Jilli
-We talked about how for her crashes she needs to be admitted for at least 24hours for observation just so we know what way things are going and so I'm not dealing with a resting heart rate of 180 over an hour away from the hospital. There computer system changed some and so they are able to do a brief write up about a child and have it in a place where everyone who interacts with her is able to see it and in that spot he is going to write that if we come into the ER with crash that they need to admit her. Hopefully this will help us if we have any more crashes. We also talked about how sometimes with these crashes she is just going to need to be in the hospital for daily therapy and that is just part of it, the hard part is that it is not a rehab hospital however they are able to justify them needing inpatient PT/OT for a few days. We talked about how the weather seams to play a part in her muscle tone (she had a hard day in therapy with her muscle weakness, she doesn't do well with big weather shifts like we had this week) but that no one is sure why. We talked about having a standing order for that urine test that was off and he said he wants to talk to neuromuscular to see if they agree.
-When Jilli was last admitted they brought up our case going to something called the Nelson group at chw. This is a group of all the top people in each department and they sit down together and talk about the tough cases. Our special needs doctor would like that to happen with our case. He did get some push back because we have personally seen so many of the doctors on that team that there was question if everyone talking about it would help but we are pushing that we think maybe it could. He said he is going to talk to them again. I brought up that our PT has offered to give them her notes for that meeting and he said that if they make him the presenting doctor that he will contact me about getting releases signed for that. I am really hoping they take up our case!
-He also mentioned NIH. NIH has a rare disease program where they look at things and try to come up with a diagnosis. I do like that he called it sraight with me that he has not had good luck with them coming up with something chw didn't because chw offers exome sequencing (that is what many people go there for because not all hospitals offer it. He said sometimes they become fixated on studying things about your kid that they find interesting but isn't of help for the child or family. NIH has also had some budget stuff this past year.... He said that maybe down the line it is something to keep in the back of our mind but not to hold too much stock in it because we have done the same tests they would do.
Lydia
-Big thing we talked about was her starting oxygen and how amazing that has been for her! We also talked about how much the entire process sucked! Our SN doctor use to be an ICU doctor and he was talking about how it just doesn't make sense to him for things to take so long to be looked at because thats not how practicing medicine works in his brain. We talked about how horrible the oxygen company is and how they have heard about our issues from others and agreed its not acceptable.
-I brought up how I think our pulmonologist is great at the things she is good at but how I feel that at this point I think Lydia would be better served in the MD clinic like Jillian. They agreed and said they would put the referral in to see if she would be accepted. That is a hard thing to hold your breath and wait to see if a group of doctors is going to accept your kid. SN said that given the changes that Lydia has had over the last few months he feels like her level of care has increased and because of that he agrees with moving her to a higher level of care.
-Vaccines came up because Lydia is unvaccinated because the assumption is that Jilli's reactions to them are related to the underlying disorder. They put in the computer that she is allergic to them, like how Jilli's chart is, so that no one tries to give her a vaccine. So far it hasn't been an issue but every once and a while you get a hot head med student so its better to have your butt covered.
-We were talking about Jilli needing her next echo in 2019 and I brought up that we don;t have any baseline on Lydia's heart. We don't currently have any reason to think its an issue however the heart is a big muscle and the girls have a muscle disorder so keeping tabs on it is a good idea. Jilli gets an echo every 2 years and SN said to bring it up to MD clinic and if they don't do the referral then SN will for Lydia.
-Lydia's current pulm said to stop her allergy med (that she has been on since she was about 2 months old) to save ourselves 5 seconds out of the day. I don't think that is the best plan. First, we have those 5 seconds to give, if our kid needs a med then I don't care about the 5 second. We do that med at the same time as others, it really isn't a big deal. SN said to keep the med. Its an over the counter med anyhow and SN said it was up to me but that they advise keeping it.
-When the scripts were sent for oxygen they didn't send a script for a pulse ox for Lydia. Jilli was one but there have been a couple of times recently were they both needed one at the same time. SN said they would contact pulm to ask them to send a script for one. She doesn't need it all the time but for spot checks when I suspect something.
-We talked about Lydia's leg bowing and how she has leg braces but we have never done any x-rays to see how much the bone is bowed. The braces have helped a lot (I wish we had a pre x-ray) but she is turning her legs in more now. They said to talk to MD clinic about that and see about going to Ortho at chw to get x-rays. We talked about how often people are worried about too many x-rays and only doing x-rays when needed but with the girls we still try to limit but at the same time they are already way outside of the normal amount a typical kid would have so we tend to worry less about one more.
