6/24- It was a typical Sunday for us... busy! We went to church and then out to lunch with Brent's parents for his mom's birthday and then had dinner with my parents. We got home and worked on packing. As I went to go to bed Jilli started with her barky cough and her pulse ox went down. We started a neb and gave her 2lpm of oxygen and she leveled out. We went to sleep praying for a calm night.
6/25- Jilli woke up coughing in the morning but a neb helped and she was able to go back to 1lpm of oxygen. We started her on 30mg of prednisone. She could still talk and walk so we were just watching her close. The kids and I headed up to rmh to check in. We took it easy that day and rested and played with the girls toys from the magic room. The house was very full. We went up for dinner and they ran out of food so Brent went and picked us up dinner while Stacy and I took the girls to music. Jilli was exhausted and didn't last long.
6/26- We had a calm morning and my mom can up with lunch. The girls had MD clinic in the afternoon.
- Neuromusclar: Lydia's genetic testing is back. Jilli and Lydia have NONE of the same mutations! This is just crazy! Whats even crazier is that they both have a muscular dystrophy gene... but not the same one! We meet with genetics in a few weeks to talk about it more. We talked about the biopsy and we decided to just run the tests genetics wants on it for now and if he wants more run after those results come back that we can do that. We decided that since we were accepted to NIH that all testing and such will be defaulted to there for now.
- Pulmonology: Both kids are completely off of maintenance inhailers now based off of research on the inhailers with people with muscle disorders... the oxygen does what we were always hoping the inhailers would and inhailers have side effects. We talked about how bad of an allergy season it has been and how it has been wise to keep them on double does of allergy meds. We talked about doing prednisone tapers instead of big bolus and then stopping. We talked about Jilli's drooling because she was drooling a ton while we were there however that is a symptom of her crashes and not something that happens all of the time so we ruled against that. We talked about Lydia's increased oxygen need in water and she was fine with us increasing the oxygen with activities like that as needed. Lydia's arms and legs turned purple while in the pool at Great Wolf and upping her oxygen fixed it. I am grateful that our new pulm gives me a little more control with things like that because with our old one we would have had to go to the hospital in the dells however that wasn't needed, there wasn't anything an ER could have done that we couldn't do with upping the oxygen. If upping the oxygen didn't fix it we would have called an ambulance but I am thankful that this doctors lets us use our tools a little more first because the fix was simple.
- Rehab: We talked about the girl's leg and spine x-rays which look fine except Lydia's last one was full of poop... we keep thinking she is cleaned out well but then an x-ray shows differently. She asked if we wanted to order Lydia a special needs stroller and we declined, she is only 19lb, she still fits fine in her infant one. I would rather wait and save the headache and fight for when she needs one.
6/27- We woke up and turned Lydia's pump off early. Jilli woke up coughing more so we started the morning again with a neb. Her overnight diapers smelled like ammonia. My mom came to watch Jilli during Lydia's surgery because we need to save Brent's time off for NIH. I brought Lydia over to check in for surgery and mom brought Jilli to OT/PT. Lydia did alright in pre-op... she wanted to stay and sit in the little chair by the scale but once we got into the pre-op room she didn't want to look at anyone and really missed Jilli. Our special needs nurse came in and talked to me for a bit as I had called her that morning about Jilli. While she was in the room said that the special needs team would like to nominate Jilli for a Make A Wish trip. I have always felt so torn about a MAW because I don't want to take funds away from someone who needs it more and there is a bit of admitting you kid qualifies for one. After talking for a bit I agreed to let them nominate Jilli for one. I have no idea the next steps or anything. While in pre-op with Lydia mom text me that Jilli still had not peed since waking up and was looking worse and worse. The special needs nurse and I came up with a plan if Jilli needed to come to the ER. The OR was running behind so we were in pre-op for a while. They came in and gave Lydi the Versed... she becomes so funny on that! She starts licking things and she was convinced that Emerson was going into surgery with her! They took Lydia back and I headed to the waiting room. I got a text from mom that Jilli's vitals didn't look good so we made the decision that it was ER time. I called Brent to see if he could leave work early to come help and I called our special needs nurse to start our plan. I felt so helpless sitting