Tips for Parents of the Toddler Tonsillectomy Patient

Similiar to our post about tips for hospitalizations in general this includes more tips that can apply to any hospitalization but is mostly specific to hospital and home care for the tonsillectomy and adenoidectomy patient. Our son was two years old and mostly pre-verbal when he had this done, and he also had a Microlaryngoscopy and bronchoscopy (MLB) procedure done to detect airway abnormalities that can be common in children with Down Sydrome

The way I’ve structured this is longer descriