It’s been a week since our last installment, and Shawna let me know that I need to stop slacking and write another update for all of our wonderful followers. So here goes…
Seton is four weeks old today. What a blessing. For someone not expected to live four days, four weeks is quite something. Shawna and I are so fortunate to get to be his parents. The last week has been pretty tough on our little man. In less than two weeks our hospital tally now sits at four visits – three ER and one straight to Radiology.
His first two tubes were from last week, and both were displaced. The third tube was in a great position and actually stayed in position. Then it clogged. Someone throw us a bone here! Tube number four was a doozy. It took about six times going down before it was in position, and like clockwork, coiled in his stomach within 36 hours. I count new grey hairs each morning in the mirror.
That brought us to yesterday’s excursion to the ER. It began about 1 AM with Shawna and our home health nurse heading in for our “routine” tube replacement. Little did we know this trip wouldn’t end until 4:30 PM the next afternoon, after they tried to admit us to pediatric ICU. 15 hours in the hospital and it was absolutely delightful. (Insert sarcasm here) It was all attributed to poor communication. Tube number five rests quietly were it’s supposed to be, and we pray like crazy it stays exactly where it is for a long time.
The really fun part of all these tubes is the blood that is spit up repeatedly for days after they are placed. I guess on the upside, our little dude already has quite a wardrobe due to needing 10 clean outfits a day. He’s a trooper and marches on every day, and he never even says a word about it! J
Seton’s visit with Dr. Habersang on Monday went pretty well. His newest x-ray showed his lungs looked quite clear, which is awesome. The breathing treatments – and some help from above – are really working to keep those lungs free and strong. Everything outside of the tubes is checking out well.
His mom is bordering exhaustion, and I am not far behind. When the day comes to an end, if this is our biggest complaint, we’re doing awfully well. Emotionally, our extremes are lessened as time passes. We are still not set into a solid routine, but I’m beginning to learn that is the new normal. We are continuing to hope, pray, and believe for healing. My brain is fairly fried at this point, so this post is a bit scattered and void of quality details, and I’m pretty sure I’m rambling a smidgen. Please know we appreciate you all keeping up with us and sending your thoughts and prayers.
Zane
"You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you...do not be afraid; do not be discouraged. Go out to face tomorrow, and the Lord will be with you." 2 Chronicles 17
thanks for the update...we will continue praying for all of you. xoxo
ReplyDeleteDear Zane and Shawna,
ReplyDeleteYou asked about feeding tubes. It is very difficult to keep them in place. That is why they are usually surgically placed. However, I understand why that may not be an option for Seton since it does require sedation.
We continue to pray for all of you. The fatigue is overwhelming, and I pray that you find at least bits of relief. Diane Duty
Dear sojourners,
ReplyDeleteI am following your blog as the mother of a wounded lamb myself. I have followed your story through Brad and Ashley Ingram. My heart is heavy for you and have also learned the challenge and the power of living day by day. I never understood the concept before my Thomas came. Thomas will soon be six. we know not the future. We've grown much from the past. We are also under the care of Dr. Habersang, deal with brain issues, respiratory issues, feeding issues, homehealth care, insurance. Thomas does have a Gastric Feeding Tube. I am available to answer your questions from a mother's point of view and you are free to "check it out" if you want! I can send pictures or bring him to you. It has been a great blessing to us in the long run, although we were not given the choice once we had the nasal feeding tube in place too long. We were given a two year "sentence" of which we will soon celebrate the tripling! Our love to you. I am available for any questions, encouragement, co-miserating, etc. I have learned quite a bit about resources and might be available to "throw you a bone" as requested. Financial assistance has become a bit of a forte for me! Call any time. I promise not to stalk you, require any emotional capital from you, or force you into friendship! I will simply be AVAILABLE to meet any needs for which I have been equipped.
Judy Lynch 282-0825