there in the waiting room with one kid in surgery and one kid in the ER. Nate and Kirk came to sit with me in the surgery waiting room. The surgeon came out and said surgery went well and they were going to keep her on 1lpm of oxygen through the night. He asked if I thought ICU or 9th floor was the best place to send her and I said let try 9th floor and if she needs more we can asses that. He said they would bring me back to see her in about 20min but it ended up being closer to an hour. They brought me back and she wanted her shoes on. She is so silly! I held her on the bed. My phone rang, it was genetics wanting to schedule the follow up... I told them I would have to call back... I was at my limit at that moment hold a toddler in post op and texting with my mom and Brent in the ER. Lydia decided she wanted me to hold her on the bed to go up to the room so they got a nurse to push our stroller up... Lydia didn't like that, she thought the nurse was taking our stroller. We got up to the room and the nursing head for the floor came in and said she had heard that both of the girls were being admitting so she put Lydia in the corner room and Jilli in the room next door so they could be close to each other, I really appreciated her! I hung out with Lydia for a while. Our special needs doctor came up. He had just seen Jilli in the ER and we came up with a plan. Lydia's surgeon asked him to co-admit Lydia so he was up checking her med list before he ordered her meds. Jilli then came up to the floor and got settled in the room next to Lydia. In the ER they did an ultra sound to see how much urine was in her bladder and she only had 5cc of fluid in her bladder. She was really dehydrated. She had an IV going and her feeding pump. We spent the rest of the night bouncing between the two rooms. Lydia was funny in the middle of the night when they did vitals... the first time they did vitals she woke up and I laid with her for a couple of minutes and then went back to my bed... the second time I tried to do the same thing but as I got up to go to my bed, with her eyes still closed she gave me a stern look and pointed at the pillow to lay back down next to her.
6/28- I woke up a little after 6am with all of the surgical residents looking at me. We decided that since Lydia was handling the pain well and there was no signs of a bleed that after morning meds she would be discharged. Jilli's pee still really smelled which is a sign that even though she had started to pee that her body was not ready to stop the IV fluids. Lydia got discharged at the same time oxygen delivery came to RMH so Brent ran over there and I worked on moving Lydia to Jilli's room. We spent most of the day in Jilli's room just hanging out. Lydia was more daredevil on her leg then she should have been... that girl has willpower! Lydia and mom went to gardening at RMH and Lydia loved to see Ann. Lydia's leg started to hurt a lot at bedtime so we gave her more pain meds but overall she did well with pain during the day. Art Holly came in by Jilli and they decorated her neb mask together... that is one of Jilli's favorite things to do in the hospital!
6/29- Jilli woke up a looked more like herself. I had a phone meeting at 10am with NIH to go over the program that we were accepted under, what our next steps are and more info about the girls. The phone call lasted about an hour... including Jilli's rounds happening during it. Stacy and the girls and my mom kept the girls entertained while I was on the phone. School came to visit Jilli and she made a robot! On Wednesday RMH had a group come in to make stuffed animals with kids and they sent over stuff for both of the kids to make an animal so we did that together in the hospital. Jilli had not pooped in a few days so we ended up doing a suppository which caused a lot of cramping but only a streak of poop until late afternoon. At 2pm I had a phone meeting with the Children's Hospital foundation. I have been asked to speak at a golf fundraiser with our Special Needs doctor to help raise funds for that program. Its a really cool opportunity and I am really excited. Around 3pm Jilli was discharged from the hospital. We went back to rmh and had a calm night.
6/30- Brent went home to work on our bathroom with his dad (we have 2 walls again!!! there is still so much work to be done). I stayed at rmh and my girls and Stacy's girls all played together. RMH has a relationship with a beauty school in the area for people staying at the house to be able to get their hair cut. My parents and Stacy watched Lydi so I could take Jilli. She was so excited and felt like such a big girl. When she is in the hospital she sweats a lot so it was good to get her hair cleaned up. We came back to RMH and we started cooking dinner. We had signed up a while ago to make dinner that night at RMH and family and friends joined us. We served so many people!!! We made BLTs, potato corn chowder soup, pasta salad, salad, and strawberry lemon-aid bars for dessert. By the time were were done we were tired, but a good tired after hard work.
