Archive for April, 2011

Clinic Appointment Update

Yesterday, we had a clinic appointment.  We were basically discussing the endocrinologist report, and what that means for Mariella.  We went off with orders for a test for Pancreatic Insuffiency and for an abdominal ultrasound.  She also had some blood work drawn.  (that did not make for a happy Mariella) She also wants us to see a dietitian.  So concluded the Gastroenterologist portion of clinic appointment.

Then, the pulmonologist came in the room, and we discussed her admission in July.  She agrees with Dr. Duda, that we are looking at something more than asthma, and that all the meds are masking what it really is.  She likely has an asthma COMPONENT to it, only because of the strong family history of asthma, but if she were mainly, purely asthmatic, she likely wouldn’t flare as often as she does, nor would she need rescue as often as she does, given the amount of medication she takes.  Of course, there are exceptions to every “rule” and she might “just” be a severe asthmatic, with very poor control, despite the medications she takes…but in order to find out, we have to take her off her meds to make sure.  Finally, we all agreed to make sure that anything that Dr. Duda wanted looked at or tested would be done as well.

Lastly, the ENT came in.  Mariella doesn’t have any ENT issues at all, but Dr. H is the coordinator of the program, so he basically comes in for what he calls a “social visit.”  We talked about the fact that he had run the Boston Marathon the day before.  He will be the point person for anything that Dr. Duda wants done for the admission.

All in all, it wasn’t a bad appointment.  We weren’t looking for any great answers for anything, we were more looking for a plan, which we’ve got.  I have to make my phone calls, to get appointments with the dietitian and for the ultrasound, as well as the labs.  Now, we just wait for July.

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Off to the ER we go…..and home again

Last night, Mariella was coughing pretty steadily.  At about 8:00, she decided she needed rescue puffer, so she took care of that herself.  When the girls went to bed at 9pm, I was still pretty uncomfortable with her cough, so I gave her a breathing treatment.  Her cough really didn’t abate…and she quite literally, coughed for 2 straight hours.

Rob was supposed to go out after work, so I called him and asked him to come right home…because I had decided to bring her to the ER as soon as he got home.  Basically, he was going to be home at midnight.  He was able to get someone to do his show for him, and he came right home.  Mariella and I headed to the ER, and got there by 11:30.

Triage got us right into a curtain…even though her lungs sounded good, her cough and her color were her trump card, apparently.  The Resident came right in, listened to her lungs, looked her over, etc…and agreed with my assessment that it was an acute asthma flare that I was unable to get under control at home.   However, she DID sound a little croupy so he wanted the attending to make the call between prednisone and dechodron.  (As I’ve been thinking about it…she was really trying to hold her cough in, so it got a “barky” tone to it…when she just let herself cough, it’s her normal asthma cough)  The attending came and ruled out croup, so they wrote the script for a 5 day pred burst.

However, we were not quite good to go, because she kept having her O2 sats drop into the low 90’s.  It’s not unheard of for Mariella to sat at 91 or 92, and she’s OK…but along with her other symptoms, the docs wanted to make sure she wasn’t dropping and staying down.  Once they determined that she wasn’t staying low…that she was dropping and coming back up, they let us go home.

HOWEVER, it would be too easy if that was the end of it, wouldn’t.  She is still coughing rather steadily.  Not much break between spasms….and her spasms are lasting a couple of minutes each.  She’s exhausted from being up all night, she exhausted from coughing…I’M exhausted too…and we’ve got a really full weekend.  It’s going to be an early night.

SO, right now, she’s on all her regular meds, along with the prednisone burst, and q4 nebs, by the clock.  We see Dr. Duda on Thursday, but hopefully, the flare will be totally better…but if not, he’ll be able to fix it.

Drive By Posting…..

I got a letter from the Endocrinologist today.  Basically, all her tests came back normal.  No Turner’s Syndrome, and the steroids aren’t impacting her adrenal/pituitary system.

 

What I’m not understanding is…if the steroids aren’t impacting her adrenal system, does that mean they aren’t impacting her growth, that the steroids aren’t causing the growth failure.  The child hasn’t grown measurably for THREE years…a complete stoppage for 2 years…so what the hell is causing it.  I was all ready to get a tidily wrapped “this is the reason” kind of package…and we didn’t get that…we know it’s not the adrenal system…but what is it.  Is she malabsorbing?  Is it just that she expends all of her  calories surviving that there just isn’t any left over for growing?

 

I’m frustrated, angry, scared and sad.  I don’t like not knowing the answer…I don’t like not being able to fix it.  I’m OK with small…I’m not OK with total growth stoppage at age 7, 40 something inches and 36 lbs.


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