Brown and Pink Polka Dots : One long week

So last I left this blog was over a week ago and Jilli had croup. That cleared up and her lungs are doing well.

But since then we have spent the week at Ronald McDonald House. Last Sunday we checked in for a couple of appointments and dysautonomia testing, but the week just kept getting crazier. I'm going to take it day by day.

Sunday: We got up and went to Church. We packed the van before with left with all of our stuff for RMH. Lydia's g port of her tube was clogged Friday and had continued to clog over the weekend. It was growing something that was the consistency of a wet noodle. We were flushing it and cleaning it out as much as we could and we figured we would talk to special needs when we saw them Monday. After church we went to lunch with my mom and then Target. After Target we headed up to RMH. We got all checked in and then met up with the Smiths. We all went to the Magic Room together and Jilli picked out a Wonder Woman doll and Lydia got a baby toy. Sunday night Nate hung out with us so Holly and Kirk could have a date night. We took the kids up to the 3rd floor lounge to watch the Muppets Movie.

Monday: We woke up and headed to special needs clinic where both girls had appointment. We got in and our dr was ready for us. We had a good conversation about the girls and coordinating different pieces. We talked with the nurse about the progress on the portable oxygen concentrator and I sent her more info for that on Wednesday. I brought up the feeding tube issue to them and they paged the g tube nurse to come down. At the end of the appointment the g tube nurse came down and looked at it. She said in 30 years she has never seen anything like it. She asked us if we wanted to do something about fixing it and I was like "YEAH!" Lydia was starting to reflux more which can cause her to aspirate on her own stomach acid. Her g port is suppose to drain 24 hr a day but it was clogging so then it was not able to drain so she was refluxing all the stuff that normally drains out. Night time was the worse and she was getting up multiple times a night and not going to sleep until midnight. I told our special needs nurse that I wanted to go ahead and do something because flushing it was not working. She said she would contact GI and figure out the next steps. We had a rehab appointment scheduled for Jilli that afternoon but rehab and special needs are in the same clinic so rehab came in at the end of our special needs appointment. We talked about wheelchairs and decided to go forward with ordering a wheelchair. She called the company for ordering the chair and they said that they had an opening on Tuesday to come measure Jilli so we made that appointment. After our morning appointment we went to the lab to get Lydia's urine. Lydia had a urine test come back a while ago so the special needs dr wanted to run a urine culture again just to get a baseline on things since for Lydia we have only ever run it when there is issues. Thankfully it went smoothly but showed some things that were elevated this time that were not last time but for now we are watching things. In the afternoon we went to hang out with Nate who was now in the hospital. At night we went back to rmh and Jilli did art therapy. My mom joined us for art therapy.

Tuesday: In the morning we went over and visited with Nate. At 1pm Jilli had her wheelchair fitting. We ordered a Clik wheelchair with a pink frame and purple accents. We also ordered a Smart Drive which will help it to keep going when her arms loose stamina. They said it is kind of like cruse control for a wheelchair. Tuesday I also spent the day trying to figure out what was going on with Lydia's tube because no one called me back on Monday. When we got up by Nate's room Holly was talking with special needs and Holly asked me if I had gotten the tube problem fixed and I said no. The people that were there from special needs were not our team but asked what was going on and went back and got someone on it to figure out what was going on. On Tuesday afternoon I got a call that IR had agreed to change out the J part of her tube and try to clean out the g (Lydia had a PEG G tube with a J tube threaded through it) I has skeptical of the plan but they said that they had to try it first so I agreed to it. They said IR could not get us in until Wednesday and if this didn't work they said that there was nothing more that could be done until Monday. At this point I said we had to try something because Lydia had started to cough from all of the reflux. Tuesday night Jaime, Jason and Emerson came to rmh to have dinner with us. It was really nice to get to see them. Emerson and Jilli went to art therapy.

Wednesday: In the morning with hung out with Smiths because Nate was out of the hospital and back at rmh. Nate had a dr appointment and then we met them at Children's and Jilli hung out in the waiting room with them while Lydia and I went into IR. When we walked into IR our special needs dr was waiting there to talk to us too. One of our favorite IR people was there too and we met about pulling out the j, cleaning the g and then putting a j back in. The special needs dr also called our GI dr and she asked for me to send pictures of it as well. We went into the IR room and Lydia laid there nicely on the table most of the time. They pulled the j out and then we flushed the g with water, air and contrast. We got a chunk of stuff out and a hair. Hair is normal, both of my girls randomly get hairs in their g ports. They put the j in and we all hoped for the best. We went back to rmh and went to art therapy. Wednesday night they have movie night at rmh and they were showing Finding Dory. It was a really fun thing for Jilli. They had blankets to curl up with a stuffed animals to cuddle with. Each kiddo got a goody bag that had a Finding Dory toy inside. They also had snacks. After the movie we went to our kitchen with Holly and had brownies and hung out. We got back to our room around 10 and the parking lot filled with cop cars and fire trucks. We still have no idea what happened but they all left eventually without us having to evacuate.

