Day 7 at UWCH
We finally were told that Hayden can go home tomorrow. With one antibiotic remaining, plus his other BMT meds we will continue to get IVIG regularly-once a week I am thinking and go back to weekly Dr. appointments to watch the lungs. We have a game plan coming from the Pulmonary doctor as well. Doctors now think that the spots they were seeing in the lungs were that of aspiration. Last Monday he threw up mucus, which strained his lungs, which are weak to begin with. It is either that or pneumonia which they have been treating with the antibiotics. Also, since Hayden has asma (spl?) they will increase his dose of Flo-vent to keep the airway open. Flo-vent and Albuteral inhalers will be given in the morning and in the evening as we have previously done. But Albuteral will be given every 4 hours to keep his airway open through these colds. Not a whole lot of change in our routine.
We can’t wait to be home. Staff is great here but home is where we are most comfortable. Grandma and Grandpa Augustine were down today to look after Hayden while I went into work for awhile to get some stuff done. It was nice to get out, even if it is cold out. Rick picked up Abby from daycare and came to the hospital too to see us and Grandma and Grandpa. It was nice to have a meal with the family again.
We now have to get Abby’s tonsils out on Dec. 5, so we will have a week of nursing her back to health with ice cream and popsicles!
Home sweet home tomorrow!
November 24th, 2008 at 12:30 am
Delighted for you that you will soon be home. I can appreciate that special joy more than you might expect.
Just wanted to wish y’all Godspeed through your challenges, and especially encourage Hayden to keep having fun regardless of any rough patches during his medical adventures. And for you family members…take heart in the knowledge that it’s always easier to be the patient than the family of the patient.
How could I know that? I am a 45-year-old father of five who, like Hayden, is a WAS “club member”. Thus far, for dealing with the WAS specifically, I’ve had a splenectomy (back when I was 28) but no BMT. [I like to say that I’ve lived 40 years past my warranty.] Growing up I never suffered from serious infections (caught a few after the splenectomy, though, which prompted me getting monthly IVIG since five years after) or serious bleeding problems, even though one of my older brothers succumbed to ITP and another to an infection, both at 5yo.
My most serious issue (that is, until the lymphoma arrived 2 years ago…which is seemingly all cleared up now…wasn’t THAT a load of fun
) had always been autoimmune vasculitis, mostly in my lower legs & ankles. The splenectomy permits me to control that with ibuprofen now that my platelets are normal (they had run 20-30K prior). Most of my health issues now seem to stem from my merely getting old…the same aches & pains and expanding waistline that everybody else deals with. [Isn’t that wonderful?]
BTW, two of my nephews (also members of the club, and they were having a tough go of it) underwent BMTs about 12 years ago (from the same non-sibling donor!) and both are doing spectacularly well. I will pray that Hayden does just as well.
And FYI, it’s ‘asthma’.
(Did I mention I’m a freelance writer & editor? In case you are curious, there’s more about me at http://www.groundbreaking.com/Robert_Mahoney/default.htm) \
Warmest regards,
Bob