These past few days have been anything but fun. They were full of highs and lows. It all started Friday. Molly's baseline is slightly congested so when she's getting sick it's a little hard to tell. The tell tale sign is she will usually only eat yogurt for her meals but she was eating fine, in a great mood and everything was normal but she was developing a cough that was more than her baseline. She woke up Saturday morning and felt warm so I checked her temperature and she was warm...101.02, so I decided to take her to the pediatrician. I really do not like taking her when I know her pediatrician isn't there because her baseline for everything isn't like ours. They don't know what they are listening to when they listen to her heart and lungs. It's not their fault, she's just different. But her temperature was higher than we felt comfortable with so I took her in. We saw the NP and she listened to her, asked me if one side of her lungs sounds different than the other and went to read the doctors notes on how she sounds when she's not sick. She told me that she feared Molly had pneumonia. She gave me the option to go home on an antibiotic or go for a chest xray. I chose the chest xray. So we headed to Boston Children's Hospital where she had a chest xray. The on call doctor called me while we were there and told me it was negative for pneumonia but to give her Tylenol and start her back up on her inhalers every 4 hours so that's what we did. I was so relieved. We went home and chilled out. She took a nap which she NEVER does. Later that night we checked her temperature again and she was very hot...103+ so we took her to the emergency room. When we are rushing to get to Children's it seems like the longest ride ever. They checked her temp, oxygen and took us right back. Since pneumonia was ruled out earlier in the day they started her on ibuprofen which we don't like to give since she is already on Asprin but in this case it worked and it worked well. They said she probably just has a virus and it would need time. We were discharged from the emergency dept around 1am. We made it home around 2am.
Sunday was a normal day. I stayed home with Molly while Jay ran some errands. She was have a good day considering she wasn't feeling good. She fell asleep on the couch pretty early and while she was asleep I hooked her up to the O2 monitor and her oxygen was a little low. We watched it continue to drop and made the decision to go back to the emergency department. She also wasn't drinking that well and she only had one wet diaper all day so we figured she would probably need some IV fluids (we were definitely missing the g tube that day). They took us right in again. Her oxygen was 93 and her temp was 103.2. This time we didn't even wait for a doctor. He came right in. Since pneumonia was ruled out they thought maybe a UTI. They also wanted to check her for RSV, the flu, check her white cell count and to see if there was any other bacterial infection. They also wanted to repeat her chest xray to see if anything had changed in 24 hours. And then the torture began. She was not happy one bit when they did the culture for the UTI. Since she isn't potty trained yet they had to use a catheter. Then they had to place an IV...cardiac/Heterotaxy kid+dehydration does not equal a fun time. They finally got the IV, started her on fluids and antibiotics. The cardiac fellow came in and listened to her..for about the 1000th person to listen to her. She said that she heard something in her lungs and she was pretty sure it was pneumonia despite what the xray said the day before. Whether it was pneumonia or not she was being treated as if she had it.
We were finally admitted and sent up to the good ole 8th floor. It was late when we were admitted and Molly fell asleep pretty quick once they were done getting her settled. We were up a lot through the night. At one point the nurse came in and woke her up because he was trying to put a nasal cannula on her for oxygen. Her oxygen level dropped to 80. Once he woke her up she would go back up to the 90s. She ripped that cannula off her head like the crazy person she is. So no oxygen for her. Of course now I couldn't go back to sleep because I was obsessing over her numbers. All day yesterday she was great. She was playing, ate 2 yogurts, was drinking better. She was starting to fall asleep around the time Jay was coming in. She sat up and I looked at her hand. Her fingers were blue, her hand was hard and cold. We figured the IV blew so we brought the nurse in because she had fluids going into the IV and it had been going into her hand instead of the vein. Her hand was so puffy and sore. Once they got the IV out it started to drain a little bit. She had a cardiac resident, 2 nurses, the IV team and 3 plastic surgeons look at that hand. Good thing we're not the only ones who over react : ) It's already back to normal.
By Monday night she was just about back to herself. Her numbers all looked good, she hadn't had Tylenol since 6:30 in the morning, she was playing and laughing and even starting to eat a little bit. Jay had left and Molly fell asleep. I thought it was going to be a quiet night to myself but I was wrong but this time I was happy to be wrong. Molly woke up around 9:30 and was up until after 1am. She was being a goof ball, playing, laughing at her TV shows and I couldn't have been happier to have my little girl back. Once she finally fell asleep her oxygen sat around 90ish but never went below. The next morning during rounds I was so happy to see that the attending was someone that knew us. He was a fellow when Molly was in the CICU. He saw no reason to keep her any longer and knew that if she had to come back we would bring her but didn't think we would have to return any time soon. He was so happy with all of her progress and how great she is doing. We were discharged around 1pm yesterday. We made a stop off at the pharmacy to pick up her antibiotic that she will be on 3 times a day for 9 days because she is being treated as if she has pneumonia. Luckily she is really good about taking medicine and we never have to fight her to do it.
She's ready to go home now!
Our visit to Children's wasn't all bad. While we were hanging out on one of the days (they are all a blur) her cardiac surgeon, Dr. Emani, walked by and was surprised to see us so he came in and was truly amazed at how great Molly is doing and how fantastic she looks. It has been a very long time since she has seen him. There were many days that he came to check on her with such sadness on his face so to see him happy made me want to give him a big hug, tell him I love him and how he is a true miracle maker. If anyone else had operated on her, who knows if she would be here today. He said that he finally got to see the rock star live and in concert! How happy and proud he must've have been to turn a little baby clinging on to life into this normal, healthy little girl! Truly amazing!
A nurse from the Cardiac ICU came to our door. She had never taken care of Molly but when you are there for so long, everyone knows who you are. She had heard we were there and wanted to stop by and see her and she too was amazed. She had a student with her and said that she felt it was important for the students to see how great the outcomes of some of the kids can be. She came back about 20 minutes later with 10 more students and asked if it was OK if they chatted about Molly, her history and original diagnosis and of course I said yes. I never ever get sick of hearing how wonderful she is doing, especially from all of the people that saw her once upon a time.
One of the social workers also came by. She said she was going to reach out to me because they are starting a parent to parent mentoring program. They put parents of the kids in the CICU in touch with parents that were once there. They give advice, tell their story and help them with any situation they face. If a child was in need of a gtube or trach and the parent was struggling with the decision we could help them and tell them about our situation. The doctors explain it all to them but it's different coming from a parent. I agreed. I couldn't have agreed fast enough. Any time I can help someone that is or was in our position makes me so happy. This life is anything but fair. It gets to be very lonely at times. Especially when a lot of people have moved on without you. As much as I don't like going to Children's when Molly is sick, it really does feel like home.
Thank you for all of the continued love and support. Without you, we would be nothing!
Kerry
