I don't have the energy to think of a 'title' for the blog so I'll say it like it is. I literally lost four hours of my day yesterday in a blur of adrenaline and panic...
Braeden had his tracing test scheduled for 10:30 yesterday morning for his intestines. The poor boy had to be off food for six hours prior so he was a bit grumpy when I got there at 9:30 am. We had him prepped and changed over to the oxygen tank when Radiology called to say they couldn't take him...frustration. It was the toss up to feed the kid or not or just to start an IV of fluids and wait? Thankfully we didn't have to wait too long as they called back 15 mins later (or someone made something happen?) to say they could take him. We trouped downstairs with his Nurse and his (the ward's) Nurse Practioner. The test is a relatively short one and since he already had an NJ tube in it was supposed to be a fairly straight forward one. The plan once we got there was to pull his NJ tube back to his stomach (it sits in the intestine) and run the contrast through. The Resident said right away that she could tell that the intestine looked 'fine' to her (mistake number one). It was five of us in the room, the Rad Resident, a Rad Nurse and the three of us from upstairs. The contrast part was okay, he wasn't too unsettled through it due to his being strapped to a board with his arms above his head. I was a bit keyed up simply because he was keyed up but kept pacing and breathing. The Rad decided to have a new NJ inserted to complete the test and we all then realized she didn't know much about NJ tubes as she thought she could just advance it again.
(NJ 101: it has a small wire in it that helps you guide it through the valves of the stomach at the top and bottom then said wire is removed once the tube is in place therefore making it near impossible to advance again as the tube is far too flexible).
She enquired about tubing size and the NP said she could go to ICU to get the correct one but they were confident that they had it there (mistake number two). She asked the Rad Nurse to do it who in turn asked B's nurse to do it who in turn turned to the NP and asked her to do it....who (the super smart woman she is) informed everyone that an NJ has to be inserted by an ICU nurse OR the Rad himself. The Res left the room and I tried to comfort Mr.B as he's had enough at this point of being strapped down. She finally came back in (after I made more than one comment about leaving a baby strapped to a board...) and proceeded to start the procedure.
Now this is where I realize as an afterthought that I have a deficiency, when I am stressed I think part of my brain shuts down because this is where I should have thought about the fact that she was uncertain about it and I should have asked for the Rad himself to do the procedure. It is so frustrating that hindsight is 20/20. I suppose in my defence you'd think that the Rad would have confidence in his Res right? She advanced the tube and it kept bouncing in the stomach not going through and I was standing at B's feet because there is only so much room around the machine taking the photos. Rachel (the NP) called for an immediate stop to the test and whipped the machine off him and asked for the bagger, (which ironically I handed to her as I was the closest). She was in a flurry but did stop to say to me he was fine, just that he needed to breathe. Oh, and he was a nice shade of blue. The Res left during this and I tried to comfort him while noting that he was still quite pale. He had calmed down a bit (looking back now it wasn't a good sign he was so calm) and the Rad came in followed by his Res. The Radiologist all but called his Resident 'stupid' because she was NOT using the right tubing (it was weighted and she needed non-weighted?) and that she wasn't doing it right. He took over and immediately B started freaking out again, all I could hear were horrible choking sounds and gagging. He was quick with the insertion (I'll give him that but nothing else) and then announced that his intestines were NOT positioned properly and walked out. I don't even know if he knew I was even there, and if he did then he is more of an ass than I originally thought. AGAIN I hate that my brain shuts down because it didn't even cross my mind even though I was SO mad to say anything because I was in fight or flight and my flight to get B to safety had kicked in.
His Ped (Dr.V) came down to meet us as we were getting B back into the crib and settled and she got the prelim results, yes B has a Intestinal Malrotation, which means surgery is certainly in our future. I'm not sure when, through all of the craziness I didn't talk to a GI yet.
