Downgraded

After infant CPR this morning I went directly up to see Hunter and Megan went home to spend some much needed time with Stella. I missed him after not seeing him yesterday. Due to my ongoing cold I wore a mask and asked for a "gown" to wear so I could hold him. I sort of stood over him waiting for the nurse to help me or hand him to me...the nice thing was that he is missing a few tubes and monitors today. It's amazing how little you miss a bank of 8 small machines that keep different drugs circulating constantly through your kid. Yesterday they removed his main drain tube that was stitched into the center of his chest, it was there to drain any fluid that may accumulate around his heart...they removed his arterial, they removed some monitors and they were ready to remove his nasal oxygen...so as I stood there looking for the assistance that we had grown so accustomed to I found myself dressed for a halloween party with nobody but my son staring up at me as if I was the alien in the room...so I reached down and carefully scooped him up, apologizing to him as if I was hurting him. I wrapped a few monitor wires under his blanket and sat down down...as I looked past my mask at my son I couldn't help but fight the tears ...at that moment I was proud of how far he'd come in so little time and I was so happy to see him so closely. It was more sad (and touching) to watch him immediately snuggle in and fall asleep. I thought about how he has spent over 70% of his life in a bed and not in our arms as a newborn should be. I grabbed some fresh milk that Megan had delivered at a break in CPR action and gave him a few ml's. He sucked a few down then got tired. It's typical that post-op cardiac patients get 1) tired very easily 2) have an oral aversion and 3) have a tough time coordinating their "suck, swallow and breathe" technique. This is definitely true with Hunter. We asked for help from the lactation cosultant and they offered that and help from a speech pathologist who will teach us techniques to coordinate the tongue and breathing...it's amazing that a speech pathologist can assist in infant feeding. So as we have said all along the way, one step forward, two steps back...they had to put his feeding tube back to make sure he is getting his nutrients as he is now down to 5 lbs, not to worry, this is normal after surgery and weening from medications.

The big news today was the fact that they downgraded Hunter from the highest level of Intensive Care to the next level down in Pediatrics. He is still in the PICU but the difference is that he shares one nurse with 3 other patients (before it was 1 to 1), we only have to access one set of intimidating electronically enabled double doors and his room is HUGE. He doesn't have a roommate, which we will do our best to continue, and we are encouraged to stay with him. The room has a bathroom, a window and a "bed". They encourage one of us to stay to get used to nights and days with Hunter. This is both encouraging and intimidating as they are preparing us to eventually take him home. Our case manager, Paula, told me today that if everything continues the way that it is that we may be discharged early to mid week next week, yikes. Each day brings such change that by mid week everything will be different. We were also reminded today during the room change that each change brings new anxiety with adjustment. We are out of the comfort zone we were getting used to and the one before that (and so on). Hunter is no longer being monitored every second of every minute, we have to get to know a new set of nurses in a slightly new environment and get used to his personality and little noises. Just like every new experience in life...adjustment.

Tomorrow morning we are going as a family with Stella in tow to the PICU to see Hunter. She has not seen him since the morning before surgery. So she has only met him once, briefly and it was not a very relaxed environment. We are going to spend the morning in Hunters new suite by taking a gift from Stella to Hunter and plenty of distractions for her to play with. We are excited to sit and be a family, together, getting reaquainted and preparing for the next adjustment. We have two to think about adjusting, actually four...but we are ready. We have had so much help, support and encouragement from family, friends, neighbors and people we hardly know. It truly is amazing how tight of a community this is. We feel very lucky to live where we live and to be surrounded by such caring people.