August 2007 - Month 2 at Home
August 23 - Wonderful New Plan
Monday marked Rees’ 2 month anniversary for coming home. Mom and dad have
just about caught up from our busy week last week, just in time for a big round of
doctors appointments today: GI, pulmonary, neurosurgery, lab. He weighed in at 13
lbs, 14 oz and 23.8 inches.
First we saw GI, who was amazed at Rees’ smaller, wrinkly belly. Rees is now going
up on his feeds to get more calories, so he’ll start gaining more weight. He is starting
to wean of one of his meds too. We also have a new plan the next time Rees’ NJ
feeding tube comes out. Instead of a trip to the hospital, she thinks Rees is ready to
test out food in his tummy, so the nurse will place a different type of tube from his
nose to his stomach and sees if Rees can keep it down.
Then we saw neurosurgery, who measured Rees’ head to chart the progress of the
helmet. So far, so good. The more Rees grows the faster the helmet will work. Mom
and dad already notice a difference.
Next was pulmonary when we got the most surprising, wonderful news! Rees will
start coming down on his vent settings on Labor Day. Until then, they want Rees to
work on his daily feedings of rice cereal with fruit baby food. On Sept. 3 (Lu Lu, Rees’
great-grandma’s birthday), we will turn the vent down from CPAP/PEEP of 7 to 5.
Then if all goes well, two weeks later we’ll go down to 3. After two more weeks, we’ll
turn off the vent.
Mom and dad cried and laughed all afternoon thinking of the progress our former tiny
guy has made and imagining him free of his tubes. We are praying hard to thank God
for his miracles and to stay with Rees as every part grows bigger and stronger.
It is perfect timing to downsize Rees machines and tubes, since he is really starting
to scoot around the floor. He has the leg part of crawling down, but hasn’t figured out
the arm part yet—his hands are focused on holding his pacifier.
We can now try different fruit baby food with his cereal, so tonight instead of apple
sauce Rees had peaches. He loved it.
Almost forgot....remember the high CO2 levels we prayed so hard to come down in
March. Rees is now only a couple points away from the normal range.
August 19 - Rees' Summer Vacation Adventure
On Wednesday Rees’ Aunt Petey and Cousin Emily came to stay with us to play with
Rees. On Wednesday night Rees broke up the slumber party by pulling out his new
NJ feeding tube. Mom and dad got very nervous because the end of the tube was
missing and we thought could still be in Rees’ intestine. We got to the ER at 10:30 p.
m. At 1:30 we went to x-ray. Good news: No remnants of the tube were left inside.
Bad news: the doc that replaced the tube cut the tube in half before putting it. The tip
he cut off had a weight that helps it stay in. At 2 a.m. we had a visit from Rees’ buddy
Dr. Kim, who knows him inside and out. It was great to see him, but very glad we didn’
t need his surgical services. At 5:30 a.m. we were admitted to a room in the
Progressive Care Unit, so Rees could receive iv fluids (D5, not TPN) until a new NJ
tube could be placed by radiology.
After a very frustrating day trying to get Rees a new tube, they said we would have to
stay another night. We couldn’t believe that we were in the hospital with a healthy
baby! On Friday morning, Rees was brought down and got his new NJ tube—the
whole thing, not just the first half. After all of the hassle and waiting, we did feel
grateful that we didn’t have the sickest baby in the hospital that needed to be first in
line—those days are long gone.
We did have a wonderful time looking at our precious boy with no tubes or tape on his
sweet cheeks. He is so beautiful.
After we were discharged at 11 a.m., we swung by the house to pick up the supplies
we needed for our weekend getaway at the nursing home in Richmond, Tx (about 30
minutes from our house). With a full load in the car, we arrived at 1:30 p.m. Our
agreement was to stay for 48 hours. Everyone was very nice, but you can imagine
how nervous we were taking into a germy place. Can you imagine the number of
Clorox wipes and squeezes of Purell we used this weekend. We had to call for
reinforcements. Ya Ya and Pop Pop came to help us since we were exhausted from
the nights at the hospital. We greatly appreciate their help.
On Sunday before our discharge, we took Rees to his first trip to the playground at
the school across the street from the nursing home. We brought a picnic and Rees
got to gnaw on an apple slice for his treat. Our hour in the park was a complete
contrast from the rest of the weekend. How wonderful to sit with Rees under the
trees and feel the breeze. We then headed home. It took about 2 hours to unpack
and Clorox everything that had been on the roadtrip.
We are so grateful to the Richmond nursing home for taking Rees—we thought we
were going to have to go to El Paso. Rees now officially has Medicaid as a back up to
our insurance to cover his equipment, nursing, etc.
We promised Rees a more exciting trip next summer. (This adventure was also a
good drill for hurricane evacuations.)
August 13 - Beginning of Week Update
We’ve had trouble with our night nursing schedules this weekend. Friday our nurse
came at 1:30 am, Saturday our nurse was sick, and Sunday our nurse didn’t show up,
but luckily a replacement was found and came at midnight—just in time for Rees
feeding tube to clog up. Poor little guy had nothing to eat from Sunday midnight until 4
pm on Monday when the tube was replaced at TCH. It is unknown if Rees was cranky
today from hunger or his helmet. He now hates his new hat and gets mad when we
put it on, and is very smiley when it comes off.
Rees and Mom both received good results from blood work today. Rees’ B12 levels
were actually high, so he won’t have to start B12 shots. Mom’s white and red blood
cell counts are very good. This was the first test since I went up on my Gleevec dose,
so my doc was very pleased.
Yea! Rees’ primary night nurse is here most of the week, so we can get some sleep.
