4/30/2007 Happy 6 mo. Birthday Rees
Today is Rees’ 6-month birthday. Rees is now twelve pounds and seems to be on
track developmentally with his 2-month-old post-term peers, but with much more life
experience for coming 4 months early. He seems to be more obsessive with his
pacifier the past couple of days. He even breaks down and holds it himself, if he can’t
recruit someone else to do the job.
Rees’ ENT surgeon came and looked over his stoma and trach today. He said
everything has healed beautifully and that mom and dad can begin their “trach care
training.” Of course we’ve already ready everything we could find. Next week we go
through a training program and once complete, we can start doing many of the things
the nurses do.
Mom had a really good visit with her hematologist today. On Wednesday I start taking
two new drugs to boost my blood count. One for red blood cells to help with the
exhaustion from anemia, and one for white blood cells to be extra careful to not
catch an infection—good for someone who spends all her free time hanging around
hospitals. I spent months agonizing about getting my WBC count down. It seems so
strange to take something to get a few extra. This is how the marvels of modern
oncology work. We’ve seen it with neonatology too--- every great medicine or
treatment that brings wonderful benefit is accompanied by a non-optimal side effect
that has to be closely monitored and kept in check.
4/29/2007 Evening Update
We had a wonderful day today. Mom and dad got to hold Rees for the first time since
the day of his surgery. It was amazing to hold him and look at him without all of the
breathing tubes in the way of his precious face. Rees threw up all over mom. I
smelled like sour milk for the first time, just like a mommy should. Rees spit up on
daddy too, but it was much more controlled.
Rees was very alert today. It was wonderful to see him calmly looking at us and his
toys, and not concentrating on his breathing tubes. The ventilator tubes connected to
his trach are out of direct line of view so he doesn’t focus on them.
Rees looks less swell today too. The surgery and the pavulon both cause swelling,
but luckily Rees didn't get too puffy this time.
4/28/2007 Rees is awake!
Rees is awake! His last dose of pavulon was at 8:30 this morning. Mom did not leave
his bed. I had to be the very first one to see his eyes open. At about 10 he started
wiggling and then about 11:30 he peeked open his eyes. By the afternoon he was
wide-awake. He is so precious. All of a sudden he looks like a grown-up baby. (new
pics coming soon) He is still not back to full speed, since he is still receiving
morphine until this trach is completely healed. Although, tomorrow the plan is to put
him back in his big-boy crib so he doesn't wiggle out of the warmer which has very
low sides.
So far Rees hasn’t seemed to mind the trach. When I walked in this afternoon, he
was sound asleep with one hand holding the trach tube. So far he has just held it and
not pulled it.
Rees had several bouts of spit ups today, but his doctors kept him on his large
amounts of feedings. He is almost back up to full feeds and off TPN (the iv nutrition).
4/27/2007 Evening Update
Rees had a nice day today. Since he did well yesterday, he got a little more food
today. He is got a little squirmy several times today, so he was quickly given more
pavulon. We don’t think it will take too long for him to wake-up once the surgeon
gives the word. His nurses spend most of their time suctioning out his excessive spit
(another pavulon wonder) which Rees uses to make lots and lots of bubbles. We are
anxiously waiting to hear when the ENT surgeon will give the ok to wake-up our
sweet Reesy.
Rees’ cousin Camryn, who just turned one, also had a date with an ENT surgeon
today. She got her 2nd set of tubes in her ears and her adenoids removed. She has
recovered quickly and is still planning on walking with her brother Thomas in the
March of Dimes walk tomorrow in honor of Rees. Their whole school is participating.
The money raised goes to research and services for tiny miracles like Rees and his
NICU friends. If you would like to support the march for premature babies, you can
sponsor one of Rees’ cousins:
Camryn: http://www.walkamerica.org/cstratton
Thomas: http://www.walkamerica.org/tstratton
With the cancer weight lifted, mom is doing very well today too—still crying tears of
joy every time I think about how blessed I am.
