Today will be better

Today will be better

Written Nov 1, 2011 7:58am by Amber Gannon Medina

Yesterday was a long and difficult day at the hospital. I can start to understand where my exhaustion comes from. We arrived at the hospital today and were greeted with a fairly happy Mira! I arrived during her most favoritest part of the day-Oral Care! Sometimes its the only thing that really wakes her up, and today was no exception. Big eyes, smacking lips and then a nice happy pass out:)

Around 7pm we were told Mira would need to have her lines (the lines that go into her belly button and read vitals) switched out because her current set were getting too old. For some reason, for me this was a really hard piece of information to accept. Most kids in her situation have already gotten better and never have to have their lines changed. Saying that right now is difficult-Eleven days post operation, Mira is still really sick:(

We could not be in the room for the procedure, and once we came back for an update, were told it would take 15 more minutes. After an hour, we stuck our heads back in and discovered they had been able to get one of the lines in, but after several "tries" had failed with the other. They had had to wait to give her a break, but were going to try again.

Poor Mira. They had stuck her hand and her arm and she was pretty beat up and bloody. She had been sedated, but was still grimacing every once in awhile and the line they DID get in looks just awful-like they fileted open her leg skin and stuck a sharp diamond shaped piece of plastic right in it. It didn't just LOOK like that, that is what it was.

We were asked to leave again once Mira had had a break from the poking and we planned on coming back in about an hour. 

John and I arrived back after he got off of work-an hour and a half later. They were STILL trying to get the 2nd line in. I think my heart has broken a few times during this whole experience, and if it had any more room to twist, it certainly did when I saw her. Both of her wrists were already very bruised and you could see the dozens of tiny needle pokes they had endured. I imagined them poking her over and over again, and her not having us there to comfort her. Her femoral line (in her leg) was bleeding (we were later told she lost a lot of blood) and her one arm was strapped down. Poor poor baby-it was one of the most horrible feelings I have experienced during this entire ordeal. Again, we comforted her because she kept grimacing, especially when people moved her or touched sensitive spots.

And again, all of this, an hour and a half-and they still failed to place the line.

I have to admit, John and I could have killed them. 

Earlier yesterday, I had been able to talk to a fellow that John and I both trust and like very much. We wanted to know why Mira is not progressing. We discovered some interesting things. They believe her swelling is not subsiding because she may either be suffering from an infection (that they cannot find through a culture) or severe inflammation. She is already on antibiotics, so the infection should be taken care of, but the inflammation is a wait it out situation. And she may possibly have such severe inflammation because of her extended time on the bypass machine during her surgery. The norm for most kids is to be hooked up for an hour, hour and a half max. Mira was hooked up for THREE....Another contributing factor to her inflammation is all the foreign objects her body is detecting-the tubes, the lines, and the stent that is in her heart.

As I am writing this, the situation is still rough because Mira will have to have a surgeon come in and try to put that awful line in her again. They have warned us that if they cannot get one into her in the traditional way, they will have to cut her wrist and put it in that way. I know it is irrational and doesn't help, but I feel like my baby is being tortured-how many more holes can they put into her?

I vow that when I go visit Mira, she never knows how I am feeling. All she knows is that I love her and am there to comfort her. Mira doesn't need a mom who is scared or feels badly about the situation. She is fighting so very hard, and going through so much-I fight every day to be positive and to go in to her room and not to freak out at what they throw at us or at how she looks. So that is what I am going to do this morning. Thank you for letting me leave all my worries and fears on this page and not with Mira. If any of you have an extra minute to send her some love and hugs, she probably needs it today especially. We will keep you updated!