Medical Updates
2001
7/20/01-8/13/01 Boston
Childrens leave on 27calorie breastmilk
Sept 2001 (2mos)
9/4/01 1st Kidney
Ultrasound at CT Children’s Med Center (CCMC)
9/10/01 Inconclusive
Sweat test (on 27 calorie Enfamil now)
9/19/01 2mo pediatrican
visit 4 shots, he can urinate!
9/21/01-9/23/01 Fever-virus-
blood/urine/spinal cultures negative
(told us not a reaction
to shots)
Oct 2001 (3mos)
10/8/01- 10/09/01
DMSA Scan
10/11/01 8lbs 11oz
Start Epogen 3x/wk Nephrologist visit
10/15/01 hemocrit
test Epogen shot given, learned to give shots
10/18/01 9lbs 6oz
wt chk
10/23/01 Diarrhea
Starts (30 calorie similac)
10/29/01 9lbs 6oz
for 1 wk w/Diarrhea
10/31/01 9lbs 11oz
wt chk
Nov 2001 (4mos)
11/5/01- 11/06/01
Bilateral Inguinal/Hydrocele Surgery 9lbs 7oz
11/13/01 9lbs 13oz
21 ¾” Nephrologist visit, might need g-tube?
11/21/01 Start 30
calorie w/oil
11/27/01 10lbs 6oz
22” pediatrician 4mos check up/4 shots
11/28/01-11/29/01
fever from shots
11/30/01 10lbs 8oz
22 ¼” Nutritionist visit
Dec 2001 (5mos)
12/7/01 10lbs 14oz
(asked pediatrician about poss GI reflux-told no too old)
12/8-12/12 dehydrated/throwing
up-gave 20 calorie)
12/13/01 10lbs 14oz 2nd Kidney Ultrasound & Nephrologist visit, Epogen lowered to 2x/wk per Dr
12/14/01 back on
30 calorie, feet in mouth
12/20/01 successful
Sweat Test
12/21/01 Negative
Sweat Test Result Yey!
12/27/01 11lbs 3.5
oz 23” 42 ½” head
2002
Jan 2002 (6mos)
1/3/02 103 degree
fever
1/4/02 dehydrated/throwing
up-virus-fever broke in morning
1/5/02-1/7/02 on
way back still throwing up,eating 2-4ozs a feeding
1/8/02 Birth to 3
assessment-on track for 5 1/2mo old, rolled tummy to back
1/11/02 11lbs 12oz
Diarrhea starts Similac 30 calorie,bactrim started again
1/14/02 first cereal
1/23/02 heavy mucus
& throwing up
1/24/02 12lbs 13oz
wt chk blood tests Bactrim stopped myself vomiting it up
1/25/02 12lbs 8oz 25” 43cm head-pediatrician 6mos check up/4shots 1.5 creatinine
1/28/02 12lbs 3oz
24 ½” 43cm head nephrologist visit 84/50 bp,kept bicitra @ 9.6ml/day
(explained diarrhea,changed
to Enfamil,ok to give more water to dilute bicitra)
1/29/02 enfamil-throw
up no diarrhea,heavy mucus, gagging
Feb 2002 (7mos)
2/1/02 ate first
solids-stage 1 applesauce
2/8/02 12lbs 3oz
Zantac started .3ml 3x/day,thinner mucus noticed
2/9/02 fever starts-throwing
up alot
2/12/02 12lbs 1oz
possible ear infection-Amoxil started
2/13/02 admitted
for RSV/bronciolitis/dehydration (no ear infection) sat up himself first time!!
2/16/02 stopped captopril
per nephrologist BP normal for age
2/18/02 discharged
11lbs 4oz back on Bactrim, Epogen lowered to 1x/wk per nephrologist
2/26/02 12lbs 6oz
24 ¾” 43 ½”cm nephrologist visit
2/28/02 barium swallow
confirmed GERD! HA!
Mar 2002 (8mos)
3/5/02 12lbs 11oz
wt chk doing raspberry noises
3/12/02 12lbs 15oz
wt chk, rt kidney urinating a lot more?
