No Such Thing as an Easy Procedure

10 month old manny, sick with pneumonia

5/14/2010

A decade ago, Manny was admitted to the hospital. We’d only had him home 49 days. He had double pneumonia. Within minutes of being there, he was assigned doctors, nurses and techs that I still know and who still care for him to this day. That admission was rough as we were giving a terrifying diagnosis (which turned out to be a misdiagnosis) and prognosis of less than a month to live. 

10 month old Manny with pneumonia 

In the decade between, we have had amazing and horrifying medical experiences. We’ve almost lost him countless times. And yet, so far, we keep getting to take him home with us. Each time, I learn more. Each time, he and I both get a bit more PTSD triggers.

5/14/20

A decade later. To the day. Ironically, we were headed to the hospital. This time he was healthy. This is just for a tiny procedure. Should have been an hour tops and done. Most people don’t even need sedation for it.

What’s the procedure? And what is it for? And is it necessary?

The procedure: He has a hole (stoma) in his skin that does directly into his stomach. He currently has what is called a G-Tube. (G for Gastric). It’s used for feeding, hydration, medicines and venting things that shouldn’t be in the stomach. For Manny, we only use it for venting. They were replacing the G-Tube with a GJ- Tube. G stands for gastric and J stands for Jejunum (A specific part of the small intestines). For people who have severe gastroparesis (stomach won’t empty), putting food into the stomach will just sit there. So they put the food directly into the small bowel.

A G tube can be placed at home. I’ve done it many times. Pop the old one out. Pop the new one in. 5 minutes tops. But a GJ has to be placed in Interventional Radiology (IR) because the J portion has to be threaded through the stomach into the small bowel. They confirm the path and tip location with fluoroscopy. This part should only take 20-40 minutes depending on anatomy. It’s not painful, just feels weird and some pressure. 

G-Tube 

Manny is on Parenteral Nutrition (Sometimes called TPN). This goes through his veins. It can be hard on the liver and there can be other major complications (such as sepsis). He has been very fortunate with little to no complications associated. His liver numbers are perfect. So it’s been a life-saver for him! He’s on this because he has severe gastroparesis and feeds cannot go into his stomach. And he has severe angioedema (a type of allergic swelling) when food goes into his body, even into his bowel. It’s been life threatening numerous times. Even with antihistamines, steroids, etc. He’s “drowning” in his own secretions. 

J-tube 

But GIs want to periodically trial him on feeds again. So we have to try. I’ve put this off for almost 3 years. (They want to try yearly.) We were quite overdue and she was insisting we try again. Step one is to get this tube. 

Problems we thought we would incur (because in the past we did):

1     1. Manny freaks out emotionally. He tries but he can’t keep it together. They have to give him Versed. He doesn’t like it or the effects. This time, he did GREAT! He didn’t need it. He stayed calm and brave. He was nervous but not freaking out. The Child Life person was able to go back with him and show a video he’d picked out on his ipad. He counted down from 5 and was asleep by 3 she said.

2      2. The wrong tube. Several times we have been told what tube and size would be placed only to come out and find it’s not right. This time, everyone was on their game! The right type and size of tube.

3      3. Waking up. He is combative when he wakes. (Likely the versed.) He has even threatened to bomb the hospital and is angry with everyone. Once it wears off, he’s a sweetheart again. This time, he didn’t experience this.

4   4. The team forgetting he has a severe allergy to a cleaning agent. It’s on his bracelet. It’s documented in his record. But it’s such a common cleaner they often do it by rote. It causes major troubles for him for weeks after. This time, they remembered to use the right cleaner!

