Neuromuscular

So our morning got interesting... I got a call from our medical supply company. Here is the jist:

them: did you get our email?
me: yes
them: did you understand it?
me: yes
Them: we included info in it for another company, they have lots of supplies too, if you just want to move your entire account over to them we would be good with that, just let us know and we will take care of all of the paperwork.
me: let me think about it
them: bye

Brent works from home on Wednesdays so I walked into the other room and explained to him the conversation that I just had and we both agreed that we were just told to go someplace else for our med supplies... nothing like starting the morning off that way. At that point I just wanted to blow dry my hair not have that conversation with med supply.

See its not a simple switch. Its not like driving from walmart to Target. There is equipment swaps and figuring out what our insurance has paid off making us the owners and what they own and scripts from doctors and setting things up with a new company and finding a company that supplies what we need. Its a mess. And a mess I was not planning on this week. This whole situation just blows my mind. We have not been disrespectful to them. We have not yelled or sworn at anyone. We have been firm a few times but at no time have we been disrespectful. All we asked for was the supplies that we have been getting for the past 4 years! We also asked to speak to a manager and have been told they spoke to one for us but have not let us speak to one ourselves. I just sent an email asking for an itemized list of everything that has been paid to them for the last 4 years so I can figure out the math myself for what has been paid off (you bet we are keeping the IV poles that they have been charging $46 a month for 9mo...) I am such a conflict avoidance person but this is the way my kids get nutrition into their bodies. I also requested a copy of their contract with our primary insurance. Why do I feel like this is just the tip of how ugly this might get?

Ontop of that today was the day we were set to get our monthly feeding tube supplies so we spent part of the day wondering if they were coming or not. Thankfully they came however before all of this started last week they told me that Jilli's pump needed to go in for its one year service... fine we have done this before, but they always bring a different pump for us to use. Well not today. They didn't send any pump with the delivery driver therefor we did not give them the pump we have.

After talking with Brent I called the special needs clinic to talk with our nurse. I explained everything that has happened and she was blown away. She said she has heard complaints about this company before but that this situation was crazy. We have been emailing back and forth today and she is trying to see what she can do to help which I really really appreciate! I am not asking for anything crazy here, just the medical supplies my kids rely on.

Thank you to everyone who has prayed for us in this, let us vent or helped us with securing some more syringes for now. We really appreciate it and you are helping to make this situation less stressful!

Today we met with neuromuscular. I really like our dr. He is really really smart. He walked in and asked how I was and I said frustrated with med supply and he gave me a hug. We had a good conversation. We were in the EMG room because for some reason they scheduled her to have an EMG today but the dr was never planning on doing one. But Child Life showed up because they thought there was an EMG and music therapy was on her way to help Jilli through the test too. Jilli was a little bummed she didn't get to play with child life and Melissa but I am sure she is happy she did not have an EMG. But I am thankful that our support system at CHW was there and ready to step in to best support Jilli through one of the worse tests. As a mom that means a ton to me. Being in the EMG room made her a little on edge though so she ignored the dr most of the time and when he did talk to her she would pull the shade down on the stroller. Its how she is dealing and as long as she is respectful she can set limits. We did convince her to fist bump the dr when we told him about how she has been play MRI and EMG with her toys. It helps her process through it all.
We talked about the "medical event" that happened. He said the cop out is to say she had a virus that just didn't present in typical ways but the reality is we may never know 100% what happened. He said her body is acting like when a 80 year old gets really sick, its just not bouncing back. Really at this point we don't know if it will bounce back to her baseline or not. He did tell us though that since we don't know what exactly happened but we know her underlying disorder played a part that it might happen again... infact he hinted that he thinks it might be likely. That was not easy to hear.
The testing that was sent to Mayo is back. She has one copy of the myasthenia gravis gene however it is believed to be a recessive gene. This is the 5th gene that has come back that she has only one copy of a recessive gene however all of these genes have to do with muscle disorders.
We talked about a plan going forward for how often do we need to see him. She is being transferred to the Muscular Dystrophy clinic at CHW. In that clinic neuromuscular, rehab, pulmonology and cardiology all see your child together and come up with a comprehensive plan. I think we need that. He said that Jilli fits under the old MD definition (pre gene mapping) but does not technically have MD since that has been gene mapped and we have tested her for the gene however whatever the girls do have acts and looks a lot like MD so that is the logical place to have her seen. If it helps her get the best care for her then I am all for it. We scheduled with the MD clinic in September however he said he is not sure that he wont end up having to see us for a problem before that.
We talked about the pineal gland cysts and we are going to monitor them but he is not worried at this time. I trust him.
We talked about why her lungs are under inflated and he said she doesn't have the muscle strength to take a full breath. There might be some things to help her down the line but for now the oxygen is doing enough. We talked about the othostatic intolerance that she had on the dysautonomia testing and he said that does not surprise him based on her muscle issues. We are going to leave her on the liquid albuterol for now because we don't know how much it is helping but we are watching things carefully for a few side effects. My head is still back and forth on that one. We discussed how going to school is not an option for the girls. Their immune systems can't handle it. Illness sets them back too far. He asked some about cognitive function and we all agreed that is not an area that is effected but we continue to watch to make sure.
Overall it was a good appointment. We went over a lot and he really cares about her. The girls are not an easy case and there are not clear cut answers and I really value doctors who have good deep conversations with me. I don't need sugar coating, I need real. Yes appointments like this are emotionally draining. Things are swirling in my head after but it was a good appointment.
After we were done we headed to visit a friend in the hospital. We have three good friends right now who all have kids either in the hospital or about to be tomorrow. Prayers for each of the children and their parents. My heart is heavy tonight for each of them.
After we left the hospital we headed to RMH to see Nate. The kids were all excited; Skylight theater came to RMH today and put on a kids show. It was so cute and the kids LOVED it! Jilli, Lydia and Nate all giggled. It was great to see them all so excited. After the show a corporate group that sponsors things at RMH had one of their chefs come in tonight and make an AMAZING meal for everyone. They asked if I would be willing to be interviewed about the family meal program and what RMH means to our family so we participated in that. It was busy around the house tonight but really good. Jilli is really struggling with all of the medical stuff right now so it was good to see her engaged and enjoying spending time with a friend and getting to do something fun.
Tomorrow we head to Shirners in Chicago for Jilli's leg brace appointment. I am expecting it to be a calm appointment.  On the way home we stopped to pick up one of her meds. The neb med we are appealing insurance for is still in the balance... insurance has not come back with their ruling yet. We also have yet to hear more about therapy coverage. The medically complex life has a lot of waiting. I try to remind myself to pray through the wait.

I also would like to thank Kaet for setting up a meal train for us and for the people who have signed up to bring us meals. It meals SO much to us and we are so grateful as we are in this time of working hard to do what is best for Jilli. We understand that people's time is valuable and we are so humbled that people would choose to help us. Thank you! 

After the show they let the kids play with the props