Malia Moore

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.

Love

Malia

Where has this month gone? Yes time does fly even when you are not having so much fun! In my last journal entry I was having seizures. They really did not let up as I was having a pretty big one every three days. My mom was thinking it was time to change up my medications as I have been on the same ones for three years. I unfortunately picked up a cold on July 6th, I was managing my phlegm and cough really well for the first week. My parents were thinking I was strong enough to kick this cold on my own without any other help, hopefully this would be only upper respiratory and not go into my lungs nor be bacterial. Mom was giving me continual respiratory therapy as well as Sofia. My PT workouts turned into RT workouts on my chest and back!

My room is like a mini hospital. I have an aspirating machine, a nebulizer machine, and two tanks of oxygen and an O2 concentrator a friend of ours has loaned to us for a little while. My parents feel comfortable that at least they can manage me on their own without having to rush to the hospital every time I get a sniffle. However, on Saturday, July 9th I had a ten minute seizure that really took its toll on me, and caused me to drop in my O2 saturation from the high 90’s to the high 70’s. Having a seizure affects not only my brain but it affects all parts of my body. What happened after my seizure was that my muscles in my lungs became weak, I was not coughing and a phlegm basically plugged my airways. It was stuck and now I am not breathing on my own very well. Thank goodness, we have the machine from our friend as I stayed on O2 the rest of the day and night. That night however, a huge rain storm blew in and the electricity went out for 45 minutes! My mom was on pins and needles, but I stayed in the high 80’s until the electricity came back on! Thank goodness or that would not have been very good!

Sunday morning I woke up and was feeling a little better however I had so much phlegm that it was beginning to be unmanageable. My parents decided at noon that we would journey into San Jose. It is vacation for the kids in school and traffic and the ferry lines were crazy. Thank goodness my parents have a friend that works at the ferry and we were able to call him and let him know we were on our way and would be showing up at the ferry at exactly departure time. He said the ferry was sold out  and that a 100 cars were in line waiting to get the next one. Not good! My parents explained that I was on a tank of oxygen and that we did not have time to wait for the next ferry as I needed to get to the hospital soon. He pulled some strings for us and we were the first car on the ferry and the first one off to leave. Thank goodness we had him to call.

Once we got to the other side in Puntarenas, the traffic was crazy. What normally takes us 1.5 hours to get to the hospital took us 3.5 hours! We were bumper to bumper all the way to San Jose. Thankfully I was only consuming a half liter of oxygen at the time. We arrived to CIMA and went straight to emergency where they were waiting for me. They drew blood, took an xray of my lungs, catheterized me and aspirated me pretty much all at once. The xray came back showing lots of phlegm but  I did not have pneumonia! We were all so happy about that! The blood test came back great my white blood cells were fine. We could pretty much rule out that it was bacterial. When they aspirated me they took a sample from my lungs to see if I had any bacteria in my lungs. Dr. Zuniga the emergency room doctor who we all love decided the best thing for me to do was to be admitted and have respiratory therapy 3 x day until I got better.

The following morning at 5am the respiratory therapist  came into to take another sample from my nose to test for viruses. I had to be aspirated again. I really dont like to be aspirated. It is very uncomfortable but I do like the massage and patting on my back that always makes me feel better and makes me cough alot so that I can get some sleep.

The next day Dra. Castro came in to tell us that my urine was showing another bacteria. Yep I have another urinary tract infection even though I have been taking a prophylactic drug for over a month now to try and avoid them. This is my third one since December. We immediately started me on Amoxicillin. The virus test came back negative so it seems like I just have a common cold. However the common cold is really hard on me and takes me quite a while to get over.

On Wednesday I had another seizure one that lasted ten minutes and this time my parents decided to give me the Diazapam (Valium) rectally to get me to stop seizing. It worked, I stopped and then slept for 5 hours straight without moving! My neuro thinks that why I have been having so many seizures recently is that I have had this urinary tract infection going on probably for a while. I did not show any symptoms of having one to my parents so how was anyone suppose to know!

We stayed in the hospital from Sunday to Friday and then stayed over the weekend to make sure I was going to be okay on my own. I still have lots of phlegm and a big cough but I am better you can see it in my eyes and attitude. Mom continues to give me respiratory therapy to help me get rid of all my gunk. We drove home on Sunday and have been home now for a week. As always, the antibiotics mess my stomach up and for the last three nights I have not slept well at all and have been very grumpy and crying alot. I have been taking tons of probiotics to help with my tummy but it still hurts. It is the worst for me to have my stomach upset. I am feeling a little better today and am sleeping more. I am almost completely over my cold. My workouts have slowed down and I am weak. It seems I take 5 steps forward, then get sick and I end up going 20 steps backward.

Sofia says I am floppy again and have to regain my head strength where I had it before. It will take time but I know I can do it. I never ever loose faith in myself. I am a tough girl there is no doubt about that!  Hopefully August will be a better month health wise!

Love Malia

Unfortunately the seizure monster has crept back into my life. For a long time, except when I was sick at the hospital he has stayed away. The seizure has changed from when I had infantile spasms. They seem to be more intense and for longer periods of time. I have had one every other day now for the past two weeks. It really scares my mom and dad. There is not much that anyone can do for me and it is hard on my parents to have to watch me go thru this. My mom and dad clap their hands and call my name real loud to try and get me to snap out of it. It has worked on a few occasions. I just really go off into another world. It is like my brain freezes. I am sure hoping they go away.

On a brighter note, Sofia has not noticed any major set backs due to these seizures in my workouts. Matter of fact Sofia and my mom were brushing my teeth this week and I did not want my teeth brushed anymore so I put both my hands on Sofia’s arm to make her stop! In my own way I told her enough with my eyes and action! That may seem like such a little thing to you but it was a huge thing to my mom and Sofia! They were so happy that I did that!!! I am thinking what are these two jumping around about! I don’t want my teeth brushed!! They do this to me everyday!!! I dont like having my hair brushed either but my mom turns on the blow dryer and I really like the noise so I let them get away with doing all the different types of brushing to me!

Sure hope I can get these seizures under control!

Love Malia

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We made it back home on Sunday afternoon. I am back to my workouts two times a day and considering the much needed break and relaxation I am working hard again! Not much going on this week! My dogs were happy to see us! What a wonderful vacation! Thanks to George and Grace for flying here to be with me on my birthday! I am already looking forward to next year!

malia

June 17th 2011