Tuesday, November 19, 2013

PSA: Coping with a Child Tonsillectomy

There is never a good time to talk about your child having to undergo surgery.  It just down right stinks and it's super scary.  Our little guy, lovingly called #2 on this blog, has had four surgeries in his first 4 years of life.  It never got any easier and I hated every minute of it but it clearly improved the quality of his life, so we went for it. 

Today, I'll speak about the third surgery that he had when he was 3 - the tonsillectomy.  I'm hoping that I can prepare you for what is coming and how to deal with the situation.  Please note however that I am not a medical professional.  You should talk to your Ear, Nose, and Throat physician (ENT) and primary care physician (PCP) about any outstanding questions or issues that you may have prior to the surgery.

#2's story goes like this.  He had chronic ear infections as an infant (starting at 4 months) most likely due to the horrid reflux he endured and being in a daycare center where he picked up many viruses and infections.  By the time he was 8 months old, he had complete hearing loss therefore his first surgery was to put in ear tubes.  This helped tremendously with his hearing- yahoo!  But it had already impacted his development (another post on this coming in the new year - I promise!).  We were doing pretty well, but he continued to have chronic sinus infections through the spring so we went to a children's ENT who recommended having his adenoids removed at 15 months but not the tonsils as tonsillectomies are very difficult on small children due to the possibility of blood draining down their throat and at this age they do not have the cognitive skills to deal with it.  Bleh.  That sounds gross, dangerous, and we were not that desperate so we did not push it.  Honestly, things went pretty well too for most of the next year and a half.  Yes he was sick, but it wasn't anything super detrimental or chronic. 

After #2 turned three years old, we planned our first family trip - on an airplane!! - to Las Vegas for my sister-in-law's wedding.  We were all so excited about it.  The day before we were to leave, #2 started acting a little strange and vomited at dinner.  Hmmm, interesting.  But he seemed fine so we got up early the next day and headed out.  I brought snacks for breakfast and he refused to eat anything except a $7 cheese stick I purchased at a snack stand.  Ok, this was not good but he still seemed pretty ok.  We flew to Vegas with no issues.  Another red flag was when we were enroute to the SIL's house and #2 fell asleep in the car.  He never.ever.ever. falls asleep in the car.  I said to my husband, "this is either a miracle, or he is sick."

He tossed and turned all night and snored like a freight train but we were used to that - he's always snored his entire life - even as an infant.  He woke up with completely crusted closed shut eyes - so immediately, I was relieved, thank god - it's just pink eye.  After we finally found a Dr. that would take children (Vegas - you are very scary in this respect), we found out that he had either strep or tonsillitis as well and the Dr. wouldn't even take a throat culture because he said, "those things are HUGE!"  Once he was on meds, he started to get better and was on the mend. Thankfully his ENT check up was scheduled for when we got back, so there wasn't much else we could do, so we hit the strip like any normal parents with children in Vegas would do.  The rest of our vacation was great!

Fast forward to this ENT appointment after we get back.  I'm not sure what I was expecting but the minute he looked in #2's mouth and exclaimed, "WHOA!" I knew that we were in for it.  Yes, he confirmed that he needed to get his tonsils out.  They were very large and most likely was impacting his sleep, mood, and overall health.  Great.  Here we go!

Thankfully we were able to schedule the procedure to take place in just two weeks.  I was so thankful for this and that's when I started combing the internet and asking people I knew who had kids that had gone through this before for advice.  What do we do? how do we handle this? I will try to outline the best I can how in order to help you manage through this so it is the least disruptive to your family - again remember I am not a medical professional so please run all suggestions by your ENT or PCP.

