Nothing Goes as Planned

Carson is 4 months old, well 4 in a half, and we are in the midst of our forth stay at Children’s Hospital.

It all started Thursday, May 10th. I hooked Carson up to his pulse ox machine and his stats were kind of all over the place, but mostly between 75-85, which is right where he is supposed to be.

I called the on-call cardiologist and she told me it might be because of the heat, to give him pedialyte. I did, and his stats kind of regulated.

I was carefully watching him Friday, Saturday, and Sunday. Monday, I had an uneasy feeling, and kept him on his pulse ox all night. His alarm went off like 5 times, meaning he dipped below 70.

We called Tuesday morning and talked to his cardiologist who told us to come in. We went to E.R. and he was admitted.

He got an echo done, and they didnt find any changes in his heart. All in all it was summed up that he is out growing his shunt and needs surgery. However, he cannot have the surgery that was planned because he is still too small.

He was supposed to have a 1 and 1 half repair. Meaning they were supposed to replace his shunt with conduit, patch his VSD, and repair his aorta. Instead they are doing a Glenn which is a procedure that makes some of his blood go straight to the lungs instead of to the heart then the lungs. This will relieve pressure on his heart and will bring his oxygen saturations to 95% and he will be almost ‘normal.’ They said the 1 and 1 half repair is too risky right now because it is working inside his heart. They want him to be above 18 lbs before he gets that procedure, and right now he is 13 lbs 8 oz.

Other than his stats being the way they are he is his normal self. He is not acting any different and he isnt showing any signs of distress. The doctors are all happy about that.

Today, we don’t know when his surgery will be exactly. Apparently they have a full schedule this week and “will try to fit him in.” He has to be NPO (meaning no food for 8 hours prior to surgery) so well will know at least 8 hours in advance.

It sucks, looking at your precious baby, knowing he will be facing this so soon, so much sooner than I expected, then anyone expected.

I talk to him every day, I tell him he is going to get surgery again. I tell him that they are going to have to take him away from mommy and daddy, but not to be scared because he will be sleeping and wont remember anything. I remind him that we will be waiting for him after he is done. I tell him all the time that he has so many people that love him, and so many people that are praying for him. I tell him that he has to be strong just like the last surgery and the last two caths. I tell him how proud I am of him. I thank him for choosing me, for choosing me to be his mommy. He could have chosen someone else.

I am so proud to be his mommy. Although my heart is normal, it feels broken. How is it fair that this perfect, amazing, incredible, light in my life came to this world “broken?” All I’ve always wanted was to be a mom, and I am his mom.

Sometimes I get down, and I cry. Oh boy do I cry. I cry for him.

I am so glad he is so small and doesn’t understand. All he really understands is love. He understands that I love him and I know he loves me. That look, it just melts my heart. He has be wrapped tightly around his finger.

Its so hard, this is so hard. Children’s Hospital is a beautiful place with an amazing staff. The nurses here are wonderful, and so are the cardiologists, doctors, and surgeons. I know this. I know how incredible all of them are. I have to put my full faith into their hands and trust that they will take care of my baby, just like they have the last three times.

I hate that. I hate that I cant be there with him, although if I could I wouldn’t be able to handle it.

I remember last time. I remember walking in, and seeing him so swollen, and his chest open. My heart fell to the ground. I remember those helpless days like yesterday, and to think that we are facing that again breaks me.

I never knew I could love this much. I do everything I can to keep him healthy, and make sure I pay attention to what the nurses do, so I can do that at home to make sure he isn’t dehydrated, and that his pulses are strong meaning his circulation is good.

The hardest part of this is I cannot make it better. All I can do is love him. I wont be going anywhere. Ill be by his side through all of this. I hate that it has to happen so soon, but a part of me is grateful I dont get days in advance to worry and cry. I know they will take care of him, they always have, and I know he will do great. He is the strongest person I know.

Speaking of strong. Everyone keeps telling me I am so strong. I am not strong, I am weak, I am scared out of mind, I get negative, but then I remember. I remember that I am his mom for a reason. He CHOSE me. Every time I hear someone say I am strong I think of this quote.

I never knew I was this strong, I never wanted to be this strong, but I have to be. I have to be this strong for him.

He has shown me such beauty in people. He has so much support and love. People who dont even know me, or know him are praying for him, for us. Because they know someone who knows us. To me, that is beauty, people are beautiful. The kindness I have experienced blows me away. A mommy friend I have made is doing a heart work today and has Carson’s name on her badge. It makes me cry just typing that. She doesnt have to do that. She chose to, because she cares for him. That is amazing. He has touched so many peoples life. He has forever changed me, and I will forever be grateful to him for that.

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2 thoughts on “Nothing Goes as Planned

  1. Michelle

    Ahh, Carson is so adorable! I can’t even start to imagine how hard this is, but loving him IS the best thing you could ever do for him. ♥

    Reply
  2. nonnierms

    It is so incredibly hard but it is also so incredibly amazing, the things they can do to give our little ones their lives back. Izzies’s heart is so tiny and they went in and made it work. All the doctors who worked for years to perfect these procedures, all the families who tested the procedures, they were far stronger than I could ever be–they made my little girl’s repair possible.

    Carson and you guys have many many thoughts and prayers for the upcoming Glenn {{hugs}}

    Reply

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