Make a donation to his transplant trust fund at: o The Terran Robinstein Famly Trust fund C/o Bank of America 7419 State road 52 Bayonet Point Fl 34667 Hello! .

Terran needs a new transplant

Article in St Petersburg times pasco edition Aug 9th 2006

terran goes to miami via all childrens intensive care van

Well we finally got to Miami not to easy a chore and unfortunate he's running a fever again so he cant have surgery tonight as they wanted to relieve a bowel obstruction (both bottom and jtube is obstructed)

terran will have the surgery first thing in the morning aug 3 2006 exploratory to find out if this bowel can be saved, to see if they can relieve the obstructions possible ostomy possible bowel loss possible graft loss too much to really understand right now but at least he's not hurting



after this we will know how desperate the search will be for a new bowel

Terran waits and the world prays for my little boy

am so sorry to have to write this today terran had surgery the surgeon just came out and told me the devistating news that theres nothing we can do to save this bowel essentialy terrans internal organs are just a mass his intestines have no motilty at all while they were hoping to find the obstruction they were not able to simply remove a section and hook him back since the obstruction really envolves the entire graft. While they left the graft in terran is now listed as status 1 on the national transplant list again but this time its more urgent Dr Kato says terran does not have much time and said that he is putting an urgent plea for terran he is hopeful we can get him retransplanted in a very short time (god willing but it kills me to think of another parent some where going through all this and still having the courage to donate their childs organs) He will still be in surgery for several hours because they think there is a slm chance that the reason this graft failed is maybe a tumor developed in his intestines that they could not see its slim chance but while he's out they are doing a lot of tests like a ct scan and angiogram to check his remaining blood supply to the bowel (to see if we can leave the graft in while he waits) Please keep him and me (Please) for strength duing this bad day and when he wakes up he will not be too happy to hear the news. that we will not be allowed go even go home to wait Oh and brande yes this time he needs a liver due to it has grown in to his intestines and they think they can separate it. he is also going to be heartbroken see his birthday is the 16th and we had planed on a huge party in orlando with his beloved power rangers in our family 10 is a huge year (omg i just thought of it his original donor was 10) got to run please keep us in prayer i will post more when i can but the next few days are going to be very bumpy

Update Aug 6th

Terran is finaly out of surgery they were unable to anything all they did was close him up which means he
is still obstructed and will not be allowed to eat or get tube feeds please keep him in prayer as well as a dear family who lost their son last night his name was carter aka Carterman my prayers are with them tonight as they grieve the loss of their child.

Please pray that where ever terrans potentional donors family is they too will recieve comfort in thier hour of need.
FOr those wishing to send terran birthday cards he can get them at the hosptial as of aug 11, 2006 he will be sent back to all childrens in st petersburg fl I wil post the address as soon as i Get a room number
thank you for all your prayers we apprecate them so much right now

Aug 8th 2006
wow what should be easy turns in to a nightmare from hell seems our insurance company will pay for transplant even give me 10 thousand dollars as travel expenses and lodging food expenses but not here in Miami they unofficially listed terran Friday but Monday my insurance company called said that as soon as terran is stable he must be moved to Pittsburgh seems we can go anywhere for evaluation but only Pittsburgh, new York, Georgetown, and Nebraska for the actually transplant to be covered but if we do that Florida medicaid wont pay any of the bills out of the state of Florida my goodness a night mare begins terran has been cleared medically, me psycho social has passed but cannot be listed due to no financial clearance and time is of the essence hum sounds like a movie of the week insurance company holds child hostage for money
but a bit of good news at least they finally got the right antibiotics and his fevers are now gone and he is acting less septic I just wish they could have put an ostomy in but his bowel is too damaged to even consider it they said here he will be transferred back to all childrens in st pete maybe Friday to await transplant since they dont have room on the floor to keep children awaiting transplant i guess and no way i can take him home with so many iv's running anyhow thought i post a bit of good news and a bit of bad news mixed blessings I call them
Kim and terran

Aug 8th 2006

well the insurance says they will pay for his transplant here in miami at the out of network rate now its thier court if they will list terran or not I am praying but know in my heart god will do what he thinks is best for my son

Mean while a reporter from the St petersburg times and the whole staff matter fact have been so supportive during our stay here this time they sent a photographer here to take pictures of terran thank god he was feeling better

we are hoping things start moving tommorrow either miami caves and lists terran at atnnas terms or i guess we have to go to pittsburg for a new evaluation it never ends

but terran is doing so well today I have to pinch myself and remind myself how sick he is because thanks to tpn, fluids, and lots of other stuff he looks and sounds like my little boy i missed so much.

