Last night’s calm was relatively short lived, but needed. We woke this morning – earlier than normal – to Liam having some real difficulty breathing. He has no gag reflex and no ability to cough, so he has a hard time dealing with all of the normal secretions and the fluid in his lungs. It took the better part of the morning to figure out the best position for him to be comfortable….but we might have found that he does best on his belly. He has been breathing fairly well (given everything) for most of the afternoon, and his vital signs look okay. The nurses have also been able to work throughout the day on lowering his blood pressure medicine, inching closer to being off of it all together.
There is a mind game that is in full play right now (I intend on writing another post about in more depth another time) that makes it seem like things are progressing in a positive direction. He got the EEG removed, he got the ventilator removed, he got the arterial line removed, he is getting removed from some medicines, and he is breathing on his own. It all sounds good, until you understand that the reality of the situation is that these things are being removed largely due to circumstance – not because he graduated beyond them. True enough, he was breathing over the ventilator for a while and he is responding well to lower doses of medicine, but these are not expected to be long term gains as evidenced by his struggles breathing. It’s hard even for us to remember as we live this each day that he isn’t getting better (under the traditional sense of the word) and that the things we perceive as gains aren’t always gains.
We had the opportunity this morning to have some professional pictures taken with Liam. There is a group that does this service for families in situations similar to ours called Now I Lay Me Down To Sleep. It’s a bunch of professional photographers who donate their time and abilities to be able to give families good photos. We called them yesterday and they came this morning to take photos of Liam with his Grandparents and Liam with us and Liam with Ezra (sort of…Ezra was a lot hesitant but we might have been able to get one or two photos of them in the same frame). We are expecting to see the results of the session in about 4 weeks, give or take a little. Since this service is so unique and special (and we really appreciated our photographer), I thought I would give her a shout out on the blog here….her name is Amber and her business is called Echo Images. She is based in the Denver area, so if you are in need of a photographer for anything…please consider hiring her as a return for what she did for us. You can find her at echobyamber.com or echoimages.blogspot.com
Ezra continues to amaze us with his resiliency, and while he does have his ups and downs (what child this age doesn’t), he has mostly been a great kid for his Grandparents. They have had lots of adventures so far together, and today were able to go to the Wildlife Experience in Parker after the photoshoot here. Tomorrow it looks like they are going to go to Centennial Airport for some lunch, and we might sneak down there to spend some time with him.
Here are some pictures that the hobby photographer (me) took this morning.