August 11 - Weekend Update
Tough love officially began at noon on Friday. Rees was fitted for his helmet and is on
a schedule to wear it one hour on, one hour off and progressing to 23 hours a day by
next week. He doesn’t seem to mind it too much, but mom and dad are having a hard
time not being able to smooch on Rees and rub his fuzzy head. It truly feels like a
barrier.
The one thing that Rees needs to do is get used to moving with it and holding his head
up with the additional weight. Initially his neurosurgeon said he will probably only
need it for 2-3 months. The orthotics specialist said most need it 3-5 months, so we
are hoping the doc has the best estimate.
This morning during the off period, Rees scooted off his play mat heading forward.
We are so proud of him, he is heading in the right direction on so many fronts.
We think we found a nursing home, so the Potts family may be heading for our first
weekend getaway with Rees to Richmond, Texas next week. We are hoping we’ll get
to see Aunt Nef and buddy Ellie while we are in town.
Yesterday we ran into Rees’ friends Cade and Aaron at TCH. It was great to see how
healthy and strong they are. Their mom and I spent many hours in the NICU waiting
room together worrying about our boys together. Another amazing family that has
helped us on our adventure.
August 8 - Good News
Mom and dad are still giddy with excitement of Rees’ firm bronchial tubes—the
feeling is only comparable to the first poop after thousands of poop prayers.
Rees is still doing better from the infection. Almost all of the redness is gone and
trach related changes are getting back to normal.
We got great news today from Medicaid. They are going to continue to cover Rees as
a back-up to our insurance. He initially automatically qualified because of low birth
weight, but it was only for his hospital stay. We had to navigate the system to figure
out how to reapply as a medically dependant child. We are so excited that we will
have help with paying for his equipment, supplies, nurses, etc.
The next step is that Rees has to stay overnight in a nursing home. As soon as he is
admitted the new Medicaid kicks in. The trouble is finding a nursing home. There are
very few that take infants with the equipment Rees has. We think we have a good
lead.
August 7 - Fabulous Report
Rees woke up with a rosy cheek instead of the inflamed red cheek, so we were very
relieved. The bumps on his eyelid are getting better too.
Because Rees’ trach site may have experienced trauma on Saturday night during our
emergency trach tube insert and because of the staff infection, his ENT wanted to
see him right away, so late this afternoon we packed up for his office. He looked at
Rees’s stoma (the trach site) and zapped the excess skin (granulation tissue) that
has grown trying to heal the unnatural hole in his neck. The doctor said everything
looked great. Then he looked with a scope down his trachea and saw the most
wonderful, beautiful, miraculous thing—Rees’ bronchial tubes have firmed
up! We were told not to expect to hear that news until next summer.
Our next step is to see Rees’ pulminologist in a few weeks to talk about weaning the
ventilator settings. Regardless of the vent, Rees will have the trach until next
summer, when RSV/cold season is over—his doc doesn’t risk closing the
tracheostomy until out of the clear of respiratory infections. What a glorious day it
will be when Rees is freed from the ventilator and the tubes.
After we returned home, we took a nice walk down the street with Rees in his
stroller. We were in between nurse shifts, so we had a some nice family-only time.
We are so proud of our tough little guy and so thankful to God for continually healing
him.
August 6
Last night Rees got a few little bumps near his eyelashes. For the first time, we
asked our sweet next-door neighbors to come look at Rees. They are husband and
wife team of a neonatologist and ob. He said to definitely bring Rees to the doctor in
the morning. We immediately called our pediatrician and she called in antibiotics.
This morning at the doctor’s office Rees was diagnosed with a staff
infection/cellulitis on his cheek, neck, stoma site and eye. We are disappointed, but
less than 24 hours after starting the antibiotic cream and meds, Rees’ inflamed
cheek looks remarkably better. The scary part of the report was that if we noticed
any progression of the irritation site, we would need to bring Rees to the hospital for
iv antibiotics—long story, but it all goes back to our past life and history with different
antibiotics.
We are praying hard that the antibiotics kick in with no problems and no stays in the
hospital.
August 1-5
Rees is getting bigger and bigger, but his cheek with the tape is getting redder and
redder from him rubbing and pulling the tape off. It is painful to look at. Rees is also
starting to become a drool machine. He can drench mom’s entire shirt in ten
minutes. He is also getting a few baby pimples from the drool. Owch. Many are
saying to start watching for teeth, but so far there are none to be seen.
We are so excited at all of the progress Rees is making with his movements. He
crawled over Mark’s tummy last night pushing hard with his strong legs. When he is
on his belly, Rees can get his hiney up in the air when he is working he pushes with
his legs and feet. He is also fully turning his head to look at things.
We had our first terrifying home experience last night. Rees’ trach tube came out
unexpectedly. Before we could get a new tube in, he turned blue and scared mom,
dad and the nurse. Once the new tube was in and the ventilator was connected,
Rees’ pink complexion returned and he was in good spirits. After all of our training in
the hospital, we learned nothing prepares you for the real thing like the real thing. We
remembered about half of the steps in the panic, and thankfully had a good outcome.
After several hours of holding Rees saying prayers of thanks for helping us through
the scary situation, mom and dad went to bed. An hour later, our emergency bell
rang. (There is a doorbell on Rees’ bed that rings in our bedroom.) The night nurse
felt ill and needed to leave. We are exhausted from the busy night with little sleep.
Mom had a rough night the first time on her new Gleevec dose, so her doc let her split
it up taking part at lunch and part at bed time. This is much easier for her tummy to
handle and is doing well.
Rees had lots of visitors this weekend: Emily, Gerry and Merrianne. His Aunt Carrie
came for the day yesterday. She got to have Rees all to herself.
Dad went to visit Rees' Aunt Beverly at the Hospital and gave her the good report.
They were so proud Rees has stayed out of the hospital for such a long stretch.
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