September 26 I am late
today with my update. I am sorry. It was a busy morning. It actually started
last night just as Craig and Jeanette walked in. I had called Craig earlier to say that Cal eb
was feeling better and was beginning to communicate so they decided to come.
Just at shift change Caleb started to get really nauseated and started to throw
up. WE noticed that the area around the PEG tube was really
distended. So despite
manual and high automatic suctioning Caleb remained nauseated. So later that
night they put the NG (tube through the nose and into the stomach)tube back
down and suctioned a large amount of gastric fluid. So they left in the tube.
He had a new-to-him nurse last night. He had been a medic in the military and
then gotten out and trained as a nurse. He told us he loved his job. We stayed
a little and helped change his sheets. Then the Colostomy nurse came and we
visited for a while. She thought the stoma looked good. Then we went to the RMH
to sleep. We got up early and were back with Caleb. He looked peaceful. The
nurse told us that once they had put the tube down he had settled and had been
able to sleep. This morning dialysis was about to start. Caleb looked good and
he was in the mode to communicate so at times by mouthing words and other times
by nodding yes or no we did our best to understand him. His kidneys are
producing more urine today. It seems that there is some activity in his bowels.
So overall he had a pretty good day. The Dr told us that she is pleased with
his progress. Everytime they see progress they warn us that he is still really
sick. Thank you all for calling and asking and praying. We love you all.
September 27th
Caleb's night nurse, who had been a medic in the Air Force, who also is a Christian, who shared his amazing testimony with us last night, told me that Caleb had had a good night and had not done anything naughty. Caleb also confirmed this when I asked him this morning. He is more alert and aware and communicative this morning. He is listening to ESPN right now. He says he can't see the TV but can
September 27th
Caleb's night nurse, who had been a medic in the Air Force, who also is a Christian, who shared his amazing testimony with us last night, told me that Caleb had had a good night and had not done anything naughty. Caleb also confirmed this when I asked him this morning. He is more alert and aware and communicative this morning. He is listening to ESPN right now. He says he can't see the TV but can
listen to it. Craig
called and told him about school and how the kids have been asking about him.
Then Craig told him "I love you" and he mouthed "I love you
too" back. His nurse today had him about a week ago and says he is a like
a new and different patient today. His kidneys are still producing urine and
even though not enough have been able to keep his electrolytes balanced. They
just did a KUB (kidneys, ureters, bladder) xray but I don't know the results as
far as the GU system goes but the surgeon who did his colostomy just showed us
his xray and showed the air that is in his intestines and how encouraged she
was. The Colostomy Nurse last night was pleased with his stoma and there is air
in the pouch. Thank you all for praying. Psalm 27 is our encouragement today.
September 28th
Caleb had a good night last night. The nurse told me that he was able to sleep for about 5 hours. She tried to cluster her cares so she could give him a good chunk of sleep. He looks good today. They have not done dialysis today as they had hoped because his labs look pretty decent. His kidneys are working pretty good. They took him off the ventilator for about an hour and he did really well. They
put it back on so he
would not get too tired. Also PT and OT (physical and occupational therapy)
were also here and got him to sit up for about 5 minutes. He did not want to
lie back down!!. They are weaning him off the blood pressure increasing
medication. They were also talking about putting down his pain med a little.
The fungus smear of his stool was negative and the the preliminary report of
fungus growth from his stool was negative. The bacterial cultures are also
negative. His hemoglobin and platelets are low so he will get blood this
afternoon. He just checked his facebook!! So now he is tired and sleeping.
Craig is coming up in a few hours. So looking forward to that. Psalm 28 is so
encouraging. Love you all. Thanks for praying.
September 29th
Craig's update!! Today I'm enjoying watching football with Cal. We really enjoyed the Baylor/West Virginia game-lots of touchdowns.
He's had a decent night and day-just a few issues with his stomach and blood pressure. Those problems were quickly taken care of. They have been taking a bunch of tests-because of various places of possible bacterial infection. Hopefully they can keep these under control. We are waiting and praying that Caleb's digestive system will kick back in soon. Everything seems to be doing ok-but it just hasn't kicked yet. Please pray that this would happen soon. Thanks for all of your concern and love.!
September 30th
Caleb keeps battling on. He is still sleepy but appropriately responsive to questions. His kidneys are working. Still not much excitement around the stoma. His abdomen has fluid and they are considering opening it and draining it. Physical therapy has been here and are sitting him with his legs dangling off the bed. He has had fever over the past 24 hours so they have sent more cultures from diffe
Craig's update!! Today I'm enjoying watching football with Cal. We really enjoyed the Baylor/West Virginia game-lots of touchdowns.
He's had a decent night and day-just a few issues with his stomach and blood pressure. Those problems were quickly taken care of. They have been taking a bunch of tests-because of various places of possible bacterial infection. Hopefully they can keep these under control. We are waiting and praying that Caleb's digestive system will kick back in soon. Everything seems to be doing ok-but it just hasn't kicked yet. Please pray that this would happen soon. Thanks for all of your concern and love.!
