Hannah and I “checked-in” to Randall Children’s Hospital
around 9:00 Tuesday night. A good
friend of mine frequents Randall’s often because she has a daughter with a
disability. In August, our whole family visited her and her four kids (a whole ‘nother
blog post for that story!) so I texted Megan earlier in the evening when it was
looking like Hannah and I were going to be there.
Such a good friend that she is, she called me right away and
offered all sorts of helpful advice and tips and really helped to calm my
fears, answer my questions and give me the boost that said, “You can do this!”
Such a gift from a true friend!
She had warned me that it would take at least a couple hours
to get settled and ready for our stay so prepare to be up late. She was right!
After arriving, there were lots of questions to be answered, Doctors and nurses
to meet, and the dreaded IV being put in her little hand. Hannah crashed around 11:30 and I joined her a little after midnight.
They have—what I like to call—a “distraction specialist”
though. On the drive, I had talked to Hannah about the hospital, explaining
that she would get a “poke” like when she gets shots but probably in her hand
and that it would stay in her hand. That would be where she gets her medicine
into her body. This “distraction specialist” came into the room in this squeaky
princessy voice with a stuffed animal puppet who had an “owie” and he was going
to get a “straw” put into his hand to help him! It was 10:30 at night, we were both exhausted. Hannah just stared
at her as she asked Hannah to help her put the special straw on the stuffed
animal’s hand and pick out which band-aid to put on it. Then she was taken to a
procedure room for her “special straw” to be put in.
The distraction specialist went right to work, holding an
i-pad playing a Sid the Science Kid cartoon about 4 inches from her face. If
ever Hannah tried to look around it to see what was happening with her hand,
the i-pad was moved over and closer to her face to pull her attention away. If
the i-pad didn’t work, Hannah held a wand with multi-colored lights in her right
hand and could make the lights go and stare at them. If that didn’t work, there
were books with buttons and music to distract her with! It was quite the
process. Hannah and I were both oh-so-tired, we just sat there, watching
everything happening, neither of us saying a word. Hannah didn’t even flinch when
she received her “poke” anyway. They had put some numbing cream on her hand. I’m
sure they’ve seen every manner of child and are prepared for it all! I’m
thankful that Hannah was nice and easy though. Made it easier on my own heart.
Afterward, they were offering Hannah all sorts of options to
eat and I finally just chose a pb&j
for her and some yogurt, but after they came, she fell fast asleep!
While we were settling and waiting for Doctors, at one
point, she said, “Mom, do I get to lay here in bed and watch movies?!” That was
pretty fun for her. She quickly found the buttons that make the bed go up and
down and the power button for the remote and enjoyed her autonomy in that way.
There were about 30 different kid’s movies for her to watch.
She chose Despicable Me 1 & 2 almost every day as well as Cars and a couple
other ones. Oddly enough, she only watched Frozen once! ;)
Randall’s is a teaching hospital so every morning, a “team”
would come around with students nurses, doctors, Pediatric doctors and really—I
don’t know who all. ;) There were about 10 of them that would pile into our
room and discuss our “case.”
We also had an Infection Diseases Doctor that would visit us
each day. Her name was Dr. Little although she was quite tall! ;) I really
liked her. I liked all of the staff, but it was interesting when she would come
and just visit, ask questions about Hannah and talk about her case.
So what was her “case”???
She had/has a strain of ecoli in her gut that is resistant
to normal antibiotics. (We learned that everyone has ecoli in their gut, it’s
part of the natural bacteria in our bodies to break down and digest our food.) Early
on, they were saying they didn’t know why it became infected and we’ll
probably never know but it’s something that we need to be aware of for her
future. They cultured out her urine samples and were testing, testing, testing
to see what is was and which antibiotic(s) would kill it.
They did find an oral antibiotic that would kill it, however
at this point, both Joel and I were feeling a little nervous about switching
back to an oral antibiotic after having two failed attempts with that and being
on an IV antibiotic that is working.
They listened to our concerns and were feeling them a little
themselves, so we all came to the same conclusion to continue with the IV
antibiotics. About this same time Hannah vein started hurting every time they administered
her antibiotics. They said it was normal for that to happen, especially with
her receiving it four times a day. The name of the oral antibiotic is in her chart at the pediatricians office however, and if she ever gets a UTI in the future, there's a note to get a urine culture right away and perhaps get started on this antibiotic right away to hopefully ward off any future hospitalizations.
An ultrasound was done on her kidneys, to see if any
scarring had been happening or if there was infection. Everything looked good.
They were a little swollen, but they said that is normal for a UTI.
Once her hand started hurting and the decision had been made
to continue the IV antibiotics, they started making plans for a PICC line to be
put in to her arm. At the same time, they were wanting to do another procedure
where they put a catheter in, insert some dye to her bladder under an x-ray and
observe what happens when she urinates. Everything should flow down, but for
Hannah, on her left side, there is urine that goes up toward her kidney. She also
has a little bulge at the base of her ureter where it attaches to the bladder.
Sounds like those two things are most likely the reason for the persistent infection. We meet with the urologist on October 9th to talk about the results
from the test and what it means for the future—most likely a (simple) corrective
surgery.
Daddy & the boys came to visit our first full day. Elijah was having "sympathy pains" and felt like he had an ear infection. From my hospital room, I called the Dr. in Gresham and made an appointment for Joel to take him in--felt a little strange and Joel and I were texting each other saying, "We're gonna make it, we'll survive!" ;) They said he had a little fluid in his ear and to come back in if things got worse--which they didn't. I think it was just taking his toll on him, having little sister and Mom in the hospital. After that, they joined us at the hospital until Joel had to leave to get Abigail from school. I'm sure thankful we live relatively close so Joel could come and go. It was just good for my heart to have him near and also to have a second set of ears to hear what Doctors and Nurses were saying.
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