Archive for July, 2011


Sunday, July 24th, 2011

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