September 30th
Caleb keeps battling on. He is still sleepy but appropriately responsive to questions. His kidneys are working. Still not much excitement around the stoma. His abdomen has fluid and they are considering opening it and draining it. Physical therapy has been here and are sitting him with his legs dangling off the bed. He has had fever over the past 24 hours so they have sent more cultures from diffe
rent sites. I had gone
home for a 24 hour period and Craig stayed with him. They bonded over football
and movies. It was nice to go home and get caught up on some things. Its not
fun seeing his empty bed. Praying that he will occupy it again soon. He is off
blood pressure raising meds. He is holding his own there. They have been taking
him off the ventilator for 1 hour at a time. Today they will do this 3 times.
Thank you all for praying for him. God bless you on this special day of
praising and worshipping the Lord who can do above all we ask or think. Psalm
30 is very encouraging today. So was Matthew 6.
October 1st
Caleb had a new nurse last night and he told me that he had a good night. He had dialysis last night. It finished around 11pm and then we turned and tucked Caleb in. Some treatments are being done to his trach today and the surgeon will do that at some point. He has a fever today as well despite his cultures coming back negative. The infection control Dr was just in and he is concerned about some
October 1st
Caleb had a new nurse last night and he told me that he had a good night. He had dialysis last night. It finished around 11pm and then we turned and tucked Caleb in. Some treatments are being done to his trach today and the surgeon will do that at some point. He has a fever today as well despite his cultures coming back negative. The infection control Dr was just in and he is concerned about some
fluid that has built
up in his abdomen. It seemed to be oozing out yesterday but there is no sign of
that this morning. His kidneys are still struggling. He is doing well with
physical therapy. He sat longer yesterday with his legs dangling. His stomach
is still draining large amounts of gastric fluid both from the NG tube and the
PEG tube. The ICU Drs want to put something in the stomach to see how he will
tolerate it but the GI Drs don't want that because of the large amounts coming
out. They are hoping these fluids will start moving down soon. He still seems
to be in good spirits. He is still responding appropriately. He wrote "im
thirsty" on the laptop and the nurse wetted his mouth with a wet sponge.
He is still on insulin and lasix. Thank you all for praying. The road seems so
long sometimes. Psalm 31 was encouraging along with Matthew 7. Craig, the girls
and Grandmother came up yesterday. It was good to have them here. Caleb watched
Montsters Inc last night and has started with Fiddler on the Roof. He usually
feels pretty good after dialysis.
October 2nd AM Craig's update. Caleb has been alert and
responding to us here at Sunrise Las Vegas, Nevada. Today he will have a
procedure to drain off the fluid from infections from the operation. These
problems were anticipated. Pleae pray for him as he goes off at 11:00 am. He
continues to be critical so there is risk in the procedure. We are uplifted and
greatly appreciative of your prayers. God is in control and sustaining through
all of you. Continue to pray!
October 2nd Mid afternoon, Sarah's update. Caleb is back in his room and he was able to recognize us even though he as not able to open his eyes. He had a bit of an adventure during the procedure. First a seizure then arrythmias. They did a CT scan of the brain that showed a bleed. We don't know the details of this yet.They also started him on epinephrine, dopamine and levophed. They were able to get into the abdomen and put 3 drains in wi
October 2nd Mid afternoon, Sarah's update. Caleb is back in his room and he was able to recognize us even though he as not able to open his eyes. He had a bit of an adventure during the procedure. First a seizure then arrythmias. They did a CT scan of the brain that showed a bleed. We don't know the details of this yet.They also started him on epinephrine, dopamine and levophed. They were able to get into the abdomen and put 3 drains in wi
th their own particular functions.
One is to drain the others to irrigate. The tummy is softer and really hoping
that this will allow the inflammation to go down and give him a chance at
recovery. Thank you all for praying. The Drs had warned us that being so sick
he possibly might not survive but he is back.
October 3rd AM When Caleb came back from
surgery/procedure where they had drained infected fluids and had irrigated his
abdomen they were really concerned about his vital signs and kept a close
watch. They medicated him more to keep him rested. They also did dialysis on
him to drain fluid off. So, true to form, when he was close to the end of the
dialysis and his pain med had started wearing off a little he opened his eyes
wide and was communicating with us. He told us that he was cold and when Craig
asked if he wanted to watch a movie he chose Captain America. So they watched
that together about halfway when Caleb started dozing off and Craig had to go
back to Bullhead City. The night nurse was the Christian Medic now RN who had
brought violin and cello worship music for Caleb to listen to. Caleb liked this
and helped him relax. Then we had some edifying conversations about how
faithful God is. The I left to go to the RMH to do laundry!! This morning I was
told that he had a good night. The drains that they have put in him are working
well. They have to irrigate one every 4 hours and the other has a bulb suction on.
The surgeon came by this morning and was happy with how things look. They feel
the abdomen is looking better. The kidney dr also came by and has decided to
skip a day for his dialysis and see how he does on his own. He has an output
but still hoping for more. He is still putting out a lot of gastric fluid
through NG tube and PEG. Occupational therapy came by and she was very
impressed by his strength and ability to follow commands in moving his arms.
