MEDICINE
04/05/2005
(Always vent before giving meds)
Phenabarb – 6 cc’s -- 2x’s/day (As of right now, Karleigh is not on oxygen at night)
Robinol – 2.5 cc’s – 2 or 3x’s/day
Prilosec (Omeprazole) – 10 cc’s – 2x’s/day
Baclofen – .5 (½) cc – 2x’s/day
Xopenex – 1 vial every 4-6 hours as needed
Tylenol – 5 cc’s every 4-6 hours as needed
Motrin – 5 cc’s every 6-8 hours as needed
FEEDINGS
(Nothing by mouth)
Morning – Set pump rate at 80 cc’s/hour
2 cans Peptamen Jr. + 15 oz. of water
(add ice block to pouch of bag to keep the formula cold throughout the day)
Bedtime – Set pump rate at 50-55 cc’s/hour
1 can Peptamen Jr. + 5 oz. of water
-- MAKE SURE TO CHARGE THE PUMP ALL NIGHT SO IT IS READY TO GO FOR THE NEXT DAY!!!
(If she doesn’t get all of the formula in by morning, it is ok. She will be fine.)
BEDTIME & NAPTIME
She will go down easiest if you spend some time rocking her or holding her. Then just lay her down with lots of hugs and kisses. Push the frog’s nighttime hand 6 times and it will play music for 6 minutes. If she cries, it is ok. But if she keeps crying (10-15 minutes), she either needs to be vented, didn’t get enough “cuddle time”, or simply isn’t tired. She will usually always wake up about 20-60 minutes after falling asleep. All she really wants is to be rolled onto her side. If you get in there when she just starts to wake up, it is easier to keep her asleep. Watch which way she is turning her head when she wakes up. If she has her head to the right side, then most always, she wants to be rolled to her left side – and the same with the other side. Put a blanket roll behind her to help stabilize her and keep her comfortable. You can also put a blanket folded between her legs or a small one for a pillow (about 1 inch high).
OTHER INFORMATION
Karleigh likes to have people around. She is most always happy if she is feeling well, and has someone paying attention to her. Try to keep her near someone.
She loves to go outside and go for walks, but has a hard time breathing in strong wind and cold air.
Make sure to push her heel into her AFO’s tight and then Velcro them tight. It will not hurt her, as they are molded to her feet. Her heel HAS to be held in tight, or she will get sores. She pushes her toes down and can get her heel out of position if it isn’t tight.
If she gets red around her stoma, clean it with soapy water and then put a 2x2 gauze pad around it. Tape the gauze together. Then put either aloe vera cream under it, or desitin, or mix the cream and desitin together. Then gently tape the pad to her stomach so the medicine doesn’t get all over.
Try to get her to be sitting in her wheelchair as much as possible. This makes her easier to move around, plus gets her off the floor. Make sure to tighten the strap very tight around her hips. If her hips are held tight, it gives her less of a chance to wiggle into an unwanted position. (you will have to tighten the strap each time you put her in the chair – it slips)
If you go in the car, roll some blankets up next to her to hold her in a good sitting position in her carseat.
Bathtime – Try not to get water in her ears. Also, DO NOT get it in her mouth.
To brush her teeth, lay her on her side and support her hands or face so she is not startled.
IF SHE GETS SICK….
Check her temp. rectally. Please call me if she is acting even a little bit sick, or just acting different!
She really does understand much of what you say!
04/05/2005
(Always vent before giving meds)
Phenabarb – 6 cc’s -- 2x’s/day (As of right now, Karleigh is not on oxygen at night)
Robinol – 2.5 cc’s – 2 or 3x’s/day
Prilosec (Omeprazole) – 10 cc’s – 2x’s/day
Baclofen – .5 (½) cc – 2x’s/day
Xopenex – 1 vial every 4-6 hours as needed
Tylenol – 5 cc’s every 4-6 hours as needed
Motrin – 5 cc’s every 6-8 hours as needed
FEEDINGS
(Nothing by mouth)
Morning – Set pump rate at 80 cc’s/hour
2 cans Peptamen Jr. + 15 oz. of water
(add ice block to pouch of bag to keep the formula cold throughout the day)
Bedtime – Set pump rate at 50-55 cc’s/hour
1 can Peptamen Jr. + 5 oz. of water
-- MAKE SURE TO CHARGE THE PUMP ALL NIGHT SO IT IS READY TO GO FOR THE NEXT DAY!!!
(If she doesn’t get all of the formula in by morning, it is ok. She will be fine.)
BEDTIME & NAPTIME
She will go down easiest if you spend some time rocking her or holding her. Then just lay her down with lots of hugs and kisses. Push the frog’s nighttime hand 6 times and it will play music for 6 minutes. If she cries, it is ok. But if she keeps crying (10-15 minutes), she either needs to be vented, didn’t get enough “cuddle time”, or simply isn’t tired. She will usually always wake up about 20-60 minutes after falling asleep. All she really wants is to be rolled onto her side. If you get in there when she just starts to wake up, it is easier to keep her asleep. Watch which way she is turning her head when she wakes up. If she has her head to the right side, then most always, she wants to be rolled to her left side – and the same with the other side. Put a blanket roll behind her to help stabilize her and keep her comfortable. You can also put a blanket folded between her legs or a small one for a pillow (about 1 inch high).
OTHER INFORMATION
Karleigh likes to have people around. She is most always happy if she is feeling well, and has someone paying attention to her. Try to keep her near someone.
She loves to go outside and go for walks, but has a hard time breathing in strong wind and cold air.
Make sure to push her heel into her AFO’s tight and then Velcro them tight. It will not hurt her, as they are molded to her feet. Her heel HAS to be held in tight, or she will get sores. She pushes her toes down and can get her heel out of position if it isn’t tight.
If she gets red around her stoma, clean it with soapy water and then put a 2x2 gauze pad around it. Tape the gauze together. Then put either aloe vera cream under it, or desitin, or mix the cream and desitin together. Then gently tape the pad to her stomach so the medicine doesn’t get all over.
Try to get her to be sitting in her wheelchair as much as possible. This makes her easier to move around, plus gets her off the floor. Make sure to tighten the strap very tight around her hips. If her hips are held tight, it gives her less of a chance to wiggle into an unwanted position. (you will have to tighten the strap each time you put her in the chair – it slips)
If you go in the car, roll some blankets up next to her to hold her in a good sitting position in her carseat.
Bathtime – Try not to get water in her ears. Also, DO NOT get it in her mouth.
To brush her teeth, lay her on her side and support her hands or face so she is not startled.
IF SHE GETS SICK….
Check her temp. rectally. Please call me if she is acting even a little bit sick, or just acting different!
She really does understand much of what you say!
8 comments:
I miss her.
This is a lot more interesting to me now that I've had so much experience with similar kiddos in the hospital. I didn't spend a lot of time with Karleigh (I don't even think I ever met her...?) but I have a lot of empathy for what it must have been like to care for her day to day. What exactly did she have, if you don't mind me asking? (That's just my medical curiosity speaking.) The pictures are so cute.
Jen,
She had a mosaic interstitial deletion in the 5q between segments 13 and 22(?).
Thanks, Sweetheart. I appreciate the reminder.
Like Chris said, Karleigh's main diagnosis was a Mosaic 5q deletion - so basically a chromosomal abnormality. So basically, she was missing a section (sections 13 - 21) on her 5th chromosome - on the q side. Mosaic meant the problem was found in some cells, not all. So - that was good for her because she wasn't as "bad off" as some other kids were. As far as her dr. could find (who was the head genetisist at the hospital), she was the only case of a Mosaic 5q deletion. There are others with a full 5q deletion, and unfortunetly for them, they had more problems. So, basically with this one thing being the main reason for everything - she then had a long list of other issues and disabilities. Maybe someday I will post about all of them....hmmmm. It might be a good thing for me to do - for my own sake. Thanks for asking though. I don't mind answering questions and talking about my girl.
It is crazy what your day entailed! You amaze me.
What a beautiful life she was!!!
Correction....I said Karleigh's dr. was the head geneticist....that was a mistake. I meant to say the head pediatrician in the clinic but was also a geneticist.
Unbelieveable what you did every day. I really had no idea, and I thought I knew details...You are incredible Tracy. Love you.
She reminds me so much of Chloe!! I never get tired of seeing her pictures and never will!! Isn't it crazy how even though your days were so full of taking care of your little girl that at the time it was just what you did and you didn't even think twice. You are AMAZING!!!
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