May 2 2017
We headed out the door at 9:30a, and took the 11am ferry to San Jose Tuesday morning. I was receiving oxygen, recently my portable 02 machine has been acting up. It keeps over heating and turning itself on and off. We headed out the door at 9:30am. It had been raining all night. One of the first big rains of the season. The road to Cobano was so slippery we got to this one part in the road where we started sliding sideways toward the ditch. Luckily my dad has lots of experience in driving in the snow and kept us on the road. By the time we got to the ferry my battery was dead and the AC adapter to charge it in the car decided to stop working that day! The ferry guys know us very well, and thankfully they lot us park up at the front of the ferry and brought us an extension cord and we plugged in for the 1.5 hour ride and recharged my battery. 🙂
We got to San Jose around 2:30pm and headed to Emergency. Mom had already been talking to Dra. Castro who would meet us later in the day once all my exams came in. First we drew blood, then Rebecca an old friend and great respiratory therapist came in and worked on me. The attending Dr. in ER had listened to my lungs and was concerned with how they sounded. I was full! Rebecca did exactly what I had expected she took the small hose and went through my nose straight into my lungs and pulled out a large amount of phlegm. She also put a bit in a vial so it could be tested. Even though having to be suctioned through my nose is not fun and very uncomfortable, I did feel better after it was done. After that we went straight to the X-ray room to take pictures of my lungs and stomach. The first X-ray was not done right. When the ER doc looked at it she said we would have to repeat it. Back we went to the X-ray room. The second one came out fine.
By 5:30 Dra Castro made it down to check me out. My blood work came back perfect. Nothing was wrong with me there, the test on the phlegm for bacterial infection in my lungs came back clean. The Rhino Virus did show up and Dra. Castro said that was the cold I had three weeks ago! My X-ray of my lungs showed lots of phlegm but not bronchitis nor pneumonia! The picture of my stomach however was not good. I was so full of gas! Dra Castro said the gas was pushing up on my thorax and that was causing major discomfort and one of the reasons for gagging. All in all, the culprit for all this massive pain and discomfort is SIBO! Agh!
Having to look at the glass half full and not empty, we were all very grateful for there was no pneumonia, and no other viral infection going on with me. Now it was just time to tackle SIBO and that is not an easy feat. We went to our hotel we always stay at and decided that we would stay put in town for the week. This way if anything went wrong we close to CIMA. You don’t make that journey to turn around the next day, it was better to stay put and see how did that week.
My main problem was the gas and pain that sibo was causing me. I know this maybe too much for you to read but the only way besides taking gas relief medicine to get the air out is by inserting a small hose up my bottom. Yes, you just read that. My mom would have to do this four to five times a day and it worked. Air would come out every time she put it in. This was not comfortable for me but at least it alleviated me from the gas and it helped ease the pain. Naty was doing tummy massages two times a day I was still not sleeping and eating very little. We are slowly raising the speed of food intake and I am able to receive a little more. I am now on day 6 of taking Flagyl and of course I started to do weird things such as seizures. Practically every antibiotic has the risk of causing seizures and I typically am going to have more when I am on antibiotics. They always are different. I started lip smacking, and leg shaking, one night I had a grand mal. My parents were more than ready for me to finish my round of Flagyl.
Besides from all of this that was happening it was time for me to change my g-tube. In the hotel room one morning my mom went to change it like she always does but this time she could not get the water out of the ballon anchored in my stomach. She tried and tried and had no luck. Mom wrote to my GI Dr. Jiminez and she said she could help and come to the Children’s Hospital the following day. We arrived at Children’s at 1pm the following day and Dr. Jiminez showed mom how to burst the g-tube when it is plugged like that a very important thing to know living in the jungle! Once we were able to pull the water out the balloon came right out. Dra. Jiminez asked my mom if she wanted to put the new one in and mom of course accepted and with seconds my new g-tube was in my tummy! 🙂
Saturday I was making tiny improvements still doing weird seizure things from the Flagyl but was calming down and crying so much. My parents were giving Chloral Hydrate to help me sleep and I was at least sleeping a little bit. MJ had called my mom earlier in the week and asked if she could come see me! She came over Saturday afternoon and babysat me for a few hours while my mom and dad had an early dinner out with friends Krystal and Enrico. It was great to see MJ and she brought me a very cool gift, a tummy warmer. It smells of lavender and rosemary too! We had a nice time together hanging out and listening to songs.
Sunday we decided it was time to go home, I could recuperate at home and today was the last day of me taking Flagyl. Thank goodness…. We decided to take the 2pm and ferry and try and leave the hotel by noon. I was still taking oxygen at 1 liter and I woke up around 10:30am with a seizure. After the seizure I then got the hiccups which usually causes my oxygen to go down and we were having to worry about the portable oxygen machine!! It was time to make a decision stay another night or go for it and head for the ferry! Mom told my dad, what’s the worse thing can happen? We don’t make the ferry spend the night in Puntarenas and plug my 02 machine in to recharge fully. We went for it! We bolted out the door as fast as you can with all things I have and headed to the van and for the ferry!
We made the ferry! We didn’t run out of air and we were home by 5pm. Whew. So good to be home. Now it is about getting better!!!
Love Malia