Take a deep breath, here we go:
We started out the door and the Ped looked at his monitor and saw it read heart rate as 43 so she stopped us to check him out. She got a weak pulse (femoral) and said it was certainly faster than 43 and that he might be in SVT. We rushed him upstairs to the 'proper' monitors and Dr.V kept feeling the pulse in the femoral and counting. She estimated 180 and I knew that was low if he was in SVT so there was no doubt in my mind that he was. They finally got a read on the monitor and it was over 300 beats a minute (303 is sticking in my head). Dr.V called for ice and an IV start (as he need the IV to get Adenesine). It wasn't so much that he was in SVT when my world stopped, it was that he stopped having the energy to breathe. I was holding my own until Dr.V called the Code Blue in. I started to cry and turned my back (self protection I guess) the Nurse that was with me was great, she was very concerned for me) but I was able to pull myself together and turned back around. The world is in slow motion when you watch your child struggle for life, it really happens like it does on TV, everything just moves slowly and for a moment there is no sound. I lost sight of B and looked around counting heads, there were 30 people in the room with us, 31 with myself. That is not including at least 10 people outside his room. I do remember at one point someone yelling for people that weren't needed to get out (although no one moved). I saw a lot of familiar faces (mostly from the ICU) which was comforting and one of the Nurses working so hard on him was Deb his nurse from the day before that I liked a lot. Braeden was limp and I watched as they desperately tried to get a line into him. He had nurses on either side trying to get a line into him and they would get a line and it would blow (when you are in extreme distress your blood goes to your core to protect your organs). They finally got a line, shot him with Adenesine and realilzed the line was gone, start over. Finally they got two lines and started pushing saline into one and Adenesine (twice) into the other with the crash cart standing by to shock him if it didn't work the second time. They did get his heart rate under 200 so that was stable enough to finish pushing the saline and he was fighting! I saw him moving and fighting them tooth and nail, what a beautiful sight! I do recall them giving Medazalam as well but I would like to read a report on it to see what I 'saw' is actually accurate or how much of it I missed. I have to thank the staff Nurse's and Dr's alike that came to insure I was holding up okay, I was well taken care of and for that I am so thankful. Whoever it was that thought to get me a cup of apple juice as things were calming down was amazing. I didn't think I would drink it but I did and the push of sugar was well needed. We were able to transport him downstairs with his oxygen cranked up and get him to the ICU.
He lost his lines in the transport and it took the poor nurses and Dr. another 45 mins to get another line into him. He fought through it so that (from a Mom point of view) was good. They kept telling him, to let them get a line in and he could come to me. We got greeted by some of our past ICU nurses and he got visited by some of the NICU staff. I thought as they called the Code that the poor NICU nurses would be wondering which one of 'their' babies it was. Poor Trish his primary NICU nurse was on shift yesterday so she and Kerry (NICU Manager) came down to just lay a hand on him and make sure for themselves he was okay (and me too, thanks so much ladies). I finally got to pick him up after the longest and yet shortest four hours of my life. He took one look at me, whimpered and fell asleep. While I held him I had to work hard to figure out how the heck to get Torin picked up from school. Dr. Fruitman arrived after all the excitement full of apologies that she wasn't there (the shame for her to have other priorities and patients!). She was talking about using the crash cart to convert him and then said she shouldn't even mention the possibilities in his presence! She had just examined him the day before and was so happy with what she saw! I love that she calls him a 'Bum'. To show you how amazing nurses are, the Dr. actually asked me for the school's phone number in the midst of everything to let them know I wouldn't be there to pick up Rylan from Kindergarten. I have so many people to thank for yesterday, the medical staff at Children's is just so amazing. Dr.V was certainly nervous but once she found her stride she took ahold and rode it out with professionalism and grace. Thank you as well for those of you that helped me take care of T and Ry and helped me even sort it out. Thank you so much to Rachel for stepping up and knowing enough to take Ry home with her, feed him and even take him swimming. Thank you to Karen for taking the time out of her life to pick T up from school (and finding the school). Thank you Kelsey for coming early (and for her afternoon family for understanding and letting her leave early), watching the boys and clean up the kitchen, not to mention taking them on an adventure today for the day. Thank you Kelly for babysitting last night (as Mike is out of town with work this weekend), so I could return to B and thank you Jenn and Jodi for offering to help even though it would have been an inconvenience to them and helping me problem solve through it.
It is a huge step backwards for B and for Torin as it was just too much for his little brain to sort though with having Karen pick him up and take him home but he trooped thought it, my 7 yr old Super Star. Ry was fine with his change of plans and had a great day (which I am so thankful for)!
As for me, I'm just trying to process it all. The addition of the intestinal issue is just so much more to take, I don't know what else is next but it terrifies me that they just keep finding things. When I went back upstairs to clear out his room the nurses and Dr.V came in to see how I was and they all kept saying how amazing I was. I'm not sure if amazing is the right word for an 'out of body' experience but I made it through it and for that I am thankful.
Mr.B had a good night, he slept well and hard. He is stable and is going to be even more closely watched and they've started his Solotol (heart meds) again. We will most likely be in the ICU for the weekend (since it's the weekend) and then hopefully attempt Unit 2 again while we wait for surgery.
I think the positives of the day are pretty apparent:
Thank you Mr.B for being such an amazing soul and such a little fighter (we'll have a chat later about this stress you are causing your Mommy and Daddy though)
Thank you to everyone who contributed to saving my child's life (yet again)
Thank you to my wonderful family, friends and support team