Elias has an odor from his trach tube. That is never a good thing and usually an early indicator of something bad. However and thankfully he was presenting with none of the other usual suspects of symptoms. We still felt the need to contact Dr. Wood, Elias’ pulmonologist. Our thought was possibly that the pseudomonas he is colonized with might be flaring up. Dr. Wood agreed, but since there were no other symptoms it wasn’t worth doing a culture. We would just treat this presumptuously, as Dr. Wood put it, because Elias can not be trusted! Especially when it comes to that tenuous airway, again his words. Elias amuses him and challenges him at the same time and he has told us on many occasion that he sleeps better knowing we are his parents. We appreciated that compliment coming from one of the worlds top pulmonary doctors very much! So we are giving him Gentamicin for the next 10 days in hopes that this clears up the issue.
We also had Aural Rehab this week. This was our first working session. There was not much outstanding to report from this, but this is something that is it is going to work will take time. Elias is still getting comfortable with the therapist as well so his attention to her should improve as well. We really did not learn much in terms of things to carry over at home, but we think she is still trying to figure that out still.
Week 3 of the dilations is coming to an end. As expected the dilator was easier to pass as the week progressed, but Elias’ acceptance goes in the opposite direction. He seems to be more and more irritated. The way he cries just breaks our heart. There have even been a few times this week where it will take a few minutes before he will look at us or let us touch him once it is finished. Tomorrow morning begins week four and the next size up. We also were given a tentative date for the next stage Surgery, mid-September. We are checking to make sure there are no conflicts with this before a final decision is made. Our biggest fear was that our referral evaluation from the Assistive Technology center at Children’s would end up conflicting with this date. There is a very long wait to get in. After a few phone calls the past few days our fears were confirmed, experience and history are ALWAYS right. After some discussion with several people there, and reminding them that they had “LOST” the original referral back in April, we have lost several months because of the flawed system. Advocating paid off even if we still will not be seen until September we are scheduled, which is something they would not have done typically. We were not expecting them to make exception, we just wanted and needed a more definitive timeline of expected service besides, “it will be awhile before you are scheduled.”
Otherwise things here have been well, but exhausting. We may have a new day nurse soon, fingers crossed. The one we currently have is missing more and more. Granted she has the part time gig now, but the agency has not reacted with urgency to rectify this. Now we are learning that our nurse is going back to school on top of it. We can only imagine this will be even more days missed. So this has to be fixed. In the past three months combined we have only received 37 out of 92 days of staffing. That would explain why we are so freaking exhausted, why we are behind in everything, can’t seem to get things accomplished, and the house looks as though a bomb went off. Hope everyone has a great weekend. Looks like it is going to be a hot one, so be safe out there!