I talked with the Rhett's cardiologist yesterday, as well as his ENT. I know it is in the Dr.'s best interest not to speculate on things, but I asked the cardiologist flat out, if this surgery on Friday doesn't work, and we can't get a handle on the Pulmonary Hypertension, what would the prognosis be.
I was really not ready for the answer, and I really don't know that I want to share it on here. Mainly because of Rhett's siblings, and also because I don't know that I am ready to deal with the reality.
I asked the ENT how long he thought we would be in the hospital. He wouldn't give me an answer, other than typical kids who have just their tonsils and adenoids out usually go home the next day, but for Rhett they are leaving it open, especially where they are doing much more than just taking out the tonsils and adenoids out. They are not going to put a time frame on it because they simply do not know.
This has not eased my anxieties much to say the least.
I am less than thrilled that we will be in the hospital for Easter, I don't know how to answer my kids when they ask if Rhett will be asleep or not when they come up to see him. There is a chance that he could be intubated for a while. There are so many unknowns.
It is so hard to see my little guy looking so healthy on the outside, but yet fighting for his life. When I think of someone who is fighting for their life I used to always think of them as being very thin, hallow gaunt eyes, and bad coloring, and although Rhett does have days where his coloring is off, he generally looks very healthy, and I know that he is happy. It's amazing how he shines in everything he does.
The last few days, and I know it is partly pre-surgery jitters, but I have found my mind wandering wondering what I would without him. Yesterday after talking to the cardiologist those fears came in ten full.
His regular pediatrician has told people when explaining everything Rhett has dealt with that he is not out of the woods yet, but it never hit me until yesterday that we are facing a shortened life span if things are not controlled.
How do you take this information and process it? So far all I can think to do is just take it one day at a time, and appreciate every day that I have Rhett and each and every member of my family. I don't want to think of the unknowns, but for some reason they just keep popping into my head.
3 days and counting down until his surgery. I wish the days would quit going by so flipping fast.
8 years ago