Patched

In December 2017, Greyson had bilateral ear tubes put in for frequent ear infections. The tubes appeared to have been working for a few months, but by late 2019, we noticed that he was having frequent infections again. Turns out, Greyson’s tubes never fell out, like they were supposed to, falling into his inner ear canal. Because the body sees the tubes as a “foreign” object, his body began to send white blood cells to his ears to get rid of the tubes, which just resulted in more and more infections, drainage, hearing loss, etc. With both ear drums perforated and his infections becoming frequent in early 2020, we knew by February that he was going to need surgery to correct it. Because of COVID-19, everything with Greyson’s procedure stood still. We were unable to do anything about his ears since Pennsylvania was on an elective surgery restriction. By early May, Greyson’s ears had become so troublesome, that I made an office appointment with his ENT. Dr. Da Costa, the surgeon, agreed that Greyson needed to be sedated for a bilateral tube removal and ear drum patch, to replace the damaged ear drums.

Now, to schedule a surgery for a kiddo at the ENT center, we had to have a pre-surgery clearance appointment (within two weeks of the procedure) with his pediatrician and get the “OK” from her to proceed with the surgery. On Monday, July 27th, I was able to get in with our pediatrician for the pre-op appointment. This was going to be the first time that G was going to be under anesthesia without actively being on an anti-convulsion med for his epilepsy, and due to his most recent seizure, the pediatrician did not feel comfortable signing off on the procedure until she spoke with the neurologist. So, frustrated that we didn’t know what was going on, I was afraid that his procedure was going to be cancelled for August 3rd, which would require a longer wait for G’s much needed relief. By Wednesday morning, we received the clearance for Greyson’s surgery, but only if he could have the procedure done at a hospital, rather than the small outpatient center we typically go to for these types of day surgeries. I received a call from the surgery scheduler at the ENT office and she stated that she had one cancellation for August 5th at Lancaster General Hospital, but if we couldn’t make that work, we were looking into late October for the surgery. I refused to wait that long for Greyson. I knew that once fall comes, he is more prone to getting a cold, which almost always involves some sort of ear infection. We took the appointment for today and were able to get everything sorted out. Our pediatrician also recommended that both Derek and I could attend the day of surgery, since COVID has been restricting companions to 1 per patient. Greyson has been to LGH in the past for ER visits and an EEG in 2017, but never needed sedation for a procedure, so I was a little weary of the hospital, since it’s not necessarily a children’s hospital.

Like our other adventures involving sedation, Greyson almost always was scheduled first thing in the morning, due to his age and having to fast, etc. Today was no different- up at 4:30 am and out the door by 6:30 am. Now, I’ve been to LGH hundreds of times, but again, here I am the evening before, google mapping and street-viewing the parking, entrances, etc. I think my nerves always spark a fear of not knowing where I am going, which is a HUGE fear of mine. Fortunately, I found the parking garage with no issues and we checked in around 6:50 am. Each patient upon parking in the garage, is guided to the information desk for a COVID-19 screening, including a temperature check, symptom checker and questionnaire. LGH has quite the system when checking in for a procedure, so after we got our “screened” stickers, we made our way to the first stop, which was admissions. Being so early in the morning, there weren’t many people checking in, so Derek and Greyson stayed in the hallway, so G could spin and run up and down the halls. Mid way through check-in, I could hear Greyson’s sneakers running up and down the marble hallway, letting out the occasional squeal in excitement that he was out and running around. My faith in LGH was increased when the woman checking us in followed me to Greyson out in the hallway, to put a wrist band on him. She was an older woman, so I didn’t have much hope that she would understand Greyson and his needs, but she was great. She walked us to the elevator, was able to help us carry belongings, while Derek carried Greyson. Expecting her to leave us at the elevator, she accompanied us to the next floor for the pre-op waiting room and introduced us to the staff that would be helping G for the morning. HOLY CRAP a Lancaster County medical facility that had staff who saw our struggling and jumped right in to help. This has never happened for us at a non-children’s hospital.

