Wants

Tuesday afternoon Eli's respiratory therapist came and downloaded his apnea monitor and O2 sat monitor information. She was going to fax it to the pulmnologist /sleep medicine doctor, Dr B, before we saw him Wednesday morning. She called me saying that it was over 100 pages and that she was going to drop it off for us to hand carry to the doc. I looked over it and was shocked by what all I saw.
Wednesday we had Dr B first thing. He went over the report and initially wondered if some of the high heart rate issues were because of a malfunction, some of the HR's all the way up to 370. There were also some low heart rates and quite a few apnea episodes. He got to going over the entire report as well as Eli's meds and was concerned. Eli is way maxed out on his robanol and that can cause high heart rate. With Eli's heart problems they are taking it seriously. He is calling his cardiologist and they will be doing an EKG and Echo. I received a call today from Eli's respiratory therapist saying that she met with the pulmonologist and they went thru all of the printouts AGAIN and that they do NOT believe it's a problem with the machine. I've heard them say that multiple times now but I keep hoping that it's a malfunction. But after hrs of pouring over it they are sure it's not. He also is concerned about the amount of issues he's having with his mask. He sent orders to the RT to work on refitting that. He has also ordered a special bed that will keep Eli elevated and on his back. We also discussed the ferratin / iron levels and he has decided with as much problems as Eli is having with his legs and arms that it would be a good idea to start iron. We are again hitting another crossroads. Lungs are a primary function obviously and we are stuck. The medication that is helping to protect his lungs (and is working pretty well mind you) is now causing another primary organ (the heart) to suffer. I have no idea what is going to happen and I'm left simply having to trust the doctors that they know what the right choice is.

Then come afternoon time we met with Eli's new optometrist. His eyes have again gotten worse. The optic nerve and retina still look good, but the eye sight has changed. What the doc was concerned could happen, has. Eli's right eye is barely functioning and his left eye is trying to do all of the work to make up for it. He has ordered new glasses and has also decided to begin patching. Eli will start with patching 2 hrs a day and we can work up from there. They will continue to monitor his eyes closely for any new changes.

After that we ran by and picked up his new SMO's. These are braces that cover his feet and right above his ankles. They are hoping that we can work up to the point where he wears them all the time he's awake, except for when he's upright working on PT he will continue to wear his AFO's. The AFO's are the ones that cover his foot, ankle, and leg to right under his knee. Hopefully we will begin to see some changes with these.
He's worked a bit more with his walker and is slowly getting the hang of how it works. He just doesn't have the strength or endurance to keep up with it.
He's been incredibly exhausted today and is already back down for another nap.

We are here. Scared and exhausted. This isn't our first time to have unwanted side effects from a medication BUT it is our 1st time to have 2 primary systems effected by the choices that we have to make on this one. I trust Eli's doctors, mostly, but when it comes to something like this it's hard to trust anyone, hard to make a choice if we compromise the lungs or the heart. I don't want to compromise anything. I want a magic fix. I want it now.

I WANT A CURE.