Lennon was part of the 4th of July Parade in Scottsville.
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Physical Therapy
” I want to go walking” he said. “ok but we need to wait for your meds first”, I replied. “Oh, good idea” he said. He is just awesome and funny :o) Well, today we are being transferred to KCRC for Physical Therapy. So while it still is a medical setting, we are in away being discharged from the Hospital. Wow. There were many days I thought this day would never come, many days I thought I might never see him smile, or have conversations with him. And today, he appears in a good mood, is having conversation (with me, lol). He is still not eating, but is fed at night with an NG tube so that he gets his nutrition. We are slowly working…
Next Phase…Floor
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…
Not quite as new
So Lennon has been dealing with some terrible acid reflux stuff or too much air, or both. We have inadvertently stopped the feeds as that is not helping him to keep things down, and after the doc visit today, they said ok as long as we can get him to drink ensure, resource boost or Pediasure. So we will try it out. We will see how it progresses as that spit up/vomit thing is quite nerve-wracking, not so much for me but for Lennon. Overall however he was very sociable today, something that I am not used to, but he was in a good mood and again has made some good adjustments.He does appear to have some “extra” fluid in some areas of his body,…
Is this a dream?
“Is this a dream?”, the boy asked his mother as they stood in the hallway waiting for the elevator. “What do you mean bu this is a dream?”, his mother asked curiously. “Is this a dream that I am going home? Can you pinch me? The boy replied The mother pinched him ever so gently with a slight tear in her eye realizing the impact of this little conversation. This was the conversation Lennon and I had Wednesday of last week as Lennon was going home. He had minor surgery the day before to fix his gastrocutaneous fistula, in other words, fix the hole in his stomach. And he handled everything like a champ. The waiting in the pre-op lounge was a breeze as he…
Merry Christmas
It is amazing to me that we have managed another Christmas at home considering we have been waiting on a new liver for almost 5 months now. It’s one of those we wish it would have happened already but glad we were home moments. Lennon appears ok probably to people looking at him, but I notice the changes. I noticed the blue-ish tinted toes, the bruises because is coagulation is off.. the labored breathing when he gets too excited…and yet knowing that he’s sick or getting sicker he still manages to make me and everyone around him smile. Santa got him a cleaning trolley with his own broom, mop, bucket, dustpan, spray bottle an a Diego Rescue Center. He loves both of them very much……
The waiting game
It’s pretty daunting the waiting game. My phone rang today and it was the hospital and my heart took an extra beat or two. It was only to talk about some additional things they want to do such as check his blood oxygen level as that had been pretty low and of course lab work so they can update his listing on the transplant waiting list. Depending on the O2 level may require additional tests like what they call a bubble echo. They checked the blood flow into his lungs while we were at Pittsburgh and it looked good, but there is that concern that his breathing is not what it should be and is more than likely related to the failing liver. If the…
I am so glad he was able to make it. He must have been thrilled (and/or overwhelmed 🙂 What a cutie he is!!