Doctors and more doctors!

August 1 2011

Day 1

We are headed into San Jose to take another sample of my urine to make sure the bacteria has completely gone away. We also have scheduled to see my neurologist, ophthalmologist, pulmonologist, gastroenterologist, and to do testing to make sure my kidneys and bladder are functioning correctly. We arrived to San Jose around 2 pm, and went straight to CIMA. We went to emergencies to have me catheterized  so we could start the process of the culture on my urine. The nurse there, was not the usual one who catheterizes me and quite frankly did a terrible job. She stuck me 6 times. It was very uncomfortable and I was very unhappy about this. Once she got in she then let the hose loose and pee went all over the gurney and only a few little drops of pee got in the jar. Fortunately, the lab does not need a lot to do the testing. My parents were not the happiest about the procedure this time. Where was Carmen? She always does a great job!

We then left for the hotel to relax a little bit before going to my neuro appointment at 5pm. Dr. Luna was glad to see me. My parents had sent him a video of my latest seizures and he was actually happy with them. They are no longer infantile spasms but partial seizures. This means that only one part of the brain is being affected and the symptoms I have depend on which part of the brain the seizure is happening in. Dr. Luna explained that infantile spasms  would shut down the brain whereas these new seizures are only affecting a part of the brain and not all. So I guess if your neuro is satisfied with these seizures so should I. Obviously the goal is to not have any at all, but then that is nearly impossible since my brain is almost completely smooth.

Day 2

Today was a holiday in Costa Rica, so  I did not have any Dr. appointments. Sofia came to the hotel and we worked out together while my mom and dad did some shopping.

Day  3

10:30am I had to go in to be catheterized once again. This time I was taken to the x ray room where a doctor would watch me pee while being xrayed. They filled my bladder up with a dye solution then watched on the big screen. They were wanting to see if I was refluxing my urine into my kidneys because if I was this would cause urinary tract infections and can be very serious. Fortunately, I  am not refluxing and the doctor who catheterized me was a pro and did it on the first try! Thank goodness! We have now ruled out that I am refluxing and retaining urine in my bladder. We decided that I was not retaining urine in my bladder as we catheterized me again just after I had urinated to make sure I did not leave any urine in my bladder. The docs are scratching their heads as to why I am getting so many urinary tract infections when everything is working properly.

11:30 We went to see the Ophthalmologist. I had my eyes dilated and tested for tracking and the doc said I was tracking well but that I needed to keep the patch on my good eye in order to work my lazy eye. She augmented my glassed a little and now I am seeing even better than before!

12:30 Break for lunch

3:45 pm Met with the Pulmonologist for the first time. Turns out he was the same Doctor that attended to me when I was in ICU at Children’s hospital. He is a very nice man and my parents were very happy with him as well. We talked about my upcoming plane ride to Texas and whether or not he thought my lungs were up for the trip. He thought my lungs looked pretty good but is checking into seeing whether or not they can test me at 19% oxygen before leaving on the plane as that is what the O2 is once we are in the air. There is also the possibility that I might get inflight oxygen for the ride to Texas. We have not decided on that yet. We did not get out of that appointment till 5pm and are now headed to the hotel for dinner and rest! What a long day!

Day 4

10am Met with Geovanny my Physical Therapist in San Jose. We worked out for over an hour. Geovanny was happy with my progression since the last time he saw me in April . He is also making me  a stand to put my new chair on so that I can be at the same height at the dinner table. He is quite creative and very nice. We had a good workout together.

3:45 Met with my Gastroenterologist to change my gtube. Sofia came along with us and videotaped it as my mom was the one who actually changed the button. However since we only change it once every six months mom and dad have a hard time remembering all the steps so Sofia got in on tape and now we wont have to come to the doctor to do it. It is pretty easy and it does not hurt me at all. My mom did a great job! We arrived to the hotel at 6pm just in time for dinner and bed. We are headed home tomorrow on the 2pm ferry. We are all looking forward to getting back home.

Whew, I am a tired little girl. Besides from seeing doctors all week the rode trip is always tiring. I am not complaining though I am just ready to be back in my butterfly bed.



One Response to “Doctors and more doctors!”

  1. Granny and PaPaw says:

    Malia, I have enjoyed spending time with you and your parents so much while we have been there. Unfortunately I had to leave to go back to my teaching job. Papaw has really enjoyed spending time with yall also and he has gotten to stay longer to work on the house and to get to see you too. We are very proud of how hard you work and how much you have progressed in three short years. We are looking forward to seeing you very soon. Love you Granny and Papaw.

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