It was good to meet with the team and come up with a plan. We will see them again in 6mo.
Yesterday after SN we went back to RMH and Kohls was there taking down the Christmas decorations and Jilli asked if she could help so they let her help take down the big tree. She loved it. At the end she said she wants to work at RMH when she grows up. She said she is going to leave Sundays for going to church but she is going to work at RMH on Saturdays, be a doctor and nurse on Tuesdays, go to space on Thursdays, and be a teacher on Fridays. The girl has goals!
After we left RMH we headed to Nate's house to have Christmas with them. It was a fun night. We ordered in food for Bel Air and I got the taco for RMH (all the money from the taco goes to helping RMH redo the 3rd floor long term kitchen) and it was SO yummy! We had fun hanging out.
This morning I got a call that Lydia was accepted into the MD clinic. I am SO excited! Its time. Its time this team is brought into her case too. Its a balance of things, because there are many tests we are not doing on Lydia because we have results already for Jilli, but there are other things where I don't want to miss something on Lydia or push something aside because so many of the diagnostic things are focused on Jilli. Lydia needs to see neuromuscular, the muscles on her inner legs are becoming visibly atrophied (as noted by her ped) so we need to be talking about that. She also needs to see the pulm in that clinic and have her lungs looked at from a muscle stand point. Also having rehab involved for these med supply issues would be helpful.
The girls both had therapy today and Lydia had the best therapy day she had in months! It was amazing to see. She did great in speech too. Her words have really taken off... she even learned the word no... Jilli had a tired day but I knew by the look in her eyes when she woke up that her muscles were tired. She worked hard but everything was hard work today.
After therapy we were at Walmart picking up a couple of things and I got a call from Brent. He works from home on Wednesdays so he can deal with Jilli's oxygen delivery. Them delivering reminded him that I had called there yesterday to see if there was any way we could get Lydia's oxygen switched over but I never heard back. He called and talked to someone and they talked to their boss and they agreed to take Lydia!!! This is HUGE! This means both girls are able to get oxygen from the same place we have been getting Jilli's oxygen for years. They have their issues but their issues are small compared to what we have been dealing with from the other company. I am so excited. I was trying to hold back tears in Walmart. This will make life so much easier. Now the pieces just need to fall together. They need all the scripts form the doctor and everything needs to be delivered. That didn't happen today so that is the goal for tomorrow. Please pray that this works out. I am trying to hold in my excitement until I have physically signed the paperwork. Then we will need to call the other company and tell them to come pick their stuff up which I'm sure will take days, and I am such a non confrontational person that calling to tell them we are ditching them makes my tummy churn but they have sucked so badly and going with the same company as Jilli really is what is best for our family!
Tonight we had a great night. Jaime, Jason and Emerson came over to celebrate Emerson's birthday. We had a really good night. It was fun hanging out. The adults played that game Kinderperfect... if you are a parent this game is so funny! It is like Apples to Apples for parents. I think it is now in the list of one of my top games. It also makes me laugh because it feels like not that long ago we were all college kids and now we are playing a parenting board game while our kids are playing. I am thankful for friends who we are able to live life with through the multiple stages!
The past two days has been time of things coming together. We spent time at RMH and got to see the amazing staff there that we care so much about, we got to spend time with friends, and multiple medical pieces have come together. Tonight I am so thankful.
On a side note, RMH could use some prayers and likely some financial help, they had a water pipe burst this past weekend causing damage. I am sure insurance and business partners are helping with a lot but water damage is never fun. Its hard to see a place you love hurt, but they are working hard to fix everything!
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| Lydia in Elmo clothes! |
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| Headed to the magic room! |
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| Lydia playing in the play room |
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| music therapy |
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| Nate! |
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| Jilli asked to play her hospital songs. Thank you Cincinnati Children's for making a new hospital music video... I really thank you! |
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| Lydia pushing her oxygen. We are going to look into getting RMH another one of these carts because they work great for pushing oxygen around! |
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| A true friend carries your oxygen for you! |
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| The person holding the basket is from Kohls. She was SO sweet to Jilli... she also had her wisdom tooth removed that morning and was still at RMH helping take down Christmas with gauze in her mouth! |
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| Jilli playing piano |
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| wrapping the Christmas ornaments up |
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| Jilli in OT |
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