As we continue on down the path of recovery, Emma continues to have ups and downs. While we as parents would love for things to get better each day and the progress be quick, that isn’t always the case. Emma had a good day on Saturday. She was up more and ate better. I left the hospital Saturday night feeling that Emma was doing better and feeling hopeful that Sunday would be another day of progress.
Emma woke up Sunday and wasn’t in as good of mood. She seemed to be uncomfortable throughout the day and didn’t eat or drink well yesterday either. It wasn’t that there was anything alarmingly wrong, she just didn’t seem as good as she had been on Saturday and was very uncomfortable. She didn’t have Tylenol every four hours the night before so the nurses wondered if maybe we were a little behind on pain meds. She took her pain meds and went to sleep. We hoped that a good night of sleep and keeping up on her pain meds over night would help her to regroup and feel better in the morning. Emma didn’t rest well last night. She woke up around 3:00 screaming and was inconsolable. She continued to cry and whine and seemed to be having a difficult time getting good deep breaths. Finally after doing this for an hour the nurse called in the charge nurse and they decided to page the resident to look at her. All of her vitals were strong, and her lungs sounded good, she just couldn’t get comfortable and get good deep breaths even with repositioning and holding her. The resident ordered some blood work to rule out any metabolic problems. Eventually after another dose of pain meds and lots of cuddling, she finally calmed down.
When Emma woke up this morning, she continued to seem uncomfortable so the doctors ordered a MRI vent check to make sure her shunt was working. One of Dr. G’s partners, Dr. Wharf, came to see Emma today and he felt that her vent check looked good and that the shunt was working properly, which is good news! He also wondered if the reason Emma had been more uncomfortable was a combination of getting behind on pain meds after such a big surgery and that Emma had quit steroids on Friday night without tapering them off. Because Emma had been so tired the day after surgery in the ICU they had decided to give her bigger doses of steroids for a shorter time instead of gradually tapering the steroids off over a longer period of time. So he put Emma back on steroids to taper her off hoping that would help. He said he didn’t know for sure if that was the issue or if it is just that she had a very big surgery less than a week ago and just needs time to heal. The good news is that after a dose of steroids, a few doses of pain meds and a big nap this afternoon, Emma seems to be feeling better this evening. We are so thankful to see more of our sweet girl’s personality and that she seems to feel more comfortable, we just wish she could do it without the steroid. She even drank a whole cup of milk this afternoon. Way to go Emma!
We continue to be so thankful to everyone for their continued prayers and support. It has been a very long week of sitting in the hospital and not knowing what would happen next. All of your prayers are what has kept us strong for our little girl.
As we have sat here this week watching our sweet little girl fight each day to recover from this surgery, we are reminded of what a long road this is and that there are entirely too many children having to fight like Emma is every day. Two years ago we were happily enjoying labor day weekend with our family without many worries. I certainly didn’t realize the number of children and families who were being affected by pediatric cancer, and I didn’t think that we would ever be one of those families. So many times we take for granted that our children will be healthy, unfortunately that isn’t the way things work. This disease doesn’t discriminate, it affects entirely too many children.
Today is the first day of September, which marks the beginning of Pediatric Cancer Awareness Month. Over the last year and half we have met so many other families fighting this horrible disease. These children are some of the strongest and toughest kids you will ever meet. Instead of just being kids, they fight everyday and go through treatments that make them sick and leave them with other awful side effects. These children may be small, but they are the strongest of warriors. Two years ago I didn’t realize how little government funding is given to help find a cure for these kids either.
As I walk up and down the hallways at the hospital this weekend and as I look at the Facebook news feed filled with messages of awareness by all of the amazing families that we have met on this journey, I am once again reminded of the importance of raising awareness for this awful disease. We must continue to raise awareness and fight for a cure so that these kids don’t have to fight so hard. So many of you have already done so much to help raise awareness and join this fight with us. We thank you for all you have done and continue to do. We ask that each of you take time this month to help spread awareness in what ever way you are able. Tell Emma’s story to neighbors or to co-workers to make sure that they also are aware of the help that is needed for Pediatric Cancer patients. Together we can and WILL make a difference for all of these little warriors!
Thank you for all of your love and support. God bless you! EmmaStrong!!!