4/26/2007 Complete Remission for Amy
I’m in 100% complete remission from CML!!!!!
My hematology appointment today was cancelled because my lab results had not
come in. I was already a nervous wreck waiting for the results and didn’t think I
could wait the weekend. At 5 p.m. my awesome doctor called. She had just received
the results. The test was 100% bcr-abl free, meaning I have no detectable CML
indicators. The ultimate level of remission from CML is reached!
As soon as I got the news, I rushed over to the hospital to tell Rees and Mark. I was
crying uncontrollably, trembling and yelling "Thank You God." It is an indescribable
relief to know that I will be well enough to take care of my precious baby and be able
to watch him grow up.
We reached our goal: Get mommy better before Rees comes home.
Thank you all for your continued prayers and support. Please say a
special prayer of thanks today.
Technical stuff: I have achieved a “complete molecular response” from Gleevec (the
chemo pill). I will always have CML and will take Gleevec forever—LIVING a
wonderfully “normal life” with Rees and Mark. (The only way to become technically
“cancer-free” with CML is with a bone marrow transplant, which is riskier and not a
better alternative than taking a Gleevec everyday, and only done now for extreme
CML cases that do not respond to Gleevec or Super Gleevec. Yes, there is also a new
back-up: Super Gleevec.)
I was very nervous leading up to my lab work because I did not show a good
“response” to Gleevec at my last visit and was very scared that it was working. We
weren't expecting a 100% response for about 12 months.
Why am I still exhausted if I’m better? The Gleevec has caused me to have a low red
blood cell and white blood cell count. Anemia causes low energy, especially coupled
with NICU mom stress. Next week I’ll have a few more blood tests and I will start a
new treatment to help get my red blood cells back to a normal level.
Rees started the day off with a poop. Yippee. His feeds were started back at a low
amount. So far, he has not spit any back up. His ENT surgeon reported that his trach
stoma is healing nicely and we are on target to wake him up this weekend.
4/25/2007 Happy Birthday Paw Paw
One more day of ill-effects from pavulon. We thought the days of the doctors telling
us to “pray for poop” were behind us, but here we are again. In retaliation, Rees did
poop out his suppository, but that was it. This is a trick he has played a few times
before. Rees also started throwing up his formula this evening, so his feeds are
stopped for now. One of his lungs looks a little hazy on x-rays and his CO2 level is
still going up and down.
All of these bumps in the road are due to him being paralyzed. The doctors think as
soon as Rees is allowed to awaken from his slumber and start moving around, all of
these issues will subside. Our sleeping beauty will hopefully wake up Saturday or
Sunday.
We miss his sweet eyes gazing at us. We even miss his mischievous hands
grabbing things that he is not supposed to touch.
4/24/2007 Evening Update
The big news of the day is that Rees had lunch. Late this morning his doc heard
bowel sounds and started his feeds. This is much earlier than anticipated and a very
good sign. Mom got to help insert the feeding tube, since it may be my job when we
get home. He is on about a third of his full feeds, so they will try to get him back up as
soon as possible.
Rees’ doctors are chasing his CO2 levels to find the perfect ventilator settings.
Today his CO2 ranged from the 30s (optimal) to the 90s (too high).
If Rees moves the slightest amount, he quickly gets a dose of pavulon, the paralytic
drug. We forgot how much we hated pavulon. He was much smaller the last time he
was paralyzed for an extended amount of time. Seeing our big boy unnaturally still is
tougher. The worst part, besides the swelling, is that he can’t blink, so his eyes are
filled with gel to keep them moist and covered up with eye shields.
4/23/2007 Post-Op Report
The tracheotomy was a success! Surgery was scheduled for 4:30 but things did not
get started until 5:45. The trach took 30 minutes to put into place and we were able
to visit after the dinner time shift change at 7:45.
Amy and I spent the weekend reading up on the procedure, looking at pictures and
watching an introductory video. All the preparation was good but it did not prepare us
for seeing Rees for the first time after receiving his trach.
