Surgery Countdown

Why I ask, is it that as we get closer to Nicholas' back surgery, everyone in the house decides to get some sort of cough, sniffle, sore throat, runny nose thing? Poor Maddie has had it for a month and at this point I probably have to admit that it just might be allergies as Ray has said for a while now. The cough though is terrible. It just can't be "drainage". Really? Making her cough so much that throwing up each day is the norm from a bout of coughing?

When she was a baby she had bad colic. Why do I bring this up? I just happened to remember her Peds. doc saying when he put her on Zyrtec for GERD, that this is something that will probably be with her for life. Now as she coughs and then throws up from coughing so much, I think it is all related. Poor baby. She is so good about it, but I know she is just over this cough. I know the rest of us are not getting any sleep and neither is she. Ray took her to the Urgent care clinic over the weekend because she had a low grade fever. I panic thinking, RSV, Bronchitis, Asthma, walking pneumonia. The doctor says it is probably just allergies. Keep her on Antihistamines daily blah blah blah. Not that I wanted her to have something other than that but is she going to be coughing all through allergy season? I have left a message now with our Peds. doc to see if he can prescribe at least something for her at night. My Grandmother's old remedy of a little whisky, lemon juice and honey was sure sounding good the other night in the midst of a coughing spell.

Yes, the title to this blog is Surgery Countdown.  And why does someone want to stress me out and bring all this coughing and sneezing and sore throat stuff into my house when we only have a few weeks to go? Nicholas has been healthy for a while. We are giving him extra vitamins each day and echinacea drops as well. If he gets sick, his surgery will be postponed. It just isn't an option. We have all geared ourselves up for this as much as we can. My Dad is coming out to stay with us for 9 days to help, tickets have been purchased. It would be horrible.

Although my heart breaks thinking about every moment of this surgery and all that it entails after, I just know in my heart we have to get through this, for Nicholas. He will need us to coddle and love him so much more than we do now. I give him and Maddie all I have but somewhere, we will need to find the extra from within to give even more so to help him. Our voices are the only thing that will soothe him other than pain meds.

We had our Pre-Op last week and met with so many people. Shriner's is awesome and they really do care about their patients and their families. They want to be able to help Maddie get through this and understand why her brother is going to be in so much pain. She loves her brother so much and it will be very difficult for her. It sounds terrible to say but it will be hard giving her the much needed attention during surgery time when I know we will be spent physically and emotionally with Nicholas and being there for him. When we were in the hospital for Nicholas' G tube and when he had a bad flu in December and was admitted, Ray and I made a major effort to take her out to lunches and dinners while the other one of us was with Nicholas. She likes that and I know it helped her feel just as special as Nicholas is. To Ray and I, she is a bright light in a sometimes dark room. But when we go through these things, I can see her little brain thinking "he gets so much attention". We know this is always the case of a sibling of a special needs child. We have read about it and are prepared for it. Right now, she is great about everything so we try to head it off at the pass and do special things now, knowing it won't always be so easy.

Shriner's asked how do we know when Nicholas is in pain? Our answer since he cannot talk is that he cries. It is true. Nicholas literally never cries unless he is hurt or just doesn't feel good. This will be our ultimate test of advocacy for him. We have fought hard in the past and have won so many battles on his behalf but this one, is huge. I have high expectation's for Shriner's. Our main concern is that Nicholas' pain be managed effectively. I am sure with his pain meds and seizure meds, he will be sleeping a lot and that is fine with us. Just sleep through it baby, just sleep through it.

"Baby mine don't you cry, Baby mine dry your eyes, rest your head close to my heart never to part, baby of mine." The Dumbo tune I have sang to Nicholas since he was in utero after we found out he had a stroke. I have sang it to him since and Nicholas knows it is me and OUR thing when he hears that song. It always soothes him. I will be relying on it.