3/18/02 throwing
up dehydrated
3/19/02 13lbs 3oz
wt chk Erythromycin started for stomach motility
3/21/02 fever 103
3/22/02 fever 104
13lbs 2oz ER visit UTI-e-coli infection Augmentin started for 10days
3/26/02 13lb 4oz
wt chk
3/28/02 13lb 5oz 24 ¾” gastroenterologist visit-confirm g-tube needed for FTT/blood test done
Apr 2002 (9mos)
13lb 10.5oz 24 ¾”
43 ½ cm nephrologist creatinine 1.8 36 hemocrit 86/50 bp slight hyperphosphatemia
might change formula
4/8/02 13lbs 6oz
25” 441/2” head PEG G-tube implanted,1.7cm 16fr
4/9/02 discharged,
Bactrim restarted
4/11/02 rt kidney
urinating less, like before March UTI
4/16/02-4/18/02 hot
weather throwing up more than usual, screaming, hard to settle down
4/19/02 14lbs 1oz 25” 76/56 bp gastroenterologist followup screaming when abdomen touched
dehydrated, blood
tests done creatinine 2.0! 3rd Renal ultrasound done, no change from previous, no hydronephrosis, 1 cyst still present on
left kidney
4/20/02 first tooth
on bottom!!
4/24/02 prilosec
compounded in bicitra started .3ml 1x/day,still on bicitra 9.6ml/day erythromycin 1ml 3x/day & bactrim .5ml 1x/day, remains
hard to settle, agitated, screamy (tried prevacid-too much of a nightmare w/g-tube!)
May 2002 (10mos)
5/1/02 15lbs 1 oz
25” 45cm pediatrican 9mo visit hep b shot given per DR ok to stop erythromycin to see if stops screaming, I stopped
bactrim as well, making him too alkaline, 2 antibiotics fighting for same receptors per pharmacist, phosphorus high, magnesium
on high side, changed formula
5/3/02 no more screaming,
alot less agitated
5/7/02 15lbs 12oz
wt chk PM 60/40 on order
5/13/02 15lbs 8oz
25” 45 ¼” 1.9 creatinine hyperphospatemia, ferrous sulfate incr to 1.5ml/day
5/14/02 start Reglan
(prescribed .5ml 3x/day –give .3ml 2-3x/day due to side effects noticed-clicking tongue?)
5/15/02 PM 60/40
30 calorie recipe started
5/19/02 2nd tooth
on bottom!!
5/31/02 16lbs 15oz
wt chk
June 2002 (11mos)
6/14/02 Blood tests
for next appt
6/18/02 Neph appt
18lbs 1oz 26 ½” 46cm 1.5 creatinine 91/60 bp 38 hemocrit,per Dr ok to stop Epogen???, will stop when current vial is
used up (3wks); saw nephrolgist & gastroenterologist (2 for 1)
6/20/02 top 2 front
teeth (ouch!)
July 2002 (12mos-1yr!!)
7/4/02-07/06/02 Fever
& “just a virus”
7/22/02 CCMC Neph
& gastro appts
7/30/02 CCMC ER due
to UTI & fever
Aug 2002 (13mos)
8/1/02 Boston Uro
appt-1yr since ureterostomy surgery, planning for more surgery later in year
Sept 2002 (14mos)
9/12/02 PEG gtube
switched out to Mic-Key Button tube 1.7cm 16fr
Oct 2002 (15mos)
10/3/02 CCMC Neph
appt
10/17/02 Boston
uro appt
10/22/02 CCMC Gastro
appt
Nov 2002 (16mos)
Dec 2002 (17mos)
12/02/02 Surgery
to close ureterostomies, reinplant ureters bilaterally, remove PUVs 10hrs long
12/03/03 to 12/24/03
hospitalized at CHB, practice eating solids doing well
2003
Jan 2003 (18mos)
01/02/03 Bloodwork CCMC
01/09/03 Boston renal ultrasound and Uro appt-followup-no change in hydronephrosis, urinoma
now appears top of left kidney
01/16/03 Bloodwork CCMC
01/20/03 Repeat bloodwork CCMC-Results are way off-will be
readmitted
later in the week
01/24/03 Readmitted in Boston,Ultrasound done, increased hydronephrosis
bladder function
test done (urodynamics)
01/25/03 Inpatient bloodwork done,Parathyroid level checked for the first time @ 18mos old!!!