Thursday morning we got up and looked at Lydia's tube and the stuff had already started growing back. I sent GI a message and called. In the morning I taught Jilli and Nate how to make paper snowflakes. Brent came back to rmh at lunch time and hung out with Lydia while I took Jilli for dysautonomia testing. It is a long test that took several hours and multiple different parts... Jillian was a rock star! She helped them put things on and take things off. She hold still when they asked her to. Someone from child life came in and Jilli got to play with their iPad which was fun because it had different apps then ours. For the first two tests Jilli just sat there and played iPad and helped when she could but otherwise played. For the last test they tilt a table to she is strapped on to a 70* angle and she had to stand still. This is where Jilli started to look rough. She had a couple of pulse ox dips and was struggling to stand. Her hands and legs were turning colors and at one point the dr asked her how she was feeling (she was looking rough) and she told him very bad. It is really strange for Jilli to say anything is bad let alone really bad. They try to do that part of the test for 30min but after 20 with how rough she looked they called it quits. She laid on the table flat for 10min and then the testing was over. They gave her a doll at the end for how well she did. During the test the girl's GI dr also stopped in several times. I messaged her, called the GI nurse and emailed the special needs nurse Thursday morning... I was done messing around with Lydia's tube and her cough was getting worse and she was not sleeping because it was so painful. The girl's GI came in and we talked about a plan. It was decided that we would try a button. Technically Lydia is not yet at the weight limit that our hospital has for GJ buttons (I will write more about our hospital and buttons in a different post) but we all decided that trying a button was less invasive then going into surgery to try to place a new PEG. The GI said she would be more comfortible if we stayed around the hospital for a while after it since it was being done outside the weights and I agreed that we could stay at rmh for 24hr after to make sure there were not complications (it coiling into her stomach or perforating her intestines) I called IR and they were able to schedule us for Friday. After the test we went down to the gift shop, Jilli had been asking all week to go to the gift shop and I had told her if she worked hard she could go after her test on Thursday and that little girl worked so hard. When we are in the hospital she is able to pick out a balloon from the gift shop (they don't sell latex ones) and she was really wanting one since we were spending multiple days at the hospital. I told her she could pick any balloon she wanted.... the balloon she got is almost as tall as she is. It was now 3pm and I had not had lunch (I can't eat before big app) so I stopped at West and got some coffee and lunch. The woman looked at me and apparently I looked tried because she handed me a second coffee and told me it was free. We headed back to rmh and had the most awkward conversation in the skywalk where a woman randomly walked up to me and informed me my children's medical needs were nothing compared to her child (she knew nothing about my children and she couldn't even see Jilli although the oxygen tank was in Lydia's seat, honestly I feel bad because I think she was really struggling with what was going on with her child but at that point I had been fighting for days for my one kid and had just helped my child through a test that made her look really unwell on top of not getting any sleep because Lydia had been up most of each night since Friday because of stomach pain from the clog, I just didn't have anything left in me at that moment to help her as much as she was needing) We went back to rmh and played with Nate. That night we had art therapy and Jilli made more paper snowflakes.

Friday: Friday morning Stacy and Caroline came down to help me out. The girls and Nate played for a bit and then Stacy, the girls and I headed over to the hospital to get Lydia's tube fixed. Caroline has a wheelchair on loan until hers comes in so Jilli used Caroline's wheelchair and Caroline sat in Jilli's stroller to and from the hospital. Both girls thought it was fun. We got checked in and our IR nurse came to get us. Radiology is a mess right now; its all under construction. They brought Lydia and I back to a little changing room and the nurse asked questions. She then said the head of IR would be in. If you look back at when Jilli first tried to switch to a button from a PEG (at about the same age as Lydia) the head of IR accused Brent and I of trying to harm Jillian because we asked for a button instead of her PEG which had issues. He claimed we were being paid by the maker of the button to push for unsafe things, it was ugly and everything he said was untrue and hurtful. Many other professionals have since agreed that what he said to us was wrong. Since then the head of IR had not talked to Brent or I, infact in January when we were in for tube changes the head was not watching what he was doing and ran into Brent and looked at Brent funny and walked away with out apologizing. So there I was, sitting in the exact same room that awful conversation happened 3 years ago and I was waiting for him to come in the room and the butterflies were active in my tummy. Thankfully one of our regular IR guys came in the room to talk to me instead. A guy that takes care of my girls and I trust. We talked, it was a quick conversation, we were all on the same page. They came in and put some numbing stuff around the tube (I gave her pain meds before we left RMH) and then they took her back. She was back for over 20min but when she came back to me she was happy. She has a different brand of tube then Jilli (I'll blog about that a different day) but they said it went smooth and she handled it well. They said she even made another kiddo smile who was having a rough day. Lydia is good at that! We then headed back to RMH. The big girls played in the playroom for a bit while Stacy and I ate and then they headed back home as they had already gotten several inches of snow and were expecting several more and they had a long drive home ahead of them. I am so thankful for their help watching Jilli and for Jilli being able to use Caroline's wheelchair because it helped to calm her nerves. Friday afternoon the girls took a nap. It had been a long week for both of them and then we went to art therapy. On Friday nights they don't serve dinner at RMH so Brent picked up Boston Market for us and the Smith family so we all ate together and played Ticket to Ride and read the cards from the game Great Evil.

Saturday morning Lydia's cough was worse. We went to brunch and she was happy just sitting in her stroller which is not like Lydia. She is fine in her stroller if it is moving or there is someone talking it her but just sitting there is not her thing. After brunch we went down to the art room. I had brought a bubble making kit that I had from when I taught school agers in the summer at the daycare. Nate and another little girl from RMH joined us and the kids were exploring how to make bubbles. Holly was holding Lydia and she called me over and said I needed to check Lydia out because she could feel Lydia's lung rattle. Nate does not have lung issues but Holly said she knew that what she was feeling was not right. I agreed with her and listened to Lydia's lung and could hear it rattle. Brent and I talked and decided that it was ER time because we didn't want to head home and have her lungs crash when we are an hour away. Brent and Jilli stayed at RMH and I walked Lydia over to the ER (thank goodness the hospital and RMH are connected!) I checked her in and the first nurse said she could hear crackling in the same spot all of us at RMH did. They brought us over for vitals and she fell asleep before we could get her on the scale which is not like Lydia at all. They took a rectal temp and it was 99.8 and my kids and I normally run in the 97s. They then sent us to sit down. Then a second nurse asked to listen to Lydia and she said that she could hear crackles as well in the same spot. Then a third nurse came over and she looked at us like we were all crazy and said Lydia's lungs were fine. They then took us back to a room. A little while later my mom came in. Then the fellow came in and we talked. She said she heard some weird lung sounds but she wouldn't call it crackles but more like someone walking on snow. The attending came in and listened and said her lungs sounded clear. They then sent us for a chest x-ray which came back clear. They called special needs and the fellow told me that she told special needs that Lydia looked good... mind you the child who barely ever naps had been sleeping off and on for 3 hours and was bright red and you could hear her breathing and see her working at breathing, but since she told special needs that Lydia looked good they said not to do antibiotics. I asked her then what she was going to do for my sick baby because it was all the messing around with the g tube that caused this (not what they did on Friday but it being clogged all week causing extra reflux and when my girls reflux some of the reflux ends up in the lungs and while it was not showing up on a chest x-ray the lungs were not liking reflux in them) She said she was fine with us giving Lydia a neb. The respiratory therapist came in and pointed to the same spot in her lungs and said she heard crackling and her lungs sounded tight. They did a neb and Lydia slept through it. A while later the fellow came in and said that there wasn't any more that she could do for us and thought Lydia's lungs sounded fine. I expressed my worry about how her lungs sounded and going home. She agreed that it was best that we stay at RMH another 24hr to make sure she didn't crash more. Lydia and I headed back to RMH and my mom went to Cheesecake Factory and brought use and Holly cheesecake. She came back to RMH and had dinner with us and then headed home. After dinner the boys and Jilli played Settlers and Holly, Lydia and I relaxed. We did neb treatments every 4hours including in the middle of the night. You could still hear Lydia breathing and feel the rattle.

Sunday: Brent had sound at church so he got up early and left. I got up to do the girl's pumps and give Lydia her neb. As I was doing Lydia's neb Brent called, my van had died on the interstate. I called my parents and they said they would come get him. After he got off the phone with my a cop pulled up and asked if Brent needed help and called a tow truck. We debated where to have it towed but Brent was still closeish to RMH so we decided a Honda dealership close to where he was made the most sense. My parents went and picked him up. We are pretty sure it is the transmission. Last week I said I was a little worried about the transmission but it didn't seem urgent (it was still driving fine, it just caught funny a couple of times). We will find out tomorrow once the dealership opens what is going on with it. Its a 2004 with 220,000 miles on it so a new transmission will likely cost more then it is worth. Our plan has been to buy a used van once Brent's car is paid off but there is still a few more months of payments on that. I guess we have some choices to make sooner then we thought but thankfully my parents let us borrow their van for right now. Lydia got up then at 6 and Jilli slept for a little while longer. I went up and got a little breakfast and then we watched TV in the room until Lydia's 10am neb. After that neb we headed to brunch with Holly and Nate. After brunch we headed back to the room and got a couple of things done and then went to the art room where we painted. We then headed back to the room and both girls fell asleep. This week has been rough on us all. Brent came back after church and we worked on packing up the room. The girls and I headed to the playroom so Brent could finish cleaning the room and load the car. We then headed home and got unpacked. Lydia is still getting nebs every 4hr but played with toys a little tonight. If she is still needing nebs tomorrow I will call her ped. Jilli has PT tomorrow but I am not going to have Lydia do PT because I don't want to push her lungs.

Its been a week but I am so thankful for everyone who helped us through, from prayers to people spending time with us and the doctors who did the right thing. We take each day a step at a time. Tomorrow we figure out the car more and Lydia's lungs but now it is time for sleep, something between Jillian being sick and Lydia being sick has not really happened in weeks.

***Tuesday February 28th is Rare Disease Day. To raise awareness people all over will be wearing jeans for genes. We would love to have you join us. If you wear jeans on Tuesday please post a picture on my facebook or on this blog as Jilli loves to see the pictures of people she knows wearing jeans on gene day!***