There is still plenty we don't know about Landry's condition. He is still going through tests and we are playing the "wait and see" game. So - no surgery yet. The surgeon (who is not the original one, she is gone until Thursday) is trying to avoid a surgery at this point. This window of 2-3 weeks post surgery is the least optimal time for another surgery. So where do we stand...well, I'll back up a bit and explain what happened yesterday. We went to see Landry's peditrician because he was unable to keep down anything bigger than an ounce and was not motivated to eat even that. She sent us over to the hospital to be admitted. We were hoping to be able to get back into NICU because we have grown to really love those nurses and they knew Landry but we were told we had to go to Peds since Landry has been on the "outside" - he could have picked up some illness and they didn't want him to infect other children. It was disappointing but it is turning out to be for the best - we have our own room, I can get meals delivered, Cade can visit, there is a playroom for him to play in, we can sleep over, and he is the only patient on the floor right now. One of our very favorite nurses from NICU even came up to visit before leaving last night and two wonderful NICU nurses are putting in Landry's PIC line today. This is similar to a broviac - too bad he just didn't still have the broviac in...too bad we left the hospital at all on Sunday but that is all a mute point now. So yesterday's results from that upper gi barium test showed that most of the dye is not traveling through the entire intestine. Some might have made it through but not much. The surgeon is hoping that the cause of this might just be that food is unable to pass from the bigger part of his intestine into the smaller. The section of the intestine that was reattached during the second surgery still had a big size discrepency and it might be having a hard time passing through in larger quantities. There could also be a kink at this point or the intestine might have folded over on itself. The best way to think about it if it isn't a kink or fold is that his intestine at this point is like a funnel - when it gets too full, going from the larger portion to the smaller portion, it gets backed up. This is what we are hoping for at least because then it will just take time and a whole lot of patience to self correct as it goes back to its normal size. If it is twisted or completely obstructed, however, he will need surgery. Hopefully more tests and watching how he does will give us a clearer picture. The doctor thinks that we will be here probably another month - but that is a big guess since we aren't even really sure what we are dealing with. There are many options for bowel problems - we have options should his case change. The surgeon mentioned that sometimes this issue could take 2-5 years to correct completely. It is hard to wrap my head around that but whatever we have to do - we will, one day at a time.
I borrowed the below passage from a friend who is fighting her own fight right now against cancer and I had to share it. Situations like this sure put life in perspective.
There comes a time in your life when you realize that if you stand still, you will remain at this point forever. You realize that if you fall and stay down life will pass you by.
Life's circumstances are not always what you might wish them to be. The pattern of life does not necessarily go as you plan. Beyond any understanding, you may at times be led in different directions that you never imagined, dreamed , or designed. Yet if you had never put any effort into choosing a path or tried to carry out your dream, then perhaps you would have no direction at all.
Rather than wondering about or questioning the direction your life has taken, accept the fact that there is a path before you now. Shake off the "whys" and "what ifs", and rid yourself of confusion. Whatever was---is in the past. Whatever is---is what's important. The past is a brief reflection. The future is yet to be realized. Today is here.
Walk your path one step at a time---with courage, faith, and determination. Keep your head up and cast your dreams to the stars. Soon your steps will become firm and your footing will be solid again. A path that you never imagined will become the most comfortable direction you could have ever hoped to follow.
Keep your belief in yourself and walk into your new journey. You will find magnificent, spectacular, and beyond your wildest imaginings.
----- Vicki Silvers