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Nicholas'
Journal May 2006
May
31, 2006 Wednesday - (Day +544) Outpatient - (Day 501)
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Nicholas went to bed last night and just
did not want to go to sleep. He layed in bed and watched TV and
talked to me for an hour. Just when I thought that he was a sleep he
says "Hieena" He is so funny. He continued to say that and
laughed afterwards. How do you not laugh back. He is very funny. The
smiles have not stopped since we left Salt Lake City. He just all
around feels good. His color seems a little better today and he woke
up hungry and full of energy. He is sitting on his bike and watching
Price is Right. Please pray for the recovery from C-Diff and that it
does not come back. |
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May
30, 2006 Tuesday - (Day +543) Outpatient - (Day 500)
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Nicholas came over for a couple of days. He
seems to be doing much better all of the time. We are a little
worried about his color. He seems a little pale to his mom and I,
but he is full of energy, he is eating like a horse, and some of the
weight that he lost is coming back. He wanted to go outside and ride
his bike today so we did. He loves it outside. He has not thrown up
and the diarrhea seems to be going away. This means that the C-Diff
is ending. A few more days on the Venco and hopefully it will be
over. Please continue to pray for our little Nicholas and that we do
not have any more trips to the doctors. |
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May
28, 2006 Sunday - (Day +541) Outpatient - (Day 498)
WHITE BLOOD CELLS = 12,500
RED BLOOD HEMATOCRIT = 36,300
PLATELET = 425,000
TBILL
= .4
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Nicholas had a great check up this morning.
His numbers are returning to his normal level. He was wound tight
after his IVIG Infusion last night and we had to make him go to bed
at midnight after 2 pieces of cheese and some bananas. He has not
quit smiling since late yesterday afternoon. He woke up in high gear
and has been on the go all morning. He is a little slow to eat much
solid foods, but he is keeping down a lot of fluids. Surprises are
endless for the little man. Nicholas was using the stethoscope this
morning and he was listening to my heart when he said, "I hear
Mickey Mouse" It was so funny. His Mom and I had a good laugh
just before discharge and we wonder if the nurse thinks that we are
crazy, lol...:):):):)
Discharge:
We are flying out on Southwest Air tonight to Spokane WA and will
be home about 10:00pm. The new book to I should write will be
"541 Days with the Ex-Wife." Anyway, please keep praying
for Nicholas and his health.
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May
27, 2006 Saturday - (Day +540) Outpatient - (Day 497)
WHITE BLOOD CELLS = 16,600
RED BLOOD HEMATOCRIT = 40,000
PLATELET = 451,000
TBILL
= .5
IGG
= 175
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Nicholas is doing much better today. His
numbers have gone down by half. This is a good thing but the doctors
are still trying to figure out why he spikes a fever every couple of
weeks. He is eating much better today so far and is drinking
liquids. They took him off the fluids and he is on his own. He has
been smiling all day, and has good energy.
UPDATE: - Answers
The doctors just came in here and they found out why he keeps on
getting sick!! His IGG levels should be 400+ and they are only 175.
They are going to infuse a whopping dose of IVIG - immune gamma
globulin to pump up his system and watch for any of the other tests
to come through positive for the next 2 days. They said that Nick
needs to be checked for levels every 3 weeks or so and give him more
IVIG if needed. This will help his system keep strong and build its
own immunity. They think that this because when he was life flighted
back in July with hemolitic enemia they hit him so hard with
steroids to cure the hemolisis that it is just going to take time
for his own system to fully recover.
Please continue to pray for his recovery and hope that this is
the fix forever.
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May
26, 2006 Friday - (Day +539) Outpatient - (Day 496)
Life flight is on
there way now to pick us up and get us to Salt Lake City. I will
post when I can.
