Day 6 at Club Med

Today has been a little more eventful.  I'm not sure if that's entirely a good thing.  But certainly nothing bad has happened.

Doctors doing rounds this morning think since her cough is getting better that we're on the right track with her meds.  But since her cultures are clean, they've removed the Pseudomonas antibiotics - Tobramycin & Fortaz.  So she's down to just Zyvox a few times a day.  After some talking about Victoria's sleeping habits - a bit restless, snores sometimes, gasps occasionally, but it's so rare I haven't been able to catch if she stops breathing before the gasp.  So they want to do a sleep study.  The doc says that if she has sleep apnea that can cause body wide inflammation - including the lungs.  At least I'm pretty sure she said 'body wide' perhaps it was just inflammation.  Anyway, it can affect her lungs.   They're not ruling out reflux issues, but are chasing sleep issues before reflux tests.  Though they did increase her Prevacid to twice a day.  They also said that her vitamin D levels are a little low.  They changed her vitamin D from 1,000mg a day to 10,000 mg every other day!

Victoria is still giving the RT's a hard time and it seems that like at home I have to be the bad guy and make her comply.  Can't they have a turn?  I don't want her to think she gets her own way all the time - not by a long shot.  But she's mostly making reasonable requests.  She asked the RT to use her yellow stethoscope instead of the one hanging on her IV pole.  He refused to either do both or just use hers.  We spent more time arguing about it than it would have taken for him to wipe the ear pieces and listen to her again.  Then we have issues if the RT doesn't put the vest on in the right order.  It must be correct - buckles from top to bottom.  Left hose then right hose and the hoses can't be twisted.  She requests which finger or toe the pulse ox goes on.  And she wants to do her nebulizers before chest therapy.  She doesn't want to do them at the same time.  So even though the RT is scheduled to one patient an hour as far as I can tell, they won't let her do them separate.  Some are more gentle than others.  I do very little in going to bat for the RTs on that one.  I think it's a reasonable request and some even think it's more beneficial to do the breathing treatments first then chest therapy.  I don't know if it is or isn't. They have to convince her themselves. I translate when she's shouting 'not both!'.  I home, I'd let her do them separate. Why not?  If it *might* be more beneficial and she's more compliant, why not?  I might have to limit her cartoon/tv time during treatments and see how she reacts then, but I'm not going to limit like that in the hospital - I don't think.  She's having a rough enough time.

Let's clean all that chocolate up - it's time for chest therapy

She ran around in PT the therapist checked her heart rate and O2 early on .  Victoria had reached her target rate (150s).  Said she was doing so well she didn't need to check again.  So why are we bothering with supervised play with someone with a ton of education that's likely expensive if you're not even going to monitor her?  I did start to feel a little uncomfortable in PT when 2 other kids(teenagers) with CF (you can tell by their masks) came in to do their therapy.  Though the teenagers stayed more than 6 feet apart from each other-each on a separate piece of exercise equipment.  Victoria didn't maintain the 6ft rule running all over the room.  Especially true when Victoria accidentally kicked her ball at the treadmill - it got pulled underneath the belt! Oops.   That gave everyone a fright.  Certainly the girl who was walking on the suddenly halted treadmill. But it was very short lived and everyone was wearing their mask, but still gave me the willies.  That 6 ft rule has been drilled in to me since she was an infant.  It's a tangible control in such an uncontrollable unpredictable disease.  And Victoria certainly likes the PT when she's alone and gets to do therapy by herself - therefore she gets to remove her mask.

Victoria had a visit from her Godmother.  When I told Victoria she was coming, she said she would make her a picture.  Victoria made a picture for her Godmother, one for her cousin K, and one for her Daddy so he will feel better.  Hubby had a fever this morning so he went to the doctor.  Another nasty sinus infection - antibiotic injection, steroid injection, and home on oral antibiotics. He sounds terrible.  I know he'd do anything to be well.  Since that means he can't come to the hospital and see Victoria.

The doctors are all supposed to get together and talk about all of the CF patients on Tuesday so I guess we'll know more after that meeting.