Love is...Consenting to a Surgery

The monitor beeps as numbers are displayed. 

There's constant scurrying outside the doors of the room.

My eyes strain to stay open after a grueling night. 

A whimper comes from my daughter's mouth. 

I take her hand, kiss her forehead, and say, "I love you, Jaycee." 

She says immediately, "Uh-uh!" (As in No!)

"Yes, I do. Mama loves you," I say with conviction. 

"Uh-uh," she retorts. 

I felt broken. 

She's miserable, and she blames me. 

She's partially correct. I consented to all this madness. My husband and I both did. 

Like many people with Down syndrome, obstructive sleep apnea (OSA) has been an issue for Jaycee since she was 3 years old. Having her tonsils and adenoids removed shortly after her OSA was diagnosed did not "fix" her apnea. Thus, treatment with c-pap started on my skinny, little 3 year old child. 

Over the years, her OSA has gotten worse. Some of it can be blamed on her weight gain (which has definitely been impacted by her health issues, hospital admissions, and prednisone use several times a year), but not all of it can. 

The first few years Jaycee had sleep studies, I prayed we would see improvements, and I prayed with confidence. Every time in the past 8 years of studies, it showed she was getting worse and needed higher pressures to force air in to keep her airway open as she slept. Eventually, she was switched to a bi-pap and on high levels of pressure. (19/15 with a rate of 15) I was told her pressures were so high that it was like driving down the highway and sticking your head out the window. More than one medical professional remarked how incredibly high her pressures were and wondered how she tolerated it. That fact is that she didn't tolerate the high pressures. She wasn't keeping her mask on at night. She was also beyond tired and ready for bed by 8 pm each night. 

In the last couple of years, several tests were conducted. Opinions were sought out. Options were made available. 

One professional nonchalantly suggested the best course of action would be to do a tracheotomy, which would bypass all the possible obstructions in the nose and the mouth. When I told this well-respected professional how I shocked I was by this option, he responded, "I don't see why you are so surprised. Your child is severely disabled. She doesn't even talk." 

As if that was a reason to do it? I never saw that "professional" again. A tracheotomy may have solved one problem, but it would have caused many new ones. It wasn't an option for us. 

And so we found ourselves going back to something offered 2 years prior, a multi-level surgery to address her obstructions. The first time the surgical option was offered, I said I would never do the surgery on my child. Things changed though, something needed to be done since Jaycee was no longer able to tolerate her pressures. Never say never! After a sleep endoscopy test which absolutely showed what was collapsing in her mouth and throat causing the obstructions, a plan was developed. 

We knew going in to this surgery that it was going to be hard as there were 5 places in her nose, mouth, and throat area that would be operated on. Jaycee's recovery was gruesome after her tonsil and adenoidectomy when she was 3. But, she was 11 now...older, stronger, and a much better eater. I was cautiously optimistic about her recovery. 

The surgery was absolutely worse than her tonsillectomy. Jaycee was older, but her response to pain was similar. As long as she felt pain, she refused to eat and drink. One night in the hospital was expected, but Jaycee needed a couple more. When we came home from the hospital, I tracked every ounce and she was barely meeting the daily goal to stay hydrated. Then she developed thrush- most likely due to the medications she was on post surgery coupled with the fact that she wasn't eating or drinking well. The thrush added to her pain and discomfort. The word stressful doesn't begin to describe the situation but it's the best word I have. (Other than horrible and terrible) She was in a lot of pain and had to be encouraged (often forced) to take anything by mouth including her pain medications. 

Then it got worse. Through the baby monitor one night, I heard Jaycee coughing. I went to her room to check on her and found she was coughing on blood coming from somewhere in her mouth. This is a long story, but I'll skip ahead to the part where Jaycee ended up back in the hospital for observation. 

About a week later, we awoke to Jaycee covered in blood again. A second bleed! Ugh! This time, the bleed had stopped by the time we discovered it. (Jaycee apparently woke up, took off her blood covered nightgown, changed into a new nightgown, and put herself back to bed!!!) Again...long story that picks up where this blog post began....

...in the emergency room with Jaycee arguing with me when I told her I loved her. 

I'm sure the surgery was confusing. I'm sure she didn't understand her pain. I'm sure it was all mentally and physically exhausting for her. It certainly was for my husband and I, and we didn't experience the pain of the surgery. I'm sure at that moment Jaycee wondered why her mother and father had allowed this to be done to her. 

Parenting is hard. Deciding what to do for your child with health problems is extremely complex as you must weigh risks and benefits. The decision to do the surgery was done with prayer, research, thoughts, worries, and hope for a better future. 

That surgery was 4 1/2 months ago. I still hate the thoughts of Jaycee's recovery and could talk to you for an hour about everything that didn't go as planned. I'll just say this. A sleep study just 6 weeks post surgery (which was only conducted so she could safely restart her bi-pap as we were using oxygen only after surgery) showed improvements already! The full effect isn't seen until 6 months post, but just 6 weeks later, Jaycee's pressures were dropped to a more tolerable level. We knew this surgery wouldn't get rid of her bi-pap machine. We were hoping for the result that occurred just 6 weeks later. Plus, Jaycee can now cough up mucus. She's never been able to do that! 

And so...

I sat in that emergency room feeling crushed from Jaycee's complications and her doubting my love. I wished for a time machine. I wanted to go back before the surgery and opt out of it to spare her of this pain. At the same time, I knew it would be better in the future after she was completely healed up. I had to simply give it time.

When I tell my daughter that I love her now, she says it back to me. 💓

When Jaycee's Tonsils Came Out

Whenever someone tells me their child is getting their tonsils taken out, I cringe. If they ask, I tell them our story.

Back in 2009, Jaycee's cardiologist noticed she had some high pulmonary pressures. "This could be caused from sleep apnea. Has she ever had a sleep study?"

She hadn't but one was scheduled soon afterwards. That first sleep study was torture for me, her, and the sleep lab technician but she did get enough hours of sleep recorded in order for a determination to be made.

Sure enough, she had obstructive sleep apnea.

Since her tonsils were so large that they were "kissing," it was no surprise that her Ear Nose & Throat doctor (ENT) wanted to perform a tonsil and adenoidectomy. This is a fairly common issue with Down syndrome. The surgery was discussed and explained. A surgery was scheduled.

Prior to the surgery, I was nervous. Jaycee was 3 years old. She had a high pain tolerance and wasn't able to communicate pain well. She was a poor drinker on a good day. I had to often sit with Jaycee and make her drink from a soft top sippy cup a few times a day much like you do a baby. After the surgery, she would need to stay hydrated and I feared this would be hard. I was also in my last trimester of my pregnancy, so that probably contributed to some of my pre-surgery anxiety.

The surgery date came. Things were removed in the hope that her sleep apnea would be cured. I believe she spent a night in the hospital before being discharged home. The recovery at home was brutal. She refused to eat or drink. I took syringes of liquid and pleaded with her to drink a teaspoon or less every hour. I tried every drink and liquid I could think of. There were moments when I was really successfully, but mainly I was not. She started getting dehydrated. I think we went to the emergency room twice, once for fluids and once for a stronger pain medication. 

About 10 days after her surgery, we were trying to get Jaycee to bed. She kept getting up and opening her door. I finally got really frustrated and went to her room determined to get her to sleep. When I opened the door, there was blood on Jaycee, the wall, her carpet. It looked like a crime scene. We were warned prior to the surgery that a post-surgical hemorrhage rarely happens but if it does, it can be deadly. Go to the emergency room immediately. I remember those words of warning.

We quickly loaded her in the car and drove to the nearest emergency room. Fortunately, Jaycee's bleeding stopped spontaneously before we got to the hospital. That was a blessing! As a result of the stress and panic, I started having contractions. I was 37 weeks pregnant and soon became concerned that I was going to be in a hospital bed too. We spent all night in the emergency room waiting to be admitted for a full 24 hour observation. Thankfully, there was no more bleeding. In fact, she finally started eating and drinking. It seemed that she was finally recovering from the surgery.

We took Jaycee home, I was exhausted and still having contractions. A few hours after we got home from the hospital, we decided to take me to my hospital. The next day, Elijah came into the world. So the story of Jaycee's tonsillectomy is coincidentally the beginning of Elijah's birth story.

And in the end.... She had a follow up sleep study to make sure the surgery "cured" her obstructive sleep apnea. Surprisingly, she still had obstructive sleep apnea and at 3.5 years old, Jaycee started using a bi-pap machine.

When I tell my story, I don't want people to be afraid or to talk them out of it. But, I try to remind them that sometimes things go wrong, that the recovery may not be "routine," and the result may not be what you expect.