Sometimes when there is no update that it good news. Unfortunately, this time it's because I've
been so busy going to clinic visits and caring for Haley that I just haven't
had time. I'll try and catch you up to
speed here. It's all kind of a blur actually
as I'm thinking back.
4-30-15
When Haley was not able to keep down her anti nausea
medicine I called the clinic to get her in.
I had Josiah with us (because he stayed the night in the camper). Normally I would push Haley in her wheel
chair and she would push Josiah in his stroller. But Haley’s tummy was bothering her to much
so she was not able to do that. Security
ended up coming over from the hospital to the parking lot where the camper was
parked to help me. I pushed Josiah and
He pushed Haley. It was a LONG day at
the clinic. Haley did not want to
co-operate with getting weighed, etc.
They accessed her port and gave her some anti-nausea meds and
fluids. We (Dr’s and I) decided that it
was appropriate to put an NG tube in (much to Haley’s dismay). She just wasn’t able to drink enough to stay
hydrated. This process Haley was not
looking forward too. I wish I (or the
nurses) would have had the foresight to take Josiah out of the room before we
started. At the first failed attempt
Haley was fighting and screaming and Josiah burst into tears. The child life helper took him out to the
waiting area while we struggled to get the ng tub in. Twice it came out her mouth (oops). She was not making it easy for them. There were two nurses and myself holding
her. The nurse told her she would try
one more time and if she couldn’t get it that Haley would need to be wrapped up
in a blanket. Getting her NG tube in was
a HORRIBLE experience. And Haley was flat
ticked about the whole thing. I left her
in the room to “cool down” while I had the pump training. This was a long clinic day. Poor Josiah at one point was falling asleep
in my lap. We were all exhausted. They went ahead and left the port access in
because she had another apt tomorrow morning at 7:50.
Isaac ended up staying with us in the camper that
night. The other children were with
Hannah (nanny) at the hotel. Haley did
not sleep well and puked often.
5-1-15
Isaac came with us to clinic that day. He had a good time playing in the sibling
play room and then helping himself to the clinic snacks. It was an even longer clinic day then
yesterday. Hannah eventually came and
got Isaac. Haley got blood drawn (out of
her port), fluids, and anti-nausea meds (this time she got Zofran, Benadryl
and reglan) and before all that was over she had spiked a fever. With the combination of a fever and her ANC
coming back as 10 we were on a one way road to admission back into the
hospital. Her ANC needs to be at 200 in
order to avoid admission. I traded
places with Hannah (because Hans never showed up). She stayed with Haley while they were waiting
for a room to be ready and I took the other children with me to the Dr’s
because last night as I was getting ready for bed I noticed bumps on my right
side that reminded me very much like the shingles I had about a year ago. I left Morgan in the Van with Hannah (hoping
she would take a nap – failed attempt) and went in the Josiah, Ashley, and
Isaac. I got the prescription for the
anti-viral. When I opened the door to
the van a monumental wave of poo stench hit me.
During the investigation process I found Hannah with a major blow
out. And I mean major!!! Cleaned her up, tried to get my prescription
(but it wasn’t called in yet), dropped Morgan and Isaac off at the camper
because they were complaining that they didn’t feel well and headed over to the
RMH to get dinner. Only there was no
dinner that night. So back to the camper
we went. I found out Hans went home
because he had a fever and felt terrible.
I was beginning to prepare something to eat and the next thing I know
Isaac is puking all over the floor. I
began to loose it. Morgan sweetly
offered to clean up Isaacs puke and reminded me, “The victory has already been
won Mom!” I traded places with
Hannah. This time Haley was already
admitted into a room. It was after 7 at
this point. My mom drove up to get the
two sickies, Baby Hannah and Isaac and take them back to her house. Little did we know that she should have also
taken Morgan…and Josiah…and Ashley. By
morning Hannah left for home with the rest of the puking children. And Hans
stayed at his moms. And I was with
Haley. WOW!!! This was one brutal tummy bug. Elizabeth
eventually (5-5-15 @ 1 in
the morning) joined in the puking fun!
That makes all 7 of the children!
Meanwhile, Haley’s
numbers continue to go down (not good but was expected as a direct result from
the chemo). She did test positive for
the corona virus (common cold), but all other blood cultures and viruses tested
negative. She started receiving iv
nutrition on 5-3-15 because
she isn’t tolerating her feeds and isn’t eating anything. She had a platelet transfusion on 5-4-15 because her platelets were at a
9. Her ANC dropped all the way to zero. Which means she really has no immune defense. She’s been on antibiotics since she was
admitted. Her tummy has really been
bothering her. It’s been more cramping
than nausea. She’s still on the anti
nausea meds around the clock. She was on
Tylenol around the clock for the first couple of days until I had them back
off. Her temp gets high around 103 but we
are finding that it comes back down on its own.
Unless she is feeling really horrible or her temp reaches 104 we’re not
giving her Tylenol. She bounces back and
forth from feeling uncomfortable and week to feeling really miserable and week. She’s puked a couple of times, had a couple
of baths, and had a lot of diarrhea. Her
feeds (through her NG tube) have slowly increased to 40 mls an hour (that is
just over an ounce). As you can see she’s
not getting much nutrition into her tummy.
So now we hurry up and wait for her fever to go down and stay down, her
ANC to be above 200, and her feeds to go up.
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