I figure since it has been a while since I have been here, I should start with the event that halted the blogging. The Surgery. Yes, it was a big enough of an event to gain the rights to all capital letters. I thought I would share our experience, but I don’t want to frighten anyone from getting a g-tube, because despite all of the issues we had, NONE of them were from the ACTUAL G-tube or the 15 minutes of the procedure from that. It was everything else!
We checked into admitting at 6 am, sleepy but ready to go. Once they finally got us upstairs and in pre-op, we waited and waited and waited a bit more. Thankfully they have wi-fi.
Luckily, one of us got to sleep through pre-op.
Once the nurse came to do vitals, she took his temp, which we told her would be low. And she did his SPo2 stats as well as his heart rate. It was 50. She noted it and was a bit concerned but we told her it was normal so she finished up. The surgery was scheduled for 8 am, so the surgeon and the anesthesiologist came by around 7:45 am to do the paperwork and consent forms and go over everything with us. They saw the heartrate was 50 and became VERY concerned. Apparently, anesthesia drops your heartrate (I knew it depressed your respiratory system which would be the reason for the intubation) which would mean for Superman, if his rate began to decline there would be nowhere for it to go but for his heart to stop. So the surgeon requested a cardio workup before he could be cleared for surgery.
Luckily, we got an awesome Cardiologist who came down and actually watched the EKG and ultrasound with us so she could immediately clear him since we were holding up the operating room. 8:45 am we finally got the go ahead. Superman’s heart is perfectly formed and functions properly… just slowly. It’s a neuro thing. Isn’t it always?
They took him back, and Mom and Dad headed to get coffee, in a rush because the procedure only was supposed to last about 15 minutes after they got him to sleep. We grabbed our coffees and headed to the waiting room. 30 minutes passed. 45 minutes passed. An hour passed. I started to freak out in paranoid mom fashion. Last thing we heard before they took him in was the risk of his heart stopping from the anesthesia, remember? Despite the clearing from cardio, I am FREAKING OUT. Finally about an hour and 10 minutes after it started, the anesthesiologist came and took us back to the recovery room. It took FOREVER for them to get the IV in him. Superman is beyond being a hard stick. We wouldn’t realize how hard until we were getting ready to leave.
So we walk up to his little corner of recovery and he is awake and fighting. He started this whole thing congested from the NG tube, then the pulling of the NG and the placement of the intubation tubes and then pulling them managed to work up some NASTY congestion. He was fighting to breathe, he was fighting the mask, he was just fighting mad! Which was kinda nice to see him reacting to something as awful as it was. The awareness factor had both of us happy. The fact that it was at pain was sad, but we were proud that he had awareness of the situation. In our world, that is crazy progress! Heartrate …. 150. Problem solved.
He finally calmed down enough to let us get the mask off and just use ‘blow by’ from the hose.
Once we finally got upstairs, we found out we were in a double room. I know, I know, I sound like a hospital snob, but we don’t share rooms with other people. Go ahead, laugh. Let me tell you why. Superman has temperature control issues. He can go hypothermic in seconds. Walking into a clinical setting like a hospital or even a doctors office somehow magnifies that. I have always assumed its the air, and they keep it colder to keep germs at bay. Germs tend to multiply in warm air but not as much in colder air. Which makes me wonder why winter is always cold and flu season. I digress. So by sharing a room we would either burn the other people up because the first thing we do is set the temp at 80. Yes, we are super popular with the staff for that reason. They come into thaw out from the cold hospital then leave sweating. Or we would need multiple pieces of loud equipment to keep him warm. The nurses opted to give us our own room as to not put out the other family. We were thankful, and they would have been if we had stayed. They would have been kicking us out I am sure.
First order of business once we got settled in the Pediatric Surgical Unit was lab work. Anyone with Diabetes Insipidus, this is ALWAYS the first order of business to check sodium levels. He had gotten his emergency stress dose of cortisol prior to surgery so that wasn’t as big of a concern. With Addison’s disease, your body doesn’t make enough Cortisol which is the stress hormone. It increases when you are stressed to help your body deal with it. He has to take a synthetic version. He was ALL loaded up. First labs went well. First stick and done. Got the results back. A little high, 154. Redraw in 6 hours. Not uncommon for us at all and actually what I was expecting after talking to some others with DI.
Well so far so good. A little bit of a rocky start, but trucking along. He was doing fine with his tube, not in pain and awake and alert for the company that came by to check on him and for when his sister got there. But once everyone left, all hell broke loose. First it was the labs. The same tech came back to draw again for the 6 hour test. She was a bit angry that she had to redraw him and she let me know it. Of course she complained to me so I was angry enough at that point not to explain. Never complain about your job to a parent who just came out of surgery. Its not cool. Not cool at all. So she attempted to draw the same vein as before. Couldn’t get it to bleed so she informed me she was going to do a finger prick. I said no, told her to find someone else. She proclaimed herself the expert on hard sticks and said she WAS doing the finger stick. Fortunately, the nurses came in for shift change and also told her she was NOT sticking his finger and told her to leave. We finally got someone that could stick him. Results: 159. Fantastic. Sodium rising. Not good for us.
