Surgery #5 - Dec 15 -2017
Joseph’s trip to the Operating Room (OR) this time was five months after his previous surgery, the 5th this year, a total surprise and a whirlwind of an experience. In summary, Joseph had earaches around halloween for which he had two courses of antibiotics. Since then his tonsils got rather large and the site of the cyst re-inflated with pus - both of which restricted his breathing. We could hear something was amiss for a couple weeks before the pediatrician saw him and helped us expedite the process to see Dr. Park (the ENT Specialist). Once Dr. Park looked him over, he was rather surprised and scheduled him for surgery the very next day. The surgery was a success and despite a few surprises and a couple of minor setbacks he was discharged directly from the PICU only 48 hours after we got there.
Timeline
October 31 - Six weeks prior he had a bad ear infection and was on antibiotics for 20 days
December - We could hear his breathing was labored, but his Oxygen Saturations were
always good and he didn’t exhibit signs of labored breathing - retractions or head bobs
December 15 9:00 am Tuesday we visited with Dr Lei the pediatrician
December 15 3:30 pm Appointment with Dr. Park - viewed restricted airway and size 4 tonsils
December 16 4:00 am Wednesday - Jason and Kristine finish christmas purchases and
plans just in case we had surgery
December 16 10:00 am Jason gets notified that Joseph is scheduled for surgery at 5:30 pm
December 16 1:00 pm Jason makes a mad dash to Walmart and Costco
December 16 3:00 pm Jason and Kristine leave with Joseph for Primary Children’s Hospital
Most of the kids find out we were leaving as they got home from school
December 16 4:00 pm Check in at the hospital - and wait
December 16 7:00 pm Joseph is taken back for surgery
December 16 9:00 pm Surgery is complete and Joseph gets his room in the PICU
December 16 10:00 pm Goes back to the OR to be re-intubated and back on the ventilator
December 16 11:00 pm Intubation tube comes out and has to be put back in
December 17 10:00 am Doctors tell us that he will be on the ventilator until the next day
December 17 11:00 am Dr. Park decides extubation should be that afternoon
December 17 1:00 pm Joseph goes back to the OR for extubation
December 17 3:00 pm Joseph get the CPAP mask put on
December 17 7:00 pm Joseph gets the CPAP mask taken off and does well with it
December 18 3:30 am Jason is locked out of the room
December 18 7:30 am Joseph is weaned off the oxygen cannulas
December 18 8:30 am Joseph is weaned off the Dextromethozon and can start eating
December 18 9:00 am Joseph finishes his first bottle of formula is a alert and OK
December 18 10:00 am ENT Resident stop by and talks about leaving that afternoon
December 18 11:00 am Joseph finishes his second bottle of food
December 18 12:00 pm ENT Resident (yes a different and second one) re-evaluates again
December 18 4:00 pm Discharged from PICU
December 18 5:30 pm Arrive home and surprise all the kids and Kathy
Finish the fastest, most exhausting trip to date
Additional details and memories :
Taking Joseph into the pediatrician he didn’t sound alarm, but when you hear him on the phone with the ENT saying “They came in for a well baby check, but he isn’t well” - when you as the parent his this, you know something isn’t right.
I believe a miracle happened Tuesday afternoon as the ENT office told the pediatrician there was no way to have Joseph seen that day. However, when I called an hour later, there was an open appointment at 3:30 pm when Dr. Park could see him. He was running late, overbooked, and we were the last ones to leave, but after the evaluation he was visibly surprised. When the specialist is surprised - you know something is not great. He said “My scheduler will yell at me, but we will find a time to get him in for surgery`”. We didn’t realize he meant for tomorrow. There is a saying that in the medical field you know it is urgent when the red tape is by passed and things happen quickly.
The surgery actually got started just before 7pm (Wedneday Dec 16th) and run until 8:40pm. Kristine and I sat in the waiting room - playing a Scrabble like game and watching TV. That was the easy part - the crazy things started when we was taken back to the PICU (Pediatric Intensive Care Unit)
How to explain the experience and what it was like? Basically any information we were given and plans that were made, were changed within either a few minutes or a couple hours. The two days there felt like a week. So here are a few examples and the story of what happened:
To Intubate or Not Intubate
After the surgery the docs decided it was prudent to extubate (remove the breathing tube and off the ventilator), to see how well he would do and assuming his air was was going to be big enough. However, as he woke up, he wasn’t getting enough oxygen and between 9pm and 10pm we tried several different drugs and steroids to help him breath well and calm down.
Finally, the doctors all decided it would be best to intubate him again and put him back on the ventilator for the night. Signing the consent form, back to the Operating Room (OR) he went. Twenty minutes later they wheel him back into the room and you would think all would be well...well NO! Remember, he is paralyzed and is unable to breath on his own. No sooner did the bed get put back, then the anesthesiologist announces that that “Breathing tube came out” - in the calmest voice. Within 5 seconds he was “bagging” him while another tube was prepped. They got it in over the next couple of minutes. We kept watching the Oxygen saturation levels - it never dropped below 95% so we knew it Joseph was doing ok. I am sure the adrenaline didn’t hurt :).
Finally, the doctors all decided it would be best to intubate him again and put him back on the ventilator for the night. Signing the consent form, back to the Operating Room (OR) he went. Twenty minutes later they wheel him back into the room and you would think all would be well...well NO! Remember, he is paralyzed and is unable to breath on his own. No sooner did the bed get put back, then the anesthesiologist announces that that “Breathing tube came out” - in the calmest voice. Within 5 seconds he was “bagging” him while another tube was prepped. They got it in over the next couple of minutes. We kept watching the Oxygen saturation levels - it never dropped below 95% so we knew it Joseph was doing ok. I am sure the adrenaline didn’t hurt :).
