Wednesday, February 27, 2013

Revision Supraglottoplasty Attempt: Houston, We Have a Problem

Preparing for Nolan's surgery was complicated, but we were extremely blessed to have friends who offered to take care of Matthew while we were at Buffalo Children's. I booked a dog kennel stay for Casey. We had all of our ducks in a row, and were awake at 3:30 am for the trip to Buffalo.

We checked in at 6:00 am, and headed up to the 9th floor. Nolan was exhausted from the lack of sleep and was also feeling the effects of not having his overnight feed. He sat in a chair next to Dennis and didn't do much of anything until our name was called.

Our name was called and Nolan had his pre-op physical. His temperature, blood pressure and lungs sounded fine. He was weighed and measured, and we were sent to a different waiting room to wait for the same-day surgery nurse who would take his history. Nolan was very excited to find the new waiting room had a wii gaming console.

The same-day surgery nurse called me into another room to take Nolan's history. Since Nolan's more recent surgeries have been done in Rochester, those records weren't in their system. When she opened his file, she noted that none of his records were in his system. Apparently, Buffalo Children's didn't start putting records into a computer file until very, very recently. I went over as much of his history as I could remember, and the nurse had to leave to ask a fellow nurse how to spell "gastroparesis." She then took a look at Nolan and remarked on how healthy he was and how it was hard to believe he had so much medical history since he didn't look like he had growth problems and he looked so "normal."

I started thinking of her as Nurse Helpful. Nurse Helpful was quite convinced that there is nothing wrong with Nolan (he is of normal size and weight now, and has no growth issues due to the tube feeding).

In any case, the Amazing Health and Vitality of Nolan will come into play later in this saga.

We were taken downstairs to the 2nd floor, and our ENT and the anesthesiologist came in to see Nolan. Everyone listened to his lungs and heart and we discussed how he would be a direct admit to the PICU. He would be on a ventilator and intubated until Thursday. His records were taken to the OR and the nurse took him from our arms and walked him down the hall. He screamed and reached out for us the entire way. "MOMMY, MOMMY!!!!"

Having gone through this something like 12 times in the past, it never gets easier. Never.

The surgery should take about an hour, so Dennis and I went to get some coffee and something to eat. We feel a bit like seasoned pros at this, and know that the next meal may be a long time coming. We ate, and about 20 minutes later, we went back to the OR waiting room.

This is when we ran into Nolan's ENT.

"Oh, there you are," she said.

"Wow. That was really fast!" we said.

"It was fast because I can't do the surgery."

Houston, we have a problem.

She took us into a conference room and we learned that Nolan has a massive infection throughout his entire airway. I'm not talking about a minor upper respiratory infection. I'm talking about huge amounts of pus from his sinuses all the way down into his lungs. She showed us pictures and a video of his airway.

Remember Nurse Helpful? At this point I wanted to take those pictures and video and show them to her. How healthy does this look, lady?

He had no symptoms of a raging infection. None. He still doesn't have any symptoms of a severe infection. He has no fever, is playing, and is eating "normally" (normally for Nolan, anyway - certainly not normal for a typical child of his age).

Since they couldn't do the surgery, Nolan would be released and we will try again on April 9. I went to the recovery area to see my little boy, who had to go through the trauma of separation, general anesthesia, and IV placement... for nothing.

I am deeply grateful to his ENT doctor for taking the care to scope his airway before doing the surgery, because cutting into his airway and then intubating him with this sort of infection would cause significant danger to him. She is very cautious with airway surgeries in any case, and with Nolan's level of infection there is no way we could do any sort of surgery.

She cultured the infectious "debris" in his airway and we should have the results in a few days. Surgery has been rescheduled for April 9.

In the meantime, he has been placed on Augmentin for 21 days. His "post-op" appointment on March 18 will become his "pre-op" appointment. He'll be placed on another round of antibiotics at that time. Basically, Nolan will be on non-stop antibiotic therapy until his surgery date.

She also ordered a compound of Flonase with Bactroban - this is a nasal solution and we are supposed to rinse his sinuses with it to kill whatever bacteria is lurking there.

