We have recently been through what I call a whirlwind of medical procedures! I’m sitting in the hospital right now, near my 13 year old daughter as she sleeps. This is a good time to tell her story. Maybe it will help someone else out there.
The Short Version:
Half of my 13 year old daughter’s face is paralyzed due to an ear infection that reached into her mastoid bone. She has had 2 surgeries to hopefully help this area to heal and help her facial nerve to heal as well. She will require at least one more surgery to hopefully correct the problem that all of this has caused.
The Long Version:
On February 15th, my daughter came to me saying that she couldn’t move half of her face. Having known someone with Bell’s Palsy (half of their face was temporarily paralyzed) before, my husband and I weren’t all that concerned about it. I did a little research and found out that it usually takes a few months to heal and that most doctor’s don’t do anything for it but give it time. This was a Friday.
Over that weekend, behind her ear began to hurt. I did some research and read that sometimes there is nerve pain involved with Bell’s Palsy and the pain location is behind the ear. Still I wasn’t too concerned, but decided to take her to the doctor in case her ear was infected. At the doctor’s office, the only one who could see us was a nurse practitioner. Knowing ears are usually pretty easy to diagnose, I felt pretty comfortable with that. She looked in the ears and said that all looked clear. They put her on an antibiotic, “just in case”, but I’d already been giving her one and doing garlic ear drops to fight any infection and didn’t really want to give her more if her ear wasn’t even infected. After all, too much antibiotics can cause your body to not respond to them very well. 3 days later her ear drum perforated. Hmm, no infection? Are you sure, Mrs. Nurse Practitioner? She also put her on a steroid for the Bell’s Palsy. A typical, somewhat unproven treatment of Bell’s Palsy. I was OK with it though, as I wanted to do anything that could possibly help her nerve to heal and fully recover.
This was not the first time she’s had a perforated eardrum, so I knew exactly what a doctor would do. Every time I have taken her for this throughout the years, they would give her antibiotics to clear up infection and tell me that it would heal on it’s own. After a few days and her pain was not ceasing, I decide to take her back to the doctor (and actually requested a dr this time) because I’m growing much more concerned about her ear pain and the fact that her face is still paralyzed. The doctor takes a look and says what I knew she’d say. “Yep, it’s perforated, but it will heal” and “Bell’s Palsy usually clears up in 2-3 months so we’re just going to wait and see”. Thankfully though, she informed me that she would consult with the Ear Nose & Throat doctor just to be sure. She sent us home with no meds. Yay!
The next day I get a call from the ENT doctor’s office saying that she must be seen the next day. We go to the appointment in a town about 45 minutes away and they decide that she needs surgery to put tubes in her ears so that the infection would have a chance to drain, hopefully healing the nerve in her face in the process. The doctor also informed us that this is not Bell’s Palsy, because Bell’s Palsy is when you don’t know why half of your face is paralyzed. He said, he knew exactly why her face was paralyzed. It was because of the ear infection. It had gotten so bad that it affected the nerve. What does this mean to us? This meant that the information that I had been reading about her face getting better was not applicable to her. The doctor was a bit grim, explaining that he didn’t know if her face would ever return to normal. He didn’t want to give us false hope. It all depended if the nerve was dead or not.
We left his office to get a CT scan and then on to the hospital for tubes to be placed and an overnight stay where they could tackle the infection with IV antibiotics. This was on March 9th and they released us on March 10th. All seemed to be going well. Her ear stopped hurting. It stopped draining, too. She was on ear drops and a high powered antibiotic for 10 days. We went back to the ENT and he was pleased with the progress so far but wanted to see her again in a week. 4 days after her last dose of antibiotic (and the day after we saw the ENT), it started hurting again. The draining began again, too. It was the weekend, so there wasn’t much we could do. They checked on her over the phone on Monday and decided that the doctor could wait until Tuesday to see her since her appointment was already scheduled for then.
