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Wednesday, July 13, 2016

My Adult Tonsillectomy Story




Post Surgery as soon as I arrived home.

For anyone who really knows me, I have always been completely terrified of surgery.  So when I went to an ENT and he said I needed a tonsillectomy I was not very happy.  I found out in either January or February and I couldn't make my appointment till the end of June because that's when my husband could get off work to help out.  I wrote this so I could hopefully help someone going through the same thing.  Without further ado, here goes.

Week Before Surgery:
This is when I started purchasing everything I had seen online that might be helpful.  I also started setting up an area on the main floor where I could be inclined for sleeping and have everything at my finger tips.  At the bottom of this post I will have a list of items that I personally found helpful for my recovery.  I also have food allergies and tried to stay away from them as much as possible.  So my food options may seem different than many online.

Two Days Before Surgery:
I read online it would be a good idea to pre-fill any prescriptions needed for post operation.  So, I called the doctors office and asked them if I could do that.  They had me come in and pick up my prescription - Hycet (liquid Vicodin).  Little did I know it was almost impossible to get this anywhere without a 3-4 day wait.  Thankfully I remembered them saying most people get their prescription filled at the hospital.  So, I went to the hospital's pharmacy and got it filled there.

Day of Surgery:
I was and still am completely in awe of how God kept me calm not only the day of surgery but the weeks and months that led up to it.  I have truly experience "the peace that passes all understanding". My husband and daughter took me to the surgery center where my procedure would be done.  The wait was fairly short. They put in an iv port (tried once to no avail so they had to move up my arm) and not too longer after that administered some anti-anxiety meds - standard procedure.  I was shocked at how quickly they kicked in.  My friend Angela  was so right.  After they put that in I didn't care what was going on around me.  I vaguely remember getting wheeled into the operating room at that point and then a nurse adding something to my iv and I got incredibly tired.  Before I knew it I was in the recovery room with a nurse asking if I wanted my family in the room yet.  I told her no because I was having a hard time waking up.  Not too long after my husband and daughter came in.  I was in no pain what-so-ever, just very tired.  We arrived home and I immediately went to my recovery area, laid down and before too long was out like a light.  I slept several hours.  When I awoke, I took my meds.    At this point my writing is very to the point, not at all story like.  This is what I journaled during the actual recovery process.


Day 1:
Hard time waking up after I arrived home from the surgery center.  
Ate - scrambled eggs twice, mushy quinoa noodles with butter and coconut milk ice cream. 
Burning from liquid Vicodin.  Chase quickly with ice water.
Drank iced water, apple juice and bodyarmour almost every hour.
Tired a lot.
Uvula is huge and sides of tongue are numb.
Cried like a baby at one point for no reason.  I'm guessing it was my body ridding itself of anesthesia.  My body takes a long time to get thugs out of my system.
Humidifier on at night.

Day 2:
Throat started feeling scratchy so I'm doing 10ml every 5 hours instead of every 6.  Directions said 10-15ml every 4-6 hours.  I'm starting slow and going up as needed.  No pain really.  Uvula is still absolutely massive.  
Breakfast was scrambled eggs and oat bran with honey and butter.  The oat bran got stuck on the scabs, bad idea.  I had a few bits of burger and some mushy quinoa noodles with butter for lunch.  Later I made an icy with frozen Bodyarmour Popsicles microwaved for 30 seconds and blended it withaloe Vera juice.  Later I had some some coconut milk ice cream.  So far that tastes and feels the best on my throat.  Dinner was a homemade puréed potato soup cooled to room temp.  So good!
Very tired because I didn't sleep much last night from waking every hour to drink iced drinks.  I also iced my neck last night and this afternoon.
I feel like I'm sailing through it but I'm just waiting for these scabs to slough off and be in agony...
I walked around a few times today and hubby took me for a ride to Starbucks and I got an ice water.  He thought id need to get out for a bit.