Still has a bit of a fever. And the bleed in his brain was small and they are
not concerned about that right now. So encouraged today. The Lord is good.
Thanks for praying. Again, fully encouraged by God's word, Psalm 33 and Matthew
9.
October 4th AM Caleb had an interesting evening involving a move to a new room. They were on the last portion of cleaning and it was right in front of his room so he had to move to a new place. He did well and has continued to do well especially concerning his lungs. His RT told me this morning that his playing the trombone has probably helped him keep his lungs in good shape. Yesterday they had him on CPAP (continuous positive airway pressure) with him instigating his own breaths. He was supposed to be on that for a short time but when I came back this morning he was still on that and still doing well. So they have decided to totally take him off the ventilator two times today for one hour at a time and he seemed to be doing well with that. His blood pressure also was up some so he had to have a couple of small doses of Hydralazine which brought it down nicely. His blood sugars have been stable with minor adjustment to the insulin. He has not required blood in the last couple of days. His stomach is still producing a lot of bile colored gastric fluid. His stoma is looking good but still little to no activity in his bowels. The drains they put in the day before yesterday are working well. His kidneys are producing urine but still not as much. He did not need dialysis yesterday and I don't know what the Dr will decide today. Physical therapy will be here at some point to sit him up. He really enjoys that. Craig will be here this afternoon and I am going to Bullhead City to be at the Choir concert at which Jeanette has a part. Will miss having Caleb there but he is ok with it. Again, we want to thank you for your MANY notes of encouragement. You keep uplifting us and caring so much. Thank you for praying. God is answering prayer. Now if we could get those bowels and kidneys working maybe we can come home!! That would be amazing. Psalm 34 and Matthew 10 for today. Again more encouragement from the Lord. October 5th, Craig's update. I had a good day with Caleb. It was nice to spend time with him. We got to work with the voice therapist and Caleb was able to talk to me a little. For some reason he didn't sleep good last night-so he's been very sleep today. There was a little problem with his oxygen and blood pressure dropping too low while he slept. Pray that his energy level will be better tomorrow as some of his friends from home will be here to see him. I have been here studying for Sunday and I was encouraged from 1 Peter 4-you know the passage that tells us to "Count it all joy!" I am blessed to be able to say this because of our many friends who are helping us through this trial. Praise God for all of you.
October 6th, Sarah's update. We are all at Caleb's
bedside. He is sitting in bed listening to the UofA vs Stanford game. He has
quite the pleasant look on his face. He is not jumping up and down nor telling
the ref what to do. His Dad is taking care of the animation needs for both of
them :-) He had a pretty good night except that when he sleeps he drops his his
O2 sats and stops breathing occasionally and for short periods.
So they are considering leaving him on CPAP at
nights and during the day keep him stimulated. They decreased his pain med
hoping that he'll be be more alert. They took out his arterial line and his
vital signs are stable.The kidney Dr is here and happy with his progress. The
stoma looked good and had some output. I got to change the ostomy bag by myself
for the first time. Still extremely minimal bowel sounds. There is still a lot
of green output from his gastric tubes. The other drains are happily draining away.
He only spiked a temp once yesterday. Overall he is doing better today. The
Christian Club kids are coming up to see him today. Thank you for praying and
encouraging us. Countdown is on for my sister Virginia coming in 3 days and
my brother Hovsep and family coming in 6 days Yay!!!!
Oct 7th AM When I came in this morning
he was sleeping soundly and making approprriate sounds that went with that
assumption. He was still on CPAP. His nurse told me that he had slept well
listening to the brass praise CD that Aunt Connie had sent him. Pretty soon
they started coming in. The wake up crew. First the RT and took him off CPAP
(this is only on at night) . Then came the surgeon. She was quite ple
ased that he was doing
well and that there was stuff coming out of the stoma and that the drains are
doing well. She revisited the surgery idea and they are talking of consulting
with an adult surgeon, not that the surgeons are not adults but one that does
surgery on adults and they told him that he is verging on being an adult and
that this was a good option. When she left,Caleb was wide
awake so we read Psalm 37 then put on one of Pastor Fellars sermons called
"Looking Unto Jesus" . We were quite edified with the portion we were
able to listen to when the ICU intensivist Dr came and liked what he saw and
gave orders to decrease his pain med. Also told us that they have consulted
with the surgeon and that he would come today sometime. Then came PT who got
him out of bed and sat him in a chair. Now he is watching the movie "The
Patriot" and keeps saying he feels good. As he was sitting RT also put on
his speaking valve and he has been able to talk. Thank you all so much for
praying, and caring and being there for Caleb and us. The kidney Dr just came
too and said that he will wait on dialysis today and see how he does getting
rid of fluids on his own. He said he had more urine output in the last 24 hrs
then before.
