Wednesday, July 29, 2015

Tonsil Recovery in Kids

Tonsil recovery in kids. Sigh.  For the past few months I have been DREADING my child getting her tonsils (and adenoids) removed (tonsillectomy). So much that I was not able to relax at all the beginning of the break and then of course she is going off to Kindergarten this fall so it's been a double stressful summer!

She finally had her tonsils removed on July 16th and it was as much as a crazy time as I was expecting. Thankfully there were not many complications at all that I was fearing, like her scabs ripping off and having to take her to the ER which so many moms warned me about. Whew!  She's improving a lot and I can't wait for more fun times for the rest of our month before school starts (and more fun blog posts too)!

But since this whole tonsillectomy was such a huge part of our summer, I thought a blog post was in order to help other mommas going through something similar.  So the first question I have been getting is:

1) Why a tonsillectomy?

Well, for some kids they have had a ton of infections such as strep throat, tonsillitis and ear infections needing lots of antibiotics. It used to be you had to have so many cases documented before they would remove them, but now I don't think they are as strict. Just ask my sister who had to have hers out in her 30's because she was always 1 case shy of getting them removed each year as a child. Poor thing took her 6 months to recover as an adult.

My child NEVER had strep throat, and actually had never experienced a sore throat.  So when I took her to the first ENT, I was expecting him to tell me she had a deviated septum or some sort of nasal issue causing breathing problems. Nope. He took one look inside her mouth and told me she needed her 'tonsils removed.' Whaatt?? I was shocked and had no idea large tonsils caused snoring. They also recommend removing large tonsils to help prevent future strep throat infections.

Her snoring at night (starting around age 4) was the main reason we had them removed because she tossed and turned all night, would sometimes wake up sweaty and was CRANKY a lot during the day. The doctors all told me these are signs of sleep apnea, even though I never witnessed her stopping breathing, they said she probably was and it was hard for a parent to determine that on their own.

2) Sleep Apnea?

So I took my child to a second ENT, who was actually the one that I wanted her to see first, but he was booked out a month.  He also took one look inside of her mouth and said, "on a scale of 1-4 with 4 being the largest, hers are a 4." Gulp. I was devastated because come on, who wants their child to have major surgery?? Noooo.  I asked about sleep studies and he said he could order one, but they are invasive, kids get scared with all of the contraptions and honestly he knows the answer already, that with her tonsils and symptoms, she in fact has sleep apnea.

Apparently sleep apnea which causes them to wake up at times to catch their breath, can cause the restless sleep, the night terrors, sweating, and in some kids wetting the bed.  Snoring is also a big factor since they don't get good rest at night, which causes cranky kids! In school aged kids, it causes them not to focus during school, being tired and cranky all day, and mimicking signs of ADHD with hyperactivity, etc.

3) But can it just be allergies, or will she grow out of her large tonsils?

I was determined to shrink these suckers! So I took her to an allergist and she was allergy tested only to find she was allergic to nothing. But the Dr. did say her nose looked 'allergic' inside and could be something in the air she's allergic to that they can't test for, so they put her on flonase and cingulair.  I also took her to a chiropractor and did essential oils. And nope, they stayed the same size. I took her to our pediatrician and she said they did look large, and to keep giving her the allergy meds and it may help.

I also took her back to the ENT and brought my husband this time, and the Dr. said they were still large. Disappointed much? Uhm yes. He said they may go down to a 3 out of 4 as they fluctuate a little, but that they will never shrink to a normal size. He said they are built anatomically, meaning it's just how hers are structured and nothing we can do can change the way they are. He said we could wait until she was older to see if she grows out of the snoring or the snoring does not affect her as much, but it's a risk to take because if we wait until she is a teenager, then the surgery is much riskier and takes a lot longer to heal. After having 2 friends who had them removed as an adult all ending up back in the ER post surgery, we thought "no thank you for waiting until teenagehood!"  Plus we didn't want to have her struggle in school.  We also decided it was best to get them removed over the summer before school starts, since it's a long 2 week recovery time.

