Terran's 9th and 10th year The dream ends

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WARNING THIS PAGE CONTAINS ASPECTS OF TERRAN'S DEATH DO NOT READ ON IF YOU WILL BE SHOCKED OR UPSET BY THE PHOTOS ON THIS PAGE
 
His last year of life he went to camp. went to disney mgm had lots of fun but for the last three months of his life were spent in pain and suffering the last 20 days of his life were horrible no child no parent should be forced to watch their child die as i did on sept 24

 
Dec 2006 the marty lyons foundation granted terran a second wish his wish was to meet the rangers and meet them he sure enough did Edit Text

Click here to see a video of his wish granted by the Marty Lyons Foundation Edit Link

Summary 2003

 
Summary Jan 2005
 
Admitted'" 30 Due to platelets of 18 thousand ct scans
done to rule out ptld which still has not been decided or
discharded no treatment given except when terrans ebv numbers elevated to numbers higher then in sept 2004 terran was restarted on cytovene 125 ,mg to treat high ebv as of this date we are still deciding what to do about terrans low platelets consulting dr. kato in Miami gave us no leads except to ask for a hemotolgy consult and we are now awaiting word from Dr. Reinstein on a date for a possible upper and lower endoscope and possible bone marrow aspiration.

IVGG times two days, Platelets, and a single dose of foscamet which was unsuccessful as terran did not tolerate the foscamet and suffered vomiting
and severe diahrea it was a parental decision that the risks of the foscamet at this time is to great to risk terrans health his doctors agreed with us. the iv ganclyvior has been discontinued and we await further instructions from the transplant center on how best to treat terrans ebv. Upon discharge platelets were up to 46 feeds were stopped due to high output restarted at home once output became more stable, iv fluids at .45% were increased to 1000mi form 500 mil due to high bun and creatine numbers the increase did help lower
the bun to 24. .
Readmit Jan 30 2005 to ach, fever vomiting, day one fever day two line positive for yeast, given platelets due to low levels of 11, day three start ivig again for two days ampho b, feeds still off as terran is unble to tolerate his gtube to be closed, day 2 admission terran suffered a severe episode of vomiting blood which was attributed to his severe gastris which was seen by dr Reinstein on his last biopsy last admission. If ivig is unsussessful terran will start ritoxen for treatement of aitp, its felt that his ai'tp is autoimmune veres ebv related according to hemotolgy here at ach, consulting with dr kato in Miami who concurs that ritoxen may help terrans aitp terran is also started on iv prevacid and daily ph readings to try to address his reflux which it is felt to be causing his gastris
Feeds restarted and advanced slowly adding 1 pk ofL-Glutamine also due to we know terran will not get above 30 ofneocate 1 and he needs 75 cc to get off tpn we felt fortifying his diet may work a trail of benecalorie was
done at first once a day Y2 package at a time advancing to two packages a day adding 360 cal times two as of 2/13/05 he was receiving 29 cc an hour of tube feeds as well as three times a day bene calorie added to bannans or applesauc'e making his tpn requirements down to 43% 67% is given viajtube or gtube boluses dr r consulted with dr kato in Miami about terrans continued platelets and high ebv numbers which were 32315 as of 2/7/05 he suggested we give terran the ritoxen for 4 weeks and another round of ivig
as soon as terran is clear of line infections. Also during admission we added L-Glutamine studies have shown how glutamine can help strengthen terrans bowel in hopes of saving him from some line infections caused by leaky gut syndrome .
Update 2/18/2005 Started ritoxen 2/16/05 IVIG per hemotology spoke to hemotology doctor terrans coombs test is again positive she said he does have Evans syndrome and will need ritoxen for 4 weeks followed each week
 Update 2/18/2005 Started ritoxen 2/16/05 IVIG per hemotology spoke to hemotology doctor terrans coombs test is again positive she said he does have Evans syndrome and will need ritoxen for 4 weeks followed each week with IVI G at home if he does well after 4 weeks he will need .Ritoxen and IVIG every other week for 4 more weeks if does well then every month for a 6 months to a year. Discharged 2/18/05 received IVIG at home and on 2/18/05 and again at home 2/19/05 per maxium nursing Tollerating feeds at 30 cc of 1.1 kcl (mixing 10 oz ofh20 to 1 pkg of formula) doing well on benecalorie two pkgs per day in 4 unit doses mixed with baby bannas or baby food 4 times a day Fluids switched to d5/.45% saline 75 cc for 10 hours a day bun continues to be high,

