Boy Oh Boy.....I don't know if it could have been a more beautiful day in Seattle! It was so sunny and warm well into the evening. I think summer may have actually arrived, although, I am not holding my breath!! :) Much like Montana, you just never know what you are going to get.
Trevor is having fun here at the house. He has been busy busy. BIG HUGE thank you to Theresa for chasing him around and keeping him occupied while I try and divvy up the time between the boys and work. Trevor and I went swimming tonight right before dinner. What a little fish I have! He can swim like nobodies business. He put on a pair of flippers and goggles and was all over the pool. He did somersaults (both frontward and backward) in the water and we chased water rockets all over the deep end of the pool. It was great. What a big boy he is turning into. He has also taken an interest in the piano (MOM) while we were here. :) Theresa is teaching him chopsticks. He has just about got it.
Joshua is still about the same. He is awake more, MUCH more during the day now. This is adding a little more stress for me as now he knows what is going on and I don't like him to be alone. He likes to flirt with the nurses and has taken a particular interest in one the RT's. He doesn't take his eyes of her for a minute while she is in the room. It is the funniest thing. I told James I bet he picks a girl later in life that looks just like her! She is a neat gal, most of the workers here are. Some are a little more challenging, like the one today that "didn't feel comfortable" with me wiping the boogies off Joshua's mouth! My first thought was that they shouldn't have been there in the first place ~GROSS....and well I had another thought....but it wasn't very nice and I will keep it to myself! There are things that I think I can handle and things that I know I can but better leave it to the nurses. I think boogy wiping falls in the 'ok for a mom to handle' category, but maybe it is just me.
I had a discussion with Dr Mazor today regarding the "plan" for Joshua. I am using the word "plan" very loosely. Basically, we don't have a plan and aren't likely to have a solid one. Joshua seems to have some challenges that we need to work through. Tomorrow (or the next day, maybe) he will go back into the cath lab with Dr Johnston. Dr Johnston is going to look in his heart and see if there is some thing that can be done to help the narrowing of his shunt. The narrowing is at the very base where the shunt is sewn to the ventricle. The "plan" is to see if he can possibly balloon the shunt site so that more blood can pass through. The assumption is that a stint will probably have to be placed. There is issues with this because the stint will have to be half in and half out of the ventricle and shunt. This will be a temporary fix to see if we can maximize his blood flow. (I keep saying we, but really I have nothing to do with it.....I just sign the paperwork :)) The other possible option is another open heart surgery to place a second shunt so that we (there it is again...) can get more blood flow to his lungs. Both of these would be temporary "fixes" basically to buy time. Here is the worry. They don't know whether it is a cardiac issue or a pulmonary issue. Dr Cohen is not comfortable going forward with the Glenn unless he knows for sure that it is not a pulmonary issue. (Now there are situations that would force him to go ahead with it even though it could be very risky. We are just going to pray that we don't have to go there, but if we do I will explain as we get to there.) If it turns out to be a pulmonary issue then doing the glenn would be a bad idea. Here is the best way that I can think to explain it; The glenn is creating a passive blood flow from the upper body directly to the lungs. The blood is not pumped through the lungs by the heart like it would be normally. So, if there is any pulmonary hypertension the blood would not flow to the lungs and could cause issues in his upper body (and possibly his brain.) So, it would be like a foam ball that is already full of water, if you put it under the faucet it is not going to allow more water in. I hope that makes sense. This can make the surgery at this point very risky and he could have a very rocky recovery. So it is very important to make sure that he is healthy and his lungs have healed. It sounds like if they can do something to help the flow then they will put off the glenn procedure for a couple months. Ah....I think that is it in a nutshell. I will fill you all in as I hear more.
I better get to bed as I have a very early morning.
Love and blessings,
Leah
