Tuesday, July 3, 2018

Sleep Apnea Surgery: 1 Year Later

Last year, my daughter had a multi-level surgery to help treat her obstructive sleep apnea (OSA). This wasn't a surgery we ever thought we'd consider, but it was one that came after 8 years of struggling.

When my daughter was 3 years old, a sleep study indicated Jaycee had OSA. It is a diagnosis that is quite common for individuals with Down syndrome. The first line of treatment was to remove her huge tonsils and enlarged adenoids. I thought that the OSA would be "fixed" after the surgery. To my surprise, the follow-up sleep study showed the OSA was still present. The c-pap entered our home shortly after the study. Getting Jaycee to tolerate the c-pap machine was a long, arduous task that frankly took years.

Since her diagnosis, Jaycee has had sleep studies completed every 1-2 years. Nearly every study showed worsening apnea, which meant her c-pap support was increased more and more. Eventually, Jaycee switched to a bi-pap to make the higher pressures more comfortable for her. It worked for awhile, but the pressures kept getting higher making the bi-pap uncomfortable. If you are familiar with pressure settings, then you'll know that 19/15 with a rate of 15 is pretty high (and hard to tolerate). When she was no longer wanting to wear her bi-pap on this high rate, we started considering alternatives that we had been offered before but never considered.

I'm trying to sum up 8 years of Jaycee's OSA and machine treatments in two paragraphs. There's so much to say. If you want to read more on her background, I've written previously about her journey towards the surgery on this post.

After seeking several opinions and going through several diagnostic tests, my husband and I consented to a multi-level surgery performed by an ENT last year. A sleep endoscopy test showed exactly where Jaycee was obstructing while she was sleeping. This test allowed her team of doctors to develop a surgical plan for treatment. This website gives some information on the surgery in general. Basically, Jaycee had a total of 5 spots in her nose, throat, and mouth that would be operated on in order to create more room in her airway.

Prior to the surgery, we were told what to expect with her recovery and the risks. After surgery, they thought Jaycee would need a night or two in the hospital to be monitored. After that, Jaycee would need around 10 more days of recovery time at home. Her diet would need to be softened (much like after a tonsillectomy) during her recovery. Also like a tonsillectomy, the main risk was the small chance of a bleed post-surgery.

The benefits of the surgery would hopefully be that Jaycee's pressures could be decreased significantly. The surgeon reported that this surgery eliminated the need for a c-pap or bi-pap machine for some patients but didn't expect that result for Jaycee given her severity.

Roughly one year ago, Jaycee went in for surgery. At the time of the surgery, Jaycee was 11 years old and minimally verbal. My husband and I were nervous, but hopeful she would do well. But, the recovery was worse than I could have imagined. My body tenses up again just thinking about it. She was in a tremendous amount of pain. Jaycee has a high tolerance for pain, so I knew she must have felt horrible. But really, the doctor didn't prepared me for the pain. I suppose I should have known, but it was hard to watch her feel so bad.

Jaycee spent the first night after surgery in the ICU as planned. Then she spent the next couple of nights on the hospital recovery floor. The main issue after surgery was her pain that kept her from being able to/wanting to swallow. At first, she couldn't manage swallowing her own saliva. It took her some time to swallow enough liquids to go home safely. We eventually got there! I could write several paragraphs on how the nurses didn't seem to know how to handle Jaycee and her recovery but I'll stop myself. (Sigh)

Once we were home, Jaycee wasn't doing great. She was barely taking enough liquids and soft foods. Normally, Jaycee wants to eat and drink all day long. She had to almost be forced to eat yogurt or drink a Kool-Aid jammer. Jaycee sat around and looked pretty miserable most of the time.

Then another problem happened. Shortly after being home, Jaycee developed thrush, which was most likely a side effect of one of her post surgical medications and her decreased oral intake. Thrush made eating and drinking even more painful for her. We begged her to drink and take her medicines. It was extremely stressful! I had a plan in my head of how her recovery would go based upon her doctor's warnings, and the reality was much different.

Then, Jaycee had a post surgical bleed. And then another. That's right- two. She had to be admitted each time for the bleeds. I could write 500 words describing the bleeds, but I'll spare you. In total, it took 25 days for Jaycee to make a full recovery. Up until that point, she needed some type of pain medication each day or needed to be encouraged to eat or drink. Twenty five days is a long time when you are trying to give medications and drinks to a patient that is unwilling! After all her bleeds and complications, we were slow to let her eat foods with rough edges and allow her a full diet. We finally let her eat almost anything about day 35-40. (Jagged chips were offered later than that.)

Some thoughts for those considering a multi-level surgery:
1. Plan on more recovery time than the doctor suggests!
2. If you wear a bi-pap, make sure your team has a plan in place for safe sleeping post surgery. For Jaycee, her airways were swollen and sore as expected right afterwords. No one wanted her to wear her bi-pap right after surgery. However, she was dropping her oxygen saturation levels at night in the hospital. There didn't seem to be any thought about what we would do during this post-surgical time. When the concern came up in the hospital, members of the team had differences of opinion. We ended up using oxygen, which we had at home anyway, while she slept at night for several weeks.
3. Consider having a humidifier ready for after surgery, especially if using oxygen. We purchased a good humidifier after Jaycee's first bleed. We were doing frequent saline sprays to keep her nasal passages moistened, but we decided to use a humidifier too for another layer of comfort.
4. Be prepared. Have soft foods, lots of liquid options, and over the counter pain medications at home for discharge. We tried to avoid foods and drinks that were red, which was the hospital's suggestion so that we wouldn't mistake red food or drinks for blood in the event of a bleed. Although, Jaycee's bleeds were so significant that it wasn't questionable.

A year later, here's what we have noticed with Jaycee:
-We were told that we'd see the full effect of surgery on a sleep study within 6 months. Jaycee, because of her nighttime sleeping issues and inability to use her high pressure settings after surgery, had a sleep study completed 6 weeks after the surgery. It wasn't completed at the optimal time, but it was necessary for her situation. Even in that short amount of time, Jaycee's pressure was decreased to 15/11 and the rate was dropped. We were pleased with those results. Because Jaycee has been tolerating this setting, her team has decided to not repeat a costly sleep study yet.

-She can burp now. The surgeon thinks we are crazy and insists this surgery has nothing to do with burping, but something changed. Jaycee never burped prior to the surgery. We had never really thought about it before, but it was obvious after the surgery. Once she was recovered, Jaycee would burp and cover her mouth in surprise. She thought it was so funny and odd. A year later, she is still surprised by burps. Apparently, no one can explain this burping phenomenon but we insist it happened because of the surgery.

-Jaycee can literally cough out mucus. Jaycee never coughed up mucus prior to the surgery. She's sick with respiratory infections often, so this was a big change we noticed shortly after surgery. She would cough the mucus up and not know what to do because it had never happened before. It was another change in her body that she was surprised by. This, the surgeon agreed, is something that could have been changed by her surgery.

In all, I can look back at the surgery now and be thankful that we did it for the positive changes Jaycee has experienced. However, I was really regretting our decision while we were in the middle of her extreme pain, bleeds, and inability to drink. Last summer was quite brutal, and I was sorry that Jaycee felt bad for the majority of her summer break. But, I am glad today that the surgery is behind her, and it was beneficial.

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