4 Days in the Hospital + 2 more

It was the beginning of a long stay

We are finally home. Yippee!! It has been a little longer than I anticipated to post about Maggie's surgery. We had a little hiccup along the way. Maggie did a fantastic job, so brave. Bright and early we went in to the hospital to get Maggie a picc line. It's a new protocol that Whit and Dr. Swoboda's team have been working on. In any surgery, you aren't suppose to eat anything for at least a 12 hour period. That isn't good for our little SMA kids to do. They start to break down their little muscle mass that they have. The picc line would be able to give Maggie the nutrients that she needs to not have that happen. She was kind of the guinea pig for this protocol so there were some bugs in how things went down. We waited a little longer for the anesthesiologist, Maggie fell asleep sitting in my arms..so cute! Woke up right before I had to give her to him, very sad. It was rather fast and I got to go back and see her in recovery. She was so sad, and cried for a good twenty minutes and then just stopped. I was sweating trying to help her be happy, I guess maybe she felt yucky from the anesthesia. They said she breathed so well on her own. Way to go Maggie!
From there we went to the infant unit, which I was very, very unhappy about. We had to share a room and although we made it through, it was not pleasant. I really dislike how things have to happen in a hospital, the long process and in that process the information that doesn't get passed along. FRUSTRATING! We did not have a good night of sleep being that our 6 month roommate's parents left for the night. A lot of crying. We also piggybacked an appointment with Dr. Swoboda, so it was a long day.
Wednesday morning at about 10:30 we left Maggie in the arms of the anesthesiologist again. It's never easy to walk away from your little one. Maybe 30 minutes after we left her, we got an update while in the waiting room that the surgeon found a hiatal hernia and remembered her umbilical hernia. So those were fixed at the same time. 4 surgeries in one...Maggie you're a trooper! 5 hours later we went to the PICU to find her.
She was already extubated and doing well. She was a little whiny and I think she was feeling the pain. She fell asleep and so we took the opportunity to run home, shower, grab some more clothes and grab something to eat. Of course while we left, Dr. Swoboda came and brought with her one of the sweetest moms of a little girl that passed away from SMARD. Her name was Makenzie, and you can read more about her here. She came to bring Maggie some leggings and a bow, which is part of her project that she has done in memory of Makenzie. I was so sad that I missed her, because I have read her blog and was actually wishing that I had some leggings for Maggie. Then she brought some and they are SO cute!!! While they were there, Maggie woke up and was upset. Sweet Dr. Swoboda sat by her bed, sang to her, and helped her calm down until she went back to sleep. We stayed the night in the PICU and the next morning with some great luck and some kind people we were able to make it the the surgical unit where Whit worked for 4 years. There was no better place to be, no better people to take care of Maggie, we were in good hands.
The rest of the stay went smoothly and we were discharged Fri night. We were exhausted, though and ready to start recovery for all of us. There are only so many nights that Whit and I can share a pull out chair. Saturday was great until the evening. Maggie wasn't sleeping well. We started down the list of things to check off.. in the end she had a fever and we were worried that it could be an infection from the surgery, which could be really serious. So at 1 am Sunday morning, after no sleep because we were watching a movie, we headed to the ER. After multiple pokes and prods, interruptions of trying to sleep, x-rays and of course not being able to duplicate the fever we had at home, at 8 am Sunday morning we were finally headed to a room back on the surgical floor. It was a long, long night for all of us. The long and short of it was it was a mystery return, but a safe thing to do. All tests came back negative, except her x-ray showed a potential for atelectasis in the lungs (which was debatable). The best part about this mini stay was the fact that we were able to have Kellee, Jonas' best friend, be our nurse. We hopefully gave her a somewhat easy day because she's due to have a baby any day. Unfortunately we didn't bring our camera for this quick trip otherwise I would have gotten a cute picture of them.
Obviously we are home now, on some antibiotics and will be visiting the hospital again tomorrow for a swallow study. We don't want to stay away too long, it's such fun up there. I'll post the stay in pictures tomorrow, there are some cute ones. For now we are home, happy and so grateful that all went as well as it did.