It Hit Fast and Hard

I haven't blogged in quite a while. I've wanted to and had many thoughts that I wanted to write down, but never seem to have or make the time. With the exception of the midnight hours while sitting in the hospital with Landon, which happens to be where I find myself tonight. Landon made it almost 3 years without a "tune up" stay in the hospital, but this stay could not be avoided with at home antibiotics. I've been updating the world via Facebook, the past 24 hours, but it's too hard to put everything in a small post that gives everyone a clear idea of what is going on in our world. Some of you out there may have forgotten that Landon has Cystic Fibrosis(CF) which is a life threatening genetic disease that primarily affects the lungs and digestive system. In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs which leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients. Fifty years ago very few children with CF lived passed elementary age. Today the average lifespan is 37 years!! While we're still waiting for test results to give us a better idea as to what caused Landon to be hit so hard so quickly, we do know that he has a severe respiratory infection. Madison and I were fighting a cold a few weeks ago and it seemed that we managed to keep Landon, but this past week he began having a runny nose and minor cough. We bumped up his breathing treatments and CPT from twice daily to three times a day. This means that at least 3-4 hours a day this week Landon has been hooked up to a nebulizer or his vest. I believe around Thursday his nose began to get some color to it and by Saturday morning he had a very wet cough and an absolutely disgusting nose. Saturday night the fever started, Sunday morning he woke up sounding a little froggy and had rapid breathing. When he woke from his nap late Sunday afternoon he had begun showing signs of respiratory distress. From there we contacted TCH and late that night were admitted. This is our first experience with something progressing so quickly when we were doing everything we knew to do. It was kind of scary simply because it's been 3 years and 2 more children since we were last in this situation. Even then our last hospital stay was a planned one because Landon was having his G-button placed, you all remember Dr. G Buttons, right? All this brings us to today. Landon is wiped out!! Poor thing got little sleep last night since he and Justin spent most of it in the ER waiting on a room to become available. He is receiving Albuteral via inhaler every 3 hours, CPT every 6 hours which consists of 15 minutes of "legal beating" on his right side followed by 20 minutes in his vest, twice a day at those CPT sessions he gets his Hypertonic Saline via nebulizer and once a day with a CPT session he gets pulmozyme via nebulizer. He has also now started a nasal Saline wash which he is not a fan of so it should be interesting adding this to our daily regimen at home. He is on 2 IV antibiotics Tobramycin, once every 24 hours, and Ticarcillin, given every four hours. He's currently getting these through his 2nd IV, somehow the first one came out during the night last night, but in the morning he will be getting a PICC line as long as he continues to be fever free. While they are putting in the PICC line, they will be replacing his G-button. It normally lasts 2 years, but he's had his almost 3...it's time to switch it out.

I've always tried to be very up front with Landon on any procedure that was going to be done whether it was just getting a shot or having surgery. I don't think he really remembers when the G-button was originally placed, but this evening he had a little freak out moment and all the sudden said "Mommy, are they going to cut another whole in me?" (Insert knife and twist) I had to stop and explain that he was going to be asleep and the doctors had special tools to take out his current button and put a new one in. He would be in a deep sleep so it wouldn't hurt, but he might be a little sore tomorrow. He is so fearful about this, so I'm wondering if he's remembering a few months after his original surgery when he had to have it replaced and they did it in the doctors office without any sedation. I'm praying there isn't too much pain afterwards to possible replace the past experience. In the middle of this illness, Landon hasn't been eating well the last few day and has lost a little over a pound. This may not seem like much to you or me, but we have worked really hard the past 3 months to gain that pound and for it to be lost so quickly is really devastating for me. That pound took us from 43 percentile BMI to 22nd percentile. The goal is to get and keep Landon at the 50th percentile or higher. Studies show that no matter how bad his lung function down the road, him having a strong nutritional start is very beneficial in prolonging life. His breathing is still not good, but he's staying being between 90 and 95 on his O2 sats. He does seem to be getting a little more like himself, but still has a ways to go to feel 100%. I know this blog jumped around, but it should give you a good base to be able to update you for the length of our stay. Through it all, this little boy is a fighter and always seems to say just what I need to hear to calm me even though he has no clue he's doing it.