Check up day

We just finished the evening "putting Gavin to bed" ritual. Wow cribs have their benefits! He doesn't seem to understand that we are the parents. I think he sees us more as facilitators. I have just barely enough energy to write about our day.

I was anticipating that this would be an encouraging and trouble free report as Bronwyn has been doing so well and we have had so little concerns. But... I guess today was a bit of reminder of how tenuous our situation is. Bronwyn did well over all. She didn't enjoy the process and was extremely angry during her echo. She expended a great deal of energy crying and fussing and carrying on (wow she is just like her mother). The shunt seems to be fine and the functioning of the heart seems to be fine. There is however a blood clot in her heart. I am glad that she has a very relaxed and calm doctor. So when she says things like, "Well, that is in a bad place, if it breaks loose it will go straight to her brain and she'll have a stroke," she is so calm that it is hard to panic. That is until what she said sinks in. She has been put on a blood thinner now and I had to go back to the hospital and be taught how to administer it.

I guess what was more alarming to me was that when they checked her oxygen saturations after the echo they were low. Dangerously low. The doctor was fairly alarmed. I assured her that we have been getting much better numbers at home and we check every evening. I have never seen saturations that alarmed me at home. I suggested that perhaps it was the crying. She agreed it could be. As we were talking her sats increased into far more acceptable numbers. The doctor is concerned that she may be de-sating when she cries. This could have long term impact on her brain. We don't let her cry like that at home (if we can stop it) and she is not a baby who is prone to crying. I guess it just alarmed me that there are things that are going on that I just cant tell because I can't see inside her little system.

We are however not discouraged. It was fairly unrealistic to think that a baby with her condition would sail through all her appointments and not have any complications. We are pragmatic and thankful that they continue to stay right on top of all the developments.

They are doing a scope in a couple weeks to check out the heart and lungs. What they find in the scope will give them an idea of when they will do the next surgery. We are now thinking it will be roughly mid January, unless there are complications that need to be addressed sooner or complications that cause a delay. Wow, was that a firm answer!

I have to say that I just love her cardiologist in Calgary. We have been so blessed by having caring and gifted people attending her all through this.

So it was a bit of a stressful day. Trying to get Gavin up from his nap and into the car to get back to the hospital to meet the thrombosis people was well a great part of that stress. Can't get him to bed, can't get him up! Oh to be two again.