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Our Patient, Patient

From Kate:


Since the race time has yet to slow down. We all had a great time at the run, Getty especially. It is not often that we are able to get out during the cold winter season, but we always make an exception for that one Sunday in February. We have been lucky enough to have five straight years of beautiful skies. Albeit cold, but clear none the less. 🙂

Right after the race it was business as usual. Getty got right back into the routine of each day. School is 8:00 am-1:00 pm everyday. It is a full day and one that sometimes tuckers her out and sometimes just boosts her energy into a higher level after. It really depends on the day.

This past Sunday, Getty was feeling a bit off. She did not nap, which was not alarming, but she did seem tired and just spent. We monitored her and nothing really changed until later in the weee hours of Monday morning. She woke up around 3am and just did not feel good. Her nose was stuffy and she was uncomfortable. Her heart rate increased but her oxygen did not decrease at all.

Getty has not been sick since her illness back in June of 2011. Literally nothing! Nada! I wish I could put my finger on exactly why Getty has not fallen ill. I am sure there are a whole bunch of little reasons that make up a big reason. We have been fortunate, blessed, and honestly lucky that Getty has not gotten sick. We limit her exposure to people and places unless we are completely sure we are in as close to sterile environment as we can. So only outside locations. Not around sick individuals. We follow extreme cleaning protocols in the house, and adhere to extreme measures if someone in the house gets sick. Her diet gives her some great nutrients, immunity boosting, and overall comprehensive supplements that give her  a sporting chance to fight germs. She gets ample amounts of sleep and chances to relax and rejuvenate throughout the day. Getty receives two to three, one hour long breathing treatments that help support a healthy respiratory system and clear her airways. SMA is tricky. Once a child looses the ability to swallow and cough on their own, things get a bit complicated to say the least. We use several different machines to help combat increased secretions and the chance of aspiration. Suction, cough assist, percussion vest, and bi-pap are all vital machines Getty uses on a regular basis. If sickness is apparent, all of those machines become extremely vital to getting the junk out and keeping her safe and healthy.

We were not sure what type of illness Getty had, but we did know how to treat the beginning stages of any illness for the most part. Increased breathing treatments, checking temperature, monitoring heart rate and oxygen, administering antibiotics in the case that it may be bacterial, adding Motrin or Tylenol if uncomfortable, figuring out whether her nutrition needs to be altered due to the possible slower movement of digestion, watch overall mood, and try very hard to get her to answer yes and no questions. Since Getty is non-verbal and sassy (sometimes not the most helpful combination in situations such as this)), it is often difficult to obtain an answer from her. I knew by Monday morning that she was not feeling good. It is not often that she looks me in the face with such determination and focus to offer a yes answer to my question of whether she is feeling bad. I can’t tell you how much I appreciate the ability to read her. Her eyes told me everything. “Fix this Mom!” was pretty much written on her face. So off Getty’s entire village went to fight this thing with 100%.

One thing I learned from Getty’s illness and hospital stay in June of 2011 is that slow and steady wins the race. So I took that advice and vigorously fought this illness with patience and resolve. 🙂

Monday and Tuesday were full of breathing treatments, sleeping, medication, tons of liquids, and quite a bit of movies. 🙂 I kept Getty out of school (even though school is from home) I wanted to make sure she was getting healthy and not distracted by anything. I know she will be able to catch up. I just wanted to be able to monitor her progress, isolated from distraction. Illness can turn in a second and I wanted to make sure all of her machines were accessible if something were to change.

Today is Wednesday and Getty has been so incredibly patient and getting better slowly and steadily. We are still aggressively treating her illness and will until everything is back to baseline. She seems a bit more upbeat today then in past days. Her heart rate has significantly decreased to almost normal levels. Her secretions have changed a bit. They are not as thick as they were on Monday. Her temperature spiked to 102 on Monday afternoon and thankfully it decreased back to normal. Still giving antibiotics and will continue to for the next 8 days. Liquids, liquids, liquids.

I want to thank those that have kept little lady in their thoughts. Getty is a fierce fighter and she has really turned this illness around quickly. I know she misses school and we are going to try to tune in tomorrow if all things are looking good in the morning. Fingers crossed. 🙂