Surgery update – unfortunately this is long… :(

Posted on November 8, 2011 by Sarah 11 Comments

Well today has been an interesting one, that’s for sure.  Many lessons were learned today, the biggest one being that there are no minor procedures.  There is nothing routine and especially nothing that can be expected.

We were supposed to arrive at the hospital at 6 but got here at 6:45, heh… enough time for them to call and be like – uh are you coming?  We never had very good directions nor didn’t ask for any clarification prior to this morning so we ended up going to the wrong building.   After checking in, we waited a short time before going back to the pre-op room and meeting with various individuals who would be taking care of Evan throughout surgery.  Dr. Downing talked to us again about the procedure.  We asked him where the button was going to be placed and he felt around the pacemaker and was a little irritated with the lack of space.  I’m sure when putting the pacemakers in they have a reason for putting it on the left side but it leaves little room for other interventions when needed.  Because of the close proximity to his pacemaker and its pocket, they called to have a rep from Medtronic reinterrogate his device, even though we just sent a transmission on Halloween, just to make sure that nothing changed.  There was a small chance that if a cauterizing tool was used it could impact the pacemaker settings.  We were also told that if necessary they would call down for an echo to check to see where the leads were in relation to where the g-tube was going to be placed and how the orientation of his stomach was going to change.  We met with anesthesia as well and they talked to us about their procedures and their role in his operation.  We gave our kisses to our sweet happy baby and were told to wait about an hour for everything to be done.

After an hour, a nurse(?) came by and updated us of his status.  She was only passed along the information and we couldn’t really ask her for any details.  She told us that they had a difficult time getting an IV started but that they eventually got one in his leg and that they did call down for an echo.  So, after an hour they were just getting started with the actual stomach surgery.

Eventually Dr. Downing came by the waiting room and talked to us about the procedure.  He told us that there was an issue with the intubation.  When putting in a breathing tube, they like to obviously go below the vocal cords and into the trachea but want to stop short of putting the tube into either branch of the lungs.  In babies, the area is maybe 2-3 centimeters in length.  Even if placed properly, if a baby were to move they can push the tube into one of the branches, and usually it is the right one.  If air is being pushed into only the right lung then obviously the left lung isn’t getting any air.  And with heart babies especially those who are shunt dependent for blood oxygenation, the slightest obstruction of airflow can quickly cause things to spiral out of control. Evan’s heartrate dropped to 55 bpm, but that this was just the intrinsic value of the pacemaker.  In actuality his heart stopped beating.  The pacemaker was sending the signal but the heart wasn’t responding.  So Dr. Downing did chest compressions for 1-2 minutes and then listened and heart his heart beating.  He suspects the beating resumed while he was in the process of the compressions, meaning that it could have been after 15 seconds of compressions or 1 minute.  It is suspected that it wasn’t very long because they pulled a blood gas and the levels were just as perfect as they were prior everything getting started.  If the heart had stopped for longer then his blood acid levels would have been higher and he would have been in acidocis (he had acidocis when he had his stroke so we are familiar with that). They called Dr. Dommer and had her come down to the OR to do an echo and check his heart function.  It looked great and they decided to proceed with installing the g-tube.  Because of where the pacemaker is located Dr. Downing had to place it a bit off where he would normally but he had anticipated this.

Dr. Downing only gave us a little bit of the above information and we digested the big details but were pretty much in shock at the activities of a “routine simple procedure.”  They brought Evan up to the Pediatric ICU (PICU) and extubated him (removed the breathing tube).  He started coming out of sedation and began to exhibit some stiff posturing and irritated crying, except the crying of an extubated baby sounds like come crazy cat torture because of the brief irritation to the vocal cords.    We were sitting in the PICU waiting room when Dr. Dommer walked on by, coming to check on Evan.  We called her in and she helped explain more details given above.  She could sense that we were pretty inquisitive so after leaving us and checking on Evan she brought Dr. Downing out to talk to us more and go over things again. He said that Evan might not have any lasting effect from the morning’s activities but that he himself was surely impacted.  Probably going home with a couple more gray hairs than yesterday.

