A Bish Tale: November 2013

We have now been back in the hospital for 2 weeks and have gone from one extreme to the other. The first week we were here Brody had an echo to get a better look at his heart to see if there were any changes. The surgeon stopped by to talk and said that he did not see anything different with the echo and that he wanted to keep his plan of feeding and growing Brody. They decided to do a chest X-Ray to look at his lungs and they noticed that one lung was a little more wet than the other. They put him on a medication that is supposed to help get fluid off and started on CPT. He loves his CPT because they come in and beat on his back to try and break up the fluid. I call it his baby massage and most of the time it puts him right to sleep. This plan of treatment seemed to be working well and his following X-Rays showed a little less haze in that lung. The cardiologist was concerned at the fact that he only had fluid in one of his lungs. Usually you see it in both lungs or neither, so she wanted to do a little more investigating into why it would only be in one lung. She wanted to look at all the vessels around the heart and the ones going to the lungs to see if there was something funny going on. She scheduled another echo and pending those results, we would be able to go home this last Wednesday. I was pretty excited, but seeing as we are still here you can guess how things went from there. He had this other echo and there was evidence that the situation with his heart had gotten a little worse (not even mentioning anything with the vessels at this point). The cardiologist decided to send him for a CT scan in which they would get a better look at the heart and those vessels and actually be able to create a 3-D replica of the heart to get a better idea of what was going on. As of yesterday, those results had not been finalized and posted yet. They put Brody on continuous feeds at night to give him and his heart a break from eating. They would very slowly give him his feeds throughout the night, so that he wouldn't have to burn any calories and purely absorb all the nutrition. This meant he would not have to get up to eat which Mom would get to sleep a little better throughout the night, or so you would think. For whatever reason, I think I was up more with him on continuous feeds than when he was feeding by bottle. I don't know what it was, but he was very fussy all night long. I had them put him back on his gas medicine and that seems to have helped quite a bit. Finally, last night he seemes to sleep much more comfortably.

What we do know is that the Cardiologist will be presenting his case at confrence to all the surgeons and cardiologists to determine a plan of action on Monday. We were under the impression that they would be determining if they would need to do surgery or how they could better handle his condition medically. What seems to be the case is that he is being presented for surgery to determine what they would need to do for a surgical plan. Last night, they started using the term "pre-op." They have put him back on the heart monitors, taking blood, etc. that seem to be making preparations for surgery.

Needless to say we are a little stressed and nervous. We knew another surgery was in the plan, but were hoping to put it off for quite a while to get him bigger and stronger. That was always the surgeons hopes. With the potential for surgery so soon, it is really scary. The fact that we are having to do something so soon means that whatever they come up with will be a temporary fix and will need to be updated later on as he continues to grow, so more surgery. We endured a very long and complicated recovery after his first surgery, so I am nervous what it would be like going through surgery again. I'm just not ready to go through all that again. That sounds selfish I know, but in all honesty, I'm not ready for him to have to go through all that again. I try so hard to be positive and optimisitc, but it is a day by day, moment by monent struggle. Sometimes I feel so overwhelmed and like I'm failing miserably at being a mom and other times I feel like Super Mom. There are just too many different emotions and things going through me. I am just so ready to take this baby home and let him live a normal life. But will he ever get a "normal" life or will we always live in the shadow of this hospital? I am so greatful for all the doctors who follow him and are deciding his plan of care and I trust them completely. I know they have his best interest at heart. I pray that God gives them the knowledge to make the absolute best decision of care for Brody, I pray that God heals Brody and protects him throughout this process. I pray that Trey and I keep our sanity. I pray more for Trey in that he is having to work and deal with the stresses of that on top of the stresses of Brody's condition. It takes a toll on him I know, but he is an amazing father and husband and makes it all work. So, please continue sending up those prayers for Brody like so many of you have been doing all along. There is so much glory to be seen in what God has done so far and I pray for continued blessings.