The greeter assisted us to check-in and pickup our surgery pager and six-digit tracking number for us to check on Greyson’s progress throughout the morning. Though his job was to simply greet us and direct us to another desk, he took us back to a room immediately. HOLY CRAP. Another staff member who saw that we were struggling with an almost four year-old boy and jumped in to help us. I never would have expected this. We were brought back to Greyson’s pre-op room and begun the process of going over medical history, changing him into surgical attire and speaking with the anesthesiologist and eventually the surgeon. Due to Greyson’s allergy to Red Dye #40, we were unable to give him the sedative medication that the hospital carried, so a pharmacist made a special syringe of sedative that was dye-free. Once we administered the medication, Greyson started to feel pretty loopy after about 15 minutes. Because of the red dye hold up, we waited about 1.5 hours total in pre-op, missing Greyson’s surgery start time of 8:30 am by about an hour.

In pre-op waiting for his “happy juice” to calm him
Not liking the strings on his hospital gown

Waiting in the surgical waiting area was like waiting in a busy train station, while attempting to socially distance from other people. Pagers going off every few seconds, notifying family members that their loved ones were finished in the OR, or the lobby phone ringing repeatedly from doctors calling families to explain the outcome of the patient’s procedure. Greyson’s entire procedure lasted about an hour or so. His surgeon came out shortly after we were notified that he was finishing up in the OR and let us know that Greyson did great. We were relieved. Luckily, his ears weren’t too bad- some wax issues in the left ear, which was causing some hearing loss and both tubes just hanging out in the ears. Dr. Da Costa patched both ear drums and we were brought back to the recovery room shortly after speaking with him.

The tracking board, where we watched Greyson’s progress in surgery

Now, I know this entire day sounds relatively normal and boring, but in the true Greyson style, the morning was about to get more…..difficult.

Derek and I predicted that the recovery area would be complicated because of his age and also because of the risk for seizures and self-injury. Our predictions were more than true, especially when recovery called up to the front desk and told the staff to make sure we had Greyson’s helmet. I put up my frizzy, untamed, curly hair and we made our way down to recovery. Precursor for this entire day would have been nice for me to tell you. Because Greyson, Derek, nor I had a COVID test before the surgery (which we were told wasn’t necessary), Greyson was treated as if he had COVID. That means full PPE- two masks, scrubs, dressing over the scrubs, a cloth/disposable covering over the dressing, goggles, a face shield, gloves and shoe coverings. It seriously was borderline the movie Outbreak with Dustin Hoffman. Every person who came in contact with us was required to have the full protective gear on. Once we got into the recovery room, Greyson was in a tiny pod, specifically for kiddos that have had procedures that may be scared or fussy. The pod still opened up to the other recovery beds, which is in an open room with curtains separating patients. Not really conducive for a screaming autistic child.

Greyson was still asleep when we got into the pod, which was just enough room for Derek, Myself and one other staff member. The staff member was in a hazmat suit, almost resembling an astronaut suit, complete with an enclosed helmet with a filtration system attached, so that she was breathing in purified oxygen. I thought it was a little excessive, but then I figured it was better to be safe than sorry. While the anesthesiologist came in to inform us that he did well and she wasn’t anticipating any issues, we received word that his COVID test (they did as a precaution when he was in the OR), was negative. I went over discharge paperwork with a nurse and we were discharged straight from the recovery room, rather than having to go back to the pre-op area due to him being extremely upset and having pulled out his own IV. As soon as we were done going over the information, I trekked down to the parking garage with all belongings in hand and pulled the car around to get Derek and G, who were waiting at the entrance in a wheelchair with three staff assisting. By the look on Derek’s face, I knew that Greyson probably freaked out once I left the room. Greyson was in the hospital pants, a t-shirt and helmet, and was hitting, kicking and headbanging Derek as the staff attempted to help get G under control. Once he was in the car, G began to hit himself, bite his legs/feet and scratch his body. We got him home, fed and put on “Tangled” for him, his latest Disney movie obsession.

The ride home went a little bit like this:

The day was successful, stressful but also relieving to see that the staff at LGH were so accommodating and kind, despite being exhausted, working through a pandemic and having to use extra precaution for each patient. Again, my faith in the hospital system in Lancaster has been restored (for now) and I would highly recommend LGH for any pediatric procedure at this point. As for us, we will manage our still somewhat loopy toddler and torture ourselves by watching his favorite Disney movies this evening, just to keep him happy.

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