7/1- We took a family morning! We went to Cheesecake Factory for brunch... something we have talked about doing for a long time. We then ran a few errands. My parents gave Jilli the Playmobil wedding shop the night before so Sunday afternoon Jilli and Stacy's girls worked together to build the wedding set and play with it. Jilli's friends Ashton and Grace checked into rmh and the kids all played Playmobil together for a while and then we all went to the movie room to watch Eloise. Jilli LOVES the Eloise movies and we watch them over and over at RMH and she was very excited that daddy ordered her the Eloise at Christmastime move while she was in the hospital so the kids all curled up in the movie room and watched it together. After dinner there was dance therapy which Jilli did for a short time and then we headed to be early and her body was tired! We were able to space nebs out a bit.
7/2- We woke up and went to see the dino exhibit at the zoo with friends. Jilli had an echo and then we met with Cardiology. I really like our new cardiologist. He said that Lydia has fluid around her heart but at this point it is just at a level that we need to monitor it but we don't have to do anything. The bottom of Jilli's heart has a thicker muscle then it should... this is typically seen in kids born with heart defects or older adults who have had multiple heart attacks because in both of these groups that part of the heart is trying to compensate for the issues in other places... however Jilli doesn't fit into either of those groups so we are going to keep a close eye on it to see why her heart is getting thick in that area. One of the genes that Lydia's testing came back with is a gene that can cause heart arrhythmia issues so we did an EKG on both girls which was normal. A lot of watching... but I trust our doctor that if anything changes he will be on it. We went back to RMH and had a rest time. That afternoon Kids From Wisconsin came for a concert for the house. The girls LOVED it... there was a dance party during it, I was a little emotional standing there watching my kids so happy after the rough week they had along with their friends who were also having hard weeks... but for that time they were all able to be kids! We had dinner at the house and I worked on one of my tasks from NIH... write down the name and specialty of every doctor we have ever seen! It took me hours to work on this! The night Jilli and Stacy's girls all played Playmobil together and then we headed to bed.
7/3- In the morning I worked on more of the NIH work and the girls played with friends. We headed to PT where Lydia did great! Jilli only made it for half of her normal time but she worked hard during that time. We came back to the house and had a long rest time. After rest Jilli went to play with her friends and was sitting on a climber thing... she went to get off and her motor planning and muscle coordination was off and she fell off and landed on her knee. She cried for a bit but then seemed ok. We also did art therapy with friends. Jaime, Jason, Emerson and Oliver came over for dinner and then the kids played. Lydia loved putting Oliver's passy in his mouth... she loves babies so much! Special Needs was also able to go into shared records and get the records from Madison because despite asking for the records they never came so I am thankful that SN was able to help.
7/4- Brent went home to mow the lawn... which didn't happen because the lawn mower kept smoking. Jilli woke up saying her knee really hurt. I told her lets get up and get going and see how it does. When we were getting her dressed she wasn't standing on it but I thought she was just tired and messing around. The kids and I ran to Target to pick a couple things up and then came back to the house and Jilli wanted to play with Grace and Ashton. At first she played in her wheelchair but then she wanted to walk and then we saw how messed up her knee was... she was trying to walk on it but was wincing in pain with each step and falling over and having to hold onto things and it was hyper extended. I called Brent and he came back and we headed to the walk in... a long drive because there was a parade that took a lot of work to get around. We got there and the doctor looked and it and they did x-rays... no broken bones! They wrapped in up and we were on our way. We went back to RMH and we had dinner from PF Changs with friends and then the kids played games and watched a movie. Jilli was excited that she got to get hooked up and do her meds with her friends... when all of your friends are medically complex, doing meds together is a fun thing. We were going to go to the top of the chw parking garage to watch fireworks but the ones close by were cancelled due to rain. As we were headed back to our room though Grace's mom came out and said you could see some fireworks from their window so a bunch of us huddled together in their room and watched the fireworks... it worked out... there was no bugs, no traffic... the kids loved it! Grace and Ashton shared glow sticks... the kids thought it was perfect!
