I really wish I could give everyone who reads this blog a glimpse into how our life really is. The colors of emotions that are seem in one given day is enough to fill a rainbow. For example, Gavin was very sick yesterday, crying a lot and generally in a lot of pain. In that same day I spent about an hour in the hall with Madison and the Nurse Aide playing a crazy game of twister filled with giggles and smiles. Within five minutes of entering Gavin room again I have a talk with some of the nurses about end of life issues. This back and forth is what really makes this journey difficult. So many other families sit next to there children today in this and other hospitals feeling this same range of emotions. Many have other children at home, husbands at work and friends somewhere back on their path. It's a crazy life.
With that said -- Today Gavin took a turn for the better. So we all sigh with relief but at the same time our frustration levels rise even higher as we have no answers for the chaos churning in his body. These are the things we know:
Gavin's blood counts dropped and today he will be transfused.
An ultrasound yesterday sent panic through the chain of command that Gavin's spleen is "huge" (we already knew that -- but it was interesting seeing the look of their faces)
That same ultrasound also revealed that Gavin has Gallstones -- go figure. I guess he has been sneaking way to many double cheeseburgers. The doc does not think that this is related to this current episode but now we have another problem that needs to be monitored.
We did a culture from his J tube which still shows fungus living in the bowel, which can be normal but we were hoping there wasn't any as he in on so many anti fungals and as we know from history whatever bugs are in his bowels will eventually end up in his blood stream.
Our doctor is going to be away for one month starting Monday. Ahhhhh -- can you sense my panic? Thankfully today he will be sitting down with both Adam and I and discussing every possible scenario and what we need to do while he is gone.
Thanks so much for all the support on our last post. Adam and I sit here at the hospital and read them all, which gives is so much comfort. When we are so far away from reality is is often to easy to get lost and feel alone. Thanks for choosing to be apart of our life.