The Surgery..agghh

I was so fortunate to have our ENT (Dr. Tseng) remove my little girls' tonsils. He's been my ENT the past 10 years (for allergies), he also removed my sister's tonsils and did an excellent job.  He was also a life saver, literally, to a friend who had hers removed by another Dr. and after she hemorrhaged a few days post surgery, our ENT was thankfully working in the ER and saved her life.  He told her that her doctor had done her tonsillectomy the old fashioned way and this ENT was trained on a new technique that would not have caused her to end up in the ER.  He actually does about 80% pediatrics so most of his practice is kids, but also sees some adults.  So we basically trusted him the most with our precious child! Plus the fact that he's been in practice for 15 years and said he treats all of his patients as he would his 2 young daughters and wife. :) And he is the most conservative in opinions, so if he said she needed them out, then I believe him.

I was also so glad to have our ENT request to have our little girl spend the night in the hospital for precautions and to monitor her oxygen levels since she had some snoring issues. And I was more than happy to agree because taking my child home after major surgery and monitoring her over night would have sent me over the edge.

We also WAITED to tell her about it until the night before the operation.  Otherwise it would have caused her extra worry!  She cried when we told her and said she was scared, but the one thing that really helped was reading Good-Bye Tonsils!  Even my husband was impressed with how well the book worked.  I had to redo some of the story (she had lots of infections that caused her surgery), but it really helped calmed her down.

Then it was off to bed and then up early for a 7am check-in.  We had it scheduled at Baylor Frisco which is like the nicest posh hospital I have ever been in. The front desk where you check in was a concierge type kiosk with women wearing dress suits.  Then the lobby was like a hotel lobby. I asked where the waiting room was at first because I was not convinced the wing back chairs, cozy fireplace and free pastry/coffee area was a hospital waiting room!

They also gave us a pager that would ring anytime we were needed, and patient's progress was displayed on a computer monitor by patient number letting you know when pre-op, anesthesia and post op was completed too.

When it was our time for surgery, they led us back to the pre-op area where a cute little bear dressed in scrubs was waiting for our child, with a TV in the corner showing Disney Jr shows and a cute little bear hospital robe. The nurses were great too!  They gave her Versa to drink, which helped her anxiety and she started seeing 2 of everything lol.  The doctor and anesthesiologist came to talk to us and then it was time for them to take our little girl! Apparently the procedure itself was about 10 minutes but they would sedate her first, give her an IV after she fell asleep and then there would be some post-op time so about 45 minutes total.

When they wheeled her away I kept a very strong face, smiled and hugged her!  The more worried you look, the more they will be scared, so it's best to look like everything will be fine (even though you are dying on the inside).

The strongest feeling I had was that I felt I was violating her and taking something away from her. That removing her tonsils was like an invasion of her body :( I just had to remind myself they would continue to make her suffer at night and could lead to future illnesses.  It hurt me that I was forcing her to do something, but realized no one actually wants surgery, and it's for the best.

I kept my mind off of it by going with my other daughter to the gift shop to help her pick out a gift to give her sister. I'd already bought her a Barbie she had wanted a few months ago and hoped it would cheer her up after her surgery.

Then after 40 minutes the Dr. came to us in the waiting room and I swear to god my heart must have stopped beating for a few seconds because I felt out of breath. As soon as he said she was 'okay' I finally got color back in my cheeks :)  He said she did great and he wanted to take us back there immediately to help her recover. I walked or speed walked to the post op room and when I saw her she was on her side coughing up 'stuff' and they were giving her oxygen. She was hardly awake and the nurse told me to crawl right up into her bed and snuggle with her. My shoes flew off and I crawled right in and talked to her and comforted her.  Poor little thing!  She looked so small and fragile in that bed!  I brought her sippy cup and used it to give her some juice and then they wheeled us to her hospital room.

