Today's post doesn’t have much to do with Tucker other than APPOINTMENTS! His Mic key button is leaking like a sieve. New button, enough water in the balloon, but we have granulation around it. Call to General Surgery Doc and we have an appointment on Tuesday. Not sure if the button needs to be bigger or if they need to “Burn” off the granulated tissue. They think it might be the reason that we have the leakage, it may be bad enough that it is causing the button to not lay flat. We have NEVER had an issue with the button. Sure we have had red times and raw times but nothing like this. The only way I can describe it is as the nurse did—looks like lips around the hole in his tummy where the button goes. We have tried nystatin powder and ointment and now have a steroid cream we are using….nothing is helping. As soon as we change the poly-mem (material that goes around it to help hold any moisture away from the skin) we have to replace it because it is soaking wet. It just looks nasty.
Appointment #2 was made with ENT. I called our Pediatrician and talked about putting Tuck on maintenance antibiotics. None doing. Was referred to ENT, once again, to try to find a remedy. Guess what---it is a month from now. YEAH , like we will still be fighting what we are now in a month. We could be better or we could be worse. That is the only complaint I have about Mercy is the specialty clinics are very hard to get into. I just might have to refer to another Doctor on this one. Waiting that long for an appointment is ridiculous. Anyone know of a good one? I am just leery about changing because ALL Tuck’s doctors are at Mercy and everyone has access to his files and knows what is going on with him. If this does end in surgery for tonsils then he has to have a heart team there…..which I would definitely want Mercy involved. SOOOOO, any suggestions? Anyone….HELP!!!!
Tuck is still whiny and impossible. This illness has really been bad. Bad in the sense that he is not in the least bit happy and he is like a piece of static cling. Last night Todd and I wanted to watch a movie I had rented 2 days ago (YUP two days and haven’t had a chance to sit and watch it). Tucker cried for the first 30 minutes, just sat there and cried and whined because he wasn’t happy. But he wasn’t happy sitting with either one of us, or standing, or rocking, or reading. Just not happy. He is so unhappy it makes me think something else besides strep throat is going on. I know the button is very much a problem for him, he pulls and tugs at it all the time. SO maybe if we get it taken care of and the antibiotic does its stuff we will be better or at least a little happier. I am anxious to see the report from school today. He went yesterday and the note said “Tucker had a rough day. He cried and made the parrot cry as well.” They had a parrot for show and tell, yeah as in the bird parrot. We will see if he had a better day today. I am guessing NO because his morning was all cries while we tried to get ready, no smiles-not even mommy singing helped.
The Twelve Mile Bike Ride
6 days ago