Drake’s seizures have hit an all time high…. He started Sunday seizing every 10 minutes or so and this continued until 10 pm Sunday evening when we had to give him a rescue med to ease them so he would sleep. Monday morning he started very similar and ended the same way. We have been trying to manage the glycine and the acidity levels in the blood and we have been throwing every thing at it, to the best of our knowledge, to get it to lower. The ketosis makes his body acidic and Drake was able to get into “ketosis” much faster than they had expected…but for some reason….the diet (even on a lower ratio) is causing so much chaos …. he can not sustain it.
We were waiting for labs to come in last night that would give us another fork in our journey. Drake’s CO2 levels were going down at a concerning rate yesterday and we had to draw a third level later in the evening to see if the spiral was going to stop and turn up…. we needed the levels to come up … and not just a little bit. We sat and prayed and tried to soothe Drake as best we could. We received the results around 10:00 pm that told us his CO2 had jumped from 14 all the way to 20 (just in 5 short hours) so we all went to bed very encouraged and hopeful tomorrow would level out and Drake could start getting his feet back under him.
Drake rested some through the night but this morning at 4:30 am he started again…. seizing… hard, whole body seizures that causes him to throw up….they were coming every 6-9 minutes. Those sucked the life out of the room…. those shifted the momentum….
Not only did Drake wake up with hard seizures…..he woke up sweating…..
4:30 am - seizure - We start charting and timing so we can tell the doctor and nurses…
4:40 am - seizure
4:50 am - seizure
5:00 am - seizure
5:10 am - seizure - we call the nurse and tell her we need milk and Drake is not doing well. I phone our neurologist and we start realizing Drake is sweating.
5:26 am - seizure
5:33 am - seizure - we realize Drake hasn’t went to the bathroom all night, we check his temperature under his arm and it signals 99.3…… I ask for a rectal thermometer and it says 101.2….. the temperature is confirmed…
5:40 am - seizure - spoke to our neurologist and explained how bad Drake was getting and now the fever….we switched the diet back to his traditional formula trying to give Drake a landing spot, deciding figuring out this fever is the most important at this point.
5:50 am - seizure
6:15 am - seizure - cold rags every where trying to cool his body, if we can get the fever down we can get the seizures to calm…
6:23 am - seizure
6:50 am - seizure - dose of tylenol..changed out cold rags…temperature taken again..102.3
6:55 am - seizure - rescue med
7:01 am - seizure………..
Not only was Drake going through a rough undertaking trying to get his body transitioned into ketosis….. his body was weak from seizing for almost a week now….. he has been battling dangerously high acidity levels despite our efforts to neutralize his blood…. we now are taking chest x - rays to check for aspiration and pneumonia all while throwing words around like “blood infections” ….to that my mind goes straight to sepsis…..
8:06am - seizure - second rescue med
8:22 am - seizure
8:31am - seizure - changing cold rags again
8:43 am - seizure
8:52 am - seizure - trying to keep his body turned because he has began to throw up
9:02 am - seizure - Keppra dose is given
9:08 am - seizure
9:20 am - seizure - talks of possible putting him on a drip and having to send him to PICU
9:26 am - seizure
9:34 am - seizure …..praying they stop…..please God let them stop
9:50 am - seizure
10:03 am -seizure
10:14 am - seizure……… finally they stop…… finally his brain is resting…..
This morning our bottom fell out….. this morning we panicked and cried…. and then we started doing everything we could to help Drake calm…. this morning we refused to let ourselves go to the “what ifs”…. “how much more”…… “what if this doesn't turn soon”……
This morning we held Drake and we cried and we prayed…..
When God gave us Drake in his uniqueness….. I used to sit in PICU and ask God….
“How would we do this?… everyday….all day….with three other children?”……
Holding Drake this morning …… as the bottom was crumbling fast…….
All I could asked God was.…. “How do we not?”
God never promised us a life of ease, and sometimes He calls us to suffer for His glory….
He never says life here on earth should be “easy”…. but He promises it will be worth it.
We are stopping the diet and just trying to get Drake back stable so we can get him home. This diet has huge potential for so many… it just wasn't Drake’s time. Drake has been sleeping which is much needed but we wont know the extent of what is going on until he wakes up. Please pray Drake is Drake when he wakes….. the Drake we know…. our perfectly imperfect child. Please pray his levels balance and he can recover… please pray the fever and seizures are controllable…..
1 Peter 5:10
“And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.”