We finally got to go back to see Evan and he didn’t look good.  He looked pale and ashy and bluish.  The bottoms of his feet were pretty purpley.  He had his awful cat torture cry and I forgot just how terrible it sounds.  Because he was upset and crying he wasn’t breathing deeply so that helped add to his pale and purple look.  The more the sedation wore off the more pissed he became.  They had given him some fentanyl in the OR and it works great but wears off quickly.  Evan kept exhibiting stiff arm and legs posture.  He would arch his back, arms stiff but flailing, skreechy screaming cries.  It was awful and very upsetting for Bill and I.  He had a temp of 101 in the OR so we couldn’t really swaddle him or anything for comfort.  We looked at his little hands and between the two there were 7 pokes from attempts to get an IV started, with 3 more in his legs where they eventually found a vein.  At first we weren’t sure what the source was given that he had just come out of surgery and was just waking up.  Was he hungry?  Was he in pain?  Was he just pissy and irritated?  They were reluctant to give him some pain meds right away, which now looking back in my opinion this decision was insufficient for the situation.  They asked us what was normal behavior and we said this was highly abnormal.  They thought perhaps he was hungry and tried to give him some food.  When putting in the g-tube, they fill the belly with air.  I don’t know if they took this air out but when attempting to feed him an ounce of food there was a large air release from his tummy.  Maybe this was the source and now he was just pissy in general?  The feeding didn’t have any impact on mood.  Eventually they decided to give him some Ativan to remove some of his anxiety and calm him down. It did work, but he still had some stiffness and his little hands were clenched into tight fists.  When we said again that this was still abnormal and that we think it is from pain, they gave him a morphine bolus.  The issue with narcotics is that individually they might not do too much but they can easily stack.  Another issue is that they can quickly impact blood pressure, breathing rates, and oxygen levels so the oxygen in his cannula had to be adjusted by the nurse to maintain his levels.  His O2 stats were in the 60s after the procedure whereas normally they are in the mid-80s. So far I am not very happy with their sense of urgency in regards to pain management. Maybe they are just being cautious but I vividly recall a time when Evan was clearly in pain at U of M and the nurse literally ran down the hall for the meds and within less than 2 minutes Evan was being given a dose of morphine whereas today we listened to him scream for at least 15 minutes before they decided to give him something for pain.

Eventually Evan calmed down and went to sleep.  He must have been exhausted from being so upset for so long and the meds were making him groggy as well.  He needed the rest.  Due to all of the stiff posturing after the surgery and due to his previous history of seizures due to strokes, a 20-minute EEG was performed just to make sure.  The results ended up being fairly normal, nothing too unexpected or a cause of concern.  All of the examination made Evy wake up and he was instantly fussy.  After crying for a few minutes, he got another dose of morphine and calmed down.

We’ll also be adding something completely new to our “medical résumé.” Daily injections. 😥 Dr. Dommer has requested that he go home on the anticoagulant Lovenox which is only available as an injectable. We don’t yet know how long he’ll be on the drug but Dr. Dommer wants to make sure that Evan does not have another stroke issue like we had in Ann Arbor. Lovenox is a low molecular weight Heparin but unlike Heparin it is not necessary to check certain factors in the blood following dosing so it’s easier for patients to go home on or so we’re told. 😉 Sorry Pfizer.

Lessons from the day:

• General hospital stuff for Bronson is at the South Campus.
• G-tube surgery requires intubation, even for adults but especially for children and babies.  I guess I didn’t really put 2 and 2 together or think that it would be a big deal.  It is.  Go to a Children’s Hospital if you need this procedure because they work with little bodies every day.  Heart babies are fragile and can spiral out of control in an instant.
• I only want to go to UofM for all procedures from now on, especially if they involve intubation, no matter how minor.  I don’t ever want to come back to Bronson for anything like this ever again. It’s not that we feel Bronson did anything wrong, not at all, it’s just that if “S” hits the fan U of M is better suited to deal with Evan because of his heart condition and their vast experience with these babies.
• If you have a child with a complicated and lengthy medical history, write out your own synopsis.  No matter how many sources have your info, you will be asked again and again.  Know your dates.
• Bring your med list.  Even though the cardiologist provided our med info, we were still asked by 3-4 nurses and doctors for the information.  Even with this, his PICU nurse had his med list and it was wrong.  If you can bring the bottles so they can check for themselves that is even better.
• Breast feeding moms get free meals and unless you’ve tested negative for HIV in the last 90 days you are not allowed to store your milk here.