Day 3:
Ear pressure today.  Not bad just noticeable.
Fatigue is off the charts.
I have had the same foods with the addition of a cheese sandwich, microwaved, then cooled.  I also have added a banana, raw honey, avocado, protein powder and ice water smoothie.  
The throat pain is slowly but steadily increasing.  I'm still keeping my meds at 10ml every 5 hours.  I notice as the scabs grow more and more, my ears hurt more.  Not awful, just noticeable.  
I took a shower today and it felt good but wore me out quick.  
Brushing my teeth and tongue 2-3 times per day.
Finally realized apple juice gave me awful gas.
My son got home from camp today and is determined to not leave my side in the evenings.  

Day 4:
I slept in 4 hour increments last night which was nice.  
Ears hurt more this morning as does my throat but it's not unbearable.  
Again, crazy fatigue!  I find after I take Hycet I'm terribly tired until I get about 45 minutes from taking my next dose.  Then I'm awake for a bit as well as coherent.  Tv watching the last few days along with reading has been few and far between because I just fall asleep.
Still pushing fluids, but not as much as before.  I'm trying to up it today.
Tried white grape juice today and it burned.
I added French toast and tuna with just mayo on white.
Pain meds run out an hour before

Day 5:
Woke up just before 4:00am in pain that brought me to tears, some scabs fell off.  Also, awful nausea From my period - worse period day.  Went upstairs crying to Matt.  If this is what's to come the next 5-8 days I might lose it.
Meds wear out 1 1/2 hours before my next 5 hour stretch but I don't want to up them.  
I added a bit of very moist chicken and well mashed sweet potatoes to my food list.
My ears are hurting consecutively worse daily and today headaches started as well.
When the meds kick in it helps a lot but doesn't take away all the pain anymore.

Day 6:
Accidentally slept through taking my meds this morning by 1 1/2 hours and felt pretty bad when I woke up.  It's 11:53 and still not great.
The rice sock helps a lot for ear pain.  Ear pain is not good.  I look pretty funny when I use the sock for ears and ice packs on my throat at the same time.
Still resting a lot and shocking haven't gotten through the Gilmore Girls yet.  Caution, crying makes my throat feel awful!  Thanks Lorelei and Luke.
I've cried several times today from pain and emotions.  Only I should be half way through by now.


Day 7:
Last night I couldn't breathe because of phlegm build up and stuff stuck in my throat.  Bad idea eating cheese and eating two bites of soft serve ice cream.
Tried to eat oatmeal...too painful.
I've had a few scrambled eggs and am now eating coconut milk ice cream at 12:30.
Pushing more water again.
Little bit of blood tinged mucous today.  Matt was so kind knowing I can be paranoid.  He talked me down from a freak out.  
Worse head/ear pain.  Eating 1/2 hour after meds helps.

Day 8:
Woke up at 2:45am, 15 minutes away from taking my next 5 hour stretch of Hycet to be met with so much pain I almost passed out.  It was after I had spit out what was in my throat.  Whether it was phlegm build up for scab I don't know.  I downed the Hycet as fast as I could chased by some ice water and stood there shaking/jaw trembling for minutes till the pain meds kicked in.  Sick to my stomach and still in shock at the amount of pain now 45 minutes later while holding an ice pack to my throat.  I really hope this eases up by day 10-12.  Now, to make sure to adequately hydrate.  
Today I went back to a more soft and liquid diet.  Pain is def from scabs falling off.  It's a burning kind of pain and even cold water hurts.  A huge scab came off this afternoon and this evening I noticed a tiny blood clot and a bit of bleeding where it was.  I called the doctor and he said as long as it quits bleeding after applying ice water it should be okay.  Much more rest, no drama and more hydrating tomorrow.  My brother was mean which led to me sobbing hard for 15 minutes, kids were difficult and I did some light housework today.  I need to avoid all that tomorrow.

Day 9:
The pain is to the point where while I'm still doing 10ml of Hycet, I've now bumped it between 4&5 hours depending on how I feel.  The pain for me now can be described as burning.  Anywhere the scab has come off burns when the pain meds wear off or when anything touches it.  I find myself holding my saliva in and swallowing less.  It's takes a conscious effort to swallow.
I wasn't able to eat anything till about 7pm.  Everything else was a liquid or soup with protein powder.   I haven't really talked much today from pain and not wanting to encourage another blood clot. I tried to drink 12 ounces of water every 1 1/2 hours.  I fell short 12 ounces overall.
I need to make sure to open the blinds tomorrow because it feels like days a blurring together since I'm not getting outside or opening curtains.  Very bad for my emotional health.
I have my appointment Wednesday - 5 days from now.  Lord willing I'll be able to eat more normally by then.

