ROHHAD review

We met with Haven's doctor today in St. G.  He's a very nice doctor and listened and knew some about Haven already which is GREAT!!!  I also took all of her files in and gave them copies so they would have the latest information on her.  A few highlights:

1.  Haven has had a cough for about 3 weeks (horrible one) and we've tried everything.  He checked her over and it seems as though she has asthma.  He also let me hear her breathing and at the end there was a wheeze and a pop sound.  So she has been prescribed two different inhalers.  One is for twice a day use and the other is for emergencies - especially at night.  She will go back to see him in two weeks.

2.  We will meet with a surgeon in SLC as Haven will need to undergo surgery to remove her old port and have a new one put in it's place.  They will ultimately have to keep her for a bit for this.  Haven has an allergy to anesthesia and needs to be watched extremely close for seizures or hypo-ventilation resulting from anesthesia.

3.  He is sending us up to SLC to meet with Oncology/Hematology to have a full work up done on Haven and have her start her chemo.   They will be able to contact her doctors at Hopkins for anything.

4.  While in SLC Haven will also meet with a Pulmonary doctor and they will conduct a full sleep study.  She will also have to have the CPAP machine checked and have her settings adjusted. 

5.  Haven will also see the Endocrine doctor while she is there to review her growth hormone, as well as other endo issues.  She will most likely start growth hormone shots and then she will be able to start seeing the traveling Ped Endo doctor here in St. G.


I am very happy to be getting all of this in order and heading up to SLC.  Haven needs a full check up and this will be great.

Keep in mind ALL of this needs to happen in the next 30 days.  The doctor wants it all done asap so she doesn't miss anything else.  With all of these appointments and a surgery I'm expecting that we will need to be in SLC for a week or so.  Hopefully not but then again we have to do anything for our girl.  I just have to figure out what I'm going to do with Deez!!!!  I never worried about that before - my parents always took her in.  So it may just have to be me and the girls doing this.