Kim and terran

Aug 10, 2006 what a day at long last the veil has been lifted the dark clouds parted and I CAN SEE THE LIGHT THANK GOD I CAN SEE THE LIGHT.

thanks to an article run in the st petersburg times all day long i have gotten emails and phone calls from people praying and offering help and support Its so wonderful terrans feeling better tomorrow we go home to All Childrens to make futher decsions regarding where terran will be listed for transplant. For once the tears i shed today were tears of joy and relief.

so tommorrow terran will travel via ambulance to all childrens in st petersbug back to the care of our beloved dr reinstein and the caring staff of ach. Keep safe thank you so much for all the calls and emails I REALLY DO APPRECIATE IT

kim and terran (safely tucked in bed and thankfuly asleep)

Aug 12

got to see dr reinstein this am who set the world right again thank god after speaking to him we have decided to take terran to pittsburg since its covered by insurance and see what our options are in that aspect. Dr Reinstein was very sweet in explaining terrans current condtion makeing me feel more comforable in caring for him at this moment

We had visitors two very sweet people who came today to see terran Mr Roger and Mrs Kathi Ellot they were so sweet over the last few days we have been exchanging emails they are friends of local dj mason Dixon of Q105 here in tampa bay (what a weird thing i listen to him all the time) any how they are helping us raise some much needed funds for terrans transplant fund as well as mr dixon will be making terrans transplant fund information available on his raido show on monday. BUt terrans favorite part was the brand new portable dvd player they got for him what a treat for terran as his beloved power ranger one has been broken for some time due to a nurse dropping it off a table they also brought him two movies one of terrans favorite snow dogs and cool runnings. I had the pleasure of sitting down with these wonderful people and talking about my favorite subject who else terran. Terran and I rarely get visitors other then family it was such a treat for both of us. at least now terran will not be bored on his trip to pittsburg . Lets hope for a quiet few days

ta ta for now Kim and terran

Aug 15 2006

Well tomorrow my son will be a decade old never thought i would see this day and you would think i would be happy in just that but alas i am a selfish mom i want more and more i want 15 20 years is that too much to ask

healthwise he's doing much better under dr reinsteins careful watch. The wheels are turning slowly for taking terran to pittsburg for a new evaluation while the insurance company (mary anne deserves alot of credit for this ) has cleared us for the evaluationa and even will pay for it now we hit a new glitch Pittsburg wants records and such before they will agree to us even bringing him (this is so frustrating) any i sent them all the records i had and those were alot as well as his nurse here at ach today was so helpful in getting me records from the computer to fax in the am. And while i sit here and watch him play i wonder tpn has given his cheeks color now his energy is back now to tpn his tummy is less distended thank to good suction and iv fluids and such so he looks better so I wonder how long can he go like this.

TEAM JET ICU TAKE TERRAN TO

PITTSBURG FOR TRANSPLANT EVALUATION AUG 21 2006

Aug 4 2006 Terran needs to be relisted to UNOS for transplant as his bowel has failed please keep him prayer it is critical that we find organs for terran very soon



Aug 24 2006 Terran is listed in pittsburg as staus 1 while he looks and is ok right now it is essential we find a suitable donor in time.





We are seeking a way to bring terran to Pittsburg or Miami should a donor become available we will need to find a way to be back at the center within 6 hours it will be anytime day or night we could get a call to come to the center PLEASE IF YOU KNOW OF ANY ONE WHO CAN HELP IN THE WE WOULD BE MOST GRATEFUL At this moment he is now back in all childrens but if i am ever to take him home this is one hurdle i must over come how to get him back to pittsburg in 6 hours from the time of the call. PLus some times they call patients and the donor fails or some other unforseen happens and the transplant falls though so this person who helps us must be understanding of this as well

Aug 30-31 2006 Almost transplant day



wow a long night and equaly long day yesterday after noon terran got a call from miami transplant that they had organs available for him and can we come sure off we set terran was inpatient at all childrens and with our friend hurricain Ernesto off the coast of florida we could not fly him down but had to take a ambulance at 7:30 pm he was picked up by ACH intensive care ambulance and driven to miami what a ride thanks to keen driving and excellent care of terran in the back we made it here by 11:30 pm safely tucked in to room ptsu 6063 terran began undergoing tests to make sure he was strong enough to get the organs offered mean while the donor (whom is very dear as is his family.) was on the table terran underwent EKG, Chest xray and numeous blood work finaly at 2:30am he was allowed to get some rest till he was called for surgery but at 5 am they came and told us there was a problem with donor liver so tranplant was cancelled we were heartbroken but at peace we prayed for the donor family who tired to give terran the gift of life but could not we pray they have the strength to endure the next few days and months in thier grief i feel their pain they tried to make thier childs death mean something and maybe some one else got their much needed organs just because terran could not (he needs a liver to much to risk only a part of the graft) i pray if this happened their families too have strength. In my prayers each night I pray a donor is found for terran and when that special donor is found we know god will be with terran when i can not.



much love have to stay here in miami this weekend terran started to run a fever early this am they think its an infection of his liver so he has to take some strong antibitics and if all goes well he will either get transplant this weekend and if not go back to all childrens maybe monday

have a wonderful weekend look for us in the sky

kim and terran