When Noah was born, his diagnoses, my c-section, and the subsequent upheaval of life, caused our time in Rochester to be incredibly emotionally exhausting. Because we knew about and planned for this surgery, we knew a positive outcome would be forthcoming, we are at peace (and exhausted).
The first two nights he did not sleep hardly at all, and finally last night he was able to rest, though he kept rolling over onto his owie and waking himself up.
Noah’s pain is now controlled, and he is overall feeling better by the hour. Today they did a CT angiogram as well as a bunch of cardio testing “right away in the morning” at 2:30, and as he is coming out of sedation, we are waiting for results. He has not been able to eat or drink anything since surgery, so you can pray his tummy would cooperate. There is no leaving the hospital until he can drink and eat. He also has thrush, which is making eating/drinking more difficult. Pooping continues to be a struggle.
When he is upset, riding the wagon in the elevator is his favorite thing. What did sick kids do before games/movies on the kindle?! It has been an extremely helpful tool to get him to calm down or distracted from hard things.
Thank you for praying, friends. It seems the worst is past. I have been reading the psalms.
For the Lord is good; his steadfast love endures forever, and his faithfulness to all generations. Psalm 100:5
In the last episode, Noah was all fixed up. This is the episode in which we buzz around trying figure out his quirks to help him feel better.
The first meds they tried with him were unsuccessful. He is like a pain killer connoisseur. He samples and spits, literally as he vomits and figuratively as his body does not respond. They were trying some pretty heavy meds on him, to no effect.
People with Down Syndrome sometimes lack enzymes required to break down and use drugs. The tricky thing is that not every person is the same, and there’s not research to know which things are going to be most helpful (or not).
Last night was misery. Not much helped. They changed the plan hour by hour. He was in pain and couldn’t relax to sleep. He was crying and saying “no, no, no” most of the night.
If he were to poop and pee on his own, it would make a big difference to how he feels. Good news is he is drowsy and doesn’t care about all the wires and tubes sprouting from him too much yet. The chest tubes keep putting out fluid, so unfortunately it stays. One other line came out today, so he’s down to 4.
I keep reading in the Psalms about God’s closeness and power. The God who created all things personally cares about Noah. We know this little fix will help Noah on this earth; but we look forward to complete healing in the life to come.
“Doctor, French Fries.” Was the promise we made yesterday as we took Noah to all the pre-op appintments and tests required before surgery today. But in reality, it was more like, “Doctor, Doctor, Doctor, Doctor, Doctor, French Fries, Doctor, Doctor, Doctor, Doctor, Doctor, swimming pool, park.” I am thankful for the thouroughness of Mayo and his doctors, but wow. It was gruelling.
Through these appointments we discovered Noah has a LEFT ascending aorta. Look up the anatomy of an aorta, it always arches to the right. We discovered Noah hates the covid test the most. The lady made his nose bleed, and the result was of course negative. We discovered Noah is creeped out by wires. The ECG was a big deal, but the tech was patient, and eventually he cooperated.
He swam, played at the park, and slept with Mom and Dad for part of the night. At the end of the day, he cozied into the hotel pillow and said “sleep happy.” It was a perfect ending to a trial- filled day.
6:30 am we reported (a little late) for his surgery. Woody and Noah were rolled into the OR at 8am, and we didn’t see him again until almost 3. It went as planned, and that artery is moved to it’s proper spot. The surgeon said the diameter of his ribcage was small, and caused additional reason for the artery to press on his esophagus and trachea. We are relieved.
Praise God with us presenting us with this plan!! This is the start of an easier time eating and breathing, and should help him be more independent as he grows up.
Recovery is going to be rough. He is waking for a few minutes at a time to be sad and try to pull out tubes, but otherwise is sleeping. Pray often for his comfort, especially these first few nights.
He heals the brokenhearted and binds up their wounds. Psalm 147:3
The greatest healing comes from our creator. He does all things well. Noah has rolled the dice, and won against odds over and over. Only by the grace of God is Noah alive (and truly any of us!) This moment is a gift. Praise God.
11 For he will command his angels concerning you to guard you in all your ways. 12 On their hands they will bear you up, lest you strike your foot against a stone. Psalm 91:11-12
Noah is having a surgery Friday to move a major artery that wraps around his esophagus and trachea, affecting swallowing and breathing.
God has gone before us, and Mayo has arranged to fly in the international expert for this type of surgery since his anatomy/case is a little different. We are humbled and thankful for this amazing opportunity for medical care while so many in this world don’t have access. But isn’t it just like God to provide for our needs before we even realize we need to ask?!
We are heading to Rochester this morning for tests and appointments, and are planning to stay a while.
We don’t have any needs at this time other than prayers. Noah is developmentally like a 3 year old and does not understand all that will happen. Prayers for his comfort, peace, healing, and that he will not experience trauma.
I will try and update the blog frequently. Thank you for your prayers and support!
I like to think about it as a day to remember “they” are truly one of “US!” Noah holds physical, character, and personality traits which are more similar to members of our family than to others with Down Syndrome.Noah is just one of the guys around here. He gets in trouble in all the typical toddler ways. These are some typical sound bytes:
“Mom! Noah’s in the bathroom, and the potty is open!”
“Drop the legos!!”
“No, no grab grandma’s glasses.”
“No bite!”
“Babies don’t like to wrestle like that, play gently with him.”
He is your typical kid. He likes the things kids like. He plays the way little ones play. He has a range of emotions throughout the day (even the unpleasant ones!). He brings us joy because he is a child, and children deliver joy to their parents! I am thankful for his sweetness as I am thankful for all my boys.
Celebrate World Down Syndrome Day! Created in God’s image. Just like you.
James 1:17 Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.
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