Day 33
I write to you from a dimly lit hospital room, sitting crossed legged on the pull out chair that has been my bed for the last month. Three feet away from me, Maliyah is sleeping comfortably, and outside our door the nurses are busily handing off report to the next shift. It’s been 33 days and we are finally seeing light at the end of the tunnel! Thankfully, we’ve had some slow but steady improvement every day. Each day Maliyah walks a little bit further, plays a little longer and laughs more frequently. She’s starting to be more affectionate - this is something that has been slow in coming. “I love you’s” and kisses were very hard to come by, and while I understood that she was very sick, I was overjoyed today when she gave me an unsolicited kiss!
Today, was a monumental day. Maliyah finally got her NG tube out of her nose! It’s been a source of lots of tears and pain from the many times I’ve had to retape it to her cheek. I’m super excited but also a bit nervous about how she will do with it not in place. Once it was removed she was so very happy. I just hope and pray that we do not have to put it back in place. This morning after we pulled the NG tube, there were talks of a possible Friday discharge! I’m trying not to get too excited because literally anything can still happen. If she is able to keep her NG tube out and not spike a fever it may be possible.
Going home with her after this admission will be a little different picture. We’ve inherited a new set of challenges. Maliyah’s digestive system is not back to what it was prior to her gastric perforation. This is kind of hard for me to handle as we were just about off of TPN before. We are now on 100% TPN dependent. She is still only able to tolerate a limited amount of clear liquids and have not been able to increase her intake or progress her to solid food. I’ve been talking with the team about the possibility of using a motility medication to help boost her system. Her temperatures have been trending down in the last week but have been hovering in the 99’s-100’s, but even as I am typing this the nurse just came in to check her vital signs and her temp came back at 101.4. This is the highest it’s been all week. What this means, I am not quite sure. It may be an extra few more days than we were hoping for. Friday’s discharge most likely will not happen now…
This journey has definitely had it’s ups and downs and they have not been easy. I found out that 1 in every 3 gastric perforation cases do not make it. We almost lost her….A couple of days prior to this incident she had grown tall enough to climb up the rock wall at our neighborhood playground. She was one proud girl as she easily climbed to the top. I guess you could say that with her diagnosis we are always threatened with the possibility of disaster even while things are going good. Like a hovering cloud it’s always there, we may come face to face with death in a moment notice. This was one of those times.
If you have made it this far in my ramblings, I urge you to don’t take for granted those that you love. Be a little more patient, hug tighter, and say “I love you” more often. Treasure the little moments and make each day count. In the mean time, our little miracle fights on.