Well the sodium became the least of our worries because as the congestion worsened so did his breathing. He began to have regular apneas (episodes where he would stop breathing) and quite a few he became cyanotic (turning blue/grey around the mouth and spreading). We were draining and sucking out the secretions as quickly as we could and it wasn’t enough. Finally, around 2 am we (me and the nurses) said enough was enough and called Pulmonologist to prescribe some type of decongestant to help get all of this out. He had multiple breathing treatments and oxygen up to this point just to keep him breathing. This was probably one of the scariest nights of my life since he had gotten out of NICU.
Secretions are nasty! I am showing this so you can see just how serious this got. The containers are both full of straight congestion. This is a byproduct of him being intubated. I don’t know if this is the norm but it definitely was the case for us. By this point I was ready to start calling him ‘Slimer’ from Ghostbusters.
Just to ease your mind if you found this post looking for information about g-tube surgeries. The g-tube is still awesome and we had ZERO complications from the tube itself. That was the saving grace of this visit.
By the morning after the meds finally kicked in, he was a new boy! The pulmonologist came in and couldn’t believe he was in the same room as the child in the chart from the night before. He signed off on him and everything was peachy on pulm’s part. They did leave orders for breathing treatments PRN (as needed).
Everything looking good! Comfy, comfy.
Surgery came in and checked his site, it looked fantastic and they were also ready to sign off on him since the surgery was only supposed to be a 1 hour surgery and a 23 hour observation hold. (I think Superman must have laughed when he heard that because it just couldn’t be that easy could it?) Unfortunately for us, the mornings labs had come back: Sodium 160. So still high. Not good. Typical sodium levels are 135-145, but in his case since it is controlled by medication and he tends to run on the high side, we are comfortable with a little bit higher of parameters. 160? The absolute TOP of the parameters. 160 = Mom freak out mode. So we stayed.
Get comfortable, looks like you are going to be here a while longer.
So remember the part earlier about getting into it with the lab techs? Well, it continued into Day 2 as well. I took Diva home because you can only contain a 5 year old so long and I needed a shower and a nap. Dad took over and everything was going well, until Dad stepped out for a cup of coffee. If you haven’t noticed by now, this family is fueled by coffee. Completely. You would be hard pressed to find blood in my coffee supply. If I ever needed a transfusion, I would request that it be fresh, ground espresso beans brewed slowly. Well, so Dad stepped out for literally 10 minutes to grab coffee before the cafeteria closed and go figure, the lab tech must have been waiting because she KNEW she wasn’t allowed back in him room. He came back and there was a band-aid on Superman’s finger. He called the nurse and both of them were livid! Guess what? Sign on the door. Labs were from then on only drawn in the presence of a parent or nurse. Well the results came back skewed, of course, which is why we had been so adamant. Once Endocrinologist found out, he ordered them redone AND not to draw by finger stick again. I love our Endocrinologist. Sodium: 161.
Well the night was pretty calm, which was great because Dad was going to need to be rested up to deal with the next morning. Day 3 started feeds. Do you know how you feel when you have a sinus infection and all of that gunk drains into your stomach and you just feel nauseated and not hungry? I don’t think Superman was hungry because once they did the feed, he projectile vomited all of it back up on Dad. Well that pretty much summed up Day 3. Lots of projectile vomiting but he seemed to feel a lot better after that.
Sodium: 151 – headed in the right direction for home. We spent the night bored watching HGTV. Superman was not amused by their home choices. Waiting for the “h” word is always torturous when you get to the end.
At some point he decided if he was going to be stuck there, he was going to do his best to get comfortable. He began pushing himself over to the side and sleeping like that. Who am I to stop him? He’s so cute!
Day 4 was long, but Sodium dropped into normal range: 144 and Endocrinologist restarted feeds and if he tolerated them and sodium stayed ok we could go. We packed up, prayed hard he didn’t throw up and got all the DME stuff done with the help of a great caseworker. Food stayed down and he was happy to have a full belly. Last labs came back, I held my breath when they told me: 134. We overshot normal. However, remember paranoid mom? Yeah, she’s the one that would drive everyday to get blood work done to make sure he’s staying in normal range if that was needed. So he let us go home with labs on Monday.
Oh and once they pulled the IV for discharge (we were lucky as the first and only one kept flushing the whole time!) we saw what took so long for the surgery. There were 8-10 attempts to get the IV in. When I said he was a hard stick, I really wasn’t kidding. But at least I know now that something traumatic didn’t really happen that maybe they didn’t tell me about.
Phew! I am soooo glad that’s over!
Moral of the story:
Superman does NOT tolerate getting intubated well.
No decision for surgery will EVER be taken lightly in this house (not that it was before, but now we know how severe it can get!)