Its Sunday morning and we have been up since 7am. Well, I have been up since 7. Brayden woke up screaming this morning from gas pains and is now fast asleep beside me on the couch. As I sit hit and type, I am feeding my sleepy baby thru his G tube.
I have come to realize and accept that my world no longer revolves around me and Kyle, but it revolves soley around Buddy. I have know this for a while but for some reason it just hit me. My thoughts a constanly of him. I am always thinking about something....when meds need to be refilled, when his next appt is, how many calories has he gotten today, when is his next appt ( nephro, uro, GI, peds), is it Thursday? ( thursday is Epo day), who is supposed to keep Buddy on my next work day, what is post transplant going to be like, will he be a "normal" boy?
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Seems like that is ALL that is on my mind. Some where in the vast abiss of my mind, I manage to keep ALL of his latest lab values, formula needs, work schedule, kyle's work schedule, birthdays, anniversaries, drug doses, weights, kilograms, medicines, work stuff, home stuff, and a BILLION more things. I am trully amazed at what my brain seems to hold! But that is beside the point. My point ( hidden somewhere in this blog of rambleing) is that I feel like I have to remember so many things and I am terrified that I will forget just one of them and that will in some way mess him up. I know it is not my responsibility to know EVERYTHING but I feel like I have to or somebody else might screw up.
HERE IS WHAT IS ON MY MIND
I am scared to death of transplant day.
I dont know why but I do know why....I have to give my son and the love of my life away to the surgeons and I dont like that feeling. I am a control freak and I dread that day more than any day I could think of. ...... It will also be a wonderful day too but I am scared to death!!!
Will my marriage ever get back to what it was?
I spend so much time and energy thinking/worrying/ doing things for Buddy that I dont have enough energy to spend with Kyle. He is suffering from it and I just dont know how to find the time to spend with him without cutting out something for Brayden. I just dont know how it is done
Will I ever be able to loose this weight?
I weigh now as much as I did the day I delivered my baby boy. I had lost back to pre pregancy weight but have ballooned back up and it is killin me. I just dont have enough hours in the day, If I could just work out a few min a day I could loose it but that would me I would have to get up at 330 every morning.....that aint happenin!!
Will Buddy be "normal" after transplant?
I just dont know about all of this stuff, I just wish I could have a magic eight ball that would tell me what was going to happen.
I wish all of my " dialysis" mommy friends could get together....how do we do that?
Well, My hubby just woke up and the baby is asleep so I am going to cook him some breakfast.....
oh mama ((( ))) If only I could help you answer any of those. Except the dialysis mama friends getting together. Tara and I are aiming for sometime next summer. Transplant day is scary. I obsessed about it for months, well, over a year anyway. And honestly, it all fell into place. I figured I would be freaked out and completely on edge and oddly, I was calm. All those prayers for peace really worked well. As for the weight mama, you are beautiful the way you are and once life has settled out and life is not as crazy--you will be able to lose it more easily. You have a hugely heavy load to carry right now. Trying to lose weight right now just wouldn't worky very well so try not to think about it. As for your marriage, I know this year I have prayed for mine a lot. And there have been times where I wasn't sure I even knew my husband because I have been all consumed with Logan and then managing my other kiddos and schooling them and it feels like it never ends. I don't know how you manage to work on top of all of it. And you can't really delegate little one's care because you know it won't get done the same. And it's the most important of all the things. All I can offer is hugs and that you will get through this. Buddy will be his own normal. And though it will feel like it takes forever to get him big enough to get that beautiful, miracle of a kidney....when you look back, the hard times will be dulled and it will feel like it passed so quickly. I understand that all consuming feeling of having a baby on dialysis. Your brain just focuses on them and their care.
ReplyDeleteI am praying that Buddy will be completely ready for transplant by June! Or even before so you can have a few months of "rest." Forgot to ask you, are you listing Brayden as well? My advice is to list him as soon as possible and then just not activate him.
Thanks Jenny. :) I will list him as soon as possible. They will not list him until he reaches 10 kilos. He is at 9.8. SO frustrating.
ReplyDeleteI know all about the tedious job of mother/caretaker/nurse/social worker/insurance rep and dietician to a kidney baby. I wonder about "normal" myself. Will my boy be able to go camping with the boy scouts - will another adult remind him to take his meds on time, what if he needs cathing... Will he be able to have children eventually? It is hard, but it is worth it.