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