The paralytic, pavalon, has caused Rees to swell unnaturally. All NICU parents dread
pavalon. For most of us it is a reminder of life threatening times.
Rees has another 5 days of complete paralysis. On Saturday or Sunday, the trach
will be stable enough for him to come out of his slumber. We can't wait!
There are a couple of exciting post surgery signs. First his CO2 levels have dropped
into the 30-40 range - a couple of weeks ago he was in the 90's. The trach is already
doing it's job!
Mom and Dad are in good spirits. All the thoughts and prayers keep us going.
4/22/2007 Pre-Op Report
Monday is the big day. Rees’ trach surgery is scheduled for 4:30 p.m. Although we
are excited in taking a step towards coming home, we are still nervous. The nurses
and docs have done a great job preparing us, but getting a trach is an emotional step,
even though we know this is the best thing for Rees.
The first week after the surgery Rees will be given drugs to paralyze him so that he
doesn’t move and irritate the area that needs to heal. He will also get morphine for
pain. He is already on antibiotics, so he is set in that area. He won’t be able to eat for
a few days after surgery, but as soon as his doctors hear bowel sounds they will
start his feeds again. While not eating he will be on TPN (the iv nutrition), so we want
his bowels to start making sounds as soon as possible.
It will be tough to not be able to see his beautiful eyes this week while he is drugged
up, but the consolation prize is that we will be able to see his precious face without
tape and tubes for a few days. While he is not eating he will not have a feeding tube,
so there will be nothing taped to his face.
Tomorrow will be our first time ever to see Rees with no tape and
tubes on his face.
Tonight we had dinner with Evelyn’s parents. Evelyn was Rees’ first next-door
neighbor in the NICU. She went home almost two months with a trach and is doing
well. They gave us some really good pointers. They gave Rees two new outfits that
work well for trach babies (snaps up the front). One of the many blessings we’ve
received in the NICU are new friends that help us along the way.
Today Rees is 2 months post term (almost 6 months old), weighs over 11 pounds,
and is 20 1/4 inches long. We did new footprints today. They look monstrous next to
his first tiny prints. We are so proud of our big boy.
On Monday, please say an extra prayer for Rees and his team: neos, surgeons,
respiratory therapists, nurses and parents.
4/21/2007 Evening Update
Today was a nice lazy Saturday for Rees. He napped most of the day, waking up
often to swat at his ventilator tubes. His GI doc came today and said she wants to
wait about three weeks after his trach surgery to reevaluate his feeding method. She
is hoping Rees will be able to handle the feeding tube into his stomach then. Now his
feeding tube goes through the stomach and directly into his intestines to minimize
the chance of him spitting up—this type of feeding method is not ideal for babies at
home.
Tonight mom got a long hold in. Tomorrow is dad’s turn. We won’t be able to hold
Rees for about a week after his surgery so we have to cherish every second he is in
our arms.
4/20/2007 Evening Update
Rees was weighed last night and he is up to 10 pounds 15.1 ounces—almost 11
pounds. Mark and I stare in awe and amazement at every part of our big boy. He has
come so far. When Rees was first born, there were some parts that we had to squint
to find.
Rees had another nice restful day. His nurses are keeping him swaddled tight so he
doesn’t get to his tubes. He strikes at a moments notice when his hands are free.
Even with his double pair of mittens he can cause havoc.
Today his great aunt Cynthia donated blood so Rees could have a good supply for his
surgery. Tomorrow dad is donating platelets. It is so nice to know if Rees needs
blood he will not have to wait. Many have asked if we have registered for gifts for
Rees. Yes, we have registered at Gulf Coast Blood Center—where the most precious
gifts for Rees come from. (At some point we’ll make it to Toys R Us and Target.)
4/19/2007 Evening Update
Rees rested today with a little help from morphine to keep him from getting to
rambunctious.
