Although we had hoped to be able to meet with Dr. Adamson today regarding putting Ned's bowel back in his stomach cavity, he wasn't in the hospital due to several late night emergency surgeries. From a practical viewpoint, I can see how we weren't his priority! He sent word that he would come by to discuss it with me tomorrow and I really appreciated him making sure that I was kept informed, he could have easily just not shown up until tomorrow- I really wouldn't have thought that much about it? Hopefully we can get setup for that final surgery tomorrow....we'll see how it goes!
Otherwise, Ned had a pretty good day. We had some real troubles with the tubing for his oxygen. It kept coming apart and I would suddenly notice that I couldn't hear the air flowing out of the nasal cannula. Sure enough, when I would look down, there would be the air hose just dangling in the air, not connected to the vapo-therm at all. Needless to say, I unnecessarily panicked. I was in such a furious hurry to reconnect the air hose, that I have gotten it completely tangled with all the other wires. In fact, it occurred several times and by the end of the night, I could hardly get the child back in his crib for the massive knot of wiring that needed to be placed "comfortably" in the bed with him? They also reduced the flow on the high-flow oxygen he is currently getting. When I left, his oxygenation stats had decreased some from like 100% to 94%. I think they will either start to trend back up, or they will start to trend downward, in which case they will increase the flow agian......this breathing is such a process for him! The child is not a fan of change in any way, shape or form- it is a trait he inherited from his father!
I have met a wonderful follower of Christ up here, her name is Melissa. Melissa is one of the few people I have ever met who naturally instill a sense of joyful peace in you as you speak to her and watch her face. Her son, Joel (pronounced Joe Elle) is in the room beside Ned. Joel is in the 8th grade and is being treated for a gunshot wound to his head. Melissa and her family are believing God is going to heal Joel and I have been blessed just to have met them and been given the opportunity to witness thier faith. Please pray for Joel. Melissa firmly believes God has given her this trial to teach her joy in the suffering. Please also pray that she will be able to experience that joy....I certainly know she spreads it!
That's the thing about the PICU, it is a group of families all dealing with serious medical issues that nobody ever thinks they are going to have to face. There is another child on the unit who has had a serious allergic reaction to penicillin and his skin is eroding off his body. Another infant girl is on ECMO. When I walk by her room I am so reminded of why I prayed so diligently that God not allow Ned to need that treatment. Although it is such and extreme envioronment, wrecked with stress, in ways I love being here. I may have developed that mental/behavioral disorder like when kidnapped victims begin identifying with their abductors....I often think that is possible! The truth is that this place is where I have last seen God so clearly and I feel drawn here. There were many examples in the Old Testament where people would return to places where they had built alters of remembrance. They were clinging to those times and places where God had revealed Himself and made Himself known to them. I understand that affection for a place now like I never did before.
One last thought for the night. I was walking and running a bit tonight (very well may not be able to crawl out of the bed in the morning), and I was reflecting on that book I read in college "In His Steps". I love the entire concept of the book because it is just about a group of believers who choose to start living their lives just like Christ. To seek the will of God in every small detail of their lives and to seek how that will change their lives and the lives of those around them. As my mom would say, "I was daydreaming that" it would be amazing if people would really make that change, that commitment. I see how each persons obedience makes such a difference for others, how much more would the obedience of the masses make a difference in this world? As I arrived back at the hospital, I saw a group of kids being driven around on a scavenger hunt...it brought me such joy. My mom used to organized really detailed scavenger hunts for us, in fact, that was what we did for my 16th birthday party. I always loved the excitment over finding the next clue and then rushing as quickly as possible with the group to try to find the answer and get to the next clue.... For me, the fun of the adventure was endless. Then it all made sense to me, that's what it would be like if we all lived in obedience seeking God's will at every small turn and making decisions for Christ rather than for our finances or appearances or any other short term high of life. We would be working together to seek out God's great adventure and once we received the joy from being used by Him in one area, we would be excitedly anticipating what He would lead us to next. It sounds so fun and joyful, wonder why we don't all choose that path everyday?
That's all for tonight, I must get to bed. I love you all dearly. I appreciate your williness to continue to pray for our child and your interest in his life. I hope you all have a glorious day!
Betsy, Travis, Jack & Ned
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4 comments:
RIGHT ON THE MONEY SISTER!
A scavenger hunt, that is the truth. I feel like that right now, that He is trying to use me to show Him to so many now. I can now look at it and find joy even in the burdens of those individuals who have burdened my heart. Thanks for showing everyone your faithfulness.
Wow, Betsy... I have so much to say! :) I'll try to be brief, though!
tangles...Oh how all of those cords and tubes can tangle with each other and themselves! I remember when things would come disconnected, and I'd sort of panic to get it right, call for the attention of the nurse, etc. What I figured out and tried to remember is that if the nurses aren't panicking, that I shouldn't either. I don't know if that helps you or not, but once I had that mentality, I had a general "oh well" attitude toward stuff like that... knowing it needed to be fixed, but also knowing that she was fine in the meantime. One time I learned, though, is don't EVER say, "The tube came out" when you're not talking about the breathing tube! Boy do those nurses come running from all parts of the room! LOL Don't worry, Ned! You'll have your Pinnochio moment soon enough! :D
NICU/PICU...I totally felt that way about Cadenne's first hospital. They became like family. While I know that the 2 hour drive was NOT fun, I somehow felt like I had a hole in my heart when we suddenly weren't going to CHLA anymore!
In His Steps... Read that in college, too. Loved your last paragraph. You have an amazing way with words and should totally write a book! Scavenger Hunt is an excellent analogy... I'll have to think more on that!
OK, I have more, but I don't want *this* to be a book! I'm so thrilled to hear about Ned's progress and can't wait to see what else God has for the life of your precious little boy!
Oh, and psst... we need more pics of Ned!!!
Best of luck with Dr. Adamson tomorrow. Thus far, God has steered the hospital staff and your family to make the choices according to His will. I pray that God will continue to give you and the faculty the strength and courage to make those decisions for Ned's bowel surgery. Ned is precious. You are blessed, as you have blessed many others throughout these trying times. As you mentioned the other young patients you have met, it was like I could see a 'visual' image of each and just hearing of Joel reminded me of Hunter, who will be in Middle School next year, and how unsafe the world is today. I cannot keep my children sheltered, though I can show them His way. I pray that Joel has a quick recovery and his family will put their faith and trust in God's hands as you and Travis have. Rest assured that with Melissa's family having such strong faith, God will bless them even more. Prayers to you all...
With Love,
Belle, Heath, Hunter, Carlton & Carlie Grace Jackson
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