Oct 7th PM Having weighed the pros (good labs, better urine output, no fever in 24 hrs) and the cons (stool in abdominal cavity and potential for deteriorating fast, beginning to have fevers) they are hoping to do surgery on him today to remove the section of bowel that has the perforation. The pediatric surgeon who has been with Caleb from day 1 and the head of the surgical trauma dept along with the PICU intensivist and the oncology docs feel like this is his better option than waiting. Craig and the girls and grandmother are on their way. Tentatively surgery is planned for late afternoon. Thank you for praying.
Oct 7th PM Having weighed the pros (good labs, better urine output, no fever in 24 hrs) and the cons (stool in abdominal cavity and potential for deteriorating fast, beginning to have fevers) they are hoping to do surgery on him today to remove the section of bowel that has the perforation. The pediatric surgeon who has been with Caleb from day 1 and the head of the surgical trauma dept along with the PICU intensivist and the oncology docs feel like this is his better option than waiting. Craig and the girls and grandmother are on their way. Tentatively surgery is planned for late afternoon. Thank you for praying.
Oct 7th night Caleb is out of surgery. The Dr said that
his vitals stayed stable throughout. He lost a lot of blood but they gave him 5
units. They took out a large amount of of his large intestines out. There were
a lot of adhesions which they cleared. Also there were adhesions around the
stoma which they took care of. He is back in his room and on Vecuronium to keep
him immobile while the surgery heals. He might be on this med for a couple of
days to help his surgery heal better. Thank you for praying. Needless to say we
are happy to have him back.
October 8th AM Caleb did well through the night. He is looking pretty stable but still having issues with his blood pressure. He's still pretty unresponsive because of the meds he is on. His dressing looks dry and intact. He has one of those dressings that has laces to allow for easy access to his incision and also allows for swelling. The surgeons came by early today and they were pleased with his status. They
October 8th AM Caleb did well through the night. He is looking pretty stable but still having issues with his blood pressure. He's still pretty unresponsive because of the meds he is on. His dressing looks dry and intact. He has one of those dressings that has laces to allow for easy access to his incision and also allows for swelling. The surgeons came by early today and they were pleased with his status. They
want him to get off
the paralytic med and want him sitting up in the bed a little later in the day.
So far things are looking good for the state he is in. So we bathed him and
rubbed his back and packaged him nicely and he is resting now not that he was
not resting before but its hard to tell. A neat and encouraging thing today was
hearing the nurse humming "Jesus knows all about our struggles" Of
course this led to meaningful conversation and an addition to a peaceful morning.
Thank you so much for praying.
October 9th AM Craig came last night mainly because he had forgotten his backpack and also his evenings are pretty full this week but I wasn't complaining. So we hung around in Caleb's room. He was doing well post surgery. No fevers and was beginning to come out of the paralytic med that they had to give him. He was beginning to communicate on a limited basis as he was back on the ventilator. They have been moni
toring the pressure in
his bladder which gives an indication of the pressure in his abdomen. So
increasing pressure would mean that there would be increased swelling in his
abdomen which could lead to limited or no blood supply to the remaining good
bowel and thus causing more damage. So he was pretty stable so Craig and I went
back to the RMH and had a yummy meal prepared by one of the volunteer groups
then went to bed. We got a call from his nurse at 1am saying that the pressure
in his bladder was increasing and that they were going to be putting him back
on the paralytic med hoping that the abdominal muscle would relax and thus
decrease the pressure. Caleb had been concerned mainly that the paralytic med
would have more of a permanent then a temporary effect so Craig and I talked
with him and encouraged him and he was ok to do this. This morning, with the
major fluid shifts happening in his body, they have decided to put him
temporarily back on the CVVHD machine to continuously monitor his intake and
output of fluids and electrolytes. They have also taken him off the paralytic
and he is beginning to move around again. Read Psalm 39 and Matthew 11 28 Come
to me, all who labor and are heavy laden, and I will give you rest. 29 Take my
yoke upon you, and learn from me, for I am gentle and lowly in heart, and you
will find rest for your souls. 30 For my yoke is easy, and my burden is light.”
October 10th Yesterday is merging into today. Yesterday he had a good day. Basically stayed quiet. I went to an ostomy support group and it was encouraging to hear all those people who have ostomys for so many years and how they have learned to cope. When I came back from the meeting the night crew was already here. They were very caring to Caleb and in a little while I went to the RMH to sleep. In the morning
the nurse said that he
had had a good night and that he had tried to talk to them. As he is waking up
they are changing some of his pain meds where they don't have to be drips but
can be given on an as-needed-basis. Some of the meds are making him agitated
that almost looks like he is going through withdrawals. His abdomen looks
pretty good except for he has an area on his incision that is looking red and
the dr was concerned. His kidneys are still not working well but being on CVVHD
it makes kidney function harder to evaluate. Anyway, keep praying that the
intestines and kidneys would start assuming their function.
