waiting for surgery

Good morning!  Ryan is bathed and lying in bed watching Grandpa (my dad) and dad have a conversation. Travis’ mom should be arriving anytime now, and we are so grateful to have our parents here with us. Yesterday we got to Children’s at 930 AM and were happy to see a nurse who has taken care of Ryan in the past.  She remembered him, and we are glad to have her assigned to him again today. Yesterday the nurses tried twice to start an IV and failed both times.  They called the PICC nurse who used ultrasound to start one in his upper arm, and Ryan got his first two antibiotics.  While his fluids were infusing, he started getting upset, and we noticed his IV had infiltrated.  His poor upper arm was hard, red, warm and full of fluid.  So needless to say, our IV experience did not go so well yesterday.  The transport team came up to start a new one as the surgeon came in the room. Thankfully, he decided to skip the IV and just hydrate Ryan through his feeding tube.  He will get new IVs in surgery.

Speaking of surgery, he should be heading down in the next hour.  I will tell you that even as a nurse who understands a lot about medical procedures, I know this surgery is complicated.  I do not think I have allowed myself to accept the scale of complexity Ryan is facing.  We are praying the surgeon can use the appendix for the procedure because if not, Ryan will end up having a bowel resection to use a piece of the small bowel as the conduit from the bladder to the belly button which will be the stoma we will cath him through.  He will have a large incision in his belly as well.  When we can take him home, Ryan will have a suprapubic catheter stitched into the newly created stoma in his belly button to allow everything to heal and keep it open as well as a catheter in his privates for three weeks to keep his bladder empty during the healing period.   All this because the nerves to his bladder have failed.

Please pray he does not end up with a bowel obstruction or ileus as that is his history, and because his abdomen is being operated on and his intestines will be manipulated, the risk is much higher with this surgery. Pain control will also be an issue as the anesthesiologist is going to try to refrain from using opioids as they contribute to the ileus problem.  But that said, if we think Ryan is in a good amount of pain, we will be pushing for pain control over worry of a blocked bowel.  It will be a very delicate balance.  When he had an ileus after his fourth brain surgery in 2012, he was hospitalized for a month and ended up on TPN. I really do not want a repeat of that.

Please pray for our older kids as well.  They struggle every time Ryan is hospitalized, but this time they understand the complexity of the situation and how hard the recovery will be for Ryan.  That weighs heavy on all our hearts as he simply will not understand why he is so uncomfortable.  One of the kids is having physical symptoms because of the amount of stress which just breaks my heart.

Your support is such a blessing to our family, and we cannot express how much it means to know we have a strong, loving tribe around us.  I will update after surgery is over which will be a while as this is expected to be a four hour surgery not counting his time in pre op and recovery.

Much love to you all!


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