Looking Up
As of right now, Sam will not need surgery. Thank you Lord!
The surgeons were pretty convinced yesterday morning Sam would need surgery based off the six ultrasounds he had throughout the night on Sunday. As they came and pressed on his tummy throughout the day yesterday and rested his belly, they became less convinced Sam would need surgery.
Today we started some Pedialyte at a very slow rate in his g-tube. Those of you who know Sam, you read right, I said his g-tube, not his j-tube. After the misery of the getting the j-tube inserted in radiology (not surgery here), surgery pulled his j-tube that evening possibly thinking it was instigating the intussusception. For a few reasons, this could be a disaster or a blessing in disguise.
One reason is the j-tube has often kept us out of the hospital when he gets sick and is not tolerating Pedialyte or formula in his g-tube (stomach). Another reason is that he is currently dependent on his j-tube for half of his daily feedings. The blessing would be, he will tolerate ALL his feedings in his g-tube and not need the j-tube. We would absolutely love only a g-tube.
The surgeon and nurse laughed at me in the middle of the night when the j-tube was pulled and the g-tube was put in when I said, ”Oh it’s so beautiful.” If you know anything about feeding tubes, you can understand my excitement. If you know Sam medically, you can understand my apprehension. It’s going to be a blessing in disguise.
The best news is Sam woke up this morning clearly feeling much better. He’s sitting up and even giving quite a few smiles. He hasn’t made any sounds yet, but I don’t think we’re far from that.
A night and day difference from yesterday!
The hotel we were staying at did not have anymore availability, but we were able to get a room at the Ronald McDonald House here and we able to cancel our flight with no fees.
I’d be lying if I told this is easy, but you know me, I like to stay focussed on the perks. It’s much better for the soul. I also believe we are in the best place possible. Cincinnati Children’s is internationally known for caring for kids with airway and esophageal disorders. It doesn’t take long having a kid like Sam to see that.
Pray Sam will tolerate his feeds, the intussusception has fixed itself, it will not recur, and for NO MORE SURPRISES!
Thank you for walking alongside us in this journey, the continued prayers, and the encouragement. They both go a long way.
Sam Strong!
Faith Over Fear!
We Have an Answer!!!!!
X-rays showed Sam’s j-tube (the part of his feeding tube that is threaded into his small intestines) is retracted and coiled up into his stomach. As you might imagine, this is very painful. Poor buddy. No wonder why he’s in so much pain and throws up every fifteen to thirty minutes.
At home, radiology does the feeding tube procedure, but it sounds like surgery is the specialty who will do it here. Pray for a quick and smooth procedure tomorrow morning. He gets his feeding tube changed every two to three months and it’s a pretty painful experience for him. This procedure is why he has so much PTSD when he sees an x-ray table. He just had it changed two weeks ago. Poor guy. Hopefully the little bit of morphine he’s on will help.
I feel terrible for him, but this is literally the best possible, fixable answer. This poor guy can barely catch a break. He is the strongest, toughest little boy.
Pray both Sam and I will get some restful sleep tonight and this will be the only complication. We want to hopefully get out of here tomorrow and be able to catch our flight home on Tuesday!
Sam Strong!
Faith Over Fear!
Eye Surgery Update
Except for his PTSD when we walked through the second set of double doors, Sam’s eye surgery went well. The genuine kindness and enthusiasm from the many who know him in surgery is definitely helpful. The tummy portion didn’t yield any answers, but we were able to get his feeding tube changed, which is always a bonus to get this done under anesthesia.
After Sam came out of recovery, the anesthesiologist stopped by to check on him. She commented Sam was doing much better than most kids do after this surgery. Yeah, he’s one tough little boy.
He was really miserable the first night, but has been doing really well since. The medical world never ceases to amaze me. It’s so crazy what they can do. We noticed right away, Sam’s right eye is straight!
We got a good laugh the next day when he hopped off the couch after his morning nebs and meds routine, pointed to his eye, shouting “Eye!”, in the funny way he says it, and started running. He often runs circles around our center island in our kitchen. He started his run and kept bouncing off the cupboards. Again, he noticed something was different. We couldn’t help laughing at what looked like a ball in a pinball machine.
One of Sam’s home care nurses said, he’s a reminder that things could be so much worse. He goes through so much and stays so happy all the time. Well said.
Sam Strong
Eye Surgery Tomorrow
Sam will have his first eye surgery tomorrow. The hope is this will fix both eyes and he will only need the one surgery. He will also have a scope to look at his esophagus (endoscopy).
The ophthalmologist doing the surgery explained, “Often there are kids who have one lazy eye that needs surgery to be corrected, sometimes there are kids who have two lazy eyes that need surgery to be corrected, and rarely, are there kids who have two lazy eyes and nystagmus that need to be corrected with surgery.” Yep, that sounds like Sam.
As always, pray for his doctors, nurses, anesthesia team, and anyone else involved. Pray for a smooth and quick recovery for Sam. Pray for a successful eye surgery and answers to our seemingly never ending digestive issue questions. Pray peace for our hearts.
Sam Strong!
Dilation #5
Sam will have another dilation tomorrow. Yes, he’s had WAY more than five dilations, but I started the count over after his last major surgery. We are hoping and praying he won’t need as many as the first time around.
In the four plus years, Sam’s had a trach (breathing tube) and feeding tube, he hasn’t had to have a granuloma cauterized (burned off), which is pretty good. This is basically skin starting to grow where it shouldn’t. Before the dilation, he’ll have a tracheal granuloma cauterized. Typically, this can be done in the clinic, but Sam’s ENT thought it would be better for Sam under anesthesia, also knowing he could do it alongside one of Sam’s dilations. We were very thankful for this. Sam’s nurse and I were not looking forward to having to hold him down for that procedure!!
We are also thankful, Sam will get his feeding tube changed in surgery tomorrow. As I’ve said before, this is a procedure he gets done routinely every two to three months. It now takes three, sometimes four of us to hold Sam down. As soon as he sees an x-ray table now, his little body clenches me with fear. We have to literally peel him off of me, to get him on to the table. It’s a fairly quick procedure, but I’m sweating by the time it’s over. Sam’s one tough cookie, so when he’s sobbing hysterically throughout the procedure, we know it must be painful.
We are thankful to be able to knock out three procedures in one tomorrow!
We’ll take some extra prayers tomorrow for Sam’s Surgeon, ENT, and anesthesia team. Pray for a smooth and quick recovery.
Sam Strong!
Faith Over Fear!