3/1/05 visit with selvaggi Miami add cholestymine 1 gm times 4 given in bolus
3/15/05 Per visit with dr Reinstein dc asacol, lotonex, pancrease, decrease feeds to 15 cc 20 hours Y2 bolus amount to 60cc times 4 till dihrea slows down. New ebv numbers 221 down from 63100 in dec 2004 reduce ritoxen to every other week beginning next week, ivig still weekly
3/24/05-3-30-05 Line infection Candida sepsis candia albicans, start ambisome developed some renal dysfunction thought t<) be A TN secondtary to prerenal cuase or medication induced started on creatine climbed to 1.6 when consulted adviced to stop all meds that can be .25% albumin added to tpn creatine dropped to .09 after a few days
4/2/05- 4/4/05 readmit for gram negative line infection, start cipro albumn switched to promod per mccethean discharged on cipro for two additional weeks mom spoke to dr grana about terrans ritoxen and improved ebv numbers as well as recent renal decline she agreed it will be ok to for now to switch terrans ritoxen to monthly last dose given was 3/25/05 next dose due 4/25/05 as well as IVIG
4/05/05 Visit with Dr. R r CMS clinic went over events of the last few weeks resident had stopped antifungal dr r restarted it as it was supposed to run for 4 weeks lowered promod from 8 to 4 a day, prograf level was 0.9 on last prograf level ran in hospital so repeat prograf level obtained, raised terrain’s feeds to 40 and 36 cal per oz, doing well at this time dr r to review terrans tpn orders and make changes as needed, raise rate of fluids on days off tpn to 160 for 10 hours

5-03-5-05 Klebcsiella Pnemomia Line infection
June 2, 2005 Rituximab given by Dr. McClenathan. M.D.
06/2005 Terran becomes Ill will attending Camp sunshine mean while Dr Reinstein has split with his previous GI group and now is practicing on his own  Yeast Line infection PULL Line

08-8-08-17-05  Scope, Muscle biopsy, Dehydration
09-28-05 -10-03-05 Hyperphosphatemia, Dehydration severe dehydration bun, 93 creatine 3.3 on admission
11-06-2005-11-11-05 fever atypical pneumonia tpn dependant
12-05 Line infection

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
 

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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 Edit Picture

In the afternoon terran got a visit from his daddy and brother cephas

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Terran and babyt Ryan
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Ryan is a fellow MV transplant from boston Edit Picture

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
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AUG 16 2006 terran turns 10 years old a decade double digits what a day
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Terran and his Dr Reinstein Edit Picture

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 Edit Text

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Terran and his new friend connor Edit Picture

THANKS ACH 3 SW FOR THE WONDERFUL PARTY
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SILLY NURSES Edit Picture

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

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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
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THANKS FOR THE BALLONS
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Q105 TAMPA BAY AND MASON DIXON Edit Picture

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.

Aug 21 5 am leave for pittsburg via Jet ICU air Transport
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All snug as a bug thanks to flight nurse anne and DeJay terran is ready to go to pittsburg
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upon arrival at st pete airport terran is carefuly loaded on to the aircraft Edit Picture

safely on board and ready to fly
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What a crew Edit Picture

Terran Sleeps
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under the watch ful eye of ICU nurse anne Edit Picture

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Lights, SIrens MAKE WAY FOR VIP TERRAN
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in tender hands terran awaits take off
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flight nurse Dejay attends to terrans medical needs Edit Picture

hey man wheres all my attendants
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VIP terran demands attention Edit Picture

Jet ICU Flight Crew lands in st petersburg
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BACK HOME AGAIN YEAAAAAAAAAAAAA Edit Picture

AHHHHHHHHHHHH HOME AGAIN
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BACK SAFE AND SOUND IN ALL CHILDRENS Edit Picture

 
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,

 

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.

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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)

 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
 

 

Wedesday sept  13, 2006 2:46 am Dr Selvaggi finaly comes out to speak to us we have been waiting for hours not knowing what was happened.  What he told us was not good terrans jtube and gtube had to be removed due to they were leaking inside is abdomen that was causing major problems and damage to terran inside.  terran would not be able to have a gtube or jtube ever again.  terran would have a njtube till he can eat enough to survive.  big challenge.  but then he said terran had two problems the tubes falling apart but when he went to close terran he noticed salivia in the back of terrans throat terrans esophagus had broken apart and he had to call in another surgeon dr tzakis was busy so he could not preform the surgery so anohter had to be called in to rebuild terrans esophagus.   Selvaggi told me that for the next 9 days terran would save from the graft falling apart again but at 9 to 14 days it could happen again and promised me they would take every precaution to prevent it. 
Wedesday sept 13, 2:30 am

after what was supposed to be a 2 hour surgery turned in to 6 and in a way it was blessed that terran did have the infection and they had to go in because they found two problems one potentially deadly problem

1st problem his jtube the limb of the jtube had come apart and died it was leaking in to his abdomen as well as his gtube had also come loose so both had to be removed so terran no longer has any tubes for feeds

2nd and most dangerous problem. when they were immobilizing terran's stomach Selvaggi looked behind his stomach and noticed saliva terran had a potentially deadly leak of his anastomosis this caused a more experienced surgeon to be called in to help dr selvaggi fix his throat Dr tzakis was in surgery himself so another was brought in to fix the anastomosis

its going to be a rough few days Dr Selvaggi said terran has a 50/50 chance of making it as of right now he is back on the vent they will try again to extubate him in the am but want him quiet for the night

he will not be able to have a feeding tube for a while the tubes he has in his nose will have to remain for several weeks he does have a feeding tube in his nose that goes to his jejeum for future feeds but will not be able to have a gtube or jtube placed for quite a while Selvaggi said that maybe terran will be able to eat enough I pray that happens.

Kim and family
 
Wedesday Sept 13, 2006  10 am terran is still on the vent still stuggling to breath he is very weak the wound is wide open now and cant be closed due to infections he has three drains on his side where the gtube and jtube were. 

Sept 14 2006

long day terran is doing better today while he ran a low grade fever and selvaggi said if it goes up he will have to take terran back to surgery to wash out his abdomen again thankfully he only ran it a short time today and was fine the rest of the day. He was extubated late tonight at last he was so happy to get it out Dr Macky was there and terran called him over Dr M leaning close to hear what terran had to say and in a small whisper terran asked "dr macky can i go on pass to target" what a kid the whole team broke up and said "yep he's better barely of the vent and already wanting to go on pass" my son is so special in so many ways while he is in alot of pain and pretty quiet we are hoping its the versed they are weaning him from thats making him so cranky. Today he got two more packages and 5 cards each day i bring them to the icu his shelves in his room is full of boxes of presents from his friends he tells every one of his friends who send him presents he loves telling them (ok he points and i explain since his voice is very weak from being vented so much in the last ten days) HIs bed is full of power rangers (he even finaly got a pink ranger from one of his friends on the internet pink is his favorite because other then red) so keep praying things are looking up.

much love to those who call write and email and send terran cards and letters he looks forward each and every one and i am so appreciative of all the love the world has put on my small son. I can never thank every one enough for all that has been done for my son.

Kim and family
 
KIM AND TERRAN Sunday Sept 17, 2006 11:30 am

Well sorry for not posting been a long few days. Terran for the most part doing well will having problems with fevers which we expected since he his wound culture came back postive for 3 nasty bugs. He is finaly off the vent but last night started to have alot of problems with oxygen sats this am we found out that his left lung has collasped and his right lung is threatening to follow suit. SO today we are being very agressive with cpt and oxygen and generous Alberol and pulmacort. They put terran on a Morphine PCA pump to better control his pain which has been a problem in getting terran to move more and with is huge incision that makes it even more difficult to move or be moved this should help alot now that terran will be allowed to control his morphine doseage.

We are very pleased with terrans care here in jackson lately the ICU and transplant team have been on top of every little bump we could encounter. I am so sad today because terrans daddy has to go home today and return to work he is so upset he does not want to leave terran right now he is over with terran in the icu he was crying so hard i had to leave. Its been wonderful having the whole family here (well cephas and dennis) but we have bills that need paying and that takes work on dennis part so we can have a home to go to when terran is fianly well enough to come home. He will be coming only on the weekends now so at least we are lucky in that aspect that we had transplant here in miami at least dennis and cephas can come down in pittsuburg that would have been impossible

Yesterday we got some more packages for terran as well as several cards one from Mason Dixon and Pat Crawford from Q105 in the tampa baby area Mason has an foundation called Mason Dixon's christmas wish fund inc. The Card had a check in it to help with day to day living expenses not covered by terrans transplant fund. I can not state how much we are apprciate all the cards letters money and such that have been blessed on our family we would not have made it this time if not for the generous support of people like all who have donated to terrans transplant fund and to our family. We are truly blessed by god and feel his presence all around us.

In christian love and support thank you for all who read these words and find it in their heart to fall in love with this awsome child who we call Terran
Kim and terran
 
Thursday sept 21, 2006
 
they added a morphine pca pump a few days again and what a difference its made in terrans being more mobile and more comfortable he is asking to go walking so we walked the floor at first then advanced to going up to tp floor for a visit he looks great i am so proud of him he visited the little awad girl who was down the hall from him she was so cute her parents are here for two little girls who need tranplant one got hers already.  terran sat most of the day with me playing uno with me beating the pants off him but he won a few games  we spent the last few days watching videos of family guy and playing games,  his blood pressure is still too high and he is still requireing meds to help that but is getting better the wound is not nearly as leaky
 
Friday Sept 22,  8 am
 
 
 

Well they say a picture is worth a thousand words I let this picture tell his story of a boy with such courage and such gumption that after a mear two weeks post transplant plus major sugery 8 days ago today my son walked on his own out of ICU while he is still a patient in icu its only because they dont have room for him on transplant floor maybe tomorrow this took such effort on terrans part seeing his incison is still open and only covered by a bandage and now an abdominal binder to help as well terran is well on his way to recovery



and the best part yet i bet your on pins and needles about my next set of news well you ready "TERRAN GOT TO EAT ICE CHIPS TODAY " YEP THATS RIGHT LADIES AND GENTLEMEN WE ARE ONE STEP CLOSER TO THAT GOAL OF LOBSTER DINNER WAHHHHHHHHHH HOOOOOOOOOOOO

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Friday Sept 22 7 pm
 When i came in this am terran looked good and i began to help his nurse do a dressing change get terran up and cleaned up dr mackey came in as usual to help change his dressing when he removed terrans dressing i noticed that the small hole terran had developed a few days before just below his navel was now a huge gapping hole the incsions had come apart i showed makey but as usual he did not seemed concerned even though his nurse and i were.  Dr kato had told him to remove a drain the day before which he had done kato had rounded earilier but did not look at terrans wound and did not know of this new complication.  Now becuase of this i did not want another drain to be removed dr selvaggi told me until tuesday terran was at greatest risk of his graft coming apart dr mackey did want terran to stay in icu over the weekend which i was for once in agreement with but kato wanted terran moved he could not go to the step down unit because of his latex allergy had gotten so much worst and the unit was very small and over crowded.   The nurse that afternoon told me they needed terrans bed the floor had called that one of the awad babies had a fever and her parents were wanting her in icu they wanted his bed bad but i worried at having him on the floor.  I went upstairs to talk to bertha the head nurse that night making sure she knew of the wound had developed over night she assured me that she would make sure kato would look at it and mackey wanted me to be sure to tell them it was me who refused the drain to be pulled so he would not get in to more trouble because of terran.  

saturday oct 23, 9 am 

Dennis got here late last night i was unable to stay with terran due to there was no where for me to sleep with so many tubes it was impossible to lay with him in his bed like we were used to so i had to go back to transplant house to sleep i arrived early as usual he was up and ready to go ready for a pass he wanted to go out side to breath the fresh air he said while i was hestiant to let him go dr keo folded and let him out on pass from 12:00 pm to 3:oo pm we bundled him up and went over to translant house for some much needed family time
 
 I held him in my arms safe with his daddy and brother at his side safe in our little room far from our home at last to lay near him to be with him all alone no medical equipment just us we were with him for three hours alone playing video games or just watching a video making plans for the upcoming week tues he would get to eat again he was so excited to get to eat he asked me Mommie did you get my soup terran hated the soup they had at the hospital he wanted to be sure i had gone to the store and gotten him his favorite soup for tuesday of course i had as well as his popsicles and his ever so sought for first soft meal he would get a few days after he tollerated liquids. He wanted his chicken nuggets then for his first full meal pizza. we did not want to go back to the hospital we just wanted to sit there and be a family but time did not stand still we had to go back. We took him back his daddy and him planned a video day terran wanted a new toy so i traveled with cephas and a new mom we had met Karen's child was in transplant that day she all alone far from her home. She asked terran his advice her child just a babe he told her "when she can wiggle her toes you will know she needs you to hold her hand cause she can hear you but cant open her eyes'

