Hannah never fully recovered from her latest bout of trachiitis. She did a 10-day course of Bactrim, and it definitely lessened the amount of secretions and got rid of the infection. It ended a few days ago.
However, for the last couple nights, she started getting junky again, requiring suctioning, and keeping her and I up from around 2 am until about 4:30 am. She has also started throwing up mucous-filled formula after a couple of her feedings, which means her congestion is definitely building up in her chest (because she swallows most of her secretions, it builds up in her tummy). It has made it impossible to get her to practice with her passy muir valve (speaking valve) because she always ends up throwing up 20 to 45 minutes after it is on because of all the swallowed secretions.
Today, I noticed that her “junk” (secretions) were starting to turn yellowish again, which means her infection has returned. Ugh!
Her pulmonologist called in a new antibiotic, Cipro, to fight this infection. Turns out her trach culture grew out pseudomonas something (can’t remember). The Bactrim, which covered many of the trachiitis bugs, did help quite a bit, but it was just not strong enough to knock out the bacterial infection.
Hopefully the Cipro will do the trick.
Anyway, we have a couple of important appointments coming up tomorrow and Friday. Thursday, Hannah will meet with Early Intervention’s developmental pediatrician. Why we have never met with one before this point is beyond me because with all of Hannah’s developmental delays, this would be a specialist that would be the one to gear us in the right direction in terms of successful therapies (and which ones would be a waste of time!).
Friday, Hannah has her swallow study. I am so dang nervous about this one! Before her hospitalization, she always passed them with both liquids, solids, and everything in between. Immediately after her trach surgery, she had one at TCH, and she failed it miserably, likely because of the chorea movement disorder she developed (which was quite a bit worse than it is now). A couple of months ago, she aspirated thicker foods like baby foods and puddings. But we have now been able to reincorporate those into her feeding (as much as she will allow anyway) without any aspiration. This leads me to believe we have a chance to hope that she will pass the liquids part of the swallow study. (We were able to test the thicker foods because she would aspirate them into her HME — with liquids, she would not be able to cough it out as easy so we avoided doing it).
I would love to be able to offer her juice and milk again. That is all she knew before the hospitalization, so hopefully we can reintroduce it again.
Cameron has been dealing with tracheitis since June. SO frustrating. He is on his 3rd round of Cipro which does help a LOT! We tried bactrim with him in June and it turns out he’s allergice to it. He’s also allergic to inhaled TOBI. That made him throw up blood. Awesome. Are you doing a nebulized antibiotic? We did a month of nebulized gent which seemed to help. Cameron has pseudomonas and MRSA too. Sometimes I wonder if he’ll ever NOT have tracheitis?