Day 10: 
Not much different from day 9. 
Had a bit of blood in mucus again several times today but I've been keeping up with cold pureed lentil soup, ice water and coconut milk ice cream.  Oh, for breakfast I had a pancake and scrambled eggs.
I got up for 15 minutes to help the kids and was dizzy, nauseous and exhausted.  I think building up my energy may take awhile.  
I'm finding my tongue is constantly tingly and has been since surgery.  I also have headaches now which I didn't before.  I also feel like and saw something that to me looked like a mini tonsil on my left side in my mouth just under my tongue.  It's weird but I figure the doctor I go and see Wednesday will tell me what it is.  
This evening I got to 6 hours and no major pain, just a bit.  I'm going with the low dosage of 10ml I've stayed with and setting my alarm for 6 hours and see how that goes.  If I'm not in any pain at all I'll wait longer between.  
Still spitting out lots of mucous.  It's actually good to have a foam cup to spit saliva into.  Nasty, but I go through a lot less Kleenex this way.


Day 11 and 12:
I've turned the corner, although I do have bloody saliva on and off.  Just a bit here and there from different spots.  When that happens I immediately drink ice water and hold it in the area that's bleeding.  So far the bleeding has always stopped.
My uvula swelling is finally starting to ease up some and the tingling in my tongue while still there isn't as severe.
I'm still very fatigued but am able to do small tasks a few times per day.
I have my voice back but am using it sparingly.  I find when I talk to much I'm in pain.


Days 13 and 14:

I slowly have more and more energy.  On day 13 I was able to prepare very simple meals for my children for breakfast and lunch as well as make a simple blueberry crumble bar for my husband.  We missed celebrating our anniversary because of my recovery and I wanted to do something special for him.  I didn't care much before about not getting out of the house but now that I'm taking less Hycet and I'm more aware as well as feeling better (slowly) I'm itching to go do some grocery shopping to get out of the house.  I realized yesterday that I'm getting some feeling back in my tongue but the edges are still tingly.   I don't have much taste at all.  My diet is still very bland and easy.  For breakfast today I had steel cut oatmeal with some whey protein powder added, chopped banana and a bit of maple syrup.  I still have this place on the left side of my throat that feels swollen on and off almost like a mini tonsil - that's what it feels like at least.  I'm curious to see what the ENT says today.  I'm still trying to drink plenty of water and liquids.  I haven't strayed from white grape juice, water or BodyArmour drinks.  For me, I've wanted cold food and liquids the entire time.  In total I believe I lost 8 pounds.  I still ice my neck on and off if I've talked to much, or I feel swelling.  I had my follow up appointment today and the doctor said I'm healing well but I still need to be down and rest a lot for at least another week and eat soft foods until I don't see anymore white (scabs) in the back of my throat.  It could be 1-2 more weeks.  I'll be honest, once I got home and let that sink in I started getting depressed.  The possibility of one full month taken away from my summer and from my kids because I can't do anything is pretty much a bummer.  But in all reality, my energy levels are so low anyway that I know I need to rest.  I also started having a metallic taste in my mouth the last several days.  Very gross!  I pray it goes away eventually.  I'm very, very slowly getting some taste back.  The other thing I've found is that I think I may even have a more sensitive nose after this which is crazy because it was already sensitive before.  I stopped taking my pain meds on day 14 and am using tylenol instead.  The pain is pretty much not noticeable.
  • Get help!  The first two weeks you will probably be on pain meds.  Even after you no longer need them, you will find you are incredibly weak.  Plan on the pain lasting about two weeks and building yourself back up at least another week.  See if people can bring you evening meals for two weeks, have someone else clean, do your laundry, run errands, etc... and do as little as possible.  You want to heal as quickly as possible without hemorrhaging.
  • Have a long tv series to watch.  I started Gilmore Girls and it lasted pretty much my whole recovery time.  I found I couldn't read much while on pain meds so watching something light hearted was perfect.
  • Have lots of kleenex or something to spit in.  There will be a lot of mucous.  Very gently get it out.
  • Drink every hour the first couple days.  After that I drank every hour during the daytime and every few hours at night so I could get much needed sleep.  Having iced beverages helps the pain tremendously.  
  • Eat!!!  Whether that is smoothie form or real food, your body needs very nutritious food to be on the mend.  
  • Eat 1/2 hour after taking pain meds.  That's when you'll feel your best.
  • Make sure to set a timer to take your pain meds on time.  
  • Try to keep up with hygiene.  Shower and brush teeth daily if possible.  The teeth I tried to do at least 3 times per day.  There's a lot collecting back in your throat so staying clean helps.  Just be very careful when brushing your teeth and do not gargle. Just gently let the water move around while tilting your head and let it fall out of your mouth.  This is to prevent scabs from coming off earlier than they should and causing excessive bleeding.
  • Your uvula may be very swollen for 2 weeks.  Mine was huge and didn't start getting smaller till the end of the two weeks.  It's still swollen but not act bad.  Sleep inclined.  My life saver was my recliner.  I just had it go down a bit so I was still very propped up.  I tried to lie down once and I couldn't breathe out.  That's kind of nerve wracking.
  • Ear pain for some set in right away but for me it was days later and it was probably just as bad as the throat pain if not worse.  Thankfully pain meds helped me a lot with that.  There were a couple days I iced them.
  • If you think you'll run out of pain meds over a weekend, call your doctor and ask for more.  You don't want to be stuck running out of pain meds and not able to get them because it's a weekend.
  • Have a mirror and flashlight on hand for those times you think you may taste blood.  It's good to see if it's blood or mucus and see where it's coming from.  You can also see how your throat is progressing. You can find pictures of throats post tonsillectomy and what it's supposed to look like - it's not pretty.
  • Keep a positive attitude and realize while it may stink now, it doesn't last forever.  
  • Don't over do it physically.  For the first week or more I was strictly in bed and going to the bathroom to urinate or shower.  When you do start feeling better start out really slow.  Walk around for a bit, sit up outside for fresh air, etc.. When you feel fatigued, go lie back down.  
  • Use a sharpie marker to label bottles of water for the times they should be drank.  That way it's easier to make sure to keep hydrated.
  • Inflatable Travel Pillow - this helps hold on two ice packs at once which is very helpful.
  • Cool Air Humidifier -  to help keep your scabs moist while sleeping.
  • Hand Bell - this helps notify others that you need help when you're not able to speak.
  • Ice Packs - to help with pain and swelling.
  • Foam Cups - they don't sweat and they keep ice colder much longer.
  • Large Stuffed Animal - not only does it help to have something to hug while you're in pain, it helps keep your head propped up to sleep.
  • Hard Plastic Basket - to keep your meds, flashlight, remotes, pens, etc.. in.  This material is best because with it being by the humidifier, it won't get moldy.
  • Aloe Vera Juice - this will help with the pain and healing.
  • Lots of bottled water and a sharpie to label what times you need to start another bottle.  8 ounces every hour is what you want to shoot for.  Make sure to have it iced.  It helps a lot with pain when you stay hydrated.
  • Chicken Broth - This can be used in place of milk when making mashed potatoes, used as a base for soups that you can puree, etc... It adds nutrients to the small amount of food you'll be eating.
  • Frozen Bananas - I used these in smoothies, as "ice cream' and more.  Peel bananas and break in half, then put into a freezer bag and freeze.
  • Hydration Drinks - I purchased BodyArmour because I'm not allergic to the ingredients in it.  In addition to drinking it, I also made several into popsicles.  I'd take 2 popsicles out, microwave them for 30 seconds.  I'd then put them in a blender with some aloe juice and make a homemade slushy.
  • Eggs have been a staple.  I've had them scrambled and hard boiled made into an egg salad with only Just Mayo.  It's so important to get good sources of protein while recovering.
  • Applesauce - I found at first it was easier to eat the baby food applesauce then graduate up to regular.
  • Whey Protein Powder - This can be added to soups, oatmeal, smoothies, etc...to give it that protein you will need.
  • Avocado - I used these in smoothies.  It's important to have good fat while recovering as well.
  • Sonic Ice (or other pebble ice) - I can't stress this enough.  This ice was the best for recovery because it's easy to chew.  I went through several bags.
  • Sweet Potatoes - I made mine in the crockpot with a bit of water then skinned and refrigerated them.  They are great to eat plain, make into a soup or make into 2-Ingredient Sweet Potato Pancakes.  They are highly nutritious.
  • Quinoa and Rice Noodles from Trader Joes - It takes a bit longer to make these super mushy but my husband got it down to a science.  Add a bit of butter.
  • So Delicious Coconut Milk Vanilla Bean Ice Cream - Dairy is a huge no-no.  It causes even more mucous build up and that in turn caused me to not be able to breathe well at one point when I had just two bites of soft serve ice cream.  




