Home Sweet Home. We left Carle yesterday late afternoon. Larkin’s blood work was going in the right direction and her sugars stabilized. She is exhausted and content to lay on one of us most of the time.
She ate 10 blueberries and a few crackers last night along with her medications and bottle. Sleep came easy and this morning she ate a little bit more food. All she wants to eat are oyster crackers but they are limited because of her diet. It makes me giggle because I hand them to her, she reaches and feeds herself, and when they are all gone, she keeps reaching for my hand to try to find more. That may not sound like a big deal but it shows object permanence and self-feeding is a wonderful goal.
A lot of you have asked what is up with her blood and why that is so important. Larkin is in ketosis, which means her body is burning her own fat for energy. One of the biggest issues with the Ketogenic diet is the balancing act of her metabolic levels. Sodium, Potassium and a level called bicarbonate (HCO3) test measures the level of bicarbonate in the blood. Bicarbonate is a chemical that keeps the pH of blood from becoming too acid. If the pH level drops, HCO3 is absorbed by the kidneys and returned to the blood instead of passing out of the body in the urine.
If Larkin begins to throw up her blood immediately shows signs of distress in the HC03. For me to feel comfortable it needs to be over 20. When I went to the ED the first time, it was at 14 but as long as she did not continue to throw up, I felt ok taking her home. That changed when she threw up in the ED.
The second trip after taking her home too early, her levels had fallen to 11. 11. THAT scared the hell out of me and I do not scare easily. It has never been that low even when we started the diet at St Louis Children’s. Her potassium was unbalanced too so she had some of that via IV as well as fluids. Because her HC03 fell so low, her blood sugar fell to 30, which is also dangerous and we gave her small amounts of glucose to get that back up.
I hope that helps explain why throwing up/flu/gastro-intestinal bug stuff takes her down so hard. Not eating makes it worse and no fluids – well that is just a disaster waiting to happen.
There is a new hospitalist at Carle. Coming from the East coast, he has seen the Ketogenic diet more because Johns Hopkins uses it all the time. He gave Andy and me big props for doing the diet because it has over a 90% failure rate. Andy and I both looked at him sort of in shock and Andy said, “She is our CHILD and there isn’t anything we wouldn’t do for her”
We both know the diet is hard on parents. Health issues that normally affect a kid for a couple of days cost Larkin a week in the hospital. We are vigilant about what goes into her body. Case in point: We tried to get an anti-nauseous medication filled for Larkin and we couldn’t find one that didn’t contain sugar. The hospital sent up medications for Larkin. They sent up a Centrum vitamin – even though we explicitly said it must be a sugar free vitamin. Centrum contains sugar. What if we had left Larkin alone and a nurse gave her that. THAT is why Larkin is never left without a parent or friend who understands our needs. I bring all her medications to the hospital and we administer them ourselves. It makes it easier for everyone.
As I type this, I wonder exactly why most things contain sugar. Did you ever wonder why a store brand version of a pain reliever costs less than name brand, because the coating on the outside of the name brand contains sugar. Store brands do not put the coating on hence the price difference and why we can give the non-coated kind to Larkin.
What a lot of new nurses, doctors and others do not know – is that we lost this little girl not all that long ago. We lost her for a very long time. We have enjoyed over one year without clinical seizures. She LOOKS at us. She SMILES at us. She is making strides in her DEVLOPMENT. NO ONE is going to take her away from us again by doing something as simple as giving her sugar not as long as we are on watch.
Until you have seen your child in a coma like state from seizures – something as easy as taking sugar out of her diet, weighing her food, being diligent with medications, and spending a little more time to get her well, is nothing compared to losing her smiles, hugs, and love.
As we left the 8th floor I passed a newborn coming in. Just so, I am clear here – no one on the staff at Carle Hospital ever violates Hippa. No one on the staff discusses or talks about patients. I have spent enough time on the floor that I know codes, colors, and parents do talk to each other about why their child is there.
One of Chase’s former basketball coaches works for DCFS (department of children and family services) and I saw him follow the baby. I saw him three different times over the week. He didn’t see me but I saw him. I know what he does and why he was there. Three babies – all abused or neglected in some fashion requiring intervention.
A great-grandmother talked with me in the family kitchen about her great-grandchild’s situation. Parental abuse left the child with a tracheotomy and little brain activity. All taking place right here in Champaign-Urbana. Times are tough and the first people to suffer are the littlest ones.
I hug Chase and Larkin a little tighter and work on more prayers.
oh ames my heart just breaks for those little ones I will say strong prayers to protect those that can’t protect themselves from such cruelity. Hugs to you all and hope that you all can get well!!!