That's right we had a quick trip to Seattle on Friday. When we went to our scheduled appointment with his tube Dr on Wednesday we found out (as I assumed in the first place) that his tube could NOT be removed in the office. The Dr. wanted to removed it via endoscopy. When she told me that I looked at her and said,"Uhhhh I'm not sure Dr.H is going to allow him to be put under unless we're at Children's." She kinda looked at me like I was stupid. I asked her if they would have a Cardiac Anesthesiologist in the room with the other Anesthesiologist. She said,"Well all of the Anesthesiologist are trained in cardiac patients. Still not at ease I was thinking, well Colter's not really every cardiac patient. So she went and made some phone calls and came back to let me know Dr.H approved the procedure... Hmmm I thought, something just wasn't setting right. Aside from being beyond frustrated with the fact that I've have to deal with this piece of crap tube for almost a week, I'm being told he can be put under for the procedure. Well we left and I decided to swing by Dr. H's office to talk to him or Kelly (his nurse) unfortunately Dr.H was with a patient, but Kelly was available and she is just GREAT. I explained to her my concerns and Tyler's concerns with having the procedure done here, and just how bummed I was that now Colter was back on Jujunal feeds, it felt like we were taking steps backwards with this stupid tube. Kelly told me she'd have Dr. H call me ASAP.
When Dr.H called we were in route to our house, he told me that despite how easy the procedure should be, the more he thought about it the more he thought it wouldn't be a good idea. He thought it would probably be best to just get him to Seattle. I couldn't agree more!! So the plan had changed yet again, and now we planned to head out of town Thursday late morning and take our time getting there, his appointment was set for Friday am.
Sounds easy peesy right? Well nothing is easy for Colter. Thursday morning I wake up, give him his 5am meds, then his 9 am meds. I plug him back into his feeds and about 5 minutes later I hear BEEEP BEEEP!!!!! So I go back into our room and his feeding pump says no flow...Hmmm I look at the tubing, no kinks anywhere...I instantly knew the problem, that dang J port is clogged! So I went and got some warm water and tried to push it through and sure enough it was clogged.. Here we are 10am and I have no way to feed him or get his meds through...Awesome right? So I make some calls and Dr. H thinks it would be best that we get Colter into the peds unit and get him going on an IV and we would have to be flown out. So after some serious hustle and bustle Millie, Colter, Ash and I were off to the hospital and Ty was on the road to Seattle.
When we got to the peds unit I had a choose between a number of things, did I want to try and unclog the tube, temporarily fix the g port, do an iv, or have a NG placed. After considering all of my options I decided an NG would be the best choice. Because I knew they'd have to do it in Seattle anyways. Well if that wasn't TRAUMATIC for Colter and I both. As the nurse tried to place it Colter was of coarse fighting it, coughing, and gagging. It gagged him to the point that he turned blue and went limp..I looked at the nurse and said, "This isn't normal right?!, take it out, take it out!" When she took it out he was able to puke and let out a cry..PHEWWWWW.......Next she tried a tube that was smaller it went in, but they couldn't hear the air when they checked the placement. So they had to call in a x-ray, what had happened was she put it in too far. So in went into his tummy hit his g-j and looped back out. So they had to pulled it a little over half way out and back down. Finally they got it placed...
Colter with his NG tube finally in place!
It wasn't to long after that the flight crew arrived and we were off to the airport. They loaded us up as we were off, in the smallest plane I've ever ridden in. When we arrived in Seattle, they had an ambulance waiting and we went to Children's. It was nice to see some old faces, and really nice that we weren't there for something serious. They quickly got him checked in and there we were at our home away from home. This time though he wasn't hooked up to any monitors, no vitals every 4 hours. The first thing I asked with we got there was, if Kelly (OUR FAVORITE SEATTLE PRE-SURG CHILDRENS NURSE) was working, and too my delight she was!!! She was so happy to see Colter, and couldn't believe how wonderful he looked and of coarse how much he's grown!! Everyone we ran into thought he looked great and thought he was HUGE!! For as big of a hospital that is, I forgot how many people we know! Our nurse that night said to Colter, your quite the popular little guy, the unit is buzzing about you!
The next morning we were off to IR to get this tube taken out. To my surprise the nurse who worked with us was the nurse that discharged Colter from the ICU. She just loves Colter and said she didn't even recognize him. So we gown up and head into the procedure room. Basically they put a little numbing gel on his GJ site, We laid him down and the guy cut open the tube, first he removed the J tube, which was no problem Colter couldn't even feel that. Then he cut the tube and looked at Colter and said,"your going to hate me bud, 1...2....3..! YANK!!!! Out it came, and Colter was screaming. He cried briefly 30 seconds or so, calmed down and they put in the button. Then he trained me how to put it in and take it out, and check it's placement. They turned on the x-ray and pushed some dye through, we saw it enter he stomach and that was it.
His new Mic-key button!
We stopped in Cle Elum to see Tyler's brother and his family, and right before we were leaving I decided I needed to change his stinky poopy diaper before we hit the road. As I was taking him out of his seat, somehow his tubing got caught in a part of his carseat, when I felt it tug I quickly went to put him back into his seat but it was too late. I pulled his Mic-Key button out....I immediately felt, Stupid, ashamed, TERRIBLE, panicked, did I say TERRIBLE!!!!! I looked at Ty and he knew something bad had happened. I quickly put him onto the front car seat. I deflated the balloon and placed the mic-key back into his tummy. I cleaned up the blood and re-inflated the balloon. I pulled back on his tube to check placement, saw stomach contents come back so I knew it was placed appropriately. We called and talked to the IR supervisor and he said," Calm down, it's ok, these things happen, that's what this tube is ment for. It's ment to come out, and it's going to happen again. You did everything you were suppose to do, and he will be fine. Quit being so hard on yourself." Well I still can't believe I did that but it happened and he's ok.
Colter did FANTASTIC on the car ride home, like AMAZING! To boot he slept in till 12:00pm today!! Tired boy, it's been a long couple of days. So far we've just been babying that tube and it should heal up quickly since his stoma is already formed and healed from the last tube. I'll keep you all posted, I'll update on Tuesday, he has a cardiology appointment.. Love you guys, and Colter is such a CHAMP!!!
Kelly, here's what I wrote for you on Caringbridge:
Kelly- I was so sad your last day, I was so hoping that you would be our discharge nurse. You were our first nurse, you could tell that you genuinely loved Colter. I was so happy when I ran into on the medical floor soon after we were transfered. I thought about you while we were in ICU and it was nice to hear that you thought about us as well. By the time we left I felt like I'd made a wonderful friend. Thank you so much for taking such wonderful care of Colter and ME! You have such a big heart, and you're everything a fantastic nurse should be. I wasn't lying when I said email me when you head our way!! Your great and Seattle Children's is so lucky to have you!! xHugsx
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