1 step forward, 2 steps back
It’s been almost 3 weeks since we’ve been discharged and the days have kind of blurred all together. It’s been quite an adjustment having Maliyah hooked up to TPN for 17 hours. She usually gets unhooked at 10am and hooked back up around 5pm. When she gets unhooked she dances around for a few minutes because she is free from her lines and backpack. Depending on how Maliyah is feeling, we try to make the most of the time when she is unhooked by playing at the playground, going on little outings or taking her fishing for the first time ever. She’s mentioned a few times that she is so glad to be home. I often wonder what is going on in her mind and how this traumatic event has affected her. One thing both Adam and I have noticed is that she has become so much more affectionate. She loves to give big hugs and kisses and will show small signs of love by gently caressing my cheek or patting my back. We’ve been soaking all of this up. I wish that you could hear her conversations with us. She has such a great sense of humor but also a fiery spirit mixed with a tender heart. She loves to tease and do things to make you laugh, but also has a depth of understanding that surpasses her young age.
To be honest it’s been quite a rollercoaster ride since being back. Since arriving at home, our house has become an extension of the hospital. We have been on high alert noticing every little symptom that seems abnormal. We check her temperature at least 3-5 times a day and have been in close contact with Maliyah’s surgeon and his team back on Oahu. I also have an emergency bag packed to go, incase we have to rush to the hospital.
It’s been hard not to get discouraged when things don’t progress the way you had imagined. The second week we were home Maliyah was able to start eating small amounts of food and drink fluids, and I was getting quite hopeful. That next weekend her belly button and her left laparoscopic incision sites started oozing pus and not long after that she stopped being able to keep any fluids or food down. This whole last week has been pretty discouraging for me and it’s been a new set of challenges. After not eating anything since Monday I tried once again this morning by giving her 4-5 small bites of mango and about 2 ounces of juice. During church, Maliyah started complaining that her back hurt and then not long afterwards threw up what she ate for breakfast. This afternoon, she again complained that her back hurt but then fell asleep for a nap. I heard her crying about 30 minutes later and she had thrown up all over the bed and herself. This is what has been happening all week. Maliyah will start to complain of back pain and then at some point - whether it’s a few minutes later or a few hours later - she will throw up. And then mysteriously her back pain will disappear. We’ve checked a urine sample, lab work and abdominal xray - and so far have not found out what is going on. One positive thing that has happened is that her temperatures have been more in the normal range and when she isn’t having these back pain episodes, she is acting quite normal. But this also adds to the mystery of what is really going on.
One thing I know for sure is that medical PTSD is a real thing. Every time Maliyah throws up it triggers flashbacks to when she was a little baby in the NICU. We would try to feed her almost every day and she would throw up greenish vomit every time. Not only do you visualize it, you have all the same dark feelings you had from back then. I find myself feeling drained and helpless every time we have an episode. I try to not let Maliyah see that I am struggling so that she is able to face her own challenges without mirroring me. But when I am left alone with my thoughts I wonder - What if she is never able to drink or eat again? What if her MMIHS has progressed to another level? What challenges are we up against? What is going to be our new normal? How do we even plan for her future? Will she make it to graduate from high school? Will she go to college? Will she make it to find true love and get married? What if….. The questions never stop. Every time we rush to the hospital, we are faced with the very real reality of possibly losing her. Sometimes I let myself cry and sometimes I don’t have the energy to.
It’s times like these that I find myself hugging Maliyah tighter, kissing her more, and telling her “I love you” one more time. I know that I have no control of what happens in the future, but what I do have is today, and that it is up to me how I respond to it. I don’t know how many people actually read this, but thank you for letting me share some of my inner struggles as a parent of a medically fragile child who is such an amazing kid.
