out a Little Mermaid one for Jilli, a smiley face for Lydia and Caroline got Paw Patrol. Stacy and I were able to talk as we walked and it was good for me to walk for a minute.
Genetics had ordered some labs that they wanted done during surgery however they couldn't find the orders so they were not drawn so I asked for them to be drawn on the floor. A lab tech came in and it was one of the roughest blood draws we have had (and we have had lots between the two kids). She walked in and told Brent to put Lydia on the bed and then just proceeded to poke Lydia with a needle and dig around for a long time. She pulled the needle out and stuck another one in right next to where she was digging. She got about 1ml out and then couldn't get any more. Mom, Stacy and the girls were out in the hallway playing during this. Then the lab tech walked out of the room. I had no idea if we had enough blood and her bedside manor sucked. She talked to a nurse and I'm sure she probably overheard me talking to mom and Stacy about how rough that was. She walked back in the room and said that someone would be back at 11:30pm to get more blood.
Dan then came with dinner for us all. I really don't eat much when the girls are in the hospital so a few bites of dinner was a smart thing since I had not eaten in 12 hours. We all hung out in the hospital room and Lydia slept. Jilli was so tired but wanted to stay awake. Brent ran over and picked up our shirts for the walk since it was shirt pick up day.Jilli and Caroline mainly hung out next to each other playing and they watched a movie together. Once it was past crazy time on the interstate Stacy and Caroline headed home. I was so grateful for them coming. Brent walked over to rmh to meet his brother because his brother's computer was broken and he needed Brent to fix it. Dan hung out for a little bit and then headed home. Brent and Brandon came back to the room and hung out for a bit and mom and I took Jilli to see the fish. Brent and Jilli then headed back to rmh to sleep since Jilli can't stay the night in Lydia's room. Mom was going to head home back thankfully decided to spend the night and help me with Lydia (mind you she left from work in the middle of the day, had nothing with her to spend the night but saw a need and jumped in). That time from 9-11:30 crawled by and I was so tired I was starting to get sick. I had asked if there was a mobile on the floor or a bouncy seat so Lydia could lay and look at some toys (she wanted to lay still) but the nurse said they are hard to come by and if we could find one in the playroom then we could use it but there was not one there. Maybe we need to do a drive for bouncers and mobiles because this is not the first time we had this problem.
The tech that came in at 11:30 was much better and got Lydia on the first stick. Her interactions with us were so much better too which is what I needed at that point. She got all the blood she needed quickly. She put the blood into a vile at had an acid in it and put on the lid. Well something happened and the lid shot off the vile like a rocket and blood flew everywhere. Like it looked like a murder scene everywhere... walls, Tv, floor, bed, papers, chair, garbage can, everywhere. She said she still had enough blood from the other stuff she took that it was ok and she called for someone to come clean it up. Lydia went back to sleep and my mom told me to get some sleep too and she would wait up for the cleaning crew.
Our night nurse was amazing and I was so grateful for some calm from our medical team.
Saturday:
Around 3am mom and I both shot out of bed to the sound of Lydia choking. It was her first choke since the surgery and it was rough. Once it was over we got her calmed down and we all attempted to sleep. Around 6am we woke up to the next choking fit and she puked. Even with these two events she was doing so much better then she had been before the surgery. Since the surgery her g tube was left open to drain into a diaper so she was not refluxing her stomach acid anymore giving her less to choke on (this was the goal of the surgery). The surgery fellows did their round and then a different GI fellow came in and talked to us for a little bit. When the GI fellow left she said my least favorite GI would be in soon. Mom went down and grabbed us breakfast and then Brent and Jilli came. A little while later the GI dr came in and we had one of the most pleasant interactions with him that we have yet (he is not the one who did the surgery or our normal GI dr but we have had many interactions with him) He thought the tube in her nose was a NG instead of an NJ so he asked when we were taking the tube out of her nose and we explained the situation and he said ok that the tube would stay in her nose and said that in a couple of months we could change her to a GJ. I just let it be. I was tired of fighting with people about this and figured I will pick up the torch with this again with our GI doctor and stop fighting with people I would not see much after this visit. He said that if she continued to do well that we could go home in the afternoon.
One of the care partners came in with a bouncy seat for Lydia to sit in and I was so grateful for her kindness. Our nurse was really sweet and we went over some of the different things about the tube she has (Jilli never had a PEG g, she had a PEG GJ so this tube is a little different). Lydia took a nap and Brent worked on packing our stuff that was at the hospital up. Mom and I took Jilli over to rmh for a little bit so she could paint. We came back over the the hospital and grabbed lunch. We hung out for a bit and then the nurse came in and said we were being discharged. We packed up all of our stuff and then headed to rmh. Brent worked on packing stuff up and mom and I hung out with the kids. Brent and mom loaded the car and mom headed home. Our friends we met at rmh on Thursday were headed outside to play so we all went out to the playground and rmh gave Jilli a bag for being a great big sister to Lydia while she was in the hospital. Brent took care of doing check out. At that point it was almost 6pm so we hung out and ate dinner at rmh and then headed home. Jilli fell asleep on our way home. Once we got home Lydia needed more pain meds and we realized they discharged us without instructions for pain meds so we worked on figuring that out. We also realized that our air conditioner was not pushing out cold air so Brent messed with that for a while and then turned it off for the night to see if it just needed a break. We brought the kids up to bed and then went to sleep.
Before we went to bed I checked Lydia's mychart and found that at 2am the one blood test came back and it is still off. Her lactic acid should be between 4-15 and her's is 23 (was elevated at her last hospital trip too). Now we need to figure out what that means and what we need to do about it. I spend until I fell asleep researching it.

