I dread, dread, dread trach changes. Both Daddy and I do. Especially during these past few weeks.
Tonight Daddy went to change out Hannah’s trach (which we do every Sunday), and again, she got upset, panicked, got a spasm in her throat which then Daddy could not get the new trach in. Then she became hypoxic and turned blue, and it was about 3 or 4 attempts with the smaller-sized trach before we were able to get that one in. Thank goodness we have the oxygen at home now because it took her a couple of minutes to get her color back even WITH the oxygen this time.
This is a nightmare now! After Ethan and Abby went to bed, Daddy and I worked to keep Hannah totally happy and calm while we attempted to put the regular-sized trach back in. We both were stressing out over it. Fortunately, Hannah didn’t get upset or panic, and it went in very easily this time.
(Read all about this whole stressful process and reasons here)
I hate the fact that we don’t have a caring ENT or pulmo here who are willing to get to know Hannah and understand her unique airway situation as it relates to her disease. I feel like we have no one to talk to.
I found out last week that Dr. Roy still had not been contacted by Dr. Bernstein’s office, but he is still very willing to come and take over Hannah’s case out here. So I sent another email to Dr. Bernstein tonight pleading with him to see if this is doable because we are desperate to get Dr. Roy out here to help us figure this out.
I hate, hate, hate trach changes. I hate that feeling that we aren’t going to get the trach back in time, and Hannah is going to suffer another tonic-clonic seizure and possible stroke like she did last year. I hate the fact Ethan and Abby have become so used to seeing this and yet still get scared each time.
I even sent Dr. Roy an email tonight asking him what ramifications there could be if we did trach changes every 2 to 3 weeks instead of every week just to limit the possibility of this happening…
Ugh…time to destress because I can still feel that nervousness in my chest.
Hope you get this issue resolved soon Carrie. My heart pounds too just reading this. {{Hugs}}
Carrie — sending you guys lots of love and support. This sounds so scary! We’re dealing with cataplexy — Addi and Cassi have a simple laugh at a cartoon and drop like flies. It’s like a seizure. It’s unbelievable. I am afraid to try and make them laugh out of fear of triggering a total collapse and seizure. I don’t even want them to walk because I am so fearful they will fall and break their necks over watching Clifford or Backyardigans. Why this is happening to us…….I don’t know. I try and remain positive but sometimes I get so angry!