Archive for June, 2012

May 29th thru June 2nd

Thursday, June 7th, 2012

We left for the 11am ferry. Dad helped us get hurried out the door in order to catch the ferry on time. We have many many things to pack up! We arrived at CIMA at 2pm. I was catheterized and had my blood tested. The blood test came back fine but the urine test came back dirty. Normally I always have clean urine and a positive culture. This time with the urine coming back dirty right away it definitely means their is an infection somewhere. I am a tad bit irritated and tired. We head out to Turrucares. A small town outside of the big city San Jose. It is a lovely farm house with lots of fruit trees, and a swimming pool and it reminds me of being home. Irene’s parents are so very kind to let us stay here, it saves my parents a ton of money not having to stay at a hotel. I love it out here. When we showed up Irene’s parents Lourdes, and Kiki where there when we arrived. They were so kind, they bought us dinner and me some papaya and yogurt and Lourdes brought mom some mommy medicine… aka a big bottle of red wine to share. They are the best! Mom thoroughly enjoyed talking with them. Irene had crashed as she had a headache as mom and Irene had not eaten anything all day. That night I did not sleep so well. I cried pretty much all night. I usually do when I am away from my home the first night. Mom put the water bottle on my tummy and it soothed me and I was able to fall back to sleep around 4am!

On Wednesday we went into to see my dentist Dr. Mermelstien. He cleaned my teeth for me and said he was very very impressed with my oral hygiene! I did not mind too much him having his fingers and tools in my mouth. I have to say myself I behaved very well. After my dentist appt. we had lunch at Linda’s my first physical therapist ! Matter of fact it is her husband Simon who is my dentist! We had a lovely lunch at her house. After that mom and Irene and I went shopping price smart (Costco) to buy diapers and things for the house. We then headed out to Turrucares. I slept much better that night. Mom was just sure that we would be able to go home the following day.

At 10am my mom called the laboratory and asked what the culture had shown. Turns out I have an even nastier bacteria called Enterbacter Clocae. It is a very resistant bacteria. There is only one drug that is going to work without my having to get hospitalized and receive the antibiotic intravenously which is not going to happen. My pediatrician called the infectious disease doctor and asked what we should do. She suggested I take a drug called Ciprofloxacina. It is a very big broad spectrum drug that seems to be the only oral antibiotic that will kill this bacteria. The only problem is that this drug is typically not given to children under the age of 18. The reason why is that the antibiotic penetrates down to the bone and can stunt growth. Mom was not happy to hear this and called the urologist and asked his opinion. He told her she could use a different drug completely opposite of what Dra. Castro was telling us. So mom called dad and he said to ask another one of our doctor friends Dr.Armando who took care of me in ICU that year at the children’s hospital. He told my mom not to think a second more and to give me the big drug. Well that was now three doctors against one so mom made the decision to go with the Cipro drug.

The only catch with this drug is that is has to be specially made. It is now Friday morning and mom is trying to find out how we are going to get the drug as CIMA the hospital does not have this service. It was a complete fiasco for my mom to get the drug made. By 11 we still had no answer and what they were trying to tell us was that the antibiotic would not be ready until Monday. That is when I thought mom was going to have a nervous breakdown. Monday??????? Are you kidding me? I am sick and need the drug now!!!!!! Irene ended up taking over as my mom was losing her patience and thankfully Irene calmly told them our situation, that it was not easy for us to just jump up and move anywhere quickly and could they please understand our situation and have it made that day. Well they finally said yes, it would be ready by 5pm. This laboratory is in downtown San Jose and it is Friday and 5pm! Thankfully Irene’s sister Carlotta works downtown and was able to swing by the lab and pick it up for me. It was so kind of her help us out. We waited at Irene’s house in Escazu for Carlotta to show up with the drug. We are heading home tomorrow for our home in Delicias. Mom had decided we will come back in ten days to do another culture and see if the bacteria is gone. What a very very stressful day, thankfully all I have been doing these days has been sleeping. Mom on the other hand, well she is one big stress ball!

Love Malia

May 5th thru 27th

Thursday, June 7th, 2012

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