Yesterday was a hard day. Evan had a cardio visit that honestly sent me in disbelief shock. Things have gone so well since his surgery that I never dreamed we would get anything but outstanding results from this visit. I even was brave and let hubby continue working rather than going with me. I'm not sure I can ever do that again. After the echo Dr. M didn't say his usual, "Good job buddy, you look great." I asked if everything was okay and he said he needed to look at some numbers. My eyes instantly filled with tears that I choked back. Dr. M said the pressure in his left pulmonary artery has doubled since our last visit 3 months ago. From 30-15 to 50-30. He asked me to not go there, to not worry. That we would come back in a month and look at everything then and discuss our options. I asked why. He said maybe Evan's big growth spurt has caused it to narrow again, he didn't know for sure. Said to wait until next month. I asked what if next month it looks worse or still bad. He said we will go to the cath. lab and try to stent it. I left with my mouth open and tears. Evan knew exactly what he was talking about and just told him, "but, I want to go to Disney World!" Dr. M asked when that was and I told him we were trying to get it together for October. He said that things would be figured out by then. Oh... I DO NOT want to discuss options... I DO NOT want to wait a month. I'm upset and am sure I will get over the news and move on this roller coaster ride with a smile on my face and nothing but LOVE for my little Braveheart but today, today I feel very down with this news.
Pray for Evan.
3 comments:
Oh, dear, I am so sorry! It is bad enough to get less-than-stellar results, but it is especially hard to get them when you are expecting a good report.
I am praying for Evan and for you!!!
OH...I'm sorry.
I know what you mean....you almost get to a point where you don't think about him looking Blue each day, or wake up at night to see if he has labored breathing...you feel normal.
It is good that they could handle it in the cath lab and not surgery though...I'm afraid we'll be in surgery next. Let us know if we need to set up an "Evan Disney FUND" and make sure he gets there and has the time of his life!!! OH...does he deserve it!!
Oh, I'm so sorry. :( Sorry you were hit with some unexpected news and sorry that you have to WAIT. Waiting, worrying and wondering can be so tough on us parents.
It sounds like it would be able to be maintained in the cath lab, so that would be good. We'll pray that it corrects itself, though, and that no intervention is necessary at all! Evan, we'll get you to Disney World!!
Hang in there. Know that we're all walking with you and holding your (internet) hand! Evan is being watched very closely. He's in good hands all around. xo
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