Pulmonary Update

We saw Dr. Moore on Tuesday and liked him very much. He was great with Miles! We found out this week that another good friend of ours sees him too!

He says Miles has asthma for sure and switched up his meds a bit. Changed us from pulmicort nebs to a Flovent puffer and also gave us some oral steroids to keep on hand in case he needs them. He also gave us an "asthma care plan" which is like a step by step of what to do if he starts to have trouble which is pretty cool. All stuff ya already know but good to have on hand for the babysitter and stuff.

The check up schedule is as follows...Feb 5 - Cardiology (getting nervous!!)...Feb 8th - Renal...Feb 18th - Neurology...and finally Feb 24th - We follow up with pulmonology.

Cardiology is the only one I am getting nervous about. The most likely senario is that Miles will need a stent in his conduit - which just means a heart cath. It would be his 3rd if that is what he needs. I only say this because that is what the pc said last year when we saw him. He is doing SO well, if he needs any other intervention I would be very surprised. And he could need nothing at all which would totally rock! Because his pulse ox is still lower than they expect with his repaired heart I suspect that he still has some shunting from his now-closed fenestration.

He has shown quite a bit of curiousity lately about his heart and what surgeries and such he will need down the road. He asks the best questions and sometimes they are difficult to answer, for example, mommy how will the doctors open my chest to get to my heart? My response - they will use doctor tools. He seemed to be okay with that. I don't think I need to use terms like surgical saw and heart lung bypass machine just yet. His Dad and I are always honest with him but try very hard to explain things on his level and for the most part I think we do okay.

Please keep those fingers crossed that all of our February check ups are full of good reports!!!!

Things have been good for the most part, which has been nice. I hope everyone had a good holiday season!

January and February are full of check-ups for Miles. Next week we see pulmonology for the first time. Miles was in the hospital in November and diagnosed with asthma. The pediatrician says they may want to do a lung function study. His asthma is strange in that he doesn't wheeze or have an 'asthma attack' - he coughs. Dry, unproductive coughs - and he can't stop - has a hard time talking, eating, taking meds but never really appears to be in distress besides the constant coughing until the 'attack' passes (with lots of help from xopenex and pulmicort). He was admitted another time in November for a seizure but has been doing amazingly well since.
His pulse ox has been lower than usual too but that could be the asthma. He sees cardiology in early February, then neurology and then renal. He has been off of the BP meds for a while now and has done really well.

He has had lots of questions lately about when he will have surgery next and what kinds of things the doctors will do to his heart, how they will get to his heart, stuff like that. Those are trying to answer without scaring him. I tell him we don't need to worry about when he will have surgery again - we trust our doctors and let them worry about that for us. When it is time they will tell us :) Last word from the doc was that a stent will be done before the next open heart anyway - which should add a few years to the conduit so I feel pretty safe that the conduit replacement is still a good way off.

Thanks for checking on my little man! :)