High 500 range
01/26/03 24hr urine collection done(measure protein),creatinine clearance 12-13% function assessed
01/27/03
Repeat renal ultrasound
Hydronephrosis noted once again, no real change
01/28/03 Put on the add-on list for neph tube
placement in interventional radiology, in surgery @330pm,Back up to the 8th floor (805d) by 8pm, Bad painful night, couldn't
settle down, bloody urine draining in bag
01/29/03 Still recovering
01/30/03 Discharged from Boston yipee!!! On Carafate
to help his tummy deal with the stress,have been seeing coffee ground blood in G-tube
Feb 2003 (19mos)
02/03/03
Flu shot for both Eric & Stephen @ pedi's
02/04/03 Bloodwork CCMC 1.9Cr
02/11/03 1st Visting nurse for neph tube
change,She has no clue, so we make it up as we go along, CCMC Bloodwork too!
02/13/03 CCMC Neph appt & Bloodwork 1.8
Cr 37 BUN
02/14/03 Therapy (1yr anniversary of RSV hospitalization)
02/18/03 Visiting nurse, noticed the hard connector
part of the neph tube CRACKED! Home hospital won't take us, have to go to Boston, scared about infection
02/19/03 Therapy-pulled
up on the end table to see the fish tank, balanced walking Boston returned my call, they can fit me, drive to Boston with
both kids, waited in day surgery recovery room until they could take
us. Taken as the last case of the day. Home by
9pm.
02/20/03 RSV (synagis shot)
02/28/03 Visiting nurse Dressing change,took Eric off of compounded Prilosec, Doesn't
suffer from Reflux as much anymore, 1yr since dx w/GERD
Mar 2003 (20mos)
03/03/03 RSV shot
03/05/03 Therapy
03/07/03 Bloodwork Boston, Dressing change-used Betadine for the first time-great stuff Cr 1.8 43 BUN 20lbs 27.5cm tall
03/10/03 Therapy
03/14/03 Neph tube dressing change
03/21/03 Neph tube dressing change, CCMC Bloodwork 1.8Cr 45
BUN
03/29/03 Neph tube dressing change
Apr 2003 (21mos)
04/04/03 Last RSV shot
04/07/03 Boston Uro appt
& Bloodwork 1.9 Cr 51 BUN 22lbs w/clothes 30cm tall
04/08/03 1yr anniversary of G-tube placement
04/11/03 Therapy
04/12/03 Pulled to standing in crib for the 1st time,Really getting a lot of teeth now, drooling constantly
04/28/03 Pedi
visit to pre-auth for EEG test because we are seeing tremors
May 2003 (22mos)
05/09/03 EEG
test done @ CCMC-normal results
05/27/03 Boston uro appt & Bloodwork,neph tube replaced, urodynamics done
June 2003 (23mos)
06/06/03 Speech
Therapy consult & CCMC Bloodwork
06/30/03 Neph tube
pulled apart while sleeping yesterday, neph tube replaced in Boston
July 2003 (24mos-2yrs!!)
07/18/03 Pedi visit
due to fever, Trip to CCMC ER for tests-virus!
07/20/03 Happy 2ndBirthday
(with a fever and a sick brother)
07/31/03 CCMC Neph
appt, low hemocrit from fever, upped the Epogen to increase crit for surgery in August
Aug 2003 (25mos)
08/07/03 Pre-OP admission
in afternoon, start bowel cleansing prep with Golytly 900ml before any action!
08/08/03 Right Nephrectomy,left
ureter reinplant, remove urethral scar tissue, create Mitrofanoff (catherizeable stoma in the belly button) using appendix,
augment the bladder using small intestine, Surgery@ 730am first case in, last case out at 130am 08/09/03 went to PICU (16hrs)
08/09/03 to 08/29/03
hospitalized at CHB
08/30/03 G-tube
pulled out replaced it myself
meds are: bicitra,
epogen, bactrim, ditropan, niferex, rolcaltrol
Sept 2003 (26mos)
09/16/03 CCMC bloodwork
and Renal Ultrasound
Oct 2003 (27mos)
10/14/03 Boston Uro
& Neph clinic appt
10/29/03 Htfd Neph
appt testing to qualify for Growth Hormone injections, bone age xray done, shows growth delayed by 9mos
(bone age 18mos instead
of 27mos)
Nov 2003 (28mos)
11/16/03 to 11/17/03
First Febrile Seizure ever lasted 5min, called Ambulance, rode to CCMC ER, Bloodwork low but ok, just a virus!