Numbers
from Salt Lake
WE
HAVE NUTRAFILLS = 24,600
WHITE BLOOD CELLS = 32,800
RED BLOOD HEMATOCRIT = 37,700
PLATELET = 416,000
TBILL
= .5
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Nicholas woke up this morning at 2:30am
with a fever. Off we went to ER and they did some blood work and
found out that his liver functions are high, his white cell count
now is 43,000, and his red blood cell count is 43,000 and is
dehydrated from all of the throwing up and diarrhea. They gave him an
antibiotic and fluids and talked to salt lake city bone marrow
doctors. |
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May
24, 2006 Wednesday - (Day +537) Outpatient - (Day 494)
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Nicholas has been steadily feeling better
with every dose of medicine since Monday evening. His energy is
getting better, and no throwing up. He is starting to eat a little,
but we have to really push it. He has lost 4 lbs now and weights
only 35 lbs. Once he starts to eat more I think that this will come
back very fast. We try to feed him on the hour to keep his tummy
from getting upset and keep him strong. He has not taken a nap in
the afternoon for the last 2 days and has played all day. His smile
is back and he wants to "chased" me and "tickle
me." I know that he is feeling better right now, but we need to
get him to eat more, drink more, and get rid of the C-Diff
completely. He is doing great right now. Please continue to pray
that the C-Diff continues to go away with this new medicine and
Nicholas stays well forever. |
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May
22, 2006 Monday - (Day +535) Outpatient - (Day 492)
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Nicholas woke up this morning and seemed to
be feeling better. He did not want to eat as much as yesterday but
had good energy the first part of the day. He did not want to eat
very much lunch either and was getting very tired. I think that the
C-Diff was coming back. Mom came here to get him and take him to her
home and he just did not feel very good by the evening. He finally
went to the bathroom and it was loaded with C-Diff. Mom called
Nicholas' on-call doctor and they changed his medicine to Vinco. He
has responded to this very well while he was in transplant. After
the first dose he threw up right away and went to the bathroom
again. Mom says that the stuff out of him was very nasty, but he got
it out. She made up another dose of medicine and he took it well,
but very slow. He kept it down. He is on this every 6 hours for 8
days so please pray that this works and he starts to feel better. |
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May
21, 2006 Sunday - (Day +534) Outpatient - (Day 491)
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After Nicholas' afternoon nap yesterday he
went to bed at 10:00pm and slept another 10 hours. He woke up hungry
this morning wanting cream of wheat. So we got up and made it. He
ate double what he did last night and is drinking water even better
today. His energy level is even better today. Mom called the doctor
this morning and it was Nicholas Ped that was on call. He does not
want us to start any meds for a few days to help his stomach relax
and get him to eat again and gain some strength back. He wants us to
keep lots of water in him and as much of the probiotic acidophilus
as we can. He has tolerated it all well and this afternoon he says
"daddy take a shower, you are stinky. Go see the yellow
balloon, McDonalds, and Starbucks." We went on a cruz and came
home. I made hin Nuggets and he ate 2 of them no problem. He really
wanted his coffee so off to Statbucks we went and he drank some of
it. He has kept it all down and is taking a nap now. His energy and
appetite is much better than yesterday. It seems like he is coming
around very fast. He has tolerated everything very well today, even
the "cruz" and the food. When we got in the car he wanted
to listen to Nickle Back. He is feeling much better. Please pray for
Nicholas to keep getting better and no more flagil. |
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May
20, 2006 Saturday - (Day +533) Outpatient - (Day 490)
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Nicholas came over today with a little
energy. He was in good spirits, butyou could tell that he just did
not feel very good. Mom Called the docs this morning and the on call
doctor which knows Nicholas told us to take him off the flagil to
see if it was the stuff making him sick and not being able to keep
anything down, so we did. He came around throughout the day eating
some cheese at 2:00pm and cream of wheat at 7:00pm and keeping it
down. We started a probiotic acidophilus today to see if we can help
him replace the good bacteria's in his stomach and intestines. Maybe
this will help him to start to eat and keep everything down. We have
to keep him very full of water so he does not get dehydrated. He has
lost 4 lbs now and we are starting to worry. With him starting to
eat we will go into tomorrow and see what he does. Please pray for
our little Nicholas and his health. |
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May
17, 2006 Wednesday - (Day +530) Outpatient - (Day 487)
WHITE
BLOOD CELLS = 11,400 went down
RED BLOOD HEMATOCRIT = 40,000 went up
PLATELET = 550,000 went up
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Nicholas does not seem to be getting any
better, in fact, he is very much worse and his mother and I are very
worried. He is throwing up more often now and he is not eating
anything. He is sleeping almost all the time and just has no energy, so we are
taking him to see his local pediatrician again to run more tests.