October 11am Yesterday was a bit of a trial for me because, if you remember, in one of my earlier statuses I had mentioned that I did not pass lipreading 101 and yesterday my abilities were being taxed to the max. Mr Caleb had woken up and was very eager to talk. The nurses thought that part of his excitement was because of the meds that he was being taken off of. So we tried to keep him as calm as possible. Today his night nurse told me that he had had a restful night. He is still eager to communicate but not as hyper. RT has been very kind with him and have repeatedly put him on the Passy-Muir valve to help him make sound while he is mouthing the words. Last night he really wanted to talk before I left to go to the RMH so we put on the valve and he said to the nurse "You are doing a good job". Must confess we were quite moved and speechless. He has needed Tylenol and is on a cooling blanket as he battles fevers today. His GI Dr thought she hears some rumbles in his tummy and he has had some output through his stoma. They took out his NG tube and are talking about maybe giving him some nutrition through his PEG tube. PT was here and did some exercises with him. Possibly will get him to sit up tomorrow. The CVVHD (continuous dialysis) came off last night at 10pm and his kidneys have started to produce urine again. Still need to see more. Prayers are still needed for his kidneys to work at their best, for the bowels to start working, for the fevers to go away, that he'll regain his strength as he gets up. We read Matthew 13 today. Praying for seed to fall on good soil and good fruit to come from all these trials. Thank you for your interest and your kind ways. Forgot to say that he is on CPAP again and doing well.
October 12 Caleb had a pretty good night
last night. He had a bit of oozing from his incision but after changing his
dressing, giving him a bath and changing his linen he was able to rest. His
temp stayed low grade so the nurse basically just increased and decreased the
temp of the cooling blanket to accommodate the ups and downs of his temp. He is
able to stay pretty comfortable with the meds he is on right
now and not requiring
much extra support such as Hydralazine or extra Dilaudid. The surgeon was by
this morning and drained his incision some and they will observe this over the
weekend and then do a cat scan on Monday to see how his abdomen is doing. His
stoma continues to look good and is putting out small amounts. His PEG tube is
not draining as much gastric fluid. His NG tube is out. His kidneys put out
more over the last 24 hours than even before his surgery. He is back on CPAP
and they are trying to see how he can manage to breathe on his own again.
Yesterday he was off 6 hours. We'll see how he does today. My sisters Lily and Virginia came yesterday and it
was so nice to catch up with all their news. We left to go to the RMH around
10:30pm and it was thundering and lightning and hailing so by the time we got
there we were soaked. But we stayed up and talked til about 1am. Hoping to go
hear the Thunderband tonight. Craig will come up after work and I'll go down
for Friday night. The encouragement today from the Word is from Psalm 42:11 Why
are you cast down, O my soul, and why are you in turmoil within me? Hope in
God; for I shall again praise him, my salvation and my God.
October 13 Dad's update It was Dad's night with Cal so Dad is doing the update. :) Caleb had a pretty good night. We watched a couple of movies together and Caleb was pretty into it. His incision from the surgery is bleeding, so they are trying to figure out what to do about it. Please pray that things would start healing ASAP. Caleb is putting out almost normal urine-but the color isn't the right one. it is a typi
October 13 Dad's update It was Dad's night with Cal so Dad is doing the update. :) Caleb had a pretty good night. We watched a couple of movies together and Caleb was pretty into it. His incision from the surgery is bleeding, so they are trying to figure out what to do about it. Please pray that things would start healing ASAP. Caleb is putting out almost normal urine-but the color isn't the right one. it is a typi
cal color for what
he's been through-but pray that it turns the right color soon. We watched the
band show that they will be doing for competition today and he enjoyed it. But,
I know he was yearning to be on the bus today. He always informs us that the
band rides are always the funnest part of a band trip. :). Caleb has returned
to us from the out of it stage right after the surgery-but there still is
plenty of recovery. He still is in need of God's supernatural hand of healing.
Thanks for all you who are so supportive. We are overwhelmed and joyful for how
you've picked us up through this trial. :)
October 14 Last night was one of those days where I just had to leave and go "home" and pray. I typically like to tuck Caleb in before I head out but I had just come from Bullhead with Virginia and Craig has been with Caleb all day. Caleb had had some pretty heavy bleeding from his abdomen where they were needing to change the dressing every 1-2 hours. When I came the nurses were in report and when they were
October 14 Last night was one of those days where I just had to leave and go "home" and pray. I typically like to tuck Caleb in before I head out but I had just come from Bullhead with Virginia and Craig has been with Caleb all day. Caleb had had some pretty heavy bleeding from his abdomen where they were needing to change the dressing every 1-2 hours. When I came the nurses were in report and when they were
done they were busy
trying to contain the flood. So I asked them if there was a way we could put
something on him that at the very least could hold the bandages in place. The
idea I had would have held the bandages in place but would not put enough
pressure to stem the flow. Craig had to leave to get back to BHC in time to
pick up Jeanette who was arriving back from Competition in Phoenix. So many
things were happening so the tucking in time was nowhere in near sight. By that
time they had thought of putting on an abdominal binder but they were looking
for one. Also the nurse had put on worship music so already the atmosphere was
on the mend. So I kissed Caleb and said I had to go and that they would take
good care of him. He was ok with that. This morning the nurse was beaming. He
said we were able to fix the dressings with the binder and it really worked.
