Hello again… I haven’t forgotten about you.
Mattie has been doing really well for a while. We have not used IV’s at home in a little over a month now. We have had a few labs come back abnormal, but nothing earth shattering. They found an MTHFR genetic mutation…… I am still researching that one.. but it doesn’t seem to be anything that will cause Mattie any major issues. We have added a new med that is given to everyone with the defect.
They also discovered that Mattie’s iron is low. She started supplementing this week and I hope that getting her levels higher will help with her energy level and sleep. She was diagnosed with periodic limb movement disorder after her last sleep study. The doc thinks the correcting the iron levels may also correct her movement at night. In addition to the movement, we added sleep apnea to her list. She is sleeping with c-pap and it has much improved her sleep. We now lovingly refer to her as Darth Mattie.
Mattie is continuing to struggle with breath support and temperature regulation. I am really at a loss as to what we can do to regulate her temperatures. I have spoken with all of her docs and no one really seems to have an answer. We can up her already huge amount of daily fluids, dose her with valium, and just cool her off and keep her quiet. That really seems to be the only option. If you are reading this and struggle with thermoregulation…. I am totally open to suggestions. This is the one area that is really holding us back right now. It is is hard to let her play and let her be a kid when everything she does causes a fever.
As for the breath support, we are teaching her techniques to get a deeper fuller breath. Reminding her to breathe properly, and upping asthma meds. The ENT is going to scope her nose and upper airway in March to be sure we aren’t missing something. She has developed a really loud nose breathing sound the last few months. This will just check to make sure this is truly a mito issue, and that we aren’t missing a different piece to the puzzle.
We are scheduled to see a neurologist in Florida in July. I need to talk more to our doc before I give much more of an update on this trip. I am still trying to wrap my brain around the reason for the visit. Nothing new, or anything to really worry about.. I am just not sure I fully understand it yet, so I want to update when I can actually give intelligent information.
In true Mattie form, we have been introduced to a new condition I had never heard of. The girl really strives for different. 😉 Mattie is still wearing her airway clearance vest twice a day to help keep her lungs clear. One day during a session Mattie got really upset and insisted it was burning her. I took it off and she was covered in hives under the vest. After several more episodes and a trip to the doc, M was diagnosed with pressure uticaria. A fancy way of saying that her body will react to pressure on her skin with an allergic type reaction. She has also broken out in hives from something as simple as a pair of pants that were tight on her belly. It is crazy… We swapped out her antihistamine and she has been hive free for a while.
Mattie is scheduled for a port a cath surgery in March. I am really struggling with this being the right decision. Honestly, I am thankful that they scheduled so far out. This gives us time to think about, pray about, and talk about it being the right decision. If you had asked me a month ago I wouldn’t have flinched. The last couple of weeks have been so good. I hate to have the port put in and then discover that we don’t really need it. This would be surgery number 15. Mattie says she is ready, and wants to have it done. The docs all seem to think it is a good choice. I am just not sure. I will keep you updated on the final decision and will post info if we decide to move forward with the procedure.
We started in home nursing care almost a month ago. It is a huge adjustment for all of us! The nurses are a huge blessing to us. I didn’t realize how much I was doing until I got to watch someone else do half of it. I don’t’ think Mattie would be doing as well as she is without the care they are providing. . She doesn’t have to run out every time I do. She has more opportunity to rest, more eyes watching her vitals and appearance. We are blessed with nurses that really love M.
We are still waiting on the results from the hemiplegic migraine and genetic mitochondrial myopathy testing. I will update if and when they come in.
This week is feeding tube awareness week. If you have anything you want to know about feeding tubes, please ask! I think Mattie plans on writing something up about using a feeding tube. Keep an eye out for her blog post this week. http://www.memosfrommattie.blogspot.com/