Tonight mom and dad were given our first batch of trach study materials to start
preparing for the big day on Monday. This is the first time we have had a surgery
scheduled a week ahead of time. It is a much easier when you do not have so much
time to think about the procedure.
4/18/2007 Evening Update
For the past three days Rees has been receiving a very special gift from a stranger.
Someone is directly donating red blood cells to him! Whomever you are thank you so
very much! (Because of HIPA the identity is not shared with us.)
Because Rees' surgery is scheduled for Monday the neo's have been especially
conscious of his blood chemistry. Doses of the donated red blood cells (and platelets
from dad) are helping to get Rees ready for his big day. Good red blood cell levels
also helps keep his oxygen level up and his heart healthy.
The fact that Rees is in the hospital did not stop his Ya Ya from doing grandmotherly
things. Over the past two weeks she has visited and played with Rees daily. She
bought him some very cute outfits. She even did his laundry! Thanks for all of your
help.
Since Friday, when Rees was put back on the ventilator, it has become very clear that
he will not put up with the ET tube for much longer. He is bigger, more aware,
stronger and more coordinated. That means that he can extubate himself just about
any time he chooses.
Tonight, Rees decided to extubate as mom and dad were preparing to leave. While
mom and dad stood by in shock, the nurses and respiratory therapists took over.
They pulled his ET tube out, "bagged" him to get his lungs going, did chest
compressions to get his heart rate to an acceptable range, and finally re intubated
him. Things moved pretty quick but the team was as calm and professional as could
be. Mom and dad tried to be calm too--if we aren't we get asked to wait outside. As
NICU veterans we are allowed to stay and watch many procedures that we couldn't
when Rees was a tiny guy.
While scary, tonight's activities are common for a big baby with an ET tube.
Afterward, Rees was wide awake. It was clear from the expression on his face that
he did not know what the big deal was. He probably liked having all his friends at his
bedside at once.
Every night, Amy and I pray in thanksgiving because Rees is under the care of the
excellent NICU staff at the Women's Hospital of Texas.
4/17/2007 Evening Update
More good news. Rees' eye surgeon made his rounds and pronounced his eyes fine
and dandy! His next checkup is not for another three months.
In addition, Rees' pulmonary doctor stopped by to let us know that she believes that
his lungs are in great shape. After the tracheostomy he will thrive breathing wise.
The only hangup that we have on the horizon is to figure out whether Rees needs to
have another stomach surgery when the tracheostomy is performed. The worry is
that Rees will have acid reflux, the reflux will cause him to spit up and the spit up may
cause him to aspirate. Surgery can stop this problem.
The flip side is that Rees has already had three stomach surgeries and his surgeon
does not want to perform any more surgeries on our little man.
Lastly, the tracheostomy is scheduled for Monday.
4/16/2007 PIC Line In & Breathing Problems
Identified
This morning, Rees’ nurses spent almost two hours putting in an iv. They got one in
and then Rees immediately pulled it out, so they had to start all over. Then because
his surgeons wanted all steps taken to avoid a 5th central line, the nurse practitioner
who is considered one of the all star PIC line pros stepped up to the plate. Before
starting, she warned me that she didn’t see any veins that looked like a possibility.
After another hour in the waiting room, we got great news. The PIC line was in! Our
hundreds of prayers for a PIC line were answered. God guided the nurse’s hand to
thread the line into Reesy’s tiny squiggly veins. We are so happy to not need the
surgically placed central line.
This evening, the ENT surgeon did an endoscopy of Rees. He checked everything
from his mouth down to top of his lungs. He found what was making it such hard
work for Rees to breath and causing his CO2 levels to elevate while on cpap. His
bronchial tubes leading into the lungs are a little flimsy and oval shaped. They are not
stiff and round like they should be, so Rees needs extra pressure to keep his
bronchial tubes open so he can breathe effectively. Fortunately, this is a problem that
will correct over time. In the meantime, Rees will need a tracheostomy. He will
probably have the “trach” for about a year. A ventilator will be hooked to the trach so
that he can breathe easier. The wonderfully positive news is that his lungs are
working and as soon as he is ready, they can close the “trach” and he will be fine.