When they intubate someone, they are very particular about placing the tube exactly above were the bronchial tubes split to the two lungs. In order to confirm the placement, the portable X-Ray machine was brought in. 3 X-Rays and and hour later, they finally had it where they wanted it and felt good about leaving him for the night. Phew! It was after 11pm and we were exhausted! Luckily the Ronald McDonald Family Room, had provided us a small room with a full size bed - so we were able to crash right there in the hospital.
To Extubate or Not to Extubate
Wednesday morning we were back in his room for the ICU team to “round” on him. They talked through all the details and what happened the night before. He was deemed “Critical Airway” - which just means nobody but the experts were to intubate him. The rest of the night and morning had been uneventful. We were told it would be best to leave him on the ventilator for the next 24 hours. At that point we start thinking about the kids at home and perhaps Jason should go home and give Grandma a break. That was short lived, no more than an hour later, Dr Park - the Ear Nose and Throat specialist - came in and wanted to get him off the paralytic asap and pull the tube. Sigh! Another whiplash :). So we got lined up to take the tube out early afternoon.
So we waited...and waited...and waited…(one can only play so much scrabble) They finally had time mid-afternoon. Another round of consent forms, off to the OR and bringing him back. This time, Kristine got to hold him while he was a bit freaked out. He was a bit drugged up with Presadex and Kristine was keeping him mostly calm, but his O2 stats still dropped at random times. The nurse was good enough that she had grabbed the Oxygen and was reaching to give it to him as his stats dropped to 79%. It quickly recovered. The joke was the docs would come in everything would be fine, and then within 2 minutes of them leaving, his status would drop again. This happened several times.
Finally - after several events of dropping oxygen levels, they decided to put him on the CPAP machine. Basically this is a full face mask that force air into his lungs. He was on the right combo of drugs this time (vs the night before) that he tolerated the CPAP mask quite well and relaxed and stopped having any issues with his oxygen levels. So this is about 4pm. Phew - time to take a breather - get some food with Rachel who was nice enough to bring some burgers.
So we waited...and waited...and waited…(one can only play so much scrabble) They finally had time mid-afternoon. Another round of consent forms, off to the OR and bringing him back. This time, Kristine got to hold him while he was a bit freaked out. He was a bit drugged up with Presadex and Kristine was keeping him mostly calm, but his O2 stats still dropped at random times. The nurse was good enough that she had grabbed the Oxygen and was reaching to give it to him as his stats dropped to 79%. It quickly recovered. The joke was the docs would come in everything would be fine, and then within 2 minutes of them leaving, his status would drop again. This happened several times.
Finally - after several events of dropping oxygen levels, they decided to put him on the CPAP machine. Basically this is a full face mask that force air into his lungs. He was on the right combo of drugs this time (vs the night before) that he tolerated the CPAP mask quite well and relaxed and stopped having any issues with his oxygen levels. So this is about 4pm. Phew - time to take a breather - get some food with Rachel who was nice enough to bring some burgers.
CPAP On - CPAP Off
So you would think that we would leave him on the CPAP for the evening - - - at least that is what you would think if you were a tired Dad and not wanting to stress out your kid. Well...we get back from dinner around 7pm and the head doctor wandered in and Kristine asked “How long do you think we should leave this on him?” The Doc responds - “Let’s see how he does right now with it off!!” - Wow! He had issues - not 4 hours ago and you want to take it off!? Before I could say “Wait!” The Doc had the CPAP mask off and the poor kids was breathing just fine!!!! Go figure!
That evening he on enough of the Presadex and Tylenol that he didn’t try to remove the oxygen cannulas. We had to wrap him tight, but he was relaxed, not in too much pain and breathing well.
Locked Out
Remember this is about surprises! So the next we got to spend the night again in another small room provided by the wonderful Ronald McDonald Family Room. The funny part (if you are not Jason) was that because the common bathroom was in use at 3:00 am - I went to the main bathrooms down the hall. That meant going through 2 - key doors. Well - come to find out that key did NOT unlock the out door and I got to sit in the hallway for 5 minutes waiting for security to come and unlock the door for me. Go Figure!!!
Going home Tomorrow - No Wait - Today
Now for the finally …. Friday morning I was exhausted - (remember being locked out?) ...but Kristine was up and at Joseph’s side by 6:30 am. By 7am - she had convinced the docs to reduce his oxygen and see how he did --- which he did fantastic! He was getting enough oxygen and doing just fine. So then by 7:30 am - he was off all his heave drugs and still doing well and doing fine. So by the time I got there at 8:00 he was eating and eating even more. So then he keeps eating and by 11:00 had eaten his second bottle and was onto apple sauce and anything we would give him - Yahoo! So now we start talking about going to the “Floor” - the post surgical unit where he can be watched but not nearly as closely as the ICU. You have to realized - the PICU ALWAY discharges patients to the floor! But then along comes ENT and looks him over and suggests he is doing well enough we might be able to go home! -- Cool! :) -- then a second ENT Resident comes by and looks him over again and again suggest we can go home...now it 11am. Now we wait … wait…. Wait… finally they are able to page Dr. Park and get final approval for us to go home about 3pm and another hour to get the discharge papers. Sigh - that is they way of hospitals - hurry up and wait!
