Today was Eli's care conference. We were there for a few hrs. It was probably the most exhausting meeting we have ever been to.
I honestly don't have the energy to go into all the details so I will give highlights!
1. We are going to slowly begin backing down on the robanul.
2. We are going to add a new medication that's given by nebulizer. It helps lower secretions and supposedly has less side effects.
3. No trach right now.
4. O2 can be used from 1/2 to 1 1/2 liters without needing to call the doc on prior auth. It can be used day and night.
5. Hold on the BiPAP right now as he chokes and gags so much worse because it's pushing more secretions down.
6. Lastly and most importantly. Eli's heartrate is very high and so are his respirations still. He is also consistently running a low grade temp as well as having alot of bright red spells. His docs believe he's experiencing some respiratory distress issues. They also believe the robanul is contributing some. They also believe that Eli's heart is in general struggling to keep up. It's having a hard time keeping up with pumping enough blood to his body, keeping things regulated, dealing with the respiratory distress, and all those other things. They aren't sure why this is happening, beyond the fact that Eli has this horrible fucking disease. Damn Mito. His cardiologist is concerned about Eli's body using up so many heart beats so fast, and he's concerned the long term stress this is putting on his body. He will be watching closely for signs of Cardiac Myopathy as these issues increase the risk.
Basically we are going to try a few things, change some others, and simply deal with the fact that Eli's needs are again changing. We have settled in decently to the use of full time O2, and we do definitely see improvements with it.
We are most concerned about the heart issues. There are a few organs that are obviously the scariest for us as parents and this is definitely one of them. We are concerned about the risks, and so are his doctors. We are at another brick wall, where the doctors can't fix it and they have nothing more they can test, nothing more they can try, nothing more they can do, but wait and see. These are the most frightening situations for us. As parents we want it fixed, NOW.
There was alot of emotion at the meeting, by all of us. After we left we stood in the parking garage with Eli's primary speech therapist talking and crying. She has gotten to be a close friend of our families and we value her so very much.
We came home from the meeting and immediately following I got another phone call from Emily's school. Her asthma was flaring up worse than yesterday and she had required 2 breathing treatments in less than 3 hrs. We called her doc and they said ER. We got there and her chest was hurting and she was having a decent bit of trouble breathing. They gave her steroids and changed around her entire asthma action plan. She is now on a more concentrated meds for her prevention meds and for her rescue meds. Instead of using the nebulizer she is now using inhalers with spacers to get the full dose of meds. She will also continue steroids for atleast the next 5 days. She's doing a bit better this evening but still pretty sore and wheezing a bit. Hopefully after her new meds tonight she can get some decent sleep.
Other than that the older kiddos are busy with finishing up school for the semester. Tomorrow is the oldest 3's last day and Monday is Ari's. So alot of Christmas parties coming up! The kids are super excited!
More updates soon after we have time to absorb all this information.