4/1

I am back! I truly apologize for not updating the blog since March 4th. Things with Peyton started to slow down and things with my work started to speed up. I felt like I did not have enough time in the day and unfortunately the blog fell to the wayside. That being said, we are doing great. Peyton has been discharged from the hospital with follow up appointments with each of his respective teams. In a nutshell this is what has been going on in the last few weeks.
-We were discharged and began learning how to use the G-tube and caring for it at home. The first night home the machine was not holding a charge and died. We contacted their customer support team and they had one delivered to us at 1:00am. It was frustrating and scary but we made it through! The G tube is going well and Peyton has adjusted nicely.
-Dylan got the GI bug not once, but twice. Poor baby. The first time she began throwing up in the middle of the night and continued into the next day. It was a few days until she was herself again. Most recently she got it two weeks ago. She started vomiting on a Saturday and I woke up Sunday morning around 12:45 am to take her temperature and find it was 103.8. I took her to the Winchester ER where they had a read of 104.5. We were there for a few hours, got her temperature down and were discharged. She has since become herself again:)
-Peyton got C diff again starting end of last week. Jennings team called in another Rx for Venco which we started him on Friday evening. I am just now beginning to see minor results.
-Peyton had an MRI done of his lower spine. They found a fatty phylum at the tip of his spine. This can later present itself as tethered spine. We had a urodynamic test as follow up.
-The urodynamic test was done. They stuck a catheter up his penis, an electrode up his rectum, and a needle in his scrotum. They were measuring his urine input and output along with his neurological reactions to certain things. The test came back normal.
-Peyton had a EGD done where they put him under and go in and reassess the esophagus. They were ready to dilate if necessary. They were happy with the size and dilation was not needed at this time. They said that all looked good! They took a biopsy of his esophagus so that we have something to compare to later on if necessary.
-We had a follow up appointment with neurosurgery. We talked through the options. We have two options- preform a tethered spine surgery where they go in through the spine, remove the fatty phylum and cut the ligament at the tip of the spine. This is done prophylactically. Our other option is to wait and keep doing urodynamic tests. If the problem worsens, do surgery. We are opting to do surgery in a few months.
-We are waiting to hear when our modified swallow study is scheduled for.
-We met with ENT and they scoped him to assess his vocal chords. They said his left vocal chord is wobbly but showing progression. They feel that with time it will regain full strength and use. Peyton's voice has become as strong as Dylan's at this point which is reassuring.

I think that about sums up the last few weeks. It has been extremely busy! We will continue Peyton's care through Dr. Jennings team at Boston Children's. I will periodically update the blog with news and pictures. Chris and I greatly appreciate everyone's support through this time and we could not have gotten through it without you. Thank you and we love you all. xo