We get to his office, he looks into her ear and is very surprised to see infection again. He begins suctioning it out and realizes that there’s also granular tissue growing around the tube, prohibiting it from draining correctly. Knowing that this was a more serious and stubborn case of infection, he decides to consult with an even more specialized ear specialist in a larger town to see what he thinks. He assures us that we’ll be getting a call the next day. He also prescribed more Bactrim (the antibiotic that seemed to work the first time) and told us to continue using the ear drops. Sure enough, the new doctor’s office called and wanted us in the next day. The day of that appointment was today, April 4th, 2013 (at the time of writing).
This morning, when I went to wake her up to get ready to go, she was bright red, almost glowing. She informed me that she thought that she was sick because she was hot and cold all night long. I checked her temp and she had a fever, but knew we’d better still go, in case the sickness was related to the infection in her ear. We drove 2 hours to the appointment and spent about 15 minutes with the doctor when he told us that he was going to have to do surgery again. He said that he believes that the infection is being caused by a cyst (aka cholesteatoma) that is growing behind the ear drum in the mastoid, eroding away at the bone. If it was not taken care of, it could cause a brain infection. The cyst was caused by years of infections and ear drum perforations. He was going to have to open her up behind the ear, clean all that infection out, clean the probable cyst out and then close her up. He said we’d probably schedule it for first thing in the morning. But, I asked him if there was any way to do it today. That may sound crazy, but we were already in town and I hated to go back home just to turn around and come back again. Plus, I’m supposed to be going to the Midwest Parent Educators Conference in Kansas City on Friday and Saturday. Saturday, I’m supposed to be serving on a panel answering questions at that conference about Using Technology in Your Homeschool. I didn’t know if I’d still get to go, but I figured that it would be more likely if it happened sooner. He checked the schedule at the hospital and everything worked out perfectly. It must’ve been a God thing!
- Getting her admitted into the hospital
Thankfully, she hadn’t eaten yet this morning because she wasn’t feeling very well. If she had any food, she most likely would’ve been asked to return the next day. Her body continued to become red like a sunburn and itchy all over. We got her checked in and into pre-op when they decided that she must be having a reaction to the antibiotic that the ENT doctor had put her back on. They gave her some Benadryl to ease the itch and said that they would watch her. The surgery and recovery time took about 3 hours. When the doctor was done, he came out to talk to us. He informed us that there was in fact, a very large cholesteatoma (cyst) growing back there. In fact, it had actually partly attached itself to the nerve. He removed all that he could, including the part on the nerve, drilling out part of the mastoid bone and then he replaced the tube and cleaned out all of the granular tissue. He said that there was no way to get it all when it was so infected and that we’d give her some time to heal. We’ll be returning to do the same surgery in another 4 months where some of her mastoid bones may need to be rebuilt. This surgery is usually done as an outpatient surgery, but because of the amount of infection in her body, they want to keep her overnight, if not 2. He was very pleased that we went ahead and did the surgery today instead of later because the infection was that bad…..it had become dangerous.
- Pre-op. She was so red, she was chilled. It was like a bad sunburn.
She came out of surgery with a large bandage around her ear and her color was starting to return to normal after the allergic reaction. She’ll go home with a PIC line where we can administer high doses of antibiotics intravenously rather than orally for 2 weeks. When the doctor was leaving, he told us that he felt that her facial nerve will heal, but it may take up to 6 months. That was music to my ears! I’ve been so fearful that it would never recover and that she would have to live the rest of her life with only half of her face working. I’ve literally had to talk myself out of the fear and remind myself daily that God is in control. I can’t wait to see her beautiful smile again! While I realize that there’s still a chance that it won’t heal, I’m very happy to have some hope to grasp onto, straight from the doctor’s mouth.
These past few months have been interesting for us. My husband’s dad had a heart attack at his niece’s wedding and was flown by helicopter to a nearby heart hospital back in September (he’s OK). My 7 year old was flown by helicopter to this same hospital in November for respiratory failure and pneumonia (she’s OK, too but has asthma from it now). We’re now staying in the exact same room! My 10 year old who has epilepsy has also been having struggles with vision, seizures and migraines that has taken many trips to the doctor for medication adjustments. And now my 13 year old has been having this problem. We’re very ready for a season of no medical issues. We’re hoping this is the end for a while! Please pray for my daughter to heal quickly. I’m praying that the next picture I share of her will look more like the first.