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We left after we took him back me to go shopping for him I got him his video game he had wanted he waited so long for a ps2 daddy had finally gotten off lay away terran was to get it the next day he was so excited to have this we got back to the hospital about 2 hours later daddy left to go eat dinner i stayed with terran we snuggled and watched cartoons he missed them as they did not have tv in the ICU we watched tv for a few hours till daddy came back terran had a great idea daddy spend the night with him so they could watch videos mommie take the night off we stayed while i thought it over it was hard for me to leave him on the floor i did not trust the night nurses on ptsu to care for him properly but he seemed ok and wanted it so so about 12 am cephas and I went to transplant house before that we sat with terran joking and making funny noise terran was so happy and content hardly pressing the button for his morphone I thought it ok to leave him i kissed him on his head and tucked in him tight terran never could sleep with out a kiss and hug from mommie and of course a tuck in

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When I left his eyes were already becoming droopy his daddy had drifted off as well in the bed next to terran so i kissed him lightly on his head kissing daddy as well cephas and I left to sleep as well.





This is how i saw terran that last time safe and sound in his bed all snug and warm mason in his arms his blanket and pillow comforting him

 

the next time i saw terran his eyes were full of fright dennis had called me around 4 am he said "somethings not right' i rushed to his side he seemed small and afraid as i held his hand things got insane a short time later everything that could go wrong did every mistake that could be made was and terran was ripped from my arms at 6:55 am my world fell apart.

When i arrived on the floor a little after 4 am in the hallway down from terrans room i saw a resident i knew from the icu he was on his cell phone i rushed past him into terrans I sat down next to him his eyes were scared he grabbed my hand i hugged him and told him its ok mommies here.  he was pale and sweaty i took off the blanket and saw the blood beneath terran he was upset at learning he was going back to the icu he wanted so much for one of us to be by him and knew if he went back he we couldnt.  I left terran to find his nurse i found her at the sink in the hallway washing her hands she was upset that the night before terran would not let them change his dressing and wanted me to speak to him about being more coopertive i told her i knew of her concerns but wanted to know whats going on "well she said terrans had a little bleed not to worry though they were going to take him to icu just to be safe.  the doctor from the icu came up to me and told me terran had a bleed he was unsure of where but would need surgery to fix it and he was trying to get terran to icu he did not feel it was bad though did not think terran had lost enough to drop his crit in his words.   i went back to terran who was scared i lifted the blanket the doctor was back in the room i asked him where the blood was coming from to me it seemed it was from one of the drains he would not touch terran saying it was a surgical issue and would not take the bandage off i removed the bandage and showed him it was not a huge bleed but you could see that the bottom drain had come loose and there was blood pumping from around it.  He left to call the surgeon and find out hwo long till they could get up here.  the nurse came in finally and started iv fluids by pump saying they were replacing some fluids lost.  I remembered in earlier in the day speaking to keo about terrans bun being 56 and swelling on terrans wrist i asked her what happened she did not get it in report about terrans bun being high and did nto know if the kidney doctors came in.  they had done a biopsy on his arm though but did not know yet.   She left i sat by terrans side almost an hour went by before i saw dr kato come in Just before he did the resident said they were going to give terran blood the charge nurse was in the room at the time and told the resident they had ordered blood but there was only two units in the bank and they could only get one for terran she left and dr kato came in a short time later the charge nurse came back in her and lucy terrans nurse that night checked over the blood for what ever and set it up on the pump dr kato told them to turn on both fluids and blood to full not to use the pump but she said the pump would be faster, they had to redo the tubing since they had no latex free tubing on the floor for blood products  dr kato asked for a monitor the resident and him were talking about if terran needed icu or straight to surgery.  It was then after they finally got the blood started by pump mind you. i noticed terran was having trouble breathing he was consious and begging keo who had come in at this time and was at his side to help him keo placed his hand on terrans head and told him its going to be ok.   dr kato again told the nurses to put the fluids and blood on full but they said the tubing was wrong for that he asked for a 60 cc srynge and asked what was terrans largest acccess site terran had three sites on his femoral line but i knew they were too small and terran kept putting his leg up becuase his tummy hurt in doing so that cut off the line due to where it was placed.  i told dr kato the larges site was terrans central line in his chest

