This morning Eli woke up really croupy and raspy/wheezy. Called his doc and they had us bring him in. After a warm bath and all of that he was breathing much better. Doc did a full check over and wanted to chat. Never a great sign. He had seen the sleep study results. He was concerned about Eli beginning to gag more again. He decided to increase his robanol (the med that helps lower Eli's secretions). He discussed his concerns about the dosing we are already on. He's concerned that much more and it will thicken his secretions so much that he won't be able to cough them up (Eli is a weak cougher. Takes alot of work). The problem with not increasing it though is he's having more secretions again that he is choking on. Hard to make a full choice. He also informed us that Eli has restless leg syndrome and that the severity of it made them think that he is struggling with anemia again and low feretin levels. He is also concerned that the growth hormone is causing eli's sleep apnea to get considerably worse, something that they knew could possibly happen. He suggested we speak with the pulmonologist.
We left and within a few the pulmonologist/sleep study doc was calling me. We spoke for 20ish minutes. Apparently the sleep study came back with alot of issues. Eli had alot of central mixed sleep apnea, worse than on previous sleep studies. He also had alot of leg movement, 38 an hr on average, leading to a restless leg syndrome diagnosis. He believes it's an anemia/feretin issue and has placed blood draw orders and will most likely be ordering iron supplements. He is placing Eli on BiPAP and O2 bled into the line. He is also placing a high end rescue level on the BiPAP to help push Eli when he isn't able to sufficiently breath. He's placing Eli on a special apnea monitor that also does heartrate and O2 levels. He is adding flonase spray to help open the nasal passages before starting the BiPAP each night. He agrees with the robanol increase and is concerned we may have to push farther on it. He's concerned if Eli isn't dry enough that the BiPAP will push fluids down into his lungs. He warned that we are fighting an uphill battle.
Eli's seizure meds cause a depressed respiratory status. His seizures do as well. So do the growth hormones. And so can mito. Not to mention his central mixed sleep apnea, reactive airway disorder, and in general permanent lung damage from all the other shit his poor little lungs have had to endure. He's simply hoping to get Eli out of the critical point where he is now of dropping his sats 2 to 4 dozen times a night, to where Eli can get a bit more sleep...us too.
It has come up now multiple times that we may need to discontinue some of Eli's treatments and interventions because they are making other things so much worse. There are many dangers to stopping the other treatments BUT we have to protect the primary life function of his lungs. None of Eli's doctors seem to be sure what the right choice is here.
I want to hate them. I want to scream at them. I want to demand 3rd and 4th and 5th opinions. I want to tell them how stupid they are and how they don't know anything and how I want a doctor that knows more than they do. I want to berate them for not coming up with a solution. For not treating Eli until he's all better. I was complaining in the car....so angry that all of the doctors are giving up. I want to push them until they figure it out, until they fix the problem.
Halfway home it hit me. There is no fixing it. These aren't stupid doctors. Eli's pulmonologist/sleep study doc has been practicing since 1972, he is the head of the pulmonology AND sleep studies dept at our childrens hospital. He is brilliant. He truely cares about his patients and is trying everything he knows to try. Most of Eli's doctors are the same. Eli sees mostly dept heads. These are amazing docs. It's not their fault. It's nobody's fault. For the first time it truely hit me that it's not that we are seeing bad doctors, or that they are refusing to help my son, or that they don't want to spend the time trying to help him, it's that they can't. They can't fix my little boy. He has a horrible horrible disease. A disease that is robbing my little man of his entire being. It's stealing everything from him, from us. This is killing me as a mother. It's horrible. Words can't describe the crushing feeling I felt inside when it finally came to me that it's not for lack of a better doctor. It's not fair. It's not how life should be. My little mans disease is progressing and there is nothing that I can do, nothing that bob can do, nothing that my kids can do, nothing that the doctors can do. Nothing.