Flu + Pneumonia #2

Last Friday (2/11), Maya had a high fever so we took her to see Dr B and of course it is the flu. Not surprising considering she had starting coughing a couple days before and it is everywhere right now with three other cousins with the flu as well. She had very high fevers, as she always does, on Saturday topping 104.5. Night one of contemplating the ER. Sunday her oxygen levels were the concern. Her pulse ox alarm sounded once at 89 (note it needs to be 100). She was sleeping at levels of 90-92. Second night of contemplating the ER. We managed to keep her at home, do lots of respiratory therapies and get her fever down and oxygen up. Several sleepless nights, a few mommy breakdowns and a baby Kaden at his Gigi's house to avoid the plague. 

Flashforward to Monday, Tues, Wed and Thurs (2/14 to 2/17) as Maya started getting better and better each day. Monday, Valentine's Day, was her last day of a real fever. The next few days were very low 99-100 range. I finally even left the house on Thursday to run some errands after feeling comfortable about leaving her. I had to skip my first week back at work from maternity, but needed to be with Maya. I was about to return to my own bed Thursday night when we noticed her oxygen levels coming down again. We did the ritual, cough machine/suction, but not coming up much. So I literally set my alarm for every 20 minutes to check the pulse ox. The alarm is set to go off at 89, but really you need to cough her below 95 to clear the airway.At 3 Kaden wakes up to eat and I notice Maya is hot...102.8. Crap! Oxygen levels low, weak coughs, fever after several days = pneumonia watch. After a mid-night respiratory therapy, we headed to Dr B bright and early 8 am. By the way, Maya's pediatrician is the best ever. When Maya is sick like this, he gives us a standing appt to come in anytime. He calls the house in the evenings to check on her, especially on days he hears me crying :-(, and just does whatever we need to get Maya better.

Friday morning at Dr B's office, Maya gets flu test, RSV test (both negative), CBC to check white blood count. Not really sure what the WBC level showed him, but her oxygen level was 95 and nothing higher (note that it went all the way down to 90 on the car ride over there). He immediately called her pulmonologist and discussed the options. He mentioned a chest xray (which was a no brainer to us anyway), and perhaps a trip to the ER. That got me. Immediate breakdown right there in the pediatrician's office and right in front of Maya. I knew that he was thinking pneumonia and just hearing him say ER scares me so much. To those not familiar to SMA, pneumonia is like the worst scenario. Well, okay, maybe not the worst, but it is really up there as very very bad in SMA world. The chest xray showed a mild pneumonia in her right lung. We went back to Dr B and he consulted with her pulmonologist. They (we) all decided to keep her out of the hospital, give her powerful antibiotics at home and continue rigorous respiratory therapy.

Friday night we also started Maya on a Z-pac. The different antibiotics are supposed to "cover all bases". She had a pretty good night Friday night, oxygen from 94-96 while sleeping, but it was 97-98 by the time she woke up. Saturday during her nap she was sleeping at 95-97 and awake between 97-100. Plus her appetite came back some and so did her energy level.

Lots of facts up here, but we have to take a moment and talk about how WONDERFUL a patient Maya is. She is sooooooo good about all this stuff we are making her do. She says I love you to us like ALL day long. On her machines, she actually asked to use the cough machine a few times. She finally realizes (and us too) how much this machine really helps her fight illnesses. The suction machine, she would cry and freak out if we turned it on. Well in just a couple days time, she doesn't mind it at all. We let her suck the "boogies" down with clean water and so she looks forward to that part. She hasn't minded the pulse oximeter being on her toe for a while now, so this illness wasn't anything new on that front. The nebulizer, she freaked out at first, but within day she was ignoring that it was even on. And finally, we introduced a new machine called the Smart Vest. It literally shakes her to break up all the gunk in her chest. She loves this new machine. Actually, she tells us to keep it on longer than the 30 minutes we started on Friday night! A few little conversations that have to be repeated at every treatment: 1) she asks if she did a good job and we tell her she did a great job, so the next time she will say "i did a great job..you know that?" 2) "It doesn't hurt?" She asks this when we do nebulizer, suction, pulse ox, etc. She knows it doesn't, but she likes to ask anyway and get our reassurance. We don't mind. She deserves a cheerleader during these times. 3) "did you see my bobos?" Maya likes to keep her bandaids on sometimes just so that she can tell everyone that she got stuck or got a shot. How sad it is, but again probably her way of telling herself she is okay with what is going on. 4) She tells us after doing therapy that she will "get better" from doing all these "shenes". We reassure her all the time that the machines are here to help her recover. But of course, there is the Bipap - the blue mask as we call it. That machine cannot even be in the same room as her. But that is the very machine that will help her breathe. We are in training on the BiPap and every chance we get we talk to her about how great it is and how it will help her breathe better and sleep better. She says okay at the time, but then two hours later, she freaks out about it again. I know this part was long, but Charlie and I cannot say enough great things about our Maya bean. She really is an amazingly patient little girl when it comes to all the therapies. I couldn't do it. That is for sure. She is a blessing. We pray she gets back to normal Maya real soon....