Another problem identified by the endoscope was that one of Rees’ vocal cords was
damaged during his PDA ligation (the valve surgery he had two days after his birth).
This is a very common complication for tiny babies. Rees will start out with a raspy
voice, but over time, his healthy vocal cord will compensate for the damaged one and
he will have no problems speaking—what a releif. The loss of use of one vocal cord
can cause short-term problems with breathing and eating too. Since the vocal cords
are used to close off the airways when needed and reduce the chances of aspiration.
The doctors explained the trach to us as a possibility several weeks ago, so we have
had some time to get used to the idea. A tracheostomy is a big step emotionally and
physically, but we are so excited that the doctors have identified the problem and
have a solution….and that Rees will be coming home sooner than later…and that with
all of his hurdles he has no life-long complications. The surgery will be scheduled in
the next week or two. The next step is meeting with the GI specialist to determine
the plan for feedings with the trach. There are multiple options to consider.
There is now an end in sight to our NICU adventure and we couldn’t have come this
far without all of your continued prayers and support.
4/15/2007 Evening Update
Still no PIC line for Rees. The two attempts today did not work. We are not sure if
they will try again. His poor little veins are very squiggly from having so many ivs.
The OR is scheduled tomorrow for Rees’ scope of his airways and, as it looks now, to
put in his 5th central line.
4/14/2007 Evening Update
Last evening's PIC line attempt was not successful. The wonderful nurse that tried it
told us that she was able to thread the line into his groin but was not able to get past
his hip area. Because of the small clot in Rees' heart the PIC line needs to be placed
below the heart and that limits the nurse's choices.
On Sunday, a nurse who is not scheduled to work volunteered to come in and attempt
a second PIC line. She is considered the "PIC Line Queen" and we are very excited
and thankful that she is coming in.
In other news, Rees either extubated this afternoon or decided to clamp down. Either
way, he was not getting enough oxygen, his heart rate dropped and the team had to
bag (use an ambu bag to push air into the lungs) him and compress his chest to get
things started again. We are praying that this does not continue to happen.
On the bright side, Rees is lots more comfortable on the ventilator. He does not seem
to mind the tube that runs into his mouth and down his throat - he sucks on it like a
pacifier. Also, his coloring looks very good so we are excited to see what his bilirubin
levels are on Monday.
Mom and Dad had dinner out in Sugarland with some NICU parents. Their daughter
Ellie is one of Rees' first girlfriends and unlike the nurses she is the same age. It is
great to see her doing so well!
4/13/2007 Evening Update
Rees had a rough night and day, mostly due to the fact that his ivs aren’t lasting long
enough. He had two in the middle of the night and three today. Tonight, they are
going to try to place a PIC line (peripheral intravenous central line). This is inserted
like an iv, but is long and threaded towards his heart. They last much longer than an
iv and not surgically placed like a central line. We have three days to get a PIC line in.
If all attempts fail, the surgeons are scheduled to come Monday to try to place his 5th
central line.
We are praying very hard that Rees will have a new PIC line this weekend and avoid
an extra surgery for a central line and all of the problems central lines can cause.
Rees is back on the ventilator. He was sedated for the intubation and was still
zonked out this evening.
4/12/2007 Evening Update
Rees stayed up all night and slept all day. This evening the ENT specialist came and
studied Rees’ 6 charts. On Monday, he is scheduling the OR for an endoscopy to take
a good look at his airways.
Tomorrow Rees is going back on the ventilator. He will probably like it better than
cpap, which he finds frustratingly annoying. His doctors want to give Rees a rest
from cpap since his CO2 levels are still pretty high. He may need to stay on the vent
several more weeks to get him back to where he was before his last infection.
Last night, one of the specialists referred to our big boy Reesy as a “former
preemie.” We love the new title.