7/5- We woke up in the morning and both kids had peed all over so we started the morning doing laundry. Oxygen delivery came to RMH so the girls and I took care of that. Jilli played with Grace for a while and we took a long rest time. We went over to the hospital to visit with Ashton and then had dinner at RMH with Grace and her mom. Jilli, Grace and Brent all worked together to make brownies and then the kids went to bed. I had a crazy experience in the kitchen... some days community living has its challenges... sometimes I would love to make people an etiquette book... not because I am perfect at it but man its something you notice in community living that some people have learned... and some people have not. Brent and I worked on packing some.
7/6- Jilli woke up at 6am crying that her ear hurt. I got her to go back to sleep for a bit and when she woke up again it was really red. I called our special needs team and we decided that she would do PT but if she spiked a fever she would go to the ER otherwise we would wait until the walk in opened at 5. Her leg was also much more swollen then it had been before. We went to PT and Lydia did great. Jilli was limping a lot but gave it her best. Her PT said based on how she is walking she believes she dislocated the patella but that it was back in place now. Jilli only lasted half a PT session again before she got too tired. She laid down on the mat table while we worked on cleaning up and she fell asleep! We brought her to the car and she fell right back to sleep. We got back to RMH and she kept asking to go back to bed as I at quick and I brought her to the room and she went right back to sleep. She slept for almost 5 hours!!! Jilli gave up napping a long time ago and even then she didn't sleep for 5 hours! Brent got there and we got everything loaded in the car and checked out. Brent took Lydia with him and Jilli and I headed to the walk in. Thankfully there was not much of a wait and they got us back quickly. Her ears were full of wax which is kind of normal for her but her right ear had puss and was bludging. Her ear tube also was no longer in the ear drum... which Jilli had mentioned before she had gone into the hospital that she thought she needed ear tubes again because it was getting harder to hear gain. We started her on a 10 day coarse of antibiotics and then headed toward home. We stopped at Walgreens on the way home... as a mom can I make the request that people not blast their bass in a drive through line... poor Jilli, it hurt her ear so bad. We got home and she watched a show and went to bed.
7/7- Jilli says her ear feels a little better this morning. Around 11 she said her chest hurt so we did a neb. All of the glue came off of Lydia's leg this morning. Lydia is acting very 2 today 😮. Brent got the lawn mowed this morning. We need to run to Target to pick up some basics and unpack (our entry way is a hot mess at the moment with all of our stuff) but motivation is not coming easy today.
Other random thoughts:
-We are walk/running the the Children's Hospital run/walk in September and we are still looking for people to join our team and we are trying to raise $3,000... however currently we are only at 5% of our goal... I know part of this is on me, I have not had the time or energy to do as much fundraising this year and I have not mailed anything out to people... but we are really excited about the event but we need people to partner with us to either walk or run that day or donate.... HERE IS THE LINK
-RMH has meals at the house every night of the week except Friday and brunch on the weekends. I just looked at the calendar and they are in need of people to come cook meals. For a meal you buy and plan a meal for 70 people, go to RMH to cook and serve the meal and then clean up. It is about a 4 hours time commitment the day of (plus shopping for food). These meals are a HUGE deal to families staying at the house. These meals came be as simple as buying Costco pot pies and salad and heating the pot pies up... to making a full big meal (I advise staying away from tacos, pizza and spaghetti as those are served a lot). This is a way to be the hands and feet!
-We do not know our NIH travel dates yet... we will know soon. It could be anytime from now until the start of next year.
-yesterday was the 2 year anniversary to Lydia's first hospital say... when she became a tubie too. Its been an interesting ride and my eyes teared up a bit when that popped up on facebook yesterday. I am thankful for our little spunk and how she doesn't let anything hold her back.
-I also have the privileged this month of writing for Complex Child again. Go check out my article about traveling with medical needs. CLICK HERE TO READ IT
-Anyone have a Keenz wagon? What are your thoughts? We use our fordable wagon a TON at RMH and it is starting to look and sound like it. We need something different at some point and the Keenz looks to be really good but I would love some real life feedback! I am seriously thinking about using my birthday money this year to get one lol
-RMH has been very full this summer... if you are not able to go to make a meal they are in need of travel sized toiletries, pre packaged snacks and new toys for the magic room/fire place... you can mail them directly to RMH or get them to me and I will bring them up as we will be at rmh at least twice more this month.
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