11/18/03 Orthopedist
consult due to Eric not yet walking at 28mos, recmds AFOs but wants us to brush his feet and hands for 2mos first to see what
happens
11/21/03 CCMC learning
how to inject Growth Hormone
11/25/03 Begin GH
injections 18lbs 80cm
Dec 2003 (29mos)
12/05/03 Eric started
walking in shoes!!! Unaided
12/09/03Boston uro/neph
appt, family meeting to discuss impending transplant, Blood work done for HLA testing
Deb matches 4 out
of 6, Bob matches 3 out of 6 antigens
2004
Jan 2004 (30mos)
01/05/04 Walking
1 month!!
01/20/04 Orthropedist
follow-up appt 26lbs 82.6cm long -since now walking no need to follow-up further Yeh!
01/22/04 Htfd neph
appt same wt & ht 49-50cm head
01/28/04 G-tube pulled
out again-replaced it myself
Feb 2004 (31mos)
02/02/04 Htfd transplant
bloodwork done all 3 of us
02/10/04 Htfd re-do
of same bloodwork-not enough drawn before
02/23/04 Htfd neph
appt 25.5lbs 84cm 2.7 CR 43 BUN
02/24/04 Doing well
eating solids
Mar 2004 (32mos)
03/03/04 Therapy
03/04/04 Early Intervention
Teacher
03/05/04 Walking
3mos!
03/11/04 Early
Intervention Teacher
03/13/04 Therapy
03/18/04 Early Intervention
Teacher
03/20/04 Therapy-evaluation
03/23/04 Eating baby
food & cereal-well once again
03/27/04 Therapy-evaluation
continued
03/30/04 Eating Nilla
wafers & Cheese puffs
Apr 2004 (33mos)
04/01/04 Early Intervention
Teacher eating Broc/Cheese rice!
04/03/04 Therapy-evaluation
results-low end BUT normal for receptive language!! Delayed for gross motor & fine motor, self help skills (toilet) and
expressive language
04/08/04 Early Intervention
Teacher eats a full yogurt
04/14/04 Meet with
Town preschool teachers about upcoming transition
04/19/04 Htfd Neph
appt 3.0CR 53 BUN 87.2cm long? 50cm head, late in day came down with 102 fever, had 2nd febrile seizure at 1123pm lasted 1min
04/20/04 Pedi appt
weighs 25lbs 4oz 5 “startles”
04/21/04 very wobbly
04/22/04 very wobbly
May 2004 (34mos)
05/01/04 Therapy
05/06/04 Early Intervention
Teacher
05/10/04 Dr appt
for Deb pre transplant EKG & exam
05/11/04 Boston uro /neph appt, renal ultrasound
05/13/04 Chest xray
& pulmonary function test for Deb,
Early Intervention
Teacher
05/19/04 Therapy
05/20/04 Early Intervention
Teacher
05/21/04 Pedi appt-Finally
Eric’s 2yr well child checkup 28lbs, 86ish cm long, 51cm head, hemo globin 12.9, urine analysis finds bacteria in urine
(duh-he caths)
05/24/04 Visit preschool
05/25/04 Re-check
urine still has bacteria-will not treat
05/26/04 Eric’s
PPT meeting at home, get acquainted meeting
05/27/04 Early Intervention
Teacher, urine retested again
June 2004 (35mos)
06/02/04 Therapy
06/05/04 Therapy
06/08/04 Htfd Bloodwork
cr 2.8 PTH 124 (yey!) phos 61 (high)
06/09/04 Eric PPT
at preschool
06/10/04 Early Intervention
Teacher
06/11/04 Boston pre-op check up HCT 35 HGB 12.9
06/15/04 Early Intervention
Teacher
06/21/04 24hr urine
collection #1 for Deb, complete bloodwork
06/22/04 Boston Hypospadias
surgery in at 745am out by 1130 ate his first Popsicle, stent clogs late in evening from mucous form augmented bladder
06/23/04 Discharged
cr 2.9 bun 56 hct 37 BP 115/75 Great!
06/26/04 4hr Glucose
tolerance test for Deb
06/28/04 24hr urine
collection #2 for Deb
July 2004 (36mos-3yrs!!)