Hospital Stay

After they wheeled us into her new room, we were immediately met by her new nurse Dianna.  She was very child friendly and super friendly with our daughter!  She also told us about what to expect with her recovery, meal services, and the awesome juice/coffee bar down the hall. My little angel slept the next hour as I laid next to her and we ordered lunch. Uhm, it was extra fancy and delicious, not at all what hospital food is normally like (veggie burger and fries).  And dinner that night? I had grilled salmon and my husband had beef tips. Apparently they give post baby mommas a steak and lobster dinner on their last night too.

My little girl finally woke up and bless her little heart, vomited a few times.  She never warned us it was coming, but her pulse monitor would start to go off to 150 beats, and then she would vomit. Luckily we had the bags ready.  They gave her anti-nausea meds as she couldn't even keep water down, and then gave her some morphine. The poor girl didn't like her IV but thankfully was completely patched up and attached by a pink bandage so she wouldn't rip it off (and good for this momma who would not be able to handle looking at it stuck in her arm).

She watched TV for the rest of the day and I stayed right by her side, literally in her bed with her. Her sister came to visit after her nap (thanks to her grandma Coco), gave her hugs and gave her a little stuffed unicorn.  We also were thankful for such sweet family and friends who had flowers and stuffed animals delivered to her room!

As for the night, not going to lie, it wasn't fun.  She fell asleep at 8pm, but then of course our night nurse came in every few hours to check her vitals, give her meds and then at 2am she woke up to use the bathroom. That required a nurse called to unhook her wires.  I slept  on the pull out sofa, and then she woke at 6:30am. Ugh... She was ready to watch cartoons and to eat.  So I ordered her some yogurt and I ate a breakfast burrito.  On a side note here, just forget about working out and dieting the next few weeks as a parent, just saying :)

She was able to keep the yogurt and water down, and then we were discharged around 10am.  And all I have to say is there is no way imaginable that she would have gone home after surgery. I have no idea how this is done on an outpatient basis, but so glad we had nurses to help us through the night and monitor her. And so glad they could continue to give her meds in her IV, because pain meds hurt going down their little swollen throats.

Home Recovery

So this is the part that was not fun.  Well surgery was the worst, but this part I was dreading.

We took her home Friday morning and she stayed on the sofa watching TV for most of the day. We gave her the prescription Hydrocodone/acetaminophen and apparently it tastes awful! We got it flavored at the pharmacy but it still made my little girl cry every time we gave it. And chasers were huge, we'd give her anything, Nutella, ice cream you name it, whatever it took. And she slept with me for the first few nights too to help monitor her recovery.

Saturday night she got a fever at 2am of 101 and they said to call if it got that high. Seriously? Ugh, so I called and they said it was due to dehydration, to give her more fluids (which she hates because it hurts to swallow) and more hydrocodone/tylenol and it finally came down.  But she continued to have about a 100 degree fever the next few days. AND she threw up Sunday a lot because she refused to eat and was taking pain meds. Poor girl! Luckily we had anti-nausea meds to help.  She vomited about once a day the next day or two as well.

We spent the next week at home, staying out of the heat and watched about every good kid movie on Netflix and Amazon, and downloaded a few others. And a must was of course watching the Brady Bunch tonsil episode with Cindy and her mom!  My poor toddler was getting sucked into the TV watching too, but I figured why not? The summer won't last forever and pretty soon we would be back at the parks and outdoor activities.

We had our 1 week follow-up appointment and the Dr. said she looked good, well her throat looked like hell inside, but that's all normal with the scabs and stuff.  She also said we could just give tylenol since the opiate pain meds have alcohol in them and burn their throats more. Nice.  And my poor child has lost 4 lbs but she said that's normal too. And the breath. Have I mentioned the awful breath?? I read about one mom who put it best: "Your child will have the breath of a dog that's dead in Texas in August"! Ha, sounds awful but so true! It's all normal but is so strong you can smell it a mile away (picture sleeping next to her at night).

