Blog update 10/11/13
So... I have had a mild/moderate set back in my recovery unfortunately. On
Wednesday afternoon I was admitted to the hospital (sort of unexpectedly) after
an urgent clinic appointment that I had made due to concerns about worsening GI
symptoms. The doc at the clinic felt it was best to admit me to the hospital
for observation and lots of testing so we can really figure out what is going
on. I had been feeling "off" and for the past week or so had been
experiencing very painful abdominal cramping, bloating, diarrhea, etc. When it
got to the point that it was so painful that I couldn't sleep, I called the
clinic and they told me to come in and see my doc for an urgent appt.
Well, that urgent appt quickly turned into a full inpatient hospital admission
(Presbyterian/St.Lukes - downtown). Same hospital where I had my transplant but
a different unit. I am on the general oncology/BMT overflow unit this time).
Luckily John had driven me to the clinic for the appt so he was here with me to
get me admitted to the unit and then went home to pack a bag and bring it back
to the hospital for me. (If anyone deserves "husband of the year"
award it's my man! Hands down!!!
The doctors wrote orders for me to have a PICC line placed (since I had just
had my central trifusion line pulled a few weeks ago). So I now have a
semi-permanent IV access with 2 lines on the inside of my upper left arm. Gonna
have to start researching "cute/fashionable PICC line covers" so that
I can keep it covered once I leave the hospital, otherwise it is going to be
WAY too tempting for Scotty to want to play/mess with. I will use this PICC
line just like I did my central trifusion line when I get back home and will
most likely have to be back on daily IV hydration and electrolyte replacement
therapy through Kaiser's home healthcare nurse. I already know how to flush it and
do all of the day to day sterilization stuff as it is very similar to the two
previous lines I had before (just a different placement, and it was less
invasive to have it placed!) :)
The biggest concern right now is my GI system. With all of the issues I was
having they were concerned about dehydration as well. We have avoided any
dehydration issues so far and everything is good as far as that goes. The major
issues now are a GI bleed of some sort and GVHD of the lower intestines. Just
got back upstairs from the GI lab for my very first "upper and lower GI
endoscopy with biopsy". They took biopsy samples of the upper GI track as
well as the lower intestine. No visual issues with the upper end of my GI
tract, but the doc who did the lower endoscopy/colonoscopy said she believes
that the bleeding that I am experiencing is in the lower intestines and likely
due to the inflammation/irritation caused by the GVHD.
GVHD of the gut is essentially is just massive amounts of inflammation which
irritates the colon lining and causes it to bleed because it gets so
"angry". Doc said aside from this, she didn't see any ulcers/lesions
or polyps/growths...so that is good news. She took a ton of biopsy samples from
my lower intestine and they are off at the lab under the microscope right now
to check for viruses and to confirm/deny an official "GVHD of the
gut" diagnosis. We should get the final pathology report back early next
week (fingers crossed for Monday, but it will more likely be Tuesday). At that
time we will know if it's GVHD of the colon, a virus in my intestines, or a
combo of both.
In the meantime, they have increased my steroid dose from 80mg to 185mg/day
(holy moley) as this is the first line of defense to try and get GVHD of the
gut under some sort of control and reduce the inflammation that is causing the
irritation/bleeding. ..so now we are really going to have to watch my blood
glucose and for all of the major nasty side effects of high dose steroids such
as muscle deterioration. It will be very important for me to make sure I am
walking around the unit twice a day (28 laps=1 Mile on this unit) to avoid
muscle breakdown. The PT/OT gal came in did her initial assessment and gave me
my treatment plan (walking 1-2 miles worth of laps around the unit) as well as
"theraband" exercises for my arms.
I thought it was really interesting that the doc and the nurse who did my
endoscopes said that I required 2.5-3x the amount of sedation. Apparently red
heads are known for that, but we are also know for snapping out of it pretty
quickly as well. Go red heads :) lol. The procedure itself wasn't bad. I was
more anxious before hand just because this was my first time, but on the list
of "torturous medical procedures" that I have endured over the past 9
months, this one was pretty dang mild and near the bottom of the list :). So I
have that going for me :). Lol
Looks like I will absolutely be here at the hospital through the weekend and
into early next week. Best case scenario (although I have learned that
"best case scenario should really be called "wishful/magical
thinking" around here) is that I might be able to discharge home mid next
week. Although it will likely be more like the end of next week or next
weekend...depending on how the GI bleed and intestinal issues heal up and what
the labs report early next week. We will see. Luckily, my MIL, Judy, was
already up here in Denver this week helping watch Scotty during the day
(daycare was closed this week for fall break). She has graciously agreed to
stay through next week as well so that John can continue to work during the day
and then come visit me in the evenings :)
In other news, we celebrated Scotty's first birthday on Sunday last week at a
local pumpkin patch and farm. Had the Colorado family and a few friends join us
and enjoyed cupcakes. Scotty had a little smash cake that I made him (pics are
posted on Facebook for anyone who wants to see them) :). Scotty turned 1 on Wed
(10/8/13) and went to the pediatrician for his well baby check up yesterday
(Thurs). Here are his stats for anyone interested. :)
Weight= 22lbs 14oz. (72%ile on the WHO "weight for age" growth chart)
Height= 2'4.75" (13%ile on the WHO "height for age growth chart)
Head circumference= 17.99" (40th percentile)
So, we have a short happy healthy baby on our hands :) lol. He has gained about
4 lbs in the past 6 months since he was in to see the doctor last time and she
has no concerns about his growth, so we are happy about that.
Scotty got several vaccines at his appointment yesterday but we had to delay a
few of them because they are "live" and that puts me at risk when is
get home from the hospital. So we skipped a few but he did get the rest of the
reg 1 yr shots and his flu vaccine. Poor monkey. I was really sad that I wasn't
able to be at this appointment (John and his mom took Scotty in since I am here
are the hospital) and it reminded me of 6 months ago when I wasn't able to go
to that well-baby checkup/physical because I was in the hospital for my
transplant at that time. :(.
Really hoping that I will be able to go to his 18month well baby appt! :)
That's it for now. Since I am back in the hospital (and bored) I will probably
update the blog a little more frequently (at least for the next week or two)
:).
Love, Chellie
No comments:
Post a Comment