Caleb looked neatly packaged and happy. This morning the GU, GI, Oncology and
PICU docs have all been by and have decided to wait out and see how he will do
until tomorrow. Caleb's vitals are stable. He is back on CPAP. His temp was up
so they've dealt with that. His BP was up so they've given pain meds and this
has brought it down. He keeps saying he has no pain but his BP goes up when we
fuss with him. His hemoglobin and platelets were low so he got 2 units of blood
and one of platelets. He is now resting. We are waiting for Craig and the girls
to come up. The high school is out for 2 days so we'll spend some together with
Virginia. So nice to have her here. We are having a Hercule Poirot marathon.
Thank you for praying and encouraging us.
October 16 I started writing an update
but the computer decided to shut down just as I was writing the last sentence
so I lost my note and my chance. Craig and the girls were here so they got to
watch a lot of movies together. Virginia is also here and she is being such a
big help. After I wrote my update the day before yesterday Caleb had a visit
from his choir teacher Mrs Wilhelm and her husband. Caleb was
so encouraged and was
asking her details of who has signed up for regionals and disney competitions
and was making faces to match his feelings of sadness or gladness if they his
friends had decided to try out or not to try out. Caleb really wants to be up
and about by December so he can be ready with his piece by end of January. That
was Sunday. Mrs Wilhelm was the highlight but otherwise pretty uneventful.
Monday the decision was made to do his CT scan of his abdomen. The initially
planned it for 8am but was delayed until 2pm. I think it was harder for me than
on him to wait. By the evening we had found out that there were some issues in
his abdomen that would declare themselves over time (possible abcess, possible
obstruction, ilius, possible fistulas forming) but othing seemed urgent that
required immediate intervention. So they decided to give him a small dose of
Mag Citrate to see if they could see any movement in his intestines. He has
been on CPAP with his respirations and has tolerated this well. Trying to move
to get him off the ventilator soon. Thank you all for praying and and uplifting
us. We are continuing in Matthew with Jesus teachings and miracles. We keep
looking to Jesus for healing for Caleb and we are asking that his will be done.
Matt 8:2.
October 17 Well, here I am, writing a status before noon. Caleb is sitting in the chair playing his computer game. He has a pleasant look on his face. He is so happy to be sitting up. When the Drs made rounds today they were happy with his overall state. He still is getting fevers. His kidneys are working well. His lungs have some fluid on them so they will do dialysis today to get the extra fluid off. They
October 17 Well, here I am, writing a status before noon. Caleb is sitting in the chair playing his computer game. He has a pleasant look on his face. He is so happy to be sitting up. When the Drs made rounds today they were happy with his overall state. He still is getting fevers. His kidneys are working well. His lungs have some fluid on them so they will do dialysis today to get the extra fluid off. They
are weaning him off
the pain meds. The goal is to get him off the ventilator by the end of the
week. Keep praying that the problems that were discovered on the CT scan of his
abdomen will resolve themselves and that there would not be a need for another
intervention. We keep being encouraged by God's abundant mercies showered on us
in the form of your prayers, encouraging words and actions, visits. Matthew 25:25-40
October 18 am I was blessed by the visit with my brother Hovsep and sisters Lilyand Virginia . We talked by Caleb's bedside then we went out to eat in the evening and talked some more. It was great having them here.They were a big help. It had been a fe
w years since we had
all been together. Hovsep and Lily went back home already and Virginia is here
a few more days. Caleb had not been feeling real great today. He's had fevers
and vomiting. His cultures have come back negative so not quite sure where the
fevers are coming from. Also they had given him a medicine to help move his
intestines that have made him very nauseated. But now they gave him Zofran and
stopped the nauseating medicine so he is feeling better and wants to sit in the
chair like yesterday. They came by this morning and he did not feel well enough
to do this. The Dr is on track to get him on a trach collar by this weekend.
This will allow him to be off the Ventilator and on his own . They dialyzed him
yesterday to take off excess fluids. His kidneys are working well. Thank you
all so much for praying. We appreciate your love and concern so much. Matthew
18 was the encouragement for us today. Love the old hymn "The Ninety and
nine" that goes with this passage. We used to sing this when Caleb was
small and he really liked it.http://www.youtube.com/watch?v=c84EXhjcpXE&feature=related
October 18 pm Almost time to go to bed but wanted to say that Caleb had started to feel better by the evening. They had stopped his continuous pain med. The stopped the Lasix drip. They have decided to give those meds round the clock at scheduled times along with theTylenol. We were specially blessed when Michelle's husband showed up with a care package from Ironwood. That was so sweet. Thank you all so much. Please pray that flushing the stoma would be successful tomorrow. Goodnight!!
October 19 It has been relatively uneventful day today. Not as many docs have stopped by to see Caleb so I am thinking this is progress. The main doc that came by was the surgeon who flushed his stoma and he tolerated this well. We have not seen any results from that but they are giving him more mag citrate and mucomyst to help stimulate and encourage his intestines to do what they were created to do. He sat
in the chair for an hour and half first thing
this morning. He is now sitting up in his bed and playing with his kindle.