After the tests came back today they were pretty positive even
though he feels so bad. The doc said that he was not dehydrated, his
blood count went up, and platelets went up, and white cells went
down, with no signs of hemolisis. This is a good thing. His diarrhea
seems to be getting better, but the throwing up and sleeping all day
is worse. He is very weak and pale. We are to just watch him, let
him sleep if he needs to, try to keep lots of fluids in him, and
hopefully he starts to get better very soon. Please pray for a quick
recovery of our little Nicholas. |
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May
16, 2006 Tuesday - (Day +529) Outpatient - (Day 486)
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Nicholas does not feel well at all. I was up most of the night with
him. He woke up at 12:30am with a very upset tummy then wham he was
throwing up. He threw up again at 2:00am then he slept through the
night. He has not had a fever and this so far is a good thing.
Mom got a call from the doctor in Orofino this morning and
Nicholas tested positive for C-Diff. He had this during transplant
so the medicine that he went on yesterday will not work. The doctors
here , Orofino, and Salt Lake have been talked to and we need to get
him on Flagil right away, so off to the pharmacy to get his new
medicine. The bone marrow doc's said that he should start to feel
better tomorrow once he gets on the Flagil. He has not thrown up
this morning but he has diarrhea. He is weak, but has episodes where
he wants to play and dance, then takes a little rest. He even wants
to chased down the hall. I try to explain he does not feel good so
we need to take it easy. What a trooper.
Hopefully the new medicine does the trick fast. Please pray for
Nicholas and his recovery.
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May
15, 2006 Monday - (Day +528) Outpatient - (Day 485)
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Niocholas woke up in a pretty good mood
and ready to go except for the 4 times he was on the "poddy"
Here he is riding his bike in the living room and having fun.h. He
has not had a fever today but just seems a litttle under the
weather. Please pray for our little trooper and that he gets over
what ever he has. |
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May
14, 2006 Sunday - (Day +527) Outpatient - (Day 484) Mothers Day
WHITE
BLOOD CELLS = 32,400 very high
RED BLOOD HEMATOCRIT = 38,600
PLATELET = 462,000
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Nicholas was in ER again Today
After spending a couple days camping Mom brought
him home when he came down with a case of diahreah. He did not feel
good and during an afternoon nap he started in to his fever. Off to
ER in Orofino this time. His white cells are still high but
everything else looks good. They gave his a shot of antibiotics and
back on the augmenton for another 10 days. He sounded good tonight
and will come down to my house for a couple days. We are confused as
to why this keeps on happening. Hopefully the tests will show
something more concrete this time. His ears look great and he is
just going poddy a lot and just does not feel good. Please continue
to pray for our little Nicholas.
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May
13, 2006 Saturday - (Day +526) Outpatient - (Day 483)
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Are we ready to go yet. Yes, we are off to
get brother and take them both to Moms day. We will leave in the
late morning so Mom can spend Mothers Day with the 2 boys. They are
so lucky and get to go camping. Nicholas and his brother will have a
blast watching the motorcycle race this weekend. I will stay home
and try to get caught up on some work. Please pray for Nicholas and
his continued ongoing good health. |
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May
12, 2006 Friday - (Day +525) Outpatient - (Day 482)
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Here is Nicholas in his Blues Clues Jammies
that he just will not quit wearing. They are his favorite. We are
enjoying our morning coffee and he had his in his M&M cup. We
are going to get ready to go out for our morning cruz. WE have been
busy for the last couple days so now it is time to go out and play.
