1-06 yeast gram negative
3/06/06 Dr reyes (seattle childrens hospital seattle washington) lower scope, lower barium enema showed terrans
sigmoid region is extremly dilated due to long term constipation suggestions included lowering prograf to 1.5 from 2.0 bid
Irrigations daily (and as needed) encourage small meals (ie grazing eating) result was terran had a very hard
time vomiting some times numerous times a day and increasing complaints of reflux also weight droped to 27.3 kg during visit
of three weeks so tpn had to be restarted but only every other day as well as off tpn days ivf. feeds not going so well
at this moment.
4/06 now home seattle had suggested us going home and doing irrgiations to try to decrease terrans bowel size and then
return in two months to place an illeostomy (not sure if it would have been permant more testing was suggested but we felt
it was of enough diagnostic value at this point to put terran through alot of invasive testing) We are attempting to
do these irrigations and dr reinstein placed terran on mirlax to help wiht his constiptaion terran was very sweet and does
not fight the irrgations have helped and todate we hve been able to advance feeds and pedlyte to get terran back off tpn and
only have ivf boluses as needed.
4.4 saw dr sher allergy and immunolgy suggested to change ivig to subcu to reduce using terrans med port and less side
effects. Terran has not had a line infection since the end of jan.
4-5 HOspital line infection tpn stopped 3/31/06 disharged 4/10 miami dr kato/Dr thompson (preformed terrans pullthru)
Went over all terrans records from seattle both agree terran needs a myectomy it will be preformed in miami 4/18
4/18/06 miami dr thompson / selvaggi preformed myectomy,dilation, upper lower scope selvaggi said he found some ulcers
in both biopsies pending discharged from hosptial 4/19 to transplant house with clinic 4/20
6/06 ACH line took line out due to chronic infection placed midline which backed out went to camp and spent 5 days no
iv fluids or tpn nothing weight starting to drop
JUNE 5th 2006 terran attened camp sunshine
7/7/06 ach dr reinstein being concerned at terrans weight loss (down from 31 kg in march to 24 kg now) did a scope
to rule out rejection terran had massive yeast and espogitis as well as rejection of the moderate grade in his stomach, terran
recieved a dose of solumendrol iv and transfered to miami who also gave him a scope and found that now his stomach was not
so terrible thanks to the steriods, give a dose of campath
Dr harmel placed
a new broviac for tpn terrans weight is a drastic tpn restarted but terran is still losing weight
Terran also aspirated duing scope which terran had been npo for 36 hours prior despite this terran vomiting what appeared
to team as food. Terran got some in his lungs being treated for pnemonia iv antibotics
7/21/6 discharged to home from miami miami recommends retransplant recieved campath and done of sulumendrol in miami
for treatment of moderate rejection aspirated a second time ran fever for one day started on zoson for aspiration pnemonia
Terran also aspirated during this scope as well and again got some
in his lungs with impending pnemonia
7/26/06 terrans weight is again going up doing better but can not tollerate stomach not being ot gravity or suction.
no feeds due to migration of formula to the gtube from jtube, tropic feeds at 10 mil
terran began to run fevers 7/25 admitted to ach cultures drawn 7/28 terran again septic dr reinstein said he is in multi organ
failure and his only hope is transplant again
for immediate relieve at least
needs an ostomy to clear his bowel ebv numbers begining to rise as well blood test done by immunology showed terrans igg level
is down to 235 given ivig iv july 28
Transfer to miami due to functional
bowel obstruction fever resolved but no source yet? tpn dependant immunology started on long term antibiotics due to terran
being given campath 7//20 in miami
8/1/06 terran transfered to miami via ambulance very ill, terran is totally obstructed can not take in any
food or fluids now tpn dependant. Surgery performed 8 /4/06 results were disaster during surgery kato came out
and told me
terrans bowel is a mess just a mass of tissue really and he needs to be relisted or he will not survive.
terran does ok after surgery but when miami went to relist terran his insurance company demanded terran be transfered to another
hosptial that is network
the centers chosen were pittsburg, nebraska, new york, and georgetown. Miami insists we
list terran even at out of network we agree but due to terrans conditon being totaly dependant on suction, and also reccurent
fevers and no longer being able to get
any meds via his jtube except prograf he was transfered back to dr reinsteins care
at ach to await our parental decsion on where terrans transplant would take place if at all
8/11/06 Terran transfered back to ach while miami had stopped all terrans iv antibiotics and diflucan (terran continued
to run intermentant fevers in miami despite negtive culures dr reinstein agreed that this could be dangerous to terran and
placed terran back on all previous iv meds miami had removed
after long discusions with our family and with dr reinstein
and with much prayer we have decided to follow our insurance companys direction and take terran to pittsburg for evalation
and possible treatment. While Dr kato never gave me a name for what was wrong with terran he did have an extensive
discussion
with dr reinstein on his findings in surgery which is called abdominal coccoon. in looking this up on the internet i
found a few articles written by the doctors in pittsburg who used surgery to treat this condtion till the child had retransplant.
for the first time I feel hope that terran can make it to transplant
8/16/06 terran turns double digits in All Children's despite being in all children's he had a great day
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daddy cephas and terran 
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In the afternoon terran got a visit
from his daddy and brother cephas

| Terran and babyt Ryan |

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Ryan is a fellow MV transplant from boston 
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Hello terran had a great day he felt
well and had lots of friends come by and visit as well as filled up his wall wiht cards