Today is the last home football game of the season and the last time the
marching band will perform at the game so Craig is going to watch that and then
come to Vegas. The MHS choir has a fundraiser at "Wash Me" car wash
from 8am-12noon tomorrow where Jeanette will be busy. Esther has had the week off for
fall break and is anxious to get back to school. Thank you for praying and
encouraging us. We are humbled by the attention and the care we have
experienced from you all.
October 20 Dad's report Today we had a good time with Caleb. He sat up for most of the morning and played the board game "Life" on his kindle. He was off the ventilator and talking a lot! It was so nice to spend time with my son. We had some special visitors-old contacts from Immanuel Bible Church and Caleb's best friend's parents. It was so nice to be encouraged by these good friends. In the afternoon they took some more tests to see why he hasn't been able to get stuff through his digestive system. We are still in need of another miracle for this important step in Caleb's recovery. Once this happens Caleb will be on the downhill side of the mountain. We so appreciate every prayer and thought.
October 21 Dad's report
Fun day with Cal. His buddy Andy came up and he talked with us more than we've ever heard since this crisis. He has been improving so much on the communicative level. Also, he's improved with many of the other tests they've given him. But, he just needs his digestive system to be restored! We need prayer for patience as they do everything they can to open things up. Sunday was nice as we enjoyed the Kelting,s again in church. We had a great lunch at our friend's Pizza place. We stored away some in the freezer so Caleb can have some later on. God is our ever present help and we are thankful for all the prayers.
October 22 Oopers, I guess we did not write anything on this day. Don't know why. Craig was with Caleb and I was in Bullhead City.
October 23 Today has been a good day for Caleb. He told me he had slept well last night and this morning he was still sleeping. Pretty soon the Drs came by and he was up getting in the chair with help from the PT dept and he got on his trach collar (off the vent) with help from the RT dept. He sat in the chair for about 1.5 hrs. They are trying to get him to space out the frequency of his pain meds so today
he had moved from
every three to every four hour pain meds. The PICU dr also told us that they
had him off of all his antibiotics so all he has now is the antifungal. His
vital signs look really great. He has been taking sips by mouth and so far his
favorites are blue and yellow powerade, lemonade and mountain dew. And the big
news of the day is that there was "gold" in his ileostomy pouch and
quite a fair amount. The nurse was able to hear some bowel sounds. So we are
very encouraged today and very grateful to the Lord for what He is doing for
Caleb. These are definitely answers to prayer. Thank you all for praying. We
love you.
October 24 Today was a pretty good day too except for Caleb was really sleepy a good portion of the day. They are trying to slowly wean him off of meds and equipment. So last night they had wanted to see if he will void on his own but he really struggled so they hooked him back up for today and will try again tomorrow. So they had given him a pain med this morning but it caused him to be real sleepy all day.
October 24 Today was a pretty good day too except for Caleb was really sleepy a good portion of the day. They are trying to slowly wean him off of meds and equipment. So last night they had wanted to see if he will void on his own but he really struggled so they hooked him back up for today and will try again tomorrow. So they had given him a pain med this morning but it caused him to be real sleepy all day.
He continues to take sips of fluids and he
really likes this. He sat in the chair for abt 2 hours this morning.Hovsep and Mama came to visit us today and they took Virginia to Bullhead City with them. I am going to miss
Virginia's companionship. Its no fun to be separated. We had one night where
all four of us sibloids (as Lily calls us) were together and that so so nice.
God continues to encourage us with progress in Caleb's health and wonderful
notes from you all. Forgot to say that it was great to have Rhonda and her husband visit us today. We've been
blessed by visits from Samuel and Christine andAndrew and Chelsea . Thank you all so
much.
Ocober 25 Caleb is continuing to make strides in the right
direction. The team (drs, nurses, pt, rt etc) had a meeting today to discuss
Caleb's progress and they are working on trying to get him well enough to go to
an inpatient rehab facility in the next couple of weeks. Caleb is continuing to
take fluids by mouth and tolerating well. He was nauseated once today and
Zofran helped a lot. They've been clampi
ng his PEG tube for
2hours clamped and 2 hours unclamped. There is not much output from it which
means it is moving down. There is output at the stoma, however and that is
exciting. They are going to start his po chemo med tomorrow. He has been off of
chemo since Sept 7th and his hair is coming back. He is beginning to look more
like himself. He is quite aware of what is happening with him. He sat in the
chair for 2 hours this morning. He said he felt stronger than yesterday. He is
playing some game on Kindle right now. Craig is coming up to spend the evening
with us. So excited to see him. God continues to encourage us through His word
and acts and your words and prayers. Kids have their last band competition in
Flagstaff this Saturday. Tonight is their last marching band mega practice. Its
been a good season. MHS did well. Craig is here so gtg. Love you all.
