Wednesday we headed to Milwaukee for a blood draw for Jilli. They were supposed to draw her Coq10 levels last month however for some reason they ran b12 levels?! So we had to get that redrawn. It took three people to find a vain but she did amazing. She told them a couple of times that she didn't really like what they were doing but she didn't fight them at all and helped them look for the vain. She also watched her hospital songs on YouTube. She sat in the chair all by herself. She is one strong little girl! Once it was done she asked for a cool band-aid and they said the hospital does not provide fun band-aids any more, only the plain ones. She said she understood but looked a little bummed when one of the other phlebotomists went and looked and found two. Apparently one of the phlebotomists goes out and spends his own money to give kids fun band-aids. Maybe that is a fundraising idea in the future for the hospital, maybe something to remember in the fall after the run/walk. She was all excited as she left there with her Doc band-aid and Dora sticker.
We then headed back to RMH and Jilli and Nate played in the art room. After dinner Brent helped Kirk moving some of their things into storage and Nate and Jilli played some board games. They currently have a scavenger hunt around RMH with a secret message so I took Jilli and Nate around the house. There was a big storm going on and the lights were flickering and water was coming into the green room. It was an adventure! While the guys were out they picked up Kopps so we had that and then headed to bed.
Thursday morning the girls and I headed to Nate's room to help them pack and clean. They have rented a house in the area and are headed back to their home state to pack up all of their things to move here. It felt strange to not have them at RMH once they left because they have been there since last July so every time we have stayed there we have hung out with them (we met during art therapy and now Holly is one of my closest friends) but I am so happy that they are moving here.
Thursday afternoon we had Special Needs clinic. Here is some of what we talked about
-They are going to help coordinate surgeries in August. Jilli is having ear tube surgery and is supposed to also have some GI stuff done however communication with GI about it has been confusing. We also still don't know if pulmonology is add in too. The special needs nurse and I have been working on this all for a couple of weeks and not getting very far so now the doctor is taking it over and making sure it all gets figured out. The goal is to also do Lydia's year surgery that week as well so he is going to work on making that all happen.
-We talked about Jillian's pulse ox. She has been hooked up to it 24/7 since April. Her numbers dip at times we always have known they do other then a few odd overnight dips. However the pulse ox also errors a lot, the battery sometimes sucks, she trips over it, and is walking funny because it is attached to her toe. We talked about how it is not telling us anything we don't know but is causing issues. He agreed. So the new plan is that she has to have it on overnight since no one is awake watching her or times I think she might be running low. He said since I am with her 100% of the time and know her signs that he is comfortable with that plan. I am so thankful. I don't mind taking the feeding pump and oxygen with us everywhere, I know how much those help her however the pulse ox is frequently a pain without much benefit. She was playing iPad while I was talking to the doctor about it and I stopped the conversation and told her she didn't have to have the pulse ox all the time and her jaw dropped and then she got a big smile. She hates the pulse ox so to her this morning when she got out of bed and was able to take it off she was so excited!
-We talked about underlying diagnosis. Jilli just went through a mini crash and we talked about genetic testing. He talked about how the girls keep him up at night pondering what might be the connecting piece behind everything... we know they have a muscle disorder and a connective tissue issue but what ties everything together?! He talked about how he has thought and looked into if any other hospitals had any ideas to help us and he is not finding anywhere. He said he is looking at bringing the girls' case between the Undiagnosed and Rare Disease (read more about that progam here ) to see if they have any ideas. We talked about the mechanical issues of the girls' lungs and why the need for oxygen. It was nice to have a high level thinking conversation about the overall medical needs of the girls.
-We talked about the wheelchair and about how Lydia is going to need a new bed soon
-We talked about communication with a couple of our specialties. To get pulmonology to answer you is like banging your head on a wall. You never get the same person and often times no one ever contacts you back. For GI I love our doctor but sometimes getting questions answered is frustrating because they don't get to her. He said he is going to bring that up in a meeting because I am not the only one who is feeling that way. I am glad he is able advocate on a hospital level for us and for other families.
It was a really productive appointment. We were in with medical staff for 2 hours. Jilli love our special needs nurse and she was sitting on her lap and playing with her during the appointment. They are so sweet with the girls.
During the appointment Jilli did tell them a few times that she needed to finish up because she needed to get to gardening. After the appointment we headed back to RMH and Jilli got to do gardening while Lydia napped. She LOVES gardening at RMH and on Thursday she was the only kid outside for gardening so she got to pick stuff and plant stuff. They also learned about the life cycle of a butterfly. If you check out RMH's website they just did a blog post about the garden. We are so thankful for garden time! We then packed up and headed home. We head back to RMH on Saturday to make dinner for the families there (if you are still interested in helping let me know today please)
On our way home we stopped at Quaker Steak for dinner and Dan joined us. Today we are laying low. We ran to Target to pick a few things up (our Target has marked down a ton more toys so that would be a way to stretch toy donations to RMH for the magic room... wink wink) and then are working on cleaning the living room. I need to work on unpacking and Brent is going to mow the lawn tonight. All those fun adult things.
We did get Lydia into Shriners sooner. She is going on Thursday. I have taken video to send to them of what is going on with her foot because she likely will not stand on it while she is there (at least that is how she has been at all other doctors). I am praying for clear communication with them for why she needs interventions now and for us to make a plan together to best help her.
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| Lydia with her toys at her feet lol |
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