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Jaymun is progressing very well. The latest X-ray of his lungs shows less fluid than last week and the pulmonologists seem pleased with how clear his breathing sounds. We took him off his oxygen this morning and he did great with breathing on his own, so they have removed his nasal cannula and he is breathing on regular "room air". However, not long after we took the tubing out of his nose from the oxygen (which delighted Jaymun, since he really hates the intrusiveness of plastic taped to his face and tubes sticking in his nostrils!), they had to insert an NG tube in his nose for feeding purposes. The tube sits in the back of his throat and allows us to feed his formula and oral meds through it. This will also help him to be taken off his IV nutrition (known as TPN) since it's not great for his liver. The insertion isn't pleasant, since they have to push the tube down his nose and past his gag reflex... he's a bit irritated with the sensation of something stuck in his throat. We have been trying to feed him formula orally, but ever since his PICU stay and due to the transplant chemo, his desire for eating hasn't increased as much as we need it to.
These are all baby steps toward getting him discharged. His lungs and liver really took a hard hit from being so sick and the recovery process takes time. We are delighted with how well he is doing overall...he has been really smiling and laughing the past few days. Word spreads quickly around here when a patient is doing better. Everytime I step into the hallway, the nurses and residents are eager to tell me how pleased they are with his improvement. It makes us continually grateful to be in a hospital where the staff are so encouraging. When Jaymun was in the PICU, we had constant visits from his HOT unit nurses and resident doctors, many of them using their lunch breaks to check in on him. The concern and worry on their faces was so heartfelt. They have been with our family and Jaymun every step of the way, always encouraging us and so sincere about their hope for his future. There is no doubt in my mind that their love for our boy is genuine.
So, you can imagine my surprise when Jaymun's primary day nurse from the PICU stopped in yesterday to see him! Lucretia touched our hearts almost immediately when we met her. She made us feel as comfortable as we could in a very frightening situation. I am always endeared to the nurses who go above and beyond their duties when they care for patients. It's the little details that make the difference. I noticed she would tuck his flannel blankets in around him to make him feel snug and warm. She would apply ointments and balm to his dry skin and lips. I liked the way she talked to him, even though he couldn't always respond due to the sedation. When Dave would call from home, she always took time out to give him the latest updates and explain things to us in full detail, even if it took time away from her busy schedule. She included our HOT unit nurses when they came to visit us and didn't act like they were on her "turf". She was always cheerful and encouraging through the entire two weeks, even when things looked pretty dismal. She treated Jaymun like he was precious cargo, which is of course the number one thing parents crave in a caregiver--they want to know that their son or daughter is more than just a sick body, that their child is worthy of someone's most dedicated attention. I don't know how the nurses in the ICU are able to stay so dedicated when they have to deal with critical care patients on a daily basis. It must be heartbreaking to see families lose a child. It has to wrench the nurses' hearts to take care of such sick children day after day--and they still come back.
Lucretia visited us on her break. She didn't have to take her personal time to come and see us. I know how incredibly busy all of these nurses are. I was so glad that she could see Jaymun when he was feeling better, smiling and grinning at everyone like his old self. Just knowing that she would stop in to see us was a wonderful gift in the middle of the day. I know she checks in on Jaymun's website occasionally, so I just wanted to let her know that we love her and will always remember her kindness to us in the ICU. Believe me, if your child ends up in an ICU, you want this sweet gal to be your nurse!
Later at night, the rest of the family came to see us. These are the moments that make me smile--watching Devon read a book to his little brothers, seeing Ben snuggle with a baby even if it's not the "cool teenager" thing to do, and hearing Kirsten shriek as Jaymun has discovered that his big sister's long hair is great fun to yank on! I wouldn't trade these five for all the treasures in the world.