4/11/2007 Evening Update
Rees was very mad all day. The only time he snoozed off was when his Ya Ya (Tx
grandma) rocked him.
The Infectious Disease specialist came tonight to look things over. Because of the
recent infection and the blood clot, she thinks Rees needs 5-7 more weeks of
antibiotics to make sure the clot is sterile and will not host any bacteria that could
cause problems later. She also said that the type of bug he had is know to cause
breathing trouble. So we now have a bit of hope that a little more recovery time may
get Rees back on track with his breathing. Our biggest concern with the long course
of antibiotics is the possible need for a 5th central line.
Tomorrow the ENT surgeon is coming to check his airways to make sure they are in
good shape. He was scheduled to come tonight, but was running late and didn’t want
to wake Rees up at 3 a.m. to peek down his throat.
4/10/2007 Evening Update
This week is going to be a big week of evaluation for Rees. A pulmonologist and a
cardiologist came to see Rees today, both giving input to “the plan.” An ENT and
Infectious Disease specialist is on the agenda tomorrow. We have entered into a
frustrating era in our NICU stay for Rees’ doctors, nurses and parents, where there is
no clear-cut right decision in Rees’ next steps.
Yesterday’s echocardiogram had positive and negative results. The good news is
that the indicator for potential damage to the heart from his high CO2 levels was still
in normal range. The bad news is that Rees has a blood clot in his right atrium. The
doctors say it is very tiny and should not cause any problems, but you can imagine
our distress when we heard those alarming words: blood clot in the heart. The only
treatment anticipated for the blood clot is a few more antibiotics to bombard any
potential for infection.
His CO2 has stayed down for two days in a row. We are hoping for a third.
4/9/2007 Evening Update
This morning Rees’ CO2 went down to a “more acceptable” level. Hopefully he’ll
keep it down for tomorrow’s test. This afternoon he had an echocardiogram
(ultrasound of his heart). The results, which should come in tomorrow, will help
guide the doctors on their decisions with his breathing support.
Tonight Ya Ya (Waco grandma) gave Rees his bath, and then mom rocked him to
sleep. His bed is full of new animals from his many Easter bunnies.
4/8/2007 Easter Update
It looks like Rees is now infection free. He has had negative blood cultures for
several days, so they are stopping the daily cultures, which means one less poke and
less blood taken for tests. He will continue on antibiotics for a couple of more weeks.
Rees’ CO2 levels are still high, so this week a couple of new specialists will come to
see him: Pulmonary and ENT. They will be investigating other options for Rees’
breathing. Because of his prematurely, bouts with pneumonias, time on the ventilator
and his abdomen invading his diaphragm’s space, it looks like he may need a more
longer-term help with his breathing.
Ongoing high C02 levels can indicate that his lungs are causing his heart to work
harder, which could cause permanent damage to his heart. We want to keep his
heart healthy. What we do know is that Rees will continue to grow new, healthy lung
tissue as he grows bigger and bigger, and eventually he will outgrow the breathing
problems.
His weight gain has picked up this week. Tonight Rees tipped the scales at 10
pounds 3 ounces.
4/7/2007 Evening Update - Happy Easter!
One of the sayings that Amy and I have really learned to hate is, "The NICU is a real
roller coaster." Unfortunately, the phrase is really on the mark.
This morning Rees' blood gas was elevated. The test was not performed at Rees'
usual time and he was pretty upset when they pricked his foot. That leads us to
believe that the elevated result was higher than it should have been.
Never the less, the result stands and once again the doctors are worried about
elevated CO2 levels. The CO2 can strain Rees' heart as his body adjusts to too
much.
Please pray for the Easter Bunny to bring Rees a good blood gas this morning. If the
CO2 levels do not begin to fall Rees could be in for a very big lifestyle change.
4/6/2007 Evening Update
Yippee! When we called to check on Rees early this morning, he just got his blood
gas back and his CO2 levels went way down. What a relief. Rees is headed in the
right direction: towards nasal canula and away from the ventilator.