07/01/04 Boston uro appt stent/catheter removal from surgery
07/10/04-7/12/04
Febrile seizures and "startles" afterwards. Longest seizure 4min 7/12/04 called 911 just in case
Also 7/12/04 Htfd
Neph appt 30lbs, 91.4cm-just a virus
CR 3.1 BUN 63 G-tube pulled out, changed it myself once again-getting good at this
7/15/04 Second EEG
test-Normal results, also met with Feeding Team
7/16/04 Pedi visit
regarding "atypical" seizures, will refer to neurologist, just in case,very wobbly, can’t run.
7/17/04 last Therapy
visit
7/19/04 last Early
Intervention teacher visit
7/20/04 Happy 3rd
Birthday!!!
Aug 2004
8/9/04 Htfd Neph
appt & Bloodwork 3.1 cr 63 BUN
8/25/04 First Day
of preschool!!
8/27/04 Htfd Bloodwork
2.9 CR 43 BUN 35 hemocrit 5.7 Phos
Sept 2004
9/14/04 Neurologist
appt verified "normal" febrile seizures, but saw cause for giving diazapam if occur again (YEY!) Good news
Oct 2004
10/12/04 Boston Neph
& Uro appts & Bloodwork 30.6lbs 91.5cm
3.1cr 44bun 309 PTH
37 hct 10% for ht & wt, Deb CT Angiogram to check anatomy for transplant
10/13/04 Flu Shot!!
at pedi
10/14/04 Htfd Feeding
Team followup visit loves cheese (even though it’s a no-no) eats coco puffs
31.4lbs (different
scale) 91.5cm would be 50% for wt 10% ht
Nov 2004
11/3/04 Deb solo
trip to Boston for MAG3 test, meet with surgeons, approved
to donate, operation explained
my function is 49%/51%
11/5/04 Htfd neph
appt bloodwork 3.2 CR 52 BUN 35 Hemocrit 411 PTH, bone age xray done shows 2yrs 8mos (32mos instead of 40mos)
within normal range,
now only delayed 8mos from actual age, GH upped from .6-.7 mg, vita d upped from .2mg to .3mg
** 1yr with GH went
from 18lbs to 32lbs-gain of 14lbs; went from 80cm to 91.5cm-grew 11.5cm***
now 50% for wt 10%
for ht-this time last yr not on charts at all (<3%)
Dec 2004
12/6/04 Htfd Neph
appt 32.5lbs 92.5cm 3.4 CR 63 BUN (working off another head cold)
12/10/04 PPT meeting
at preschool
12/15/04 Htfd Gastroenterologist
appt (2yrs+ since last one) great progress!! No changes keep doing what we are doing
2005
Jan 2005
1/11/05 Boston Uro
& Neph appt cr 3.8 bun44 32.6 lbs 36in tall, renal u/s no change in hydronephrosis
GFR test for me, normal
results
Feb 2005
Eric passes out at
school
Mar 2005
3/21/05 Fever &
congestion-chest cold, amoxicillin started for 10days
Apr 2005
4/12/05 Boston Uro & neph appt cr 3.8 !!!! yey! BUN 46, 15.7 kgs, 94.7cm
PTH 388, re-review of Jan ’05 u/s shows no cortical thinning in left kidney which is really good news!! 10% for ht,
25-50% for wt, stopped calcium supplement (11.7) phos ok at 5.3, upped vit d from .3mg to .5mg. Upped growth hormone from
.7mg to .8mg nightly. Repeat bloodwork in a month
Eric can swallow small
meals now-2 chicken nuggets and some fries or 1/2 a peanut butter & jelly sandwich
May 2005
5/5/05 G-tube pulled
out in the morning-replaced (10 months old!)
5/16/05( #2) Possible
absence seizure at school, staring episode then crying afterwards, also higher than normal body temp (100.8?) slept 4hrs for
a nap that afternoon
5/18/05 CCMC GI appt
& bloodwork 38" 16kg 25% for ht 50% for wt, 3.8CR (thank you God!) 54 BUN, 276 PTH, 36 Hemocrit
Eric can chew &
swallow 5++ potato chips and 1/2 a hot dog cut up
June 2005
6/2/05 Graduation
ceremony from preschool 1st yr
6/7/05 Pedi 3yr check
up-just a little late, no change in wt or ht, Eric was very cooperative with eyes ears mouth etc, didn't want blood pressure
taken
Later that night
developed a fever with Croup cough, had to go in steamy bathroom
to breath better,
fever from virus continued for 3 days, broke without a rash,was very dehydrated, shrunken looking with mottled skin, constipated
3 days at a time
6/12/05 Eric walked
in his first ever Kidney walk!!
