I didn't expect the end of our hospital stay to be as stressful as this. I don't want to speak for Ken, but I did not have a clue that feeding would be such a big issue. Oh, man. Vivian smiles and turns her head away. She won't hardly accept her favorites: bananas or vanilla pudding. My entire mission the last three days has been to order whatever foods off the hospital menu and try giving them to Vivian. She took 10 sliver-size bites of things two days ago. Yesterday less than that but did start to drink Pediasure out of her sippy cup. Today not much luck either. I took her for a wagon ride outside on the hospital campus. We sat on a park bench and watched people, traffic and nature. She was so distracted she willing accepted bites of baby food applesauce. I was so excited thinking I could report she ate a jar (50 calories). As we were sitting there she suddenly burped and then just threw it all up. I was so surprised and disappointed. If only...if only... Did I push too much? She willingly accepted each bite. Push the calories vs. try not to have her throw up...what a struggle.
Anyway, I was pretty dejected walking her back up to our floor to report it to our nurse. My mood, I'm embarrassed to say, remained sour throughout the evening. Our fun-filled evening included watching the nurse put the new ng tube into Vivian's nose and stomach. Oh the joy watching our daughter turn red, purple, cry, gag, and proceed to throw up the rest of the calories I worked to get into her today through the Pediasure. And, just think, I get to look forward to when my turn comes up to do the same thing. I don't doubt I can do it. When all is ready it only takes a few seconds to get the tube in, everything else takes longer. It's just the detail that it's MY child. I am the same person that runs to my child in distress to comfort whoever needs it. Wish I could be excused due to conflict of interest.
Interestingly, at midnight last night I didn't mind sharing my opinion with the nurse about taking several tries to get blood pressure on Vivian. It takes several tries to get blood pressure on Vivian...period. It's tricky. The nurses get two to three tries before Vivian gets really ticked off, and then game over because it won't be accurate after that. I woke up to Vivian crying and quite upset while the nurse kept trying. I told her to quit it and get a new machine. She did quit and leave at least. Funny thing THIS evening, a nurse came in to use the blood pressure cuff and inadvertantly discovered the cuff was not the right one to be used with that cord or machine. Well, that was validation.
Tonight after Ken and the boys went down to their room to sleep, I heard a whisper of Vivian's voice for the first time. Oh, yes, believe it. We are still waiting for Vivian's voice to return. We are also waiting for a very huge and ugly bruise on her arm to heal that has been there since surgery. Like every medical staff person asks or remarks on that from day 1, and that is the one thing that about drives me crazy! It's obviously a failed attempt at an arterial line or IV and yet people keep asking us. It wasn't there when we went into the OR but it was there when she came back.
Back to the ng tube stuff. We will take home an oximeter machine too for Vivian to wear nightly. This will set off an alarm in case Vivian pulls the tube out of her tummy and it stays in her throat causing her to aspirate. Hmmm...will I ever sleep again? Goodness. Past experience from others says that tons of kids will try and pull the tube out in their sleep. Actually, Vivian has been very good about this in the hospital...maybe we are catching a break here. If she leaves it alone, we will only have to torture her with this once a week or less.
This point in time is probably the hardest part. Hopefully, it will get easier and less scary. I know in the big picture it is the best for Vivian to get her continuous calories to heal and grow. I hope that overall she will start feeling better than before surgery. And, I hope she will not develop further oral aversion by having the negative stimulus of a tube in her throat all the time. I will try to be more positive in a future post. Love me anyway, Keri
P.S. Yes, the previous photos I have posted look super of Vivian's recovery but don't portray the struggle of eating. Ironic, isn't it?