Scheduling The Procedure
  • Make sure to schedule your procedure as early in the morning as you can.  They are not allowed to eat or drink beforehand so you will not want to have them starving all day and begging for food before the surgery. This will just amplify the stress for everyone.
  • Ensure the surgery scheduler gives you all the Pre-Operative (pre-op) information and the pre op form for your PCP to fill out.
  • If you are working parents, schedule the surgery for a Friday.  This way you'll have all day Friday and the weekend to recover.  This will minimize your time off from work.
  • Also note, if your child is under 5 years old, they will ask you to prepare for an overnight stay due the young age of the patient.
Prior To The Procedure
  • Schedule and go to your pre-op appointment.  There are different guidelines for each procedure and hospital so please follow the instructions that you got when you scheduled the surgery (the surgery scheduler should give this to you).  Also do not worry about getting into your PCP for this.  They save appointments just for this, so you can get this accomplished during the time allowed.  DO NOT SKIP THIS STEP.  If you do, most likely they will not allow the procedure to take place.
  • Pre-register with the hospital. This is painless and super easy. Our hospital called us and it took all of 5 minutes.  This means you do not have to go through all of this when you get there which saves time for you.
  • Do your research.  Google the procedure, jot down the questions you have for the ENT and do not be shy about it.  This is your child and you need to be aware of everything that is a possibility from after care to pharmaceuticals that they can have post surgery including dosage and options for break through pain.
  • Schedule care for other children for the night before and/or afterwards the procedure.  #1 stayed overnight the night before the procedure at a friends house and they took her to daycare for us since their child attended the same one.  This was a huge stress relief for us.  You need to put all of your attention into the child who is having the surgery and you do not want to wake up other kids to leave at the crack of dawn if you don't have to.
  • Back an overnight bag.  As noted above we were told that since #2 was under the age of 5 that we should expect to stay the night due the seriousness of the surgery and his young age.  Make sure to include their favorite blankee or stuffed animal. This always helps with cuddling afterwards.
  • Make it fun!  We let #2 pick out new slippers and jammies that he could wear.  We also purchased an after surgery toy for him to keep him happy and busy while we stayed at the hospital.
  • Bring toys and activities.  You do not want to have a bored kid in the hospital so make sure to pack an activity bag for those long hospital hours.
  • Keep the child hydrated up until the liquid cut off time.  They always say that staying hydrated is the best medicine for speedy recoveries and I believe 'em!
  • Bring snacks and stuff for yourself.  Unless you want to eat hospital food or junk from the vending machine this is a good idea to keep you going.
  • Bring books, magazines or other things to keep yourself occupied.  This surgery is not long but the last thing you want to do is to just sit there worrying.  This will also help fill time afterwards as well.
  • Bring food your know your kid will like. I made sure to bring apple juice and other beverages that I knew #2 preferred just in case.  We did not need to use it but we were prepared.
  • Bring all medicine or other items you need to generally care for your child.  Most likely the hospital will not have them if you need specialty items.
  • Follow all pre-op instructions regarding medications that the child should not have before hand and food/liquid intake.
  • Set up child's room with post op items (see below).  This may have to take place if you are super busy with multiple children or doing this on your own.  You'll want to make sure you are available for your child when you get home instead of setting up his/her room.
  • Ensure you have the "ok" post op foods in your home like juice, popsicles, Jell-O, etc... This should have been sent home with your pre-op information.  You'll want to be prepared for when you all come home from the hospital.
  • Let your child go in their jammies and put in a movie on the way there if you have this capability.  This was the least disruptive for us and kept #2 calm for the ride into the hospital.
At The Procedure
  • Make sure to arrive on time so you can check in smoothly.  This should only take a few minutes since you pre-registered.
  • Have your questions ready for the surgeon/ENT.  They should come out and meet with you prior to the surgery - ours answered every single question we had and didn't bat an eyelash at our long list.
  • Here is when you get to ask about post operative medication.  Make sure you talk about what kind of pain medication the ENT will prescribe and the dosing.  Ask about the maximum dosing and the minimum dosing.  Ask about how long they should be on the max dose of meds and if you can supplement with anything if there is break through pain.  Do not be shy!  This is your child and the number 1 rule post op is staying ahead of the pain.  Once you get behind it, it will be a nightmare for everyone.
  • Also ask about any side effects to the pain medications.  Some are constipating so you might need to use a stool softener - make sure you run all of this by your ENT before giving anything to your child.
  • Help your child through any questions that may come up.  We had someone come in and ask #2 what flavor of sleeping medicine he wanted.  This was pretty exciting for him.  Make sure to help answer any questions that any of the staff had.  We had great nurses so it was easy for us.
  • Prepare to meet with the anesthesiologist.  The anesthesiologist that will be working with your child should come into the room before hand and meet with you.  They will ask you questions about your child's history with going under and/or any family history with it.  Again we had a great anesthesiologist who answered all of our questions and kept us at ease for the procedure.
  • Ask if you can be brought back to see your child through the meds to put him to sleep.  This was SUPER hard for me. I just could not do it without crying or being upset, so my husband went.  Thank God he was of the right mind to go hold him and kiss him as they put him under - it is important that they know everything is going to be ok.  If you are going to cry or freak out then this is not the job for you.  You want your child to remain calm and peaceful during this time.
  • Ask if you can be in the room post op room when they are waking up.  Our hospital generally did not allow this, however #2 started asking me for this so I was allowed to go back.  Once I knew everything was ok, I had no issues rushing to his side and cuddling him!!