6/14/05 Last day
of preschool yr #1!!
Eric likes chocolate
covered doughnuts, applesauce, drinking from a regular cup
6/20/05-6/24/05 Disney
vacation, sensory overload, 1st & 2nd plane rides-big mistake, very stressful on him, although he has fond memories of
some things
6/27/05 Fever?
6/28/05 Fever 101
6/29/05 Fever 102.7
start Amoxicillan for possible UTI-WBC in urine too many to count, urine cultured
July 2005 (4yrs)
7/5/05 First day
of summer preschool-nice to be back
Urine cultured positive
for Klebsiella Oxytoca (gram negative) Augmentin started, bloated tummy and raw mitro site seem to recover
7/10/05 Ate 1 small
slice of cheese pizza completely!!
7/11/05 Results of
repeat urine culture were clear?
7/12/05 Boston Uro
& Neph appts 97cm 16.1kg 104bp (by palpation) 4.0 cr!!! 55 BUN ca 13 phos 6, PTH 223, hemocrit 33, lower vitamin D from
.5mg to .25mg, renal ultrasound showed no change in hydronephrosis, kidney 6.9cm in size(normal size for age), no kidney or
bladder stones-thankfully!
Per uro we should
increase dose of Bactrim to 3/4tsp,ok @ every other day, if reinfects should go back to every day dosing regime
7/16/05 Augmentin
ended
7/17/05-7/18/05 slight
fever 100-101 (always hit near his birthday)
7/19/05 CCMC Bloodwork
redone 3.6CR!!! (Thank you God!) 49 BUN 5.6 Phos, 12.6 CA, lower vit D to .2mg
7/20/05 Happy 4th
Birthday!! Celebrate at home, very excited all day
noticing Night Terrors
have subsided completely1 yr later, having leg cramps now
7/21/05-7/24/05 Leg
Cramps nightly
7/25/05 ( #3)Possible
absence seizure at school, eyes rolled back in head during circle time, had red flushing in face, crying afterward, registered
100.3 fever @ school but not at home, urine culture regrew Klebsiella again, Augmentin restarted (4ml/1x/day) leg cramps stop
Aug 2005
8/4/05 Last Day of
summer preschool
8/9/05 Augmentin
stopped, leg cramps resume, give quinine doesn’t work well, maybe iron deficiency? (Maine
vacation loves the
beach and sand and throwing rocks) doing awesome on trails, can now eat entire cut up hot dog, chicken nuggets fries everything
he loves, go-gurts-have to stop him at 2!
8/31/05 First Day
of Preschool year #2 Happy to be back, but misses last yrs friends
Sept 2005
9/2/05 Fever noticed,
shrunken looking face, smelly pee, cloudy pee-same as June/July, always happens on a holiday weekend!!
9/3/05 Pedi on call
thankfully-Klebsiella again expected but not tested, Augmentin prescribed over the phone, fever spikes at night 103! No seizures!!
No appetite, tubing all food/water
9/9/05 First Dentist
appt!! :) no cavities !
Oct 2005
10/11/05 Uro &
Neph appts Boston 4.7 CR BUN 61 PTH 655 ca 11.9,phos 5.5, 99.1 cm tall, 16.7kg, he's grown 2cm and gained .6kg since July!!!