Sunday: I woke up at 3am to Lydia choking and then at 7am she woke up crying in pain so I got her more pain meds and she went back to sleep. I came down and watched the Today Show about 9/11 and then around 8 both girls woke up. Jilli woke up with a cough that sounded like a dog bark so we came down and gave her a neb. Brent has been down working on our AC which is still not working. Thankfully it is not to hot today! Lydia is in more pain today then yesterday. Jilli was the same way when she got her tube put in. It is different once you are home and not on the hospital pain meds and just laying in a hospital bed. Its been a bit of a rough morning here but we are getting though. Our friend Annette brought over some lunch on her way home from church and my mom is over now to help with the girls. I need to run errands sometime today to pick up preemie diapers since they have Lydia's g tube draining into a diaper. I am hoping soon to figure out a different way that works to drain into (how we drain Jilli is not the best thing to use yet for Lydia) but right now it looks like diapers is what is working.

Thank you so much to everyone who has prayed for us or sent text asking how we are doing. To be completely honest, we are drained. While my kids are both alive and unharmed, the past few days have been rough and many of the things I was praying would not happen did. I also ended up having to fight for the best thing for my kids multiple times and that fight is not over. I know this week will continue the discussion about g feeds and gj tubes. This all just feels heavy right now but their smiles is worth it. The choking decreasing for Lydia is worth it. These girls are worth the fight. We did have several amazing staff members at CHW that were very kind to us and supportive. Ronald McDonald House was AMAZING and such a HUGE blessing. It made it easier on all of us!

I read a blog post recently by another mom with a medically complex kiddo and she was talking about the exhaustion you feel when you come home from the hospital. When you are in the hospital you are on full do mode. Your adrenaline is pumping and you just do what you need to do. I barely eat when we are in the hospital. Once we are home you deal with the emotion. You deal with the lack of sleep. You work at picking up all the pieces that were left when you went in the hospital. You figure out your routine and what has changed since going in. Being in the hospital is hard but in some ways those first days back home have their own level of hard. Today we are laying low and probably tomorrow too. I need to unpack the bags. We need to figure out what is wrong with our AC because Jilli and Lydia both overheat easily (thankful it is cool today). We need to get our grass mowed and laundry done and run to the store. Thank you to people who understand this time of transition and don't get upset with us for us no tbeing able to do much for others during the transition. I know this is our life and our normal but some hospital stays are harder then others and this one really hit (I knew having both our kids have surgery would not be a cake walk, but with how everything unfolded and the limbo we are in right now with plans for the girls it has been harder) It will also take the girls a bit to bounce back. Jilli's throat is sore and her lungs didn't love surgery. Lydia is sore from her tummy muscles being cut but in time both girls will bounce back. We will get back to our normal and doing all the things we try to do.