Maya's 1st Hospital Stay

Most of you already know now, but last week Maya had her first hospitalization. Here is the LONG story of how we got there.

From reading the earlier posts you can see that Maya had a couple of weeks of a cold, pink eye and ear infection. Well after the ear infection "diagnosis" on April 5th, her pediatrician said that if her fever didn't go away within 24 hours after starting the antibiotics, to call him. So that night she had about a 102 fever but we didn't worry. Mind you, Maya is still very congested at this time and we upped her respiratory treatments to every 4 hours or so. This includes nebulizer, CPT, drainage, cough assist and suctioning. Fun stuff. She did well about the fever Tuesday and Wednesday (topping maybe 99.5) but Thursday is when the fevers started again. We went to Dr. Bhakta again. He ordered a chest xray. It showed that she was okay - no pneumonia. The fevers persisted. They went down with Tylenol and Motrin, but kept on for days. That Friday, April 9th, I called him again and said she has now had on and off again fever for 7 days. He told me to come in and tested her for the flu and took a CBC. No flu, but blood showed she had a virus. He said that she should have fever for no more than 1-2 more days based on the day she started the fever again. He thinks Maya caught a virus about 2 weeks ago, that caused the pink eye. Thinks the virus made her so yucky that she got an ear infection. Then said that she probably got better and then got yet another virus at his office. He is almost positive Maya caught it there, but Maya is in a hospital setting everytime she goes to therapy so who knows where she caught it. Anyway, he said it should pass and to continue the respiratory therapy.

Let's go to Saturday. Charlie and I started the day out trying to get ready for Val's wedding. He left to get a haircut, while I watched Maya. First scare happened at this time. She started gagging all of a sudden. To a point where I didn't think she could catch her breath. She was afraid to throw up, but I encouraged her to do whatever she needed to do. She managed to yack up some mucous (luckily this was all over her tray from her stander). I was SO scared. Called Charlie immediately to come home. I just took her out of her stander and held her so tight. I wondered if she had a mucous plug that I kept reading about with SMA kids. Maya this was one and she managed to cough it out. Either way, I am so very proud of her strength to get it out. So Charlie gets home and she acts like nothing is wrong. I had to leave for my hair appointment, but Charlie felt okay with being alone with her at this point. She had a fever of 102 this morning. She continued to do well the afternoon so when my dad arrived to babysit while we got ready for the wedding, we felt comfortable leaving her. My dad brought Maya to the wedding and although she looks so precious in her DKNY ruffle dress I got for her, she definitely looked sick. Her eyes were so sunken. No one else could tell besides Charlie and I. To everyone else, she was having the time of her life wheeling around in her chair and dancing with her cousins. At around 8:30 we decided she really needed to get home. I met my parents back at the house at 9 to start therapy. I can't remember now if she had a fever this night, but I am pretty sure she did at this point - if not at 9, then definitely by 11 or 12. My parents stayed while we did therapy as Charlie was still at his sister's wedding. She sounded terrible, but she was stable (I thought). I looked at the clock, it was about 11 and decided to call my friend Marie. Her daughter is Type 1 and I knew she would have great advice for me. She and her husband were so thoughtful, they brought us a loaned pulse oximeter. Until now, we have been using this spot check oximeter but it wasn't perfect and didn't have an alarm. What lifesavers they were to us!!! Maya's oxygen was low - around 94, dipping to the mid-80s at times, but sustaining at 91 most of the night. All of our reading from the SMA booklets say to do cough assist and suction until the oxygen comes up. Since we didn't have Maya's baseline oxygen levels, we didn't know what to compare it to. So we decided to call the pulmonologist on call at Texas Children's. She instructed us to come in if her levels dipped below 90 for at least an hour. We felt okay with this decision. Now, I know some people may think we are crazy, maybe crappy parents for not taking her sooner, but you have to understand that we are dealing with a rare disease. We have heard HORROR stories of parents taking their kids to the ER just to have the doctors do things that counteract the SMA and then they don't leave the hospital with their child. Not a good ending is what we are saying. So, staying at home and managing her levels is what we have been educated on and told to do unless an emergency exists. We weren't trying to be stubborn, we were just trying to be extra cautious. The problem is that we don't know how to effectively manage her oxygen.

The rest of Saturday was a blur as we awoke to the pulse oximeter alarm going off every 1-3 minutes and if not the oxygen, it was her pulse going too high from the fever. TERRIBLE night. Of course Maya wakes us Sunday morning in a great mood, like nothing ever happened the night before. That is our Maya for you. But she was still very congested all day. My parents came during the day to babysit while Charlie and I made up some sleep. Sunday night was more manageable and way less stressful with this new pulse oximeter doing all the work. It did go off every now and again, but not as bad as the night before. We are thinking the rigorous respiratory treatments had something to do with this. Her highest fever on Sunday was 103.7.