Day 16:
I have awful chills, cold sweats last night, nausea (I think I might vomit), low grade fever,  headache, diarrhea...I just feel awful.  I called my ENT to see if it was from the meds and he said pain meds can cause "stomach distress" but I probably had a virus.  I called the pharmacy to see what they thought and they said it absolutely could be from stopping my pain meds cold turkey.  She suggested I take 5ml of my pain medication and if I feel better, that's what was causing the symptoms.  Sure enough the pharmacist was right.  After looking online, this is the schedule I'm using to wean myself off of my pain meds from where they were before.  Here's to hoping my body adjusts ok.


Hycet Withdrawal Tapering Guide.
Days 17 and 18:
Take 5ml every 7 hours.

Day 19 and 20:
Take 5ml every 9 hours.

Day 21 and 22:
Take 2.5 ml every 9 hours

Day 23 and 24:
take 2.5 ml every 11 hours.

Day 25 and 26:
Take once per day.


Day 22:
I woke up at 1:00am this morning with awful diarrhea.  It's happened 5 times in the last 8 hours.   I'm not sure if it's food poisoning from eating out yesterday, from the ice cream I had last night since I haven't had dairy since the surgery, or if it's from weaning off the pain meds.  Either way it stinks - no pun intended.  lol.  Other than this, the weaning has been going pretty well.  I only had a slight headache and sweats one other night.  I'm so thankful. Here's to hoping the rest is cake from here.  As far as my throat, it still feels full and if I talk a lot my throat swells and my jaw hurts.  My family says my voice is sounding more normal, just like I have a full throat.  There is still a little bit of white scab on my throat but it's almost gone.  I'm still eating soft foods for the most part and drinking as much cold water as I can. I think it helps with the swelling.  I have yet to have a hot cup of tea, hot food or exercise.  However I have gotten out with all 4 kids doing some grocery shopping and taking 3 of them to the park.  My energy up until the diarrhea early this morning has been coming back slowly but steadily.  Oh, I almost forgot to mention, my uvula is almost back to it's normal size.  I still have a very slight tingling in my tongue that I don't notice unless I think of it.  The metallic taste is gone and almost all my taste is back.  I also don't have to spit phlegm in a cup more than 3 or 4 times per day.  Before I had to several times an hour.

Day 32:
I'm still having swelling issues making it hard to swallow and difficult to say certain words.  The sore throat is on and off.  I am off my pain meds which makes me so happy!  I'm still trying to build up energy.  Sure enough my doctor cut off the soft palette on my left side.  That is something I plan on talking to him about when I go in Tuesday to figure out why I still have swelling and a hard time breathing on and off.


Day 34:
I went to another ENT appointment today because I still have lots of swelling and pain on and off. He said the surgical area looks good and will continue to tighten over time (still a few more months). He used a fun little scope to go through my nose and look at my throat and said my "secondary tonsils" looked swollen. They are in the throat under the tongue. I am now on an antibiotic, and steroid which will be followed up by an antiungal. 


8 1/2 months Post Op:
Well, I'm 8 1/2 months out and my soft palate just started moving up more last month.  It's still not where it needs to be but I trust in time it will be.  It's taken so long but it's slowly working it's way back up.  I'm very, very glad I had this surgery!  


Here are some tips you may find helpful.






Here is the list of things I purchased that helped me.  You can also visit my Surviving  an Adult Tonsillectomy board on pinterest.

Post Tonsillectomy Recovery List:






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