Please pray for Nicholas and his health. Send lots of prayers
Jackson's way also. |
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May
12, 2006 Friday
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Today at 10:00 a.m.
Jackson Douglas Baldwin went to the Lord
Jackson and Nicholas
shared the same hematologist in Spokane Washington for the last few
years. We all were going through transplant in different stages over
the last few years. The Baldwin's are members of the same church and
we have all shared our times together. The Baldwin's are a great
family and Jackson was a wonderful boy. Yesterday was a very
hard day and today isn't going to be much easier. I will be
attending a pay- it- forward intended for Jackson and just before he
passed he told his family that he wanted it to go to the frei family
(connor Frei) who has SCID and needs a bone marrow transplant (also
members of the church).
We are so blessed
everyday to have our son Nicholas Ashby and we will not forget our
friend Jackson Baldwin.
To read a little more
about our friend Jackson Baldwin go to his website: http://www.jacksonbaldwin.com/
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May
11, 2006 Thursday - (Day +524) Outpatient - (Day 481)
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It has been a very busy week and I missed Nicholas so much. Here he
is being a ham with his My Space hat on that I got him when I was in
Las Vegas. He had a great day today, but his yellow balloon was not
flying. We had fun on his bike and just being outside. He is off his
antibiotics now and doing great. We have a doctors appt in Salt Lake
City on the 6th for the 6 month post bone marrow check up. He will
have appointments with dentists, eye doctors, and bone marrow docs.
Please pray for his continued great health.
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May
7, 2006 Sunday - (Day +520) Outpatient - (Day 477)
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Nicholas really slept hard cuddling and snoring all night. He woke
up this morning after 11 hours of sleep with re-newed energy. We
will hang out and play for a while then off to moms house so he can
play with his brother. It rained all night and is a little cooler
this morning so it a good day to go outside. He is ready to go for a
bike ride as you can see. Please pray for our little rider and his
health.
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May
6, 2006 Saturday - (Day +519) Outpatient - (Day 476)
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After a good night of sleep I think that Nick is still a little
tired from playing so hard yesterday with me and his little cousins.
He had fun tho, and now we are going out to ride his bikes. It is a
warm day today so we are going to try to stay out of the heat. We
will cruz later in the car and hope that the little yellow ballooon
is still flying. Please pray for the little bundle of energy.
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May
5, 2006 Friday - (Day +518) Outpatient - (Day 475)
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Nicholas came over today sporting his new spiderman shirt. He has
nibble all day and even tried bananas with milk shake in his
M&M's cup. He has been a blast all day wearing the both of us
out. He rode his bike, trike, and we went for a drive to see
his favorite yellow balloon. Nicholas also played with his cousins.
They all ran and played tag and slid down the slide. He is very
tired and we are going to bed early. Please pray for Nicholas' great
health.
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May
2, 2006 Tuesday - (Day +515) Outpatient - (Day 472)
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SpongeBob is in the house.
Here he is in the morning all decked with
spongebob. He is on his spongebob couch, jammies, and pillow. He has
been wound tight all morning. He is so much fun. We are getting
ready to go outside and play. It is a beautiful day here. Please
continue to pray for our little Nicholas.
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May
1, 2006 Monday - (Day +514) Outpatient - (Day 471)
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Here he is in the flesh feeling mush
better. His appetite is back to normal also despite the antibiotic
he is on. The pediatrician does not want to see him again for more
blood work until he is off the antibiotic and is all better. His
energy is back and hopefully he will not catch anything else. He had
a good lunch at McDonalds and now we are going out for a drive.
Please continue to pray for our little Nicholas and his health. |
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Nicholas
Ashby Donation Account
US
Bank (714-529-3983)
Or
just walk into any US Bank
Make
a Donation through Paypal:
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If
mailing please send to:
Nicholas
Ashby Donation Account
P.O.
Box 1817
Lewiston,
Idaho 83501 |
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