 

dr kato hooked up the line to terrans chest line at this time the only people in the room was dr kato myself my husband and the resident from icu that had been on the floor when i got there and dr keo i noticed terran was having breathing he seemed to be struggling for breath i told dr kato who told the nurse to give terran some oxygen but there was no latex free tubing so she had to go get some.  I reached up to the oxygen where terran had his tubing from his earlier breathing treatment i turned up the oxygen to 10 and placed it on terrans face he seemed a little bit better dr kato had manged to get in a pint of blood using the srynge and took his blood pressure which was looking better he said.  the resident asked if they were going to transport terran intubated or not dr kato responded to intubate terran the resident went to the head of terrans bed which was raised to an angle like always and tried to intubate him the crash cart was brought in to the room the resident took an itubation kit from the cart and tried to intubate terran he was unable to get the tube in terran he said terrans throat had closed off and asked the icu nurse who had now arrived to go get some "rock"  a med they used to paralize patients. 

Dr kato asked for a monitor the nurse returned with a pulse ox machine he asked for someone to get a him a proper monitor someone left to go to the icu and get one of their monitors which was placed at terrans feet. terran was no longer consious at this point they were breathing for him after the monior was placed on terran keo climbed on terrans bed side and started to do cpr kato said we need more blood two more units were started kato the whole time pushing in by srynge 60 cc at at time.  Keo had started cpr by this time i could see him on terrans bedside both hands pushing as hard as he could the resident told him to be easy kato said to be careful terrans graft could come apart pushing to hard the resident kept telling keo he was going to fast and tried to instruct him on how to do it keo did not listen he kept pushing harder and harder both hands on terrans chest.  the surgery team got there finally dr kato told them they were taking terran to sugery not icu and he needed the keys to the elevator so they could take them down but no one knew where those keys were suddenly the anastelogist from the surgeyr unit comes up keo hands me a surgery consent form to sign next thing i know the anastelogist goes over and looks in terrans eyes he says "one eye is fixed one is is not"  iknew then my son would not be leaving that room i knew then what the next words out of dr canters mouth would be as she approached terrans bedside and looked him over looked at the monitor all the time kato is pushing the blood 60 cc by 60 cc as hard as he could to nurses come in with more blood and hooked them up to terrans femoral line and squeezed them in but then they lifed terrans legs  then laid them back again looking at the monitor dr kato looked up at me dr canter had come in front of my husband and myself and told us terran was gone he has no heartbeat and did i want to say goodbye i yell for kato to fix this i looked past her and looked him straight in the eye and yelled fix him damn it fix him dont let him die the anastelogist again looked in terrans eyes and said his eyes are fixed and dilated i looked at the clock it was 6:50 am dr canter told me to go to terran and say goodbye

 

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I went to terrans side of the bed dr kato let loose of the srynge and came over to my side of the bed and gave me a hug and told me how sorry he was that he lost terran.  I knew he meant it but at the time i was crazy all i could think was my baby by baby cant be dead they are wrong i went to terran and kissed his face over and over  the tears flowing from my face i screamed at him to come back to mommie please come back i couldnto take it anymore and ran from the room to the stairs sat down and called lisa morgan my cms nurse i had to tell some one but she did not answer her cell phone i left her a message telling her i did not want to live anymore and intended to jump from teh nearest building i could find.  but dr canter came by me and while i dont rember what she said i remember cephas was all alone in transplant house and  I needed to go to him and tell him i dont remember much of my run to the house but i screamed at cephas terrans dead terrans dead and threw myself on the bed my heart hurt so much at that moment all i could think was cephas had to see his brother. 
 
When we returned terran was alone with dennis in the room he had been cleaned up the iv pole and other equipment had been removed from the room and was in the hallway his blanket was up to his neck and his beads from his iv pole and around his room were now placed around him he looked so peaceful so quiet i wanted to yank him up and take him home I kissed him over and over again and went the nurses station to demand i be let take terran home i did not want him placed in some morgue dr kato said what ever i wanted just let him know i told him i wanted to take terran home i wanted to take terran home i wanted i needed to hold terran but his nurse told me no that she did not think it wise that terrans death was too bloody for me to hold him. .  Selvaggi arrived a short time later

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I ran when i saw him i demanded to know why he was not there when terran needed him i knew i just knew if he had things would have been different he held me and let me cry and took me back to terrans room i asked again please let me hold him i had not held him since his transplant and i needed to hold him again the nurse said no but selvaggi did not listen and placed terran in my arms.  I sat there for a long time holding him crying  people kept asking us what arrangments we had made for terran i had spoke to terran a few months earielr and had done quite a bit of reaserach on the subject i wanted to take terran to a sancuary for a green funeral but they would not relise terran to us the monsters would not let me take terran home.
 
