It has been a long time since I have had the chance to write here. Life has not been giving me many breaks. The last time I wrote we had just gone to CURU with my cousins and had a glorious time. Easter was around the corner, I was able to decorate eggs and have my very first Easter egg hunt with the boys! I won the hunt! I found my 13 eggs first with the help of mom, dad, and Irene! 🙂 I really enjoyed the experience of Easter with my cousins! I was sad to see them go. I was so happy they came to visit me. Ethan and Gavin are always so sweet to me and include me in lots of things. Gavin especially enjoyed hanging out with me and playing with me on my IPAD!
After Easter, I started to begin to have an increase in seizure activity. I was having one to two seizures a day sometimes lasting more than 20 minutes. Usually my mom and dad will give me Diazepam (valium) to make them stop but it depends on the severity of my seizures. They don’t like doping me out all the time either! My seizures were very similar to the Infantile Spasms I used to have when I was little. I had dropped that seizure medication for a new one as my seizures over the last year had been changing. Mom videoed my seizure and sent it to my neurologist and he said that it definitely looked like Infantile Spasms. I thought I was rid of those! He suggested that I have an EEG and make an appointment to come and see him.
My plan was to come into San Jose anyway to do routine testing as I had been home for a month since my kidney infection and needed to have some tests run on me and an ultrasound to see if my kidney was completely clear and how it was looking overall. Unfortunately Monday night I became very cranky and could not sleep well and mom decided at that moment that we would be taking the 6am ferry and not the 11am. I really had no other symptoms of anything wrong other than increase seizures and crankiness.
Me, mom and Irene left the house at 4:45am and headed to Paquera. Once we made it to Puntarenas, I had a massive poop explosion in the car and mom pulled off the side of the road and almost ran over a traffic cop! Oops. He comes walking up to the car looking at my mom like she is crazy and mom is like we’ve got serious poop here sorry! He thankfully was understanding.
We arrived at CIMA at 9am. The first thing I did was have my blood drawn and urine sample. My favorite nurse Carman was not there and two other nurses came to catheterize me and to be quite frank, they did an awful job. They did not do it correctly, and kept missing and then I went and peed all over the bed so we had to wait for my bladder to fill and come back and do it again. Ugh, I just hate it when it is not Carman catheterizing me. My urine came back clean but of course that does not say much as three times before it was clean and I had an infection. My blood work came back good too, no real signs of infection.
We left the hospital by noon and went to the hotel to check in and so that I could have my lunch. After lunch we went back to the hospital and I had my ultra sound. The doctor said my kidney had healed nicely except for a little scarring all looked good. After the ultra sound I headed upstairs to see Dra. Castro. She did a quick check on me and said I was looking good. After that we went downstairs for my EEG. It is now 6pm. In order to have a EEG I have to be very still. Any movement whatsoever throws off the reading of my brain. At first I was really tired from the trip and all but the second the lady started putting electrodes all over my head I began to get rather irritated. Once we started the EEG I calmed down but I would only be still for a few minutes and act like I was sleeping but move again. So mom had to pull out the Choral Hydrate. This is a sedative and although it did not completely knock me out it did the job and we were able to get the EEG done. We left the hospital at 7:30pm. It had been a terribly long day. By the time we got to the hotel I was totally knocked out and mom and Irene washed all the goo out of my head over the kitchen sink and I never once opened my eyes. Obviously I slept thru dinner.
Around 9pm mom checked my O2 and it was down in the low 80’s. The sedative was having an effect on my respiratory system so mom hooked me up to my portable oxygen machine and I stayed on O2 for the rest of the night. This way mom and Irene could at least sleep without worrying about my O2 levels. I did not have the best night. I kept waking up and did not sleep very well.
The next day we went to see my neuro. I had a good long nap on his couch. He never really sees me anyway he just talked to mom and Irene. Turns out Irene was one of his favorite students! He explained to us that yes I was having Infantile Spasms like before but not necessarily West Syndrome. West syndrome deteriorates my development. So even though we were not happy about the spasms it was good news to hear that they were not West syndrome. We have decided to add Sabril again to my medications and take away Trileptal. I will be on two seizure medications not three. We got back to the hotel, I went to bed early and slept good.
The following day we went Irene’s house for lunch. They make the best lunches ever! Lourdes,who is Irene’s mom and Juanni, are so sweet to me and spoil me rotten. Mom left me with them as she had to run an errand. A pretty big errand she had an appointment with the credit loan office as we are hoping to build a new house sometime in June. Our plan is to head home tomorrow to Delicias.
Just as mom was getting ready to walk into the credit office she received a text from my Dr. Castro that said call me immediately Malia’s urine culture has shown positive for Klebsibillia. That nasty little bacteria that was recently in my kidney. My mom was so shook up she could hardly listen to what the people were telling her about the terms of our loan. 🙁 Mom was really sad. I just got over a kidney infection and now this means we can not go home. 🙁
Mom had a hard time even believing it. She had my urine retested at another laboratory. Three days later it came back the same and this time when my urine was tested for the general exam it came back dirty. 🙁 We have been in a hotel now since Tuesday and it looks like we will be there until at least Monday. We spent the weekend not doing much we did go to a nice farmer’s market on Saturday to waste time and mom and Irene took me out to lunch at a nice place outside on a nice big patio. Nothing worse than being cooped up in a hotel all the time. On Sunday dad will come in it has been a week now and he is going crazy without us. Plus he is the best packer in the world and will take the bus in and drive us home hopefully later this week. I started antibiotics on Friday and on Monday Carman my favorite nurse, is coming to the hotel to catheterize me. She does not work on Monday but mom refuses to go back to the hospital and have the ladies who poked me last time mess up again and cause me pain. Mom is paying Carman privately to come to the hotel to take my urine sample. Dra. Castro wanted to test the urine to see if the anitiboitcs were working and killing the bacteria. Once the urine is collected we have to wait until Wednesday to see if anything is growing.
The hotel did not have the room we were in available after Monday so fortunately enough Irene’s mom Dona Lourdes has offered their lovely farm home in Turucares to us so that we can save some money and still be close to the hospital. The house is about 20 minutes from CIMA and is in a beautiful place with lovely trees and a big yard and is perfect for us. Mom and dad packed up the hotel and me and we headed out there Monday evening as I had another ultra sound with a different doctor on Monday at 5pm. No one not even the doctors can understand why I keep getting these urinary tract infections when everything else in my body is working properly. We have to find an answer though as this is getting ridiculous!
Tuesday was a mellow day, no doctors appointment just waiting around to see what the lab has to say tomorrow morning. We went to Irene’s house for lunch again. Mom and dad wont stop raving about the fabulous food Juani makes for everyone. She is an awesome cook! Lourdes and Juani have been so kind to me. They have fed me, washed all my clothes, and the dirty dirty ones too! We are so blessed to have found Irene. She and her family are beautiful.
Wednesday morning we were packing like crazy as we knew the test was going to be negative and that we could finally go home! Sure enough at 10am mom was on the phone and spoke with the Dr. of the lab and YEAH it was negative. Homeward bound!!!
We took the 2pm ferry and were home by 5! Gosh it is good to be home!
Love Malia