Not sure how much I have to give, not sure this will make any sense but here's what I have. We ended up in the hospital longer then we thought. Our 3 day stay turned into 7 and half days, yes, I count that half day, and so would you if you lived through it. Most everyone knows how Rylee loathes the hospital and Dr's. We spend many hours walking the halls, I mean MANY!! Everyone knows us. The TPN is in and as of right now we are trying to regulate her levels. So far her weight has not really changed, still not walking and she is just plain miserable. I miss her smile, laughter, spark, I ache for it. I fear that I will never see it again. The other night I found myself going through pictures trying to remember the last time I saw it. I can't even remember anymore. I cringe everyday that she cries in pain "mama owie mama hurt" One foot, in front of the other, that's all I can think about. She spends 20 hours a day hooked to a machine and 6 of those hours she is hooked to two machines. She has a tube out of her chest and stomach. Right now it's all a lot of work. Taking care of this is so much different then the GJ-tube. I know that we will settle into a routine, and soon it will feel like it's nothing but, right now we are not there yet, one foot, in front of the other.
Thank you to everyone who has been there for us:) We have gained many friends, we have lost some who we thought we were very close to us. It's amazing how many people change in your darkest hour. Those who should be there are no where to be found(if your are reading this it's probably not you so don't be hurt by this.) Thank you to our friends who have been putting food on our table every night since we have been home, for picking Drew up for school and asking for playdates with him. You all have made our lives so much easier. Thank you for just doing it because we all know how bad I am at asking for help. Thank you to the 3 south nurses, you are amazing. Love that we have had the same nurses for 2 years. Thank you to our amazing Dr's who have not given up.
8 years ago