This Takes The Cake For Sure

Elias is still in the hospital, it is a day to day thing at this point. He did not tolerate the breast milk again. We are all in agreement that it is sore and tender from the many falling out episodes we have had the last week. So after the trial failed they again pulled out the G-tube, left it out for 35 minutes this time then reinserted, and began pedialyte again. When we asked why we were repeating this, especially since we did it yesterday, they told us that....ok brace yourself....anyone who has been following this since the beginning is not going to believe this....do not drink anything while you read this....you will spit it all out and ruin your computer....you have been warned.....they told us that the leakage from the tube might be contributing to this problem. WHAT?!?!?!? Did they say the words leakage and problem in the same sentence. Katharine and I were so stunned we had to call someone back in the room to actual question this. I asked the surgery nurse practitioner (in a very slow word to word tone)...."you do remember that we had been complaining of leakage all this time, right? So explain to me why is it now causing him not to tolerate his feeds after three and a half months?" The response we got was, "It is another thing we are trying. (The G-tube) is tender and sore and needs a break and the leakage is not helping the way it feels."

OH MY! We are not sure what to say about this to be honest. We were floored, it was almost as if this was a dream. They planned to try breast milk again this evening, but we are a little concerned because they always start it then leave. How can he be observed if no one is in the room? We explained that earlier and told them you can not look at the clinical numbers here, that is not being affected...it is him thrashing in pain and there is not an alarm for that. So we will see in the morning what happens.

We also had a mini melt down today while at the hospital. One that was long over due and actually received rather interestingly. We were talking with the case manager about our nursing situation and the feeling that we really need a few more hours a day than we are getting. We felt that the NICU case manager, based on our conversations with the nursing agency and our medical assistance case manager, sort of underestimated the workload and need. So we got shortchanged. There was actually three or four things going on in the room at one time. Elias was thrashing from the pain of the feeds, the surgery people were in to evaluate and witness his pain, the case manager was talking to us, and for some reason at that moment a nutritionist came in asking Katharine some questions. It was chaos and we were jumping from conversation to conversation. Eventually, it evolved into the frustration of being back so soon, for a reason we were desperately asking them to address prior to discharge and crossing into all this was the way things were going at home and with nursing. Katharine was making a point about how on Sunday with both of us home and Elias having so many needs that neither one of us was able to even stop for 5 minutes to eat something. Elias' care, and I quote several sources on this, "has so much going on and is very mechanical." Not to mention babies do not follow schedules, it is something you have to adapt and flow with. Katharine got so spirited and frustrated she broke down, which of course led to me taking over and eventually finding myself fighting back the emotions as well. They all stopped and everything was still, except Elias. We explained how we knew it wasn't going to be easy at home and there was going to be a huge adjustment. It is not too difficult that we can not manage, but we honestly need more help. Just a tiny bit, twelve hours instead of ten. Those two hours would make a ton of difference in time management for us. The nurse practitioner told Katharine that they all have been amazed by us since the beginning, and that Elias was very lucky to have us as parents. She mentioned how on many an occasion it was brought up how well we handled disappointment after disappointment and constant bad news. How patient we have always been with all of the issues and that we were able to take care of him for ten days at home and come back looking weary, but ready and able to care for his needs. They all acknowledged how hard it is to care for someone like Elias, and they are the professionals, but we have always risen to the occasion and out performed any expectations they ever had, casting zero doubts in our ability to take care of him on our own, but knowing that sometimes things can be too much for parents to try and handle. Hearing that was reassuring and appreciated. It was not said as a shallow attempt to console and support, but very sincere. I think today was the day that we hit the wall that we were destined to hit at some point. Everyone has a breaking point, and today was ours. I wish we could say that after letting it all out it made things better, because it didn't. It did however give our minds the emotional release it desperately needed. If nothing else I think it made the medical team take a step back and look at everything from a non-clinical viewpoint. They placed themselves in our shoes, something they do not have the luxury of doing for fear of misjudging decisions, and saw our points from a parental stance, instead of a medical one. I also think for the first time we were able to acknowledge and speak on our emotions with the new diagnosis and how frustrating it has been not to have time to even attempt to accept it. It's like the home project that desperately needs to be completed, but something else always gets in the way or comes up forcing you to continually postpone the inevitable. It is so rare that 98% of medical professionals do not know what it even is. They cling to the anemia and move forward, but that is far from what it is about. We realized today just how much is on our plate and all that we will be dealing with in the coming years, but at the same time none of it matters. It is about Elias and loving that boy. Giving him every ounce of energy we have to care for him and keep him happy. Thank you all for listening and supporting. We have certainly covered the spectrum of emotions here tonight. From the comical reasoning to the rightful outpouring of frustration. The tears and voice were recognized and acknowledged today. We will continue to research and advocate to ensure Elias gets all he deserves. We are ready to openly share our thoughts and feelings on Elias' Fanconi Anemia in our next update. Even though Elias did not get to come home today, I think we made a giant leap of progress anyway. There is always Elias' "great big beautiful tomorrow."