The week following the surgery was rough, not much sleep for her or for me, taking care of another younger child, the vomiting, and the CRYING episodes, her being really weak, not being able to talk much and pushing fluids and meds was definitely difficult.

We are now 2 weeks post and she has made more progress.  Her voice has changed and is more nasally but they said it's because she is still healing and is talking through her teeth since it still hurts to talk.  They also recommend the second week of less activity so she is going to a little summer indoor dance camp from 9-12pm and then comes straight home to rest.  Still no swimming for another week due to it being such a high intensity activity and the chlorine can really make it sting in her throat.

So we are on the mend, but still have a little bit more of recovery. She still chokes on some soft foods because she has a hard time swallowing, so I have to make sure she chews well.  I am hoping too that her crankiness and crying episodes is just because she isn't sleeping well at all with being in pain at night, and not feeling great. It seems that every time I ask her a question I get tears! Please let this be a short term effect.

But if you mommas are needing a few tips, here are a few from our experiences:

1) Get 2nd opinions from ENT's. Or 3rd opinions :)

2) Push for an overnight hospital stay. Remember that a tonsillectomy is considered major surgery!

3) Read Good-Bye Tonsils!

4) Get a special present before the surgery so when they wake up, they can have a special toy to play with!

5) During your hospital stay, push juice and fluids, but try not to give water as it can cause them to vomit more.  Also ask for the anti-nausea meds if they don't feel well, so it can avoid extra vomiting.

6) Arrange for childcare for your other littles. This means of course during your stay in the hospital but also after when you are at home.  You have to give your sick child constant attention and running to the bathroom when they get sick is hard when you are also taking care of a smaller child who doesn't quite understand.

7) Stock up on fudgesicles, popsicles, vanilla ice cream (and chocolate/ strawberry) but watch out for extras in ice cream since nuts and chunks are not allowed post surgery.  Buy Pedialyte popsicles to help with dehydration too. Also, buy lots of juices that you will probably use as chasers too. Just be careful with citrus based juices as they can burn their throats more.  Buy yogurt cups, pudding cups, jello, soups, mashed potatoes, soft macaroni and cheese, bananas, and stuff to make smoothies.  They will be eating this food for at least 2-3 weeks.  My child has basically been on a sugar diet from the first day. When she feels better she will be detoxing off all the sugar she's had, but it's better to get her to eat whatever she can.

8)  Stay on top of the pain meds! As much as they don't like them, we were giving them every 4 hours as prescribed. Because once it wears off, they cry and then won't be able to eat. The best schedule is to feed them a bite of food, then give the pain meds, then wait 30 minutes and then feed them a meal. That way their throats won't hurt as bad once the pain medication kicks in, but they need a little bit of food in their tummies so the meds don't make them nauseous.  I was also waking her up to take them in the middle of the night. I found if we went over 6 hours without them, she would wake up screaming in pain :(

9)  Have them fill up on fluids as much as you can! It is the main reason our child had a fever, so fill them up before bedtime too so the fever doesn't spike in the middle of the night.

10) Give them chloraseptic if they can tolerate it. Mine adamantly refused to open her mouth for it- if she only knew the relief it could give!  And the bad breath, be prepared.  Some adults describe the pain as like swallowing a box of tacks!  Hopefully it's not that bad for young kids :(

11) Prepare to take time off of work if you are a working parent. I doubt that a school or daycare would stay on top of the pain meds that are needed, plus there is no way I would be able to send my child to school or daycare until MAYBE today, day 14.  She has just been too lethargic and cranky to go anywhere.  This is why summer is the best time to get it done, or over the holidays. But be prepared as some doctors take time off around Christmas, so they may not be available to do surgery.

12) Stock up on lots of DVD's and movies!

And I have to thank all of my family and friends that delivered or stopped by with get well gifts, meals and extra hugs for my little girl.  I didn't have my first surgery until last year! So watching your barely 5 year old go through this was the hardest thing, but so glad for all the support!