hemocrit 36, lowered vitamin d from .2mg to .1mg, nephs worried about ca not pth level-hard to accept
Will repeat bloodwork
at end of month to check for any improvements
10/25/05 Eric
flu shot
10/28/05 Bloodwork
at CCMC, cr 4.6 bun 62, PTH 648 ca 11.4 phos 5.4
Nov 2005
11/1/05 Review of
bloodwork shows drops in all areas CR now 4.6 BUN 62 CA now 11.4, PTH 645-stay the course per Boston recheck at end of Nov
11/7/05 CCMC
Neph appt no wt change, grew again!! now 100.5 cm! Went on Renagel to reduce phos even since in normal range 5.4 still the
high side of normal, bone age xray done, bone age 3yrs, 3mos, chronological age 4yrs 4mos
11/16/05 CCMC gastro
appt ht more accurate at 100.2cm, same wt 16.7kg
Dec 2005
12/5/05 Bloodwork
at CCMC cr 4.2, bun 52, PTH 698, ca 11.4,phos 5.3
12/15/05 Bloodwork
at CCMC cr 4.4,bun 59,PTH 851,ca 11.9, phos 5.8
12/21/05 Emergent
g-tube change (7mos old) rolled around in covers in bed and pulled out, no idea how it had been out, hard to put back in even
with surgilube
2006
Jan 2006
1/3/06 cancelled
Boston appt due to snow rescheduled for Feb, can now eat 1-2
complete hot dogs cut up, no spit back, loves “puggles”-pringles, loves fruit chewies, even likes popsicles
1/19/06 Eric celebrates
1/2yr b-day in school-sooo cute, he had a great time, now 4 ½ yrs old!
Feb 2006
2/7/06 Boston Nephew
appt with renal ultrasound, decreased hydronephrosis since last ultrasound (yey!) ,looked for possible parathyroid adenomas
in neck, normal appearing thyroids but no idea about PTH glands, needs a nuclear scan, cr 4.9, bun 59, PTH 909
2/21/06 despite my
efforts in requesting sedation for Eric nuclear scan is attempted in Boston
(sestamibi scan) Eric freaked out on MRi type table, wrapping in sheets and watching videos does not work for my kid!!! already
shot with tec-99-wasted the day in Boston, cr 5.0 bun 69 after
going from 730 to 4pm with nothing to eat!
2/23/06 returned
to Boston, this time under full anesthesia for the entire
test, and another neck ultrasound, adenomic tissue found on each side of the neck, can’t be text-book can he? cr 4.8
bun 67, also slightly hypermagnesimic (2.6), now we await a surgery consult
Mar 2006
No updates still
awaiting surgery consult in April (honeymoon time enjoying normal life)
April 2006
4/10/06 major gagging
episodes, ask about possibility due to size of PTH glands, told no they are pea sized –Yeh if normal but they are hyperplastic
4/24/06 Boston surgery consult with Dr L, 40lbs, 103cm, came down with a 102
fever
4/25/06 104 fever
no seizures
4/26/06 Fever 102
with croup like cough, attributed to croup, given prednisone (by accident-I forgot it intereacts with GH) wired won’t
sleep
4/27/06-4/29/06 no fever
4/30/06 Fever returns
101, tetany (severe cramps caused by electrolyte imbalance) in legs starts
May 2006
5/1/06-5/2/06 Tetany
continues, kept out of school
5/3/06 return to
school, very wobbly and weak
5/4/06 more energy
5/5/06 Bloodwork
at CCMC CR 5.1,BUN 73, 10.6 CA, 2202 PTH!!!!
5/16/06 find out
that surgery is scheduled for the following Thursday and pre-op is the end of this week!-short notice
5/19/06 Boston pre-op CR 5.1 BUN 60 hematocrit 29
5/22/06 give extra
large dose of epogen to help with HCB
5/24/06 drove to
boston at night slept over for surgery tmrw morning
5/25/06 parathyroidectomy
surgery 1st case 730am cr 4.9 bun 49, given iv calcium
5/26/06 given iv
iron moved out of cardiac icu to regular floor, still in pain given morphine
5/27/06 given iv
epogen
5/28/06 feeling a
lot better, trips to playroom & outside
5/29/06 discharged
June 2006
6/2/06 Bloodwork
at CCMC CR 4.4 BUN 60
6/12/06 Boston post op visit healing well, CR 4.7!! BUN 60 PTH 812!!
6/13/06 Eric’s
2nd preschool graduation
6/16/06 CCMC nephrologist
appt, thyroid tested, normal result, still low hematocrit 29
6/20/06 last day
of school
July 2006 (5yrs)
7/5/06 summer preschool
begins
7/14/06 Bloodwork
at CCMC CR 5.1 BUN 52 CA 10.4 PHOS 6.1 PTH 837!!!
7/20/06 Happy 5th
b-day!! celebrated at preschool and later with family
7/21/06 second dentist
appt no cavities again!! pedi appt to check rash start oxystat cream
