Open Window

This morning I feel as though our window of opportunity is open and I really want to try and go through it before it is closed once again. Ashley is breathing better than she has since her transplant and we are completely off of oxygen support. Her lungs are clear and she holds her sats around 98. Her respiratory status is very stable at this point and that is a statement I thought we would never make again. She has been free from infection for several weeks and she looks wonderful. Once again our struggles are with her feeds. In preparation for her CT scan yesterday(which they found no perforation!) Ashley had to consume 180ccs of contrast. It was run through her new G-J tube at a rate of 50ccs per hour. 50ccs! Our goal for full feedings is 55ccs an hour and Ash has never been able to tolerate this amount of volume without becoming nauseated and vomiting(which leads her to aspirate and then we end up back on the ventilator). Watching her consume the contrast at such a high rate made me feel a little confused and encouraged at the same time. Why can't she tolerate her feedings at this rate? This morning we have started her feedings back and we will make changes as quickly as she can handle them. Our goal by tonight is to be at 15ccs and then tomorrow we would like to be at 25 by evening. I am praying that for some unknown reason to all of us that this time it will work for her. I pray and pray that we might take this opportunity to climb through that window and get out of the hospital before she picks up anything else. Please pray for her to handle the feeds and to be able to leave soon. We had hoped to feed Ashley breast milk, but we will not be allowed to. It has been shipped and is sitting here waiting for her,but their are members of the team that feel the risk it too great for her. They are not convinced that the pastuerazation process has killed possible CMV, Norwalk, Roto, etc. virus'. Of course we are disappointed because we had hoped to feed Ashley something good, wholesome, and natural, but at the same time I feel we must use wisdom and respect their concerns. We would never want to jeopardize her new organs and risk losing the gift of life that was provided for her. They would just prefer us to feed her a sterile food source as opposed to a non sterile source. So we will continue feeding her the formula and pray that she will absorb, tolerate, and grow on it.

I shared with the team that I felt like we should jump through our window since it was opened and their response to me was this, "Lets hope your open window is on the bottom floor and not the top. We think you should just look out of it rather than jump through it." OK. So maybe they have a point but I see a glimmer of hope shining through it and I am already feeling the breeze from it. Ash is only on one other medicine outside of her transplant maintenance meds and we will be going back to CT on Wed. to determine whether or not to stop it. She is still being treated for the mold in her lungs, but they are not sure if it is still in there.

Ash still seems to be struggling with a lot of discomfort and pain, but they are thinking it is stemming from the weaning schedule. They believe it is coming from withdrawals and not from her surgery on Friday. I don't know it they are correct or not, but for now we have no evidence of any problems that could be causing her to scream. They will be working today to try and control the discomfort.

So open window or not we are proceeding cautiously and I am seeking to find it He is the One who has opened it or if I am prying it open with my own hands. I am going to go try and comfort my sweet girl as she struggles with something. Thank you for your prayers and your time spent her on her story. Take care and have a great day. Trish