He seems to be feeling better, although he never seemed really really sick from the
infection. Without the central line though, Rees is turning into a pin cushion. He
needs ivs for the antibiotics and they aren’t lasting more than 24 hours, since he is so
wiggly and one of the antibiotics is especially hard on veins.
4/5/2007 Evening Update
Rees had a rough night last night. He started holding his breath because he was so
mad to be back on cpap. It is a very uncomfortable contraption. He got a little more
use to everything today and was a little calmer. Hopefully he can chill out and put up
with cpap for a little while longer, until his lungs regain strength.
His infection was identified and tomorrow they are stopping one of the three
antibiotics. We also got word that his lumbar puncture showed no signs of
meningitis.
Mom and dad are very exhausted from the NICU roller coaster this week.
4/4/2007 Happy Birthday Cousin Kate
Well we didn’t escape the scary middle of the night call. At 2:30 Rees’ doctor called
to say he was breathing very heavy, so they were putting him on cpap. We were glad
they were going to try cpap, because there was talk of putting him back on the
ventilator if he had trouble. We were glad that they were giving Rees a shot on cpap
first. He is not very happy to have the large, loud prongs in his nose. When he is
awake he concentrates on how to knock the prongs out.
Rees did have lower CO2 levels this morning, whether this result is from getting rid of
the sugar water or giving him a breathing boost on cpap in not known. Of course
we'll take it either way.
Because of the infection in his blood, this morning Rees’ surgeon took out is central
line. It was bitter sweet. We had planned a huge celebration upon the removal of the
central line at the end of the week, when Rees definitely didn’t need it any longer. We
need Rees to do well with his nutrition and infection treatment so that he will not
require another central line. Hopefully, from here on out, we will be a central-line free
family.
4/3/2007 Evening Update
As we were tucking Rees into bed tonight, a blood culture taken earlier today came
back positive. We lost the race to get his central line out before an inevitable
infection occurred.
We are looking at the infection as good news/bad news. Bad news: infections are
dangerous, especially if it spreads to the spinal fluid, and he will be on at least a 2-
week course of antibiotics. Good news: the infection was caught very early, the
antibiotics for this type of infection can be given intravenously so a central line is not
necessary, his central line will probably come out tomorrow, this could be the
underlying reason for his high CO2 levels. We are also very thankful the culture came
back while we were both at the hospital, instead of getting an alarming phone call in
the middle of the night.
This morning Rees’ CO2 levels were even higher than yesterday. Since carbs and
sugars release extra CO2 when they are metabolized, the sugar water (D15) in his
central line was switched to saline, and fatty oils were added to his formula to give
him a calorie boost. Yes, Rees in on the preemie version of the Atkins diet.
Our top two prayers tonight are that God keeps Rees strong while he fights this
infection, especially his precious lungs, and that his spinal tap tomorrow will be clear
of infection.
4/2/2007 Happy 2nd Anniversary Mom & Dad
Rees started making mom and dad very nervous today. He started the day off with a
not-so-good blood gas indicating that he is not getting rid of enough CO2. This could
mean several things, the worst being that he is not breathing effectively on his own.
We should know more as the week progresses. Then Rees D-sated several times—
meaning that the oxygen saturation of his blood dropped below the normal range.
We are praying very hard that this is just a little speed bump and not the beginning of
a big detour.
Last year on our 1st wedding anniversary, we were just starting to think about a
baby. We never dreamed by our 2nd anniversary, we would have a precious 5-month-
old baby. This year has been indescribably tough. There is no way I would have
made it without being blessed with such an amazing husband.
4/1/2007 Evening Update
Rees was very lazy today. He just wanted to snooze with his bink all day. A good way
to celebrate his one week anniversary of breathing all on his own with no problems—
“sating” 100 all week—no foolin’.
Please say an extra prayer for Rees’ buddy Bennet. He is having complications from
last week’s tummy surgery and is having another procedure tomorrow.
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