May 5th thru 13th
The week after coming home from the hospital. I continued to have stomach pains, there is nothing worse. Mom and dad continued with the hot water bottle, Irene gave me tuns of tummy massages, I am taking an anti gas med now, and for some reason my green veggies are bothering my tummy now. Mom gives me her homemade yogurt, I get probiotics but still I have tummy problems. It was hard for me to get back on track as I was not sleeping well at night and uncomfortable during the day. During all of this I had a few good therapies with Irene.
May 14th thru 20th
The following week I had an entire mess of seizures! My Neurologist decided to take me off one of my seizure medications since we had introduced another medication. He preferred me being on two instead of three. We slowly began to wean me off Trileptal. Well, that was a very bad idea. The day that I was no longer taking anymore of the medication I had a blue seizure. Remember those? Those are the ones were I stop breathing. I woke up at 6am doing it and continued to do through out the day . Matter of fact 11 times. My face turns totally blue, and I stop breathing. Sometimes I stopped breathing for a minute. To my parents, this minute felt like a hour. Mom of course called the neuro and said bad idea on dropping the med and he of course told us to start it back immediately. We of course already knew this! Mom had already given me a dose. The second day was worse I stopped breathing 15 times. All I was doing through out the course of the day was sleeping, waking up , stopping breathing, and going back to sleep. It was so scary. By Friday, I was getting better less and less seizures and by Sunday the blue seizures had pretty much gone away. The lip smacking was still around, but as my mom said she will take me smacking my lips my mad over me holding my breath any day.
May 21thru 27th
Monday I did not start off the week so well. I was crying a lot and agitated. My stomach is giving me problems again or so it seems. Irene is doing many exercises with me to help get things moving and many massages on my tummy. I have to take a laxative everyday to help me go potty but sometimes even the laxatives don’t help. You would not believe how many prunes I consume in a day! I had a small infantile spasm this evening but it did not last long only 8 minutes. I continue taking the gas medicine and now I am lip smacking a lot pretty much everyday. Also my mom found some green stuff again on my diaper again and this is usually never a good sign. Mom sends a photo of it to two doctors. Both say not to worry if I don’t have any fever or show signs of being ill.
On Thursday mom had read that flax seed water helps with constipation. So mom boiled up the seeds, strained the water and the following day gave me the water before my breakfast. Everything seemed to go fine. Ire showed up to give me therapy and on this day it was a hurricane outside. The wind and rain was crazy. I began to hiccups at 10 am and continued throughout my therapy. When Ire, came downstairs with me for lunch she told mom that she heard much phelgm in my lungs. They went back upstairs and tested my O2 and I was at 82 and dropping! Not good! So mom hooked me up to the O2 and they began to give me therapy. Mom became worried because I sounded so terrible and my stomach was extended so she called Jose my respiratory therapist in San Jose. He suggested that we put my feeding hose back on my tummy to help air out the gas and whatever else might be in there. I know this is probably too much detail for you all but when we put the hose back on all of my breakfast came back out. I had not digested one thing. Turns out I had a terrible reaction to the flax seed drink that morning. I did not have lunch that day and all Ire and mom did was work on my lungs and mom had to bring out the aspirating machine and aspirate me a bunch of times to get out the phlegm I had. It was awful. Dad had been working all day and when he came home at 5 to find me Ire and mom in full on hospital mode needless to say he was quite surprised. Finally we got rid of the gunk in my lungs, I was able to rest and that night mom did not give me anything but some chicken broth so I would have a little something in my tummy. The next day things were back to normal. Or at least a little bit but the flax seed we will never ever do again.
The weekend rolled around and I am now sleeping lots, lip smacking lots, and have the green gunk daily. Even though I have no fever mom and dad have made the decision that it is time to go in again. Irene and mom will be leaving on Tuesday. As much as we all do not want to go mom says her mommy instinct knows something is wrong. The plan is to go in on Tuesday and hopefully be home by Thursday.
Could it be possible that I have another infection? I sure hope not.
Love Malia