Cathing:
8 am – 159 CC
12 pm – 70 cc
3 pm – 57 CC
5 pm – WET diaper + 7 CC cath
Monday February 18, 2007 February 18, 2008
Feeds: 175/ hr = 1000 ml… she was off about 140 ml today because the pump is jacked up!! She had a FEW (5-8) pieces of puffed corn popcorn tonight. The kind that dissolves in your mouth. We are anxious to see what the brings tomorrow!
Poops: She had TWO big poops immediately this morning.
Cathing:
8 am – 15 ml
12 – 6ml
4 pm – 58 ml
8 pm – none – WET diaper administered Ditropan in cath for FIRST time at 8 pm… fingers crossed this helps!
Urology February 18, 2008
Friday we visited with Dr. Alam. I know that he could sense our frustration with teh Ditropan and cathing. It seems that her kidneys have not gotten worse so what we are doing is working.
Our new plan is : Ditropan solution- crushing 1/2 tablet- mixing with 20 ml sterile water and administering through a cath straight into the bladder. We hope that this means that it will have LESS systemic effects and will be localized to the bladder and has less effect on the colon. We are also going to foley her for the weekend to get an accurate total urine count.
FOLEY CATH RECORD:
Foley Cath placed 1 pm – Friday February 15th
7 pm 2/15/07 – 225 ml
SATURDAY
8 am 2/16/07 – 130 ml
4 pm 2/16/07 – 255 ml
7 pm 2/16/07 – 82 ml
midnight 2/16/07 – 41 ml
SUNDAY
8 am 2/17/07 – 60 ml- with leakage
11 am 2/17/07 – 80 ml
1 pm 2/17/07 – 105 ml
** of note… there was NO time during our process that her foley line was empty… its like she is CONSTANTLY peeing!** Since we pulled the foley she seems to be drier in between cathings!!
Florida Week February 18, 2008
Monday – February 4th…. Kyleigh started puking feeds AGAIN. We had just taken her off meds and changed her to nearly all bolus. We assume that we have pushed her too hard. We decided to take her off formula altogether for 48 hours and go to Pedialyte at 40 / hr.
Wednesday February 6th … Driving to FL Ky was on Pedialyte at 40/ hr continuous we worked her up to Pedialyte on a bolus volume. She was having a FIT because we were eating on the run (in front of her) so we gave her cheerios to eat. She nearly puked up the tiny bit of food we gave her so we cut off the food intake allowing ONLY suckers and backed off the Pedialyte. We also thought that it was possible that being in the car so long could have made her nauseated.
Friday February 8th … Ky puked again. I really feel like troy is trying too hard to push her to bolus. Everytime he takes a big jump she rejects it. We once again took her OFF the feeds and let her rest for a few hours.
Saturday February 9th… I don’t know if it is all the moisture in the hotel room… there is visible mold and its STICKY wet … or if its the crowd… but Kyleigh has a NASTY cough. It definitely do NOT sound like its in her lungs though… I think its just a nasty cold / flu… she is running a low fever and has a snotty awful nose! Poor kid!
Sunday February 10th… ahhhh the granulation tissue has begun! Had to email Joe this am with pics of the nasty blister like skin tags around her mic key… I gotta tell you that this stuff is driving me nuts! I am compulsive about keeping the area around her mic key clean! And this I cannot wipe off! Joe said to get some steroid cream to put on it. We are haded to Walgreen for that and cold med for her.
Monday February 11th – Puking AGAIN… has had NO food this time… but I think she REALLY has a TON of congestion! That is enough to make anyone puke!
Tuesday February 12th – Driving home. Puking on the way home. in the car … all over the car… she was on a rate of 200 / hr and off two hours… we decided to let her rest for a few hours and go back to 40/hr just to get home. Too many outside factors to decided if its her, the cold, the car etc.
Thursday February 14th – Puking AGAIN. This time we are at a rate of 125/ 2 hr – so we rested for two hours and started again.
Saturday February 16th – I caught her HEAVING this morning. She was on a rate of 150 / hr – she had had a volume of 143… and was about to chuck… we vented her mic key and she heaved but never threw up projectile.
Little things I have noticed January 8, 2008
Yesterday her cath amounts were very low. Much lower than they normally have been while hooked to the IV. Today her cath amounts are back up, but when I cathed this morning she pee’ed around the cath so much it actually pee’ed the cath out and pee’ed on the bed to an amount I had to change all three layers of sheets.
Tonight I cathed her again and near the end of it, she pee’ed around the cath again. This time I was smarter to hold the cath stronger so it didn’t shoot out, but she still pee’ed around it.
Two nights ago while I was here Kyleigh woke up with a nightmare. It took her a bit to figure out it was me and stop fighting and take the passy again. Tonight she was evidently having a good dream as she was totally doing her Kyleigh talk in her sleep.
She also is trying much more desperately to communicate what she wants by saying “bye bye” when she wants a procedure to be over with.
1/4/08 – 1pm January 4, 2008
As of 1 pm Kyleigh has had two “bowel movements”. The consistency is that of melted liquid chocolate. The coloration is dark. The diapers are not “wet” other than the muddy water stool.
Cathing out is WAY down. Her 9 am cath was 3CC. Her 1 pm Cath was 5CC.
Eating / Drinking – She has eat 4 1 inch squares of white meat grilled chicken, and taken 1/2 oz of orange powerade. She was offered a bottle of Vitamin D milk for nap and refused it twice. I left the bottle in the bed with her and when I checked in at 2 pm she had taken 2 oz roughly. I will measure it when she wakes up for an exact measurement. She has been offered 4 sippy cups today: Sprite, Water, Orange Powerade, Milk.
Overnight January 3, 2008 January 4, 2008
Last night she had a total of (3) stooling diapers that were mostly “muddy water”. She was still mostly refusing fluids but did manage to eat a small amount of meat for dinner.
Night meds: Ditropan, Bactrim
8:30 am:
Overnight. Kyleigh awoke at 3 am screaming bloody murder. We got her up, changed her diaper which was wet but no stooling. We also made a bottle of milk (10 oz) which contained 1 capful of Miralax. She drank approximately 6 oz of that bottle by 8:30 am.
In the am she awoke at 8:30 am . She had a diaper that was soaked with a smallish amount of loose liquidy stool and lots of brown water. We would assume this would be from the Enema yesterday. Generally she awoke in a good mood. One thing I did notice was that her extremities were noticeably purple, lips especially.
Meds given: Ditropan, LT (1 dropper)
Intro to Kyleigh December 14, 2005
This blog was establish to track the day to day medical logs of Kyleigh Morgan Schmidt.
Kyleigh Morgan was born July 13, 2007 , full term, by C-section at Central Baptist Hospital. She weighed 6 lb. 10 oz. at birth. There were no complications and she needed no oxygen or resuscitation. During the pregnancy she was found to have an unidentifiable heart condition. A full amniocentesis and chromosomal study showed no chromosomal abnormalities. There was a single umbilical artery.
Kyleigh’s Diagnosis: VACTERL’s Association:
V – Vetebrael Anamolies: Terminale Filum with minimal movement in the Conus (classified as Tethered Cord with no lesion)
A – Anal Atresia : Low Imperforate Anus with Rectovestibular Fistula (Colostomy 7/15/06 by Dr. Joe Iocono (UK), PSARP – 8/14/07 by Dr. Marc Levitt (CCHMC) and Dr. Joe Iocono (UK) at CCHMC, Closure by Dr. Joe Iocono (12/20/07))
C – Cardiac Anamolies: Complete AV Canal Defect with Involved Valves (Repaired via Open Heart surgeries on 2/28/07 by Dr. Pirooz Eghtesady (CCHMC) and 3/10/07 by Dr. Pirooz Eghtesady (CCHMC)) Residual VSD and murmur, Congenital Heart Disease
T – Tracheal Anamolies: Tracheal Bronchus (also known as Bronchus Suey, Pig Bronchi, or Pig Lungs), Reactive Airway
E – Esophageal Anamolies: GERD, Feeding / Swallowing Difficulties (diagnosed Failure To Thrive 9/1/06- NG tube placed for continuous feeds)
R – Renal Anamolies: Congenital Kidney Duplication Anamoly (3rd Kidney RT), Kidney Reflux (LT)
L – Limb Anamolies: No known Limb Anamolies at this time.
Other complications include:
Neurogenic Bladder with EXTREME high pressures (pressures of 160 on Urodynamics studies), Large Bladder Capacity (120CC) – CIC 4X daily to alleviate pressure.
Chiari Malformation – ACM1 – (6 mm herniation of the cerebellum)