We left the hospital and went home. We played "run around the town to find a pharmacy with Augmentin," which is its own blog post. We picked up Matt and the dog from the dog kennel. The dog kennel owner was fantastic and didn't charge us for Casey's overnight stay (if anyone wants a recommendation for a good dog kennel in the Southern Tier/Jamestown area - give me a shout. Sadie Creek is excellent and the owner was amazing throughout our crazy surgery day). I booked Casey into the kennel for April 8, when we get to try this again.

Nolan is home from school today, and I am having extra cups of coffee. He still doesn't appear sick, despite the raging infection we know is in his airway. I'm interested to see what the culture shows.


TheSweetOne said...

Man that's tough. Sorry things had to be postponed.

Question: Will the hospital not let you take Nolan into the OR yourself? With both of Lauren's surgeries I carried her in. I settled her on the bed and I talked to her, maintaining eye contact the whole time they were putting her under. Only when she was completely sedated did I leave the OR. At her first surgery they wanted to take her from me in the waiting room and I insisted on taking her in myself. It meant suiting up but was completely worth it both times - even if I did end up in tears when I left. (still do just thinking about it). It also maked it easy for the anesthesiologist because Lauren didn't fight anything. ??

Julia said...

Big effin Oy Ve. The part that hurts most is that he endured the separation and the anesthesia for nothing. I wonder if there's any way to help alleviate the separation anxiety in the future -- maybe role playing with stuffed animals, or giving him a little mantra to recite while he's going down the hall ("It's time to hero up!"). Well, I'm glad he's feeling okay, and I'll be very interested to know the results of the culture.

dlefler said...

Buffalo Children's is very old-school. By old-school, I mean "1950's." They are the worst hospital we have ever been to for separation before surgery. They won't allow parents into the radiology suite when the child is having an upper GI or even painful urology tests (even if suited up). It is horrible. I hate the hospital, but we don't have a choice of location for this surgery.

Rochester is a much nicer facility - even though you don't go in with your child, the staff and the set-up was not nearly so awful for Nolan. And you are allowed in for radiology tests, at least.

I feel like they should give children Versed or do SOMETHING differently to prevent the trauma of separation. There is no child life at Buffalo Children's, either. They are the worst children's hospital we've ever been to.

dlefler said...

Julia, we've tried several tactics and none are successful. Nolan has been through so much that he is very aware of what happens and knows the protocol of the OR exactly - he is anxious and hates the gas mask. He is a very brave little boy, but this is a lot for any child. He's traumatized and anxious. I am going to ask our ENT about versed prior to separation, but not sure if that is an option with the bronch happening before the procedure (not sure how that drug would affect the sleep laryngoscopy).

Herding Grasshoppers said...

Oh Leah, that's heart-breaking. How awful that feeling so infected is "normal" enough to him that he wasn't really behaving like he was sick.

Praying for you all, and for the next round...


dlefler said...

It is so strange, Julie. He doesn't act sick at all, yet the pus throughout his airway indicates otherwise. Waiting on the culture results.. I'm anxious to see what it grows. I wonder if his C-Pap is infected and blowing nasty things into his airway.

PinkLAM said...

Sorry to hear the surgery had to be postponed :( Thank goodness for the ENT's extra caution though. As awful as it is to have to go through all of that only to not be able to perform the surgery, at least Nolan doesn't have to deal with a recovering wound he would have had if she had not discovered the infection prior. So strange that there are no visible signs and nothing was detected when they listened to his lungs. Hoping everything goes much smoother the second time around! Wish there was something that could calm his separation anxiety-- sounds like such an awful ordeal to go through repeatedly.

dlefler said...

It was a very long day - but I am extremely grateful for his caring and cautious surgeon. He still has no real symptoms. A very slight cough once in a while, but no fever or any real sign of infection. Hopefully the antibiotics will keep it under control!

kristenkj said...

Wow. That is a crazy story. I'm sorry you had to go through all of that. Will pray for your little guy!!!