AUG 16 2006 terran turns 10 years
old a decade double digits what a day



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Terran and his Dr Reinstein 
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Dr Reinstein started the day off
with a visit to the sleepy terran who just finished opening his presents from mom and dad a new go phone so he can call mommie
and daddy any time he wants (he uses his allowance to pay for minutes) what a big boy 

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Terran and his new friend connor 
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| THANKS ACH 3 SW FOR THE WONDERFUL PARTY |

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SILLY NURSES 
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THE NURSES AND STAFF OF 3 SW OF ALL
CHILDRENS JOIN TERRAN TO CELEBRATE HIS BIRTHDAY AND SING HIM HAPPY BIRTHDAY 


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roger katie and terran 
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Roger and Kathi Ellot dropped by on
their way to the airport to say hi and bring terran some more videos for his dvd player they got him for his birthday
thanks
roger and kathi 
Enter content here 
| THANKS FOR THE BALLONS |

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Q105 TAMPA BAY AND MASON DIXON 
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| wall of cards |


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8/21/06 terran transfered via plane to pittsburg to seek further recomdations. I so pray they can help us at
least get terran stable enough to transplant.
8/30/06 terran transfered to miami for transplant that fell thru kept over weekend
9/3/06 Mimai Multiviseral
transplant of Esphogatis, Pancreas, small intestine, large intestine, spleen, liver, stomach,
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| Terran and Dr Macaronni |

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10:30 am It time at long last terran
is getting ready for transplant Dr macky and the team arrive to bring him to the OR while waiting in the hallway nurse bertha
takes vitals to make sure he is ok for transplant.