Waiting in day hospital 

What I was NOT prepared for: 

•         The anesthesiologist would ignore our conversation and verbal plan for sedation
•         He would lose airway
•         Codes would be called for him
•         It would take multiple experienced experts to keep him alive
•         Anesthesiologist would be deeply apologetic for deviating from the plan
•         She would be telling me a moment by moment account of the horrors
•         She would admit that a key phrase I’d told her likely saved his life
•         We almost lost him 

Brave boy headed back to the procedure

Some key things that went right:

        

•     The plan was for him to go from day hospital to IR back to day hospital. While he was under, I was allowed to stay in the IR waiting room or go back to his day hospital room. Thankfully, I chose to grab a bite and go back to his room. The seats are more comfy. I could take off my covid mask. I talked to a friend on the phone. It was quiet and peaceful in there. Had I stayed in the waiting room, I’d have seen and heard all the commotion. I’d have known for 2 hours that horrors were happening but not been able to do anything about it! While part of me wishes I could have been praying, I truly think blissfully unaware was better in this situation.
•         Instead of bringing him back to the day hospital, they took him to PACU which is where they take the kids after surgery for a higher level of observation. THAT’s the moment I knew something had gone really wrong. This is where the anesthesiologist met me before we went back to see him to tell me all the ways it went wrong.
•         In PACU, he got a specific nurse – Suzanne. I’ve known her for about 12 years – prior to knowing Manny. She has a son with the same type of cleft lip/palate as Zoe has. She knows me as a Mom. She knows Manny as a patient. She was able to start advocating for him even before I could get to him. She made dozens of excellent calls. She and I think VERY much alike when it comes to care for Manny! It would turn out we needed her several times.
•         Once I got back to see him, he was struggling to breathe. Oxygen wasn’t enough. They had to set him up on BiPAP with oxygen bleed in. This was the right call.
•         The Surgical team wanted us to stay the night. Suzanne advocated for us to go home if he would stabilize. Afterall, we have bipap, oxygen and suction at home.
•         He eventually stopped bleeding.
•         He started breathing better on bipap.
•         Then he started to have blood sugar issues (being off TPN for too long. Afterall, we thought we would be home in a few hours, not 12!) And Suzanne and I discussed options and got what he needed.
•         Daddy packed up the TPN, bipap, oxygen and brought it to us for the ride home. Therefore we got discharged. The team said, “If you weren’t ICU mom, I’d never even consider this!”

PACU

After effects:

·        Manny continued to have struggles breathing off and on until bedtime. Bipap was what he needed. Good night sleep and today, he’s holding his own with breath.

·        He was blissfully unaware of all the chaos! He simply told me last night, “My throat hurts”. I told him it was from the tube that went down his throat. What I didn’t tell him is that even STIIL (more than 24 hours later), his throat is still weeping blood. The anesthesiologist called it “friable”. We don’t know why.

·        He has the start of a junky cough. Likely aspiration during the ordeal.

·        He coughs and says, “Oh no! They gave me Corona!” LOL

Sadly, there will be a next time he needs a procedure done. Things I have learned from this one will include:

• 1.       This time, I’d talked to the anesthesiologist and we had a plan. Where SHE says it went off tracks is she thought she had options. She tried those options. From light sedation to several other things to finally using a glidescope to get intubated. She said that even though I had TOLD her to please us the glidescope, she didn’t. She says to ONLY consent to this and no other procedure options. To insist. To put my foot down and say it clearly so no one will ever go through this again. This was NOT an inexperienced doctor. And she needed help of MULTIPLE experienced doctors. And it could have been avoided. All by doing what I’d said at first. She readily admits that. She will also write it in his chart in big letters. But basically told me to not agree to anything unless I get written and verbal confirmation they won’t even attempt anything else. 
  
• 2.      All of this was for a procedure that I didn’t even want in the first place. Doctors think it’s no biggie. But this put his life in jeopardy for a trial of something that MIGHT help him a tiny bit. The risk/benefit ratio shifted significantly in my mind yesterday. I will think long and hard before I ever put him under for ANYTHING. I will be able to stand my ground (kindly, of course) with ammunition of “This is potentially life threatening to sedate him”.

Bottom line is:

We left our home at 8:30 am and arrived 12 hours later for an “easy” procedure.
We almost didn’t get to bring him home.
We did.
I’m grateful.