Adjusting to the Medicine Changes?

Elias has had a pretty rough week so far. We are not certain if it is because of the medicine changes or something completely different. There is a slight odor coming from the trach, which is one of the potential signs for infection, but the other usual suspects of symptoms are not there, such as fever, colored secretions, blood during suction, things like that. He also is not sleeping much, generally waking about every 20-40 minutes and needing to be suctioned, even through the night. This has been going on since Saturday. So we are just closely monitoring everything. We called his pulmonologist yesterday, but did not hear anything back, we called back this morning, spoke with the Nurse Practitioner and said they would get back to us after they talked with the doctor. That was 6 hours ago and we still waiting to hear back to see if she thinks we should add some of the meds back or just keep monitoring. We did take Elias yesterday to his pediatrician for some vaccines. That of course did not help Elias' demeanor at all. While we were there we brought up the other issue, he unfortunately did not have much to offer, but did not seem to think it was a serious concern, which gave us some piece of mind. He did finally get a fairly decent night's sleep last night, the nurse reported, so here is to hoping that this is the beginning of an upswing. We did anticipate a little bit of adjustment from the changes and one of his nurses wondered if it was too much too soon. That certainly is another possibility and a likely one, which is why we have not rushed him back into the doctor, just using the follow-up calls as they want us to use.

Other than that we have not had much going on. It is spring break so Elias gets the week off from all his therapies because they follow the school's schedule. We actually do not have anything coming up at all next week either, which is great. Our next appointment is not until April 22, with the Hematologist. This will just be for a simple CBC test to check Elias blood counts for monitoring his FA. We will likely be discussing when to do the first bone marrow biopsy. She had originally stated around 12 months of age, but that she would like to see him at 20 lbs. We are only at 14 lbs right now so it will be interesting to see if they will postpone that test and for how long? We are also awaiting his next scheduled surgery, which is tentatively around mid-May. This will be another esophageal dilatation and the second stage of the hypospadia repair. They are expecting this surgery to be outpatient and that pleases us just fine.