Monday, April 12th I canceled Maya's PT appointment since she was still having fever. Yes, still had fever! This would put her at 10 days. We went to the pediatrician at 10 that morning. He did another flu test and another CBC. Flu was negative and CBC showed she still had a virus (same levels). What bothered him a little is that Maya's ear infection had not cleared up as much as it should have. He decided that we didn't want to take any chances and to give Maya the antibiotic shot (starts with an R and I can never remember the name of it). He also prescribed a Z pac. He said the Z pac would cover whatever the shot didn't. He wanted to see Maya first thing in the morning. So we got home got lunch and Maya was taking a nap. During her nap, my dad got there to help me, and we noticed a noise on the monitor. I went to check on her and Maya was moaning and shivering. I was so scared. I quickly scooped her out of her crib and just held on to her very tightly with blankets. We woke her up to get her temp and give her Motrin. She had a 104! She fell back asleep and I started counting her breaths. I think I counted between 50-55 breaths per minute at one point. But all this and she was calm. She didn't seem to be in distress and her oxygen level on the pulse oximeter was stable at 92 to 94. I called the pedicatrician and told him about Maya's high fever. He said that the shot should kick in anytime. I told him that if she either had high fever or low oxygen that night, that we were going to the ER. He agreed.

Monday night when we put Maya to bed, her Gigi slept next to her for a bit. My dad decided to stay with us, too. He was quite spooked about today's events and Maya's breathing. Gigi called us and said that Maya's breathing was quite coarse. Her alarms kept going off. After about 20 minutes of Maya's oxygen going to 88, we decided to go to the hospital. I called Dr Bhakta and let him know. He agreed and called TCH to give them a heads up on Maya's past week and fevers. As we packed for the hospital, another 45 minutes and Maya still had not gone over 88 oxygen levels. She was sleeping this entire time. On the way to the ER, she was asleep still, but upright in the car seat and maintained a 92 level all the way there. I think we made it to the ER by midnight. By 1, they had us in an ER room and the doctor decided that because of her history of fevers, severe congestion and her SMA diagnosis, she needed to be admitted for at least of couple of days. They ordered a chest xray, which took FOREVER! I think they finally took it at 3. It showed she was developing pneumonia. They also took the rapid flu test, which showed negative for flu, RSV and adnavirus (sp?). By 4 Maya was on an IV getting her first dose of antibiotics. We still did not have a room. We were all tired as you can imagine. I sent my dad home around 1 that morning, my mom and stepdad left at 3:30 I think and were left with Gigi, Charlie and I. We finally got a room at around 6 am. And finally were able to sleep at 7 am.

On Tuesday we met with the pulmonologists. They showed us where the pneumonia was on the xray. It was a mild case, but given Maya's inability to cough it out effectively, it was necessary to keep her under a good watch. Besides, we needed to get her on the antibiotics and keep her hydrated. By this time, Maya had stopped drinking and eating since Saturday. We discussed Maya's previous sleep study that showed that Maya may need to be put on BiPap (to assist her with her breathing). We didn't realize it at the time, but this could help her immensely at night and keep her oxygen levels at a normal level. The doctors decided that they would move Maya to the PCU floor that night and try Bipap on her. Apparently, the Bipap necessitates a quicker response time and staff that can support that. We were okay with this decision and decided that after the hospital visit, Maya needed a Bipap for the house. Later that afternoon when the docs came back, they informed us that Maya actually had RSV. This would explain alot of things over the past 1-2 weeks. The high fevers, the ear infection, and the pneumonia. Since RSV is a virus, there is no medication and you must let it runs its course. RSV is very contagious and they said she could have gotten it from anywhere. We could have carried it from the office by touching a door handle and then giving it to her. Or she could have caught it at therapy. Who knows but they said it was extremely easy to catch out of several viruses. We decided with the docs that with the RSV and the pneumonia, Maya did not need to have additional stress by testing out the BiPap machine. Plus, her oxygen levels had become stable at this time and they felt like she would be okay staying as is. We continued the respiratory treatments and even learned some new tricks for suctioning Maya.

We were released on Thursday. Maya's fever never came up past 100.5 in the hospital. She was breathing alot better and the congestion seems to be thinning out. We were told to continue the antibiotics and treatments at home for the next 7 days. Maya was to visit Dr Bhakta the next day and her pulmo in 2 weeks. We still have plans to go to Salt Lake City at the end of next week, but we shall see. Maya of course hated the hospital. You don't actually get much rest there. People are in and out all the time. Even in the middle of the night. She cried so much. She got so sassy that she told everyone bye and thank you even before they came in the door! She did have some friendly visitors (candy stripers?) that brought in crafts at night so we could pass the time. Maya is now into everyone else "doing it first". So anytime we had to do anything for her treatments, we all had to take turns putting the mask on our mouths or putting the suction near us. Daddy first, mommy first, Nani first, Gigi first and so on. Until the room was clear. She took this new procedure home with her and we now have to do this at home. Good times. Mommy gets suctioned everytime....

Charlie and I are so very proud of our Maya and all that she put up with at the hospital. She really is such a special little girl. She always asks for hugs and kisses and to cuddle. How cute is that? She doesn't fuss at all at the nebulizer anymore and even holds the mask close to her tightly. She often falls asleep during the CPT. For some reason, she has been fighting the cough machine, but probably because it is around the clock now instead of just twice a day. She is absolutely still very afraid of the suction machine. No matter how much we sing during this process, we end with lots of tears and sweat. My poor little Maya.

I know this was quite the long story, but we wanted to document it for us, too. Charlie and I knew this time would come. Glad that it wasn't a 911 call....we feel blessed that Maya is getting better. Charlie and I are now better prepared for how to handle Maya's respiratory care. Getting that pulse ox was quite a blessing. It took over a year, but only a day once she was this sick. I'll leave you with a few pictures of Maya in the hospital....