Level 88

Lennon is out of Intensive Care!!!!!! We are currently waiting on a room but he is leaving the PICU. I am elated about his progress. We do have to get him to eat, but this will take the time I think. This is a good day. In some aspects, its a sad day, the staff here at the PICU has been excellent in caring for Lennon. We have come to love them, be their friends and share life stories with them. They love Lennon. But what is not to love about him? He is amazing with a shining personality. He has affected everybody in such positive ways. He is a miracle and keeps inspiring me each and every day.

So the procedure went well yesterday. His stomach has reduced in size and the stent they placed will stay in for a while and that should remove some of the problems. Since the liver is working, transplant thought it is better for GI to get involved. He is not able to keep anything down at this point, and they are giving him nutrition via IV ..TPN and lipids. Today they are going to do more blood cultures, urine samples etc in part of see if anything is going on with his blood, other infections and if he is loosing his electrolytes through the urine. Hematology is also going to get involved to figure out his blood issues such as his lack of clodding etc. So…

Today, Lennon has received official orders to get out of the ICU and go the floor!!!!!!! One of the chest tubes will come out today, and the other will be evaluated, not 100% on that one yet. He currently is sleeping and appears extra tired. But when he is awake he is Lennon, laughing, smiling, playing, being sassy and ornery! I am overly cautious about everything at the moment, and working towards getting things together to home school. I often just want to wrap him in a bubble of protection. I am not sure what the next steps are, as there are still nutritional issues to figure out. But for now, I am happy and excited that he is doing so much better. But it…

Tonight I was painfully reminded that I am human (who would have thought it?) and that at times I don’t have it all together. A small mistake made Lennon cry out, his belly hurt and vomit. Normally I would panic but one look at the feeding pump and I saw the problem… I forgot to change his rate from the day feeds to his night feeds. Lennon the trooper…went to the bathroom…got undressed…got cleaned up and is back in bed, while I’m sitting here thinking how did I miss this and why didn’t I pay attention to it? So yes I recognize I am human, but I’m still going to beat myself up over it because it didn’t have to happen. The other day I…

We received the phone call, Lennon is on top of the transplant list. So now we have to be patient with anticipation, keeping him healthy and be grateful. I am battling to determine which is worse, the waiting or the surgery and I came to conclusion that the waiting is worse at the moment, but the surgery is scarier than the waiting. My gradidute goes out to the donor that is helping to save my son’s life. Medical technology is amazing, but there is nothing more amazing than a person being an organ donor so that another person may live. I am an organ donor, always have been and I hope that many who read this blog, who may not be organ donors – please…