October 26 Did not post
October 27 I did not post yesterday because frankly I did not know what to say. Caleb is on his way to recovery and we only have the Lord to thank. He is now aware of his status and trying to assimilate all the info regarding himself that he missed while he was really sick. He feels a little down. He told me and the nurse that he was sad. He is in the position where he is going to have more input into his ca
October 26 Did not post
October 27 I did not post yesterday because frankly I did not know what to say. Caleb is on his way to recovery and we only have the Lord to thank. He is now aware of his status and trying to assimilate all the info regarding himself that he missed while he was really sick. He feels a little down. He told me and the nurse that he was sad. He is in the position where he is going to have more input into his ca
re both by words and
actions. One of the things that bother him is that he can't talk. They have
given him the Passe-Muir valve that enables him to talk but he really has to
work at this. He is getting stronger and stronger on his feet but this requires
work on his side and he gets really tired. He sat in the chair for about 2
hours this morning and watched Avatar. He really enjoyed this. Now he is
watching the game USC vs UofA. The score is 21 to 13 and Caleb thinks that UofA
can gain their lead back and win!! So, go Wildcats!! They are clamping his PEG
tube for 3 hrs and opening it for 1 now. Today they brought him a lunch tray
for the first time. It had yello jello, orange frozen popsicle, apple juice and
broth. He was not real excited to see the broth but was willing to try the
others. The GU dr just came in and asked if he had any objections to taking out
the dialysis catheter that is in his jugular vein. Caleb said that was fine
with him so sometime today it will come out. So thanks for praying. Keep
praying for him to get stronger and be able to start doing his normal functions
and also that the Lord will give him the stamina and joy in Him as he continues
the road to recovery. We read of Jesus' sufferings on the cross for our sins
this morning. Matt 27. Thank you Lord for saving us and giving us new life.
John 3:16.
October 28 Whew, what a day. Mostly
spent caring for Caleb. Bathing, sitting in
chair, suctioning, clamping the PEG for 3 hours and unclamping for 1, drinking
juices, three attempts at changing his trach to a smaller size with the last
one being successful, visit with his buddies Alexander, Eriq , Andrew. I am pleasantly overwhelmed. I feel blessed
that he is doing so much better. Craig and the girls and grandmother also came
up. What a blessing. More tomorrow Lord willing. Goodnight
October 29 No update
October 30
Its 1:30pm and Caleb is taking a nap. He got up and sat in the chair for about 1.5 hours this morning with the help of PT. He is taking longer steps and looks stronger. Speech therapy and occupational therapy also came and worked with him today. The one who is in charge of getting him his oral chemo meds also stopped by with some encouragement from Starbucks!! That was really sweet. His blood sug
October 29 No update
October 30
Its 1:30pm and Caleb is taking a nap. He got up and sat in the chair for about 1.5 hours this morning with the help of PT. He is taking longer steps and looks stronger. Speech therapy and occupational therapy also came and worked with him today. The one who is in charge of getting him his oral chemo meds also stopped by with some encouragement from Starbucks!! That was really sweet. His blood sug
ars have been stable
so they are going to move his insulin from being a separate drip into his TPN.
Then they will do scheduled blood sugar tests and give extra insulin as needed.
That gets rid of a line. Then they have decreased his Lasix from 3 times a day
to 2 times a day. They have increased the clamped time of his PEG from 3hrs to
4hrs. He is unclamped for 1 hour in which time he likes to take really huge
swigs of his favorite drinks and of course watches it all come out almost
instantly through the unclamped PEG. Yesterday the Dr mentioned that the goal
is to move him downstairs to the pediatric floor by this weekend. This brought
a huge nod of approval from him. Then today they were mentioning getting him up
in a wheelchair and just give him a tour of the unit. He was really in favor of
this also. Craig is coming this afternoon and bringing my Mom andVirginia . Craig will stay with Caleb and the tree of
us will go on to meet up with our other 2 sibloids, Hovsep and Lily for a brief few hours
before Virginia goes back to Armenia in a week and Hovsep moves to BHC. I also
get to meet my new nephew Eli. So excited. I'll be back at my post tomorrow. We
keep reading in the gospels and the Psalms and are really encouraged by God's
word. Really love the relationship we have with God through Jesus' love and
forgiveness of our sins. Mark 2. Still need prayers for continued stamina and
grace as Caleb relearns old skills.
October 31 Today I got to spend the day
with Cal (that's me, Craig). He had an even day-with one issue with breathing.
He still has a bit of fluid that he needs to cough out every so often.
Unfortunately we did not do that in a timely manner this morning. By the time
we did get it taken care of it threw off his routine. Soooooo he had a tired
day without much progress. But tomorrow the chief nursing off
icer will be here to
make sure things role on without a hitch(I'm meaning our Sarah). Looks like Cal
will be moving down to 4th floor here in a couple of days. After several days
there they'd like to move him to a rehab hospital. There are two of the kids
variety in Las Vegas. So continue to pray that all of this can happen in God's
perfect timing (I wanted to say ASAP-but we know that's not for the best :) ).
We continue to wait on the Lord. Caleb is getting better. His vitals are all
almost normal. He is sleeping now and looks like he's having a peaceful rest. Earlier
in this ordeal he just didn't have that look. So, God is good.
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