Again i reached out calling josh at the funeral consumers alliance whom i had met many months before online but it was sunday and all i could do is leave a message the hosptial kept telling me we had to chose dennis knew of only one funeral home in our areas name and gave it to the social worker.  I called dr Reinstein shortly after terran died he called me back being jewish i knew he would understand my requests but he did not know who to make my wishes come true.  i gave terran to dennis to hold him and cephas sat with terran while i went downstairs for a break tabby and dwayne called and said htey had called trinity

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Now it got nuts and again confusing next thing i know a man shows up with a stretcher and informs me he's here to pick up my son.  what who the hell are you i asked he said he was from a local funeral home and was told to pick up terran he had the awful body shroud i hated my baby was not going to no where with out his mommie damn well not until his sisters got there and hey were just hitting miami
 
how could they do this to me it was a nightmare unfolding they spoke to dennis who told me if i agreed to let them take terran they promised to have him in tampa by that night.  I could not let go of him i couldnt let him go damn everything was going wrong I told them i wanted him wrapped in his blanket not a horrible shoud i placed terrans favorite blanket on him and placed his bigger quilt on the strecher dennis placed him on the strecher we wrapped him in his blankets kissed his face and followed him in to the hallway i begged to be allowed to go with him please i begged but i was told that was not allowed.  A strange man was sitting out side terrans room i found out later he was from the morgue and informed me that if i did not let terran go he would take terran to the morgue and place him in the refridgerator he lied and said it was the law that a body had to be refridgerated or embalmed in 6 hours terran had died at 7 am it was 1 pm i knew the law but i was ignored htey held my baby hostage and ripped him from my arms at the moment he left the floor i crumbled. 

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I thought terran dying was horrible but this was just as bad they were treating him like a thing not my child to them he was an incovience i cried so hard it was hard to let him go but i knew if i did i owuld see him in the morning we  quckly gathered terrans things and left my arms ached so badly for terran i had asked where they were taking him so i could see him before we left miami but in my rush and my grief i left the paper on the bed we went over to the transplant house my children had gotten there by now it had trickled to everyone that terran had died no one knew the exact details but everyone was shocked at hearing the details of terrans death except an old woman in transplant house whose name everyone calls "grandma"  shes a sweet old lady but her words that day upon hearing terran died stung like a knife in my heart no she was not shocked at hearing terran died she said "he was never yours he was gods and god took him home'  i hated her at that moment i hated her with every fiber in my body. 

We got terran home on tueday to tampa bay on wedesday has brought to our home and placed in his bed. For two days I was with his body i was at peace people from all over came to see my baby to hear of his stuggle and for two more days I too was special. We laid him to rest on friday his doctors from the tampa baby area dr Reinstein, Dr hassel, Dr Pope came by no one from the miami program even called to say how sorry they were. We opened the program to those in the audience to give tribute to terran even Dr Reinstein stood up to speak of my son and showed just how much he really cared for terran His nurse Lisa Morgan nurses who had cared for him over hte many years even some mommies i had met Susan Drennan and her husband and son attended her son has hirschsprung's disease like terran. Ryans mommie came even though she herself knew one day she too may walk in my shoes. The cermony was beautiful terran would have loved it Each person who attended did so because how his or her life had been touched by this awsome child. We laid him to rest among strangers no loved ones next to him someday i will lie next to him again, Even a few kids in his karate class attended now knowing this shy kid had more courage then any one they had ever known, His teachers came to see him at home as well as his funeral his sensa marty presented him with a honorary black belt and a certificate of honor for terrans courage over coming all odds. Some special moms who lost angels like me came by jennifer and amanada came by how brave of them even in grief we reach out to each other. But the ones who are responsible for terrans death they continue on.

Now a month has passed since he died and its like life never stops dennis went back to work, cephas to school the girls back to their lifes. Dr Reinstein continues to take care of the kids in st petersburg, the nurses keep close vigil over the kids in All children's. Lisa still takes care of those in her care as well. Debbie cares for ryan

The doctors and nurses at the transplant program still go one doing transplant after transplant still understaffed and over crowded floor still doctors and residents say those words "we just dont know" Still no monitors or a good