Post Procedure
  • After the surgery, the ENT/surgeon will come out and talk to you about how it went.  Make sure you ask him/her any outstanding questions that you missed before and talk about when you need to make the next appoint for a check up. They should also tell you the number to call if you should have any issues after you bring your child home.  They want to help so make sure to get all of this information.
  • Ask what it will take to be discharged.  The ENT/surgeon does not wait around but they do leave instructions on the minimum criteria the patient must meet before your child can be discharged.  We had to drink so much and be eating - which #2 did both of these items the same day and we got to go home!!!
  • Ensure that your child is getting the full amount of pain meds at the shortest interval that the ENT/surgeon will allow.  The number rule to a child tonsillectomy is staying ahead of the pain!
  • Fill the pain medication and any other prescriptions before you leave the hospital.  This is super important as you do not want to waste time with your local pharmacy that we all know takes five hours to fill an aspirin.  Each hospital should have a pharmacy on site that you can fill your prescriptions.
  • Be prepared for lots of cuddling and TV time.  I don't know why but being in the hospital slows time down to a crawl.  I do not understand this phenomenon.  But it's a great time to spend some 1:1 time with the patient before having to go home to other kids and responsibilities.
  • Once you are discharged, plan to go directly home.  Make sure you have the discharge instructions and have everything on hand to keep your child hydrated.
  • Before you leave, make sure you note the last time that your child received their pain medication in your log (a small notebook or sheets of paper - just have something to write it all down in).    The number rule to a child tonsillectomy is staying ahead of the pain!
Being Comfortable At Home
  • Once you are home ensure that you have a pain medication log (see above before leaving the hospital).  I kept a small notebook with the last time that #2 received pain meds in the hospital and then wrote down the next time that he was due to receive meds.  This again was the maximum dosage at the earliest time available.   The number rule to a child tonsillectomy is staying ahead of the pain! DO NOT MISS A DOSE!
  •  Keep the log on hand at all times and ensure all adults caring for your child know about it.  It is essential to keep ahead of the pain and by now I sound like a broken record but if you do not do this, your child's recovery will be very painful.
  • In order to keep on track with the meds, set up your child's room so that you can sleep with them. Since #2 was so small, I wanted to make sure that I was with him for the first few nights of sleep to ensure he didn't have any issues. I set up an air mattress in his room for me along with an alarm clock that I would set for his next medication dosage.  Yes, this will seem like you have an infant again, but believe me - You want to keep ahead of the pain!
  • Keep the sleeping room moist.  Set up a cool air humidifier in your child's room to ensure that his passages and throat remain moist and hydrated.
  • Pack a cooler with beverages for middle of the night sipping.  Every time I woke #2 up for his pain meds, I also made him drink some cool water or juice to ensure that his throat was staying super moist.
  • Push the liquids during the day - again keep the throat as moist as possible.
  • Note that your child will have super bad breath.  This is from the cauterization of the wound.  It is gross and will not be pleasant. Keeping it moist helps - believe me.
  • If your child is feeling up to it, let them have soft solid foods like ice cream, Jell-O, and puddings.  Also, feel free to let them have Popsicles, fudgsicles, etc...
  • If they are feeling really well (this means you are doing a great job staying ahead of the pain - good job!), then you may want to try some soft but more solid foods like scrambled eggs, watermelon and possibly other fruits like peeled grapes, over cooked mac-n-cheese (which sounds gross but it's super soft), room temp oatmeal, room temp cream of wheat.  Make sure the food is room temp or cooler.  You do not want to burn or aggravate that healing throat.
  • Play it by ear for when to introduce other foods.  We did such a good job with the pain control that #2 was demanding regular food by day 3.  We took it easy and introduced some 'new' foods (cut up lunch meat, more fruits and soft veggies) but he wasn't eating anything crunchy  or foods that could scrape his throat (toast, chips, cold cereals, etc..) until at least day 5. We only offered it in small amounts to see how he would do with it.  Just remember, to take it slow.
  • Plan on being super low key and staying around home for the first 3-4 days of recovery.  This will ensure a controlled environment that you can keep moist, you'll have the pain meds and log handy as well as beverages and foods that your child can eat.
Other Recovery Items
  • Determine when to send your child back to daycare.  We had our surgery on a Monday so we stayed home the entire week, but honestly, he was probably ready to go back by day 4 or so.  He was doing so great because we stayed ahead of the pain and frankly he was getting bored with us. As long as your daycare is on board with giving the pain meds as directed by you and can offer the types of foods the your child is up to eating, then it should be fine to go back.
  • Weaning off pain meds is an important topic and something you may want to discuss with your ENT/surgeon or PCP.  We gave #2 the full dosage of pain meds for quite some time and after 4-5 days we started spreading the dosages out to see what would happen and if he could tolerate it. Again this is where your pain med log will come in very handy.  This will also allow life to get back to normal, which will help with everyone's mood!
  • We were weaned off pain meds completely by the end of the second week - I think it was around day 12 or 13 but every child will be different, so  you need to assess your situation.
  • If you do not keep ahead of the pain you're going to have to use the additional medications for break out pain.  Make sure you add this to your pain med log just like everything else. 
  • Unfortunately if you do not stay ahead of the pain your child most likely will not want to eat or drink which will not keep the throat moist and it may also cause constipation.
This was a lot of information and honestly, take it all with a grain of salt because I tend to go super overboard on this type of stuff but there was no way that I wanted to see my baby in pain. I had heard horror stories from friends and read a few on the Internet too.  That was sooooo not going to happen on my watch.  If I leave you with anything from this entire blog post it should be this:

Keep it moist and stay ahead of the pain!!!

Until next time...
J.K. Sasse

P.S. I will keep this updated as I remember helpful tips!

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