Hearing aids, new trach, and one big rash

Ambrose finally got his hearing aids. It was quite a production.  We had to bring him to the audiology department as they needed to use some equipment that is not portable to adjust his hearing aids while he was wearing them. It was quite a production as there is no O2 in any of the rooms there and the PICU  generally does not like to send there patients out of the unit.   I appreciate them letting us do this as we have been anxiously awaiting getting them and it will eliminate one of the many trips back to the hospital (which is a little over an hour from our home.) for follow up appointments.  It is hard to say if they are helping him.  It will take a while for him to get used to them.  He was having quite  bit of feedback in his left ear and it was agitating him.  He was rubbing his ear against thing to knock it out. They are both in now and not bothering him.

Following that adventure, the ENT doctor came to try a different trach. He put a scope down his trach with both the trach he had and a longer one. He let me look through it each time.  It was quite interesting.  (I have literally seen my children from the inside out - down trach, mri and ct scans of spine, brain, back of eyeballs, plus X-rays of entire body- and I can truly say they are beautiful inside and out!) The first one, the trach that seemed to be hitting the back wall and occluding his airway, I just saw pink. The second time, with a longer trach, I saw two holes, where it branches off into the lungs.  He put in another cuffed trach to see if the cuff might keep it in better position. The cuff didn't seem to make a difference in that regard, but is much harder and more uncomfortable to change.  He may try another before we leave on Mon. He says Ambrose may need a longer than usual trach to get past the area where it hits. He has a retrolisthesis of one of his cervical vertebrae around the area of his trach. That basically means that it zigs when it is supposed to zag.  I still think this one occludes in certain positions.

Ambrose has become one big rash.  It started around his trach, then horrid diaper rash from the diarrhea and C-diff caused by antibiotics, then around his g-tube and under his lip, then spots allover his chest and abdomen from the sticky leads to monitor his heart rate, now heat rash all over back, back of legs,  arms from lying down with synthetic waterproof pad under flannel blanket.  They have many strengths here in the PICU, but skin issues are NOT among them.  It has been very frustrating.  Ambrose has excema, as Sophia did, and most of his skin issues are excema related.  We use an excellent ointment called Pro-topic which has worked really well and is NOT a steroid.  However, many people here who are unfamiliar with its use are afraid of it because it is made from a drug which, taken internally, is an anti-rejection drug.  They were afraid it could effect his immunity, so  they didn't want me to use it and actually removed it from his room.  Every few days they changed their plan.  When they finally consulted dermatology, they abandoned the dermatologist's plan after less than 24 hrs, then eventually consulted them again. Guess what they wanted me to use (on everything other than the diaper rash) - Protopic.  I had an extensive discussion with him about this.  It cannot effect immunity and is in fact more benign than other things they considered using. (steroids) That was yesterday.  I have spoken to several people about it and they still haven't replaced the damn ointment.  It is very annoying.  This is not a life threatening issues but causes him more discomfort than any other aspect of his illness.

I think I've rambled on enough. (and done it all with one hand while holding Ambrose with the other.)

Have a great weekend!