Sept 3 6pm Still no word on hows terran
doing I cant sleep I cant seem to sit still so worried and so alone here, My heart breaks for him for having to go through
this again but he's strong and lively (ok some say bratty I say lively) I am sitting here in transplant house its been 6 hours
since i have seen my son i went ot target and bought him some new pjs and a power ranger megazoid he has been begging for..
The last words terran said to me was "i dont want to leave you mommie" my heart broke i wanted no I needed to see him smile
Dr macaronni(not his real name its terrans nick name for him) and dr wacky (again not his real name) and some of nurses as
you can see from above helped me keep things light terran was so frightned when he saw that stretcher that was to take him
to the or it just broke his heart. he cried but we had him in stiches soon enough and up until they took him from my arms
he had a smile. thats what I will remember that wonderful childs smile so wide and bright it could melt the heart of the hardest
human being.
I miss him so much its so hard to be alone terran and I have rarely been apart i know hard to believe
but 24 hours is a long time for us the last time we were apart this time was his previous transplant
I am so hopeful
that this will work and terran will be that child who will do so well we will be out of here so fast it will make heads spin.
Please keep him in prayer i will post more later.
all my love kim (who is very much with out her sidekick terran)
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Monday Sept 4, 2006
9:00 am
Terran is out of surgery while the next few hours are scary we are hopeful,
I was shocked when I saw him this morning I thought i could do this alone but I must admit its one of the hardest things to
ever see is your child so swollen and unconsious my heart hurts so bad for him. I cant wait to see his eyes open I wont post
pictures of him at this stage since I was so shocked I know you would be as well terran would be very angry at me as well.
So maybe tommorrow will be a better day for not only him but for me too as my husband maybe able to come down and be with
him as well.
Wedesday Sept 6th 8:40 pm
Forgive me for not updating sooner. Dennis and cephas got here late last night I feel
so much better with them here it allows me time to spend wiht cephas and dennis can sit with terran for a few hours so i can
get some sleep we switch off now i stay mornings he gets afternoons and we are together with him at night. He's had a rough
24 hours lots of problems with blood pressure which he is on meds for now as well as very low heart rate. but today he finaly
got extubated and is breathing on his own. Now we are struggling to keep him off the resperator he refuses to take deep breaths
and is at great risk of collasping his lungs if he does not so now i get to bug him (see if i bug him he cries or yells at
me forcing him to take a deep breath.) Tommorrow he is going to be in the st petersbug times again pasco section http://www.sptimes.com
look under the pasco section it should be online after midnight tonight and for 24 hours after wards.
our next big
day will be friday when they attempt to close terrans skin as you know terran is open right now due to swelling the doctors
will attempt to close his skin then we can get terran up and moving better (right now he is very scared everything will fall
out he is open from his nipple area to his pubic bone so its huge) any how I will try to update tommorrow as well.
Thursday
9/7/06 Dr keo contimanted terrans wound and main line when he was changing terrans line dressing in the icu he put betadine
on a sponge going from terrans ostomy which was leaking stool and going over his wound as well as his central line which did
not have a protective dressing with same sponge that had stool on it i informed dr hernadez who instructed keo how to do proper
sterile techniqe. and he recleaned the wound.
Friday 9/8/06 Surgery to close terran back on vent, lung collaspe
systematic infection gram negtive rods from wound infection did not see kato that night
Friday Sept 8th 8:40 pm
Well its been a hard fought 48 hours terran has made alot of progress even gracing
his face with a wee smile last night. Yesterday off the vent at last he was able to get up in a chair for a time while he
slept most of the time in the chair at least it did wonders for his lungs. Our biggest concerns right now is terrans high
blood pressure and sugar as well as platlet problem both they are working on to control. At least he gave me that bit of a
smile last night. OUr next concern has been terran's sleeping alot and being very sad his doctors rounded this am and we discussed
that terran is slipping in to a depression due to all these months he has been sick he has been so postive and upbeat but
things may have been just too much for him and sleeping seems to be how he is coping with all that is going on.
Today
he has surgery again to close his abdomen doctors were able to finaly close a huge gap in terrans abdomen while he is again
on the vent tonight and his lungs are having alot of problems he receieved blood palatlets again today so far he has gotten
6 units since transplant almost every night he is requireing blood (so please if you can donate to your local blood bank we
would be most appreciative if not to terran then just to restock supplies my son has used.) We are hoping to get him back
off the vent in the morning if his lungs are better. THen we can work on helping terran deal with all that is going on around
him. Its pretty scary for me I am worried its even more so for my wee son. But he's got lots postive going on for him as well
when he finaly wakes up and gets going he has lots of presents sent to him from loving people so far we have recieved 5 packages
from our friends at Guardian Society who have done a state by state package campain for terran as well has a few cards from
his many new friends from around the world later this weekend i will be adding names to the card web site so if you sent a
card or package you will know he got it. Thanks again this package and letters and cards will make him smile even if its just
a wee bit
saturday, 9/10/06 terran is very tired and seems to be very sad very concenred i tell the doctors of my concerns in the
icu they agree terran does not look right he has developed a severe wound infection that cultured three major infections terran
is to have scope today results showed mild rejection he is given steriods and more thymogolblin to treat.
MonUPdate Sunday sept 10 2006
3 pm
Terran is doing better we had a talk with terrans surgeon this after noon who was able to answer alot of our
lingering questions, we are so grateful to the transplant surgeon for working so hard to make the donor graft work seems there
was a question but since terrans need was so desprite the doctor worked extra hard to try and make the donor graft work.
The
reason terran has done so poorly since his surgery on friday was really a simple one they told me today that unknown to them
terran had a severe wound infection and by opening him up again to fix his gtube and closing his abdomen caused that infection
to become systmatic flooding terrans system with toxins.. that the reason he is on several powerful antibitoics to help control
the infection.
The ICU team has been working hard all day yesterday and last night to get terrans lungs better and
they have been successful at getting terrans satuations better they are doing albuerol and pulmacort via nebulizer as well
as vigous cpt therepy on his chest and back to help loossen up the stuff stuck in his lungs so today he is much much better
thanks to all their hard work
Monday Sept 11, 2006 Terrans 4 year transplant anniversery
Today the icu team was successful at getting terran
extubated and back on oxygen while his lungs are not the best this is a huge step forward. Dr. Selvaggi from pedi transplant
team rounded this am and told me some of what to expect from terrans wound infection he's was going to preform terrans first
scope this afternoon to make sure terran is not rejecting his new graft. IF all goes well he maybe going to the step down
unit or floor in the next few days w
we still have a long way to go still on tpn and fluid but well on our way to recovery.
The local bishop came by last night and gave terran much needed blessing its good to know when they are here to do such things
for terran he even said that they maybe able to visit terran when he is back on the floor. I am forever grateful to all those
who have had a hand in helping us though this difficult time
tuesday 9/12/06 11:00 am Terrans wound looks nasty while he is trying to get up and get moving he is in a lot of
pain and cant do as much as well as coughing alot they finaly started cpt for his lungs did not place a chest tube lungs sounding
better they claim. All day long tried to get dr mackey to get transplant team down here to look at terrans wound terrans
wound is leaking what looks like stool to me and his nurse
finally at 7 pm selvaggi comes down and looks at his wound and agrees with me that terran needs immediate surgery