And the curve balls keep on comin'!

I am not a huge baseball fan but I think I do understand that if the pitcher throws you enough curve balls, you should start to expect them and adjust your stance accordingly. Right? Too bad I didn't adjust my expectations sooner because now I am confused and disappointed again. It's my prayer to not get so hurt and emotional each time one is thrown, but to be strong and clear minded and ready to celebrate each success with little Ethan.

The last 36 hours have been one curve ball after another. Wednesday evening, we got some very strange news. They told us that Ethan had the flu. It was influenza "A" but were not sure what particular strain at this point. Might be H1N1, might not. Yesterday before the cath they kept asking if he had any cold or flu symptoms and my answer was always a confident no, but his twin has a bit of a cold. They went ahead with the cath not seemingly concerned about this info. That evening, they were doing some pre-op testing which included a flu test due to the fact that it is spreading so rapidly. Lo and behold, it was positive! We were stunned. The plan was to still go ahead with surgery since he had no symptoms and they had closed off some of his blood flow to the lungs in the cath lab. Can we say "between a rock and a hard place???" But then he developed a low grade fever overnight. Dr. Fraser (the surgeon) made the call Thursday morning not to put him at risk and to put surgery on hold and see what, if any, symptoms develop and plan on maybe operating on Monday or Tuesday.

So then Thursday afternoon, they had Eef's breathing tube removed since surgery was not on the immediate horizon. He is on oxygen, though, due to the fact that he has very little oxygenated blood flow going to the lungs on his own now. He will stay in the CVICU until he does have surgery due to the fact that most of his collaterals are closed and his pulmonary artery is still unrepaired. He was still a little sedated and sleepy Thursday afternoon so Bill went home and I was just hanging out here with him should he need me. Then I get yet another curve ball that I tell you I really wasn't expecting. The more definitive tests were back and his flu test was NEGATIVE!!! Yes, you read it correctly, now they are telling me they are NEGATIVE! No flu! By the way, when we thought Eef had the flu on Wednesday evening, we rushed the girls to the after hours pediatrician to get tested and they both tested negative as well. We thought their tests were probably wrong since surely TCH wouldn't get Ethan's wrong! Our whole family is on Tamiflu now for ...well... no reason! : ) Also since his first reports of fever, Ethan has had pretty normal temps.

We are still in a holding pattern but for much different reasons. They couldn't go ahead with the surgery today because there was an emergency case today that required so many resources that all other surgeries were also cancelled. At first I was a little irritated but then realized that I would want them to do that for my child if his life was on the line. I hope that everything went well for that sweet child. Ethan also has quite a bit of congestion now that I think is in part due to being intubated but we want to be safe and sure of what it is before we proceed.

So we are hanging out here indefinitely. Ethan wanted out of here earlier today and really could not be consoled. The problem with him getting so upset is that his stats drop dangerously low now that they have closed some of the collaterals. They tried many different sedatives this morning and Eef the Beef just laughed at their efforts. They were shocked at how much it took to calm him down. Of course, I am thinking, FINALLY someone understands what I go through with this little man daily. Even the baby narcotics couldn't calm him down!! : ) But he finally gave in 5 hours later and is sleeping soundly as I type.

I have my moments (quite a few actually) where I feel sorry for myself and all that we are having to endure. It seems nothing happens normally or as we expected lately but then I see the families who are also here in the CVICU. While in the waiting lounge earlier I overhead a family talking with a friend about a transplant with only one good lung. There are several patients here in heart failure which is eventually where Ethan will be if his heart goes unrepaired. But it is not him today and we are grateful. So what if we have to wait a few extra days and our lives are completely turned upside down for a little longer than expected. We have Ethan now and as the song I heard on the way to the hospital this morning says, "I will praise you in this storm."

Stay tuned! I have a feeling that the roller coaster ride has just begun...
Love, h