A blast from the past. 1 year ago we checked in St Louis Children’s to begin the Ketogenic diet. I will post a few of these blasts every now and again. It’s a nice reality check for how far we have come. Larkin’s OT was here this morning testing her for our 6 month review. It can be very sad so I stepped into my teleporter aka Internet to see how L was doing then.
We checked into the hospital yesterday around 10:30. She woke up at 6:30 and I gave her only water and so she was well on her way to Ketosis when we got to our room. They checked her urine and she was in the moderate range at 2 p.m. so they gave her a bottle of the Keto-Cal formula. It smells like white cake mix. YUM
She was so great taking just water and didn’t really lose her temper.
Last night they checked her blood sugar and it was at 46 so they gave her a bottle of some type of orange smelling juice. She took that and they checked her again an hour later and she was at 72. Again a check 3 hours later showed she was at 42 so she was given the same juice. She threw that up at some point prior to waking…I didn’t hear her.
She and I slept fairly well considering we were awake off and on all night. The hospital is very quiet and we are in the EEG area so it’s dark and no monitors are going off so you can rest.
This morning is a different story. She has thrown up everything since 8:00 on. She was screaming in pain yesterday after the 2 bottles of formula so we know she was hurting. They switched the formula today to the soy based one. I just gave her that about an hour ago and she is asleep so we shall see if she keeps this down.
Her ketones are HIGH but that can also make her feel sick so we gave her a tiny bit of apple juice to bring them down a bit.
Andy just took 3 bags of clothes to the laundry that is in the hospital. They give you soap and the laundry is free thank GOD. I am out of clothes almost from being puked on. As is she
The doctor here is considered one of the best and is well respected from Johns Hopkins and other institutions. Hard to get into him so I am LUCKY!
Nurse are amazing and the hospital is too.
Ok so it’s not an update until I can bring in my sense of humor so in my head I have been thinking this as we walk the halls for something to calm her down….we are in a room on the half of the floor that I like to call “Seizure City” then we walk the other half that is “Cancer Town”. The moms on both sides are great and we are helping each other get thru it with jokes and smiles. All the kids on our side have their heads wrapped up to keep the circuits on for their EEG’s and some have had brain surgery. The kids on their side have ports, IV’s and talk about their lack of hair.
There is a baby in C-Town that is about 6 months old. SHE is SO BEAUTIFUL. I just want to kiss and squeeze her. She hangs in her johnny jump up from the door frame to her room with her lines running down her leg and she bounces around and the SMILE is worth it’s weight in gold.
These people are strong and I am grateful for the reality check of “it could be worse”.
We hope to be out of here perhaps on Thursday or Friday. I’ll keep you up to date. The “s’s” continue and I know they hurt her but the doc says this diet can take a few days to truly kick in. So we wait. Whoever said Patience is a virtue never had a sick kid.
We were released late afternoon yesterday after they drew her blood work. Then we were put on hold because her Biocarbon level had dropped again and they were considering making us stay and start an IV again.
The IV itself the day before was traumatic because they abrupt-ed 2 veins one in her foot and one in her arm before they got it into her other foot. This girl has wonderful veins so dad lost his temper and demanded a competent team come in instead of who we had. I understood that things like this can happen and calmed him down. I feel badly for him because he’s been handed a lot for a first time dad.
Biocarbon is a level that in a nut shell checks to see how “sour the blood is” Ketosis makes the blood “sour” as does dehydration. Our normal levels should be at 20 and Larkin’s were at 10 so the IV was started. They went up to 15 but then dropped after being taken off the IV back down to 11.
Her doctors felt like we were ok taking her home as long as we watched her for signs of illness and to re-check her bloods when we got back to Champaign. We did not sleep really the night before so I was anxious to come home and sleep in our own beds.
L and I slept until 7:30 this morning here at home and she took her new formula and we both went back to sleep until 9:30!!! Gotta love a girl that will do that for and with her mom.
We are talking with Carle about checking the blood again and she and I are chilling here at home, enjoying silence and no one poking.
I am having to fight with Personal Care which is my insurance and her secondary about her formula. Health Alliance is covering it because it is a medical necessity without question, however as usual Personal Care is making me jump through flaming hoops, while holding a greased watermelon and singling the Star Spangled Banner in tune. A feat which is making me increasingly tired and angry. This is the same company that when she was diagnosed with Down syndrome told me “we don’t cover Down syndrome”. They haven’t met me but they have since learned my name.
I married the best man in the world and the best father. Andy’s parents have been our back bone yet again and make our lives so much easier. Thanks for reading my updates and we feel very positive that this could be our answer. Larkin continues to have seizures and is very tired but that is to be expected at this point. She will adjust and hopefully the outcome will be what we all need.