Well, I'm finally back on-line. I had planned on posting from the hospital computer in the PICU parent waiting room, but someone had re-booted it and no one knew the login password. So it is currently, and indefinitely, locked up at the login screen? Once I plugged in my laptop tonight, the latch to open the lid was broken off and I couldn't get it open. So close to being able to retrieve my email...it almost sent me into a panic. Then, being so very resourceful, I used my earring to unlatch the computer. I think I may have a future as a either a burgular or a CIA agent!
Ned's first trial on the vapo-therm has gone wonderfully. He looks so much more peaceful now than he did the first time he was on it. I can really tell his muscles have built up and breathing is less strenuous for him. He still needs to step-down to the regular oxygen nasal cannula, but now our main issue is nutrition. Ned is loosing weight because he is unable to absorb very much of his feeds because his body is still emptying into the ostemy prior to going all the way through the digestive tract. So, we're planning on having a nutrition consult tomorrow, as well as, meeting with pediatric surgery to decide when to put the ostemy back in (our final surgery!!!) Personally, I would just rather go ahead and put the ostemy back in and move forward from that point because they are going to have to re-intubate him for the surgery. The weaning process shouldn't be as long, but we could be working on that and bottle feeding while gaining weight through the feeding tube? We'll see what Dr. Adamson (our surgeon) says tomorrow? Please pray that God will be in control of all decision-making to ensure that we stay on the course He has set for us. In the meantime, Ned and I are enjoying sitting around together and snuggling in the recliner!
I know I mentioned that the other day in the PICU was nuts.....actually, the entire latter part of the week was no picnic! I was talking with one of Ned's nurses who had been with a baby who had had a very difficult day. She made the comment that her child on Thursday may have been a tad bit more problematic than Ned's worst day when she was his nurse. I kinda laughed and said "surely not that bad", but several hours later, that other baby died. It wasn't really until that moment that I realized how close we had been to loosing Ned that day. I believe that God protected and sheltered me during that time. I knew things weren't good that day and that they were having a difficult time stabilizing him, but it hardly crossed my mind that they wouldn't be able to stabilize him or that he was verging on plummeting past the point of salvation? I am so thankful that I didn't understand then and that I was able to look past the immediate circumstances to the promises of God. It is in such reflection that I see God's hand guiding my life and I am overwhelmed at the protection we, as His children, are given in His grace!
As you continue to pray for Ned and his breathing and eating challenges (thank you, thank you, thank you), please also pray for Trent Hopper. Many of you know him, he is the son of Theresa Hopper (Mrs. Hopper the choir teacher for those of you who attended South School). He is at UNC hospitals battling colitis (not real certain on that spelling). He has been dealing with it for a year and they are praying for a healing to avoid surgery. Please add this to your prayer list and include his wife Chloe. They are still somewhat newlyweds and are facing a great deal of obstacles in their lives right now.
Thank you all for your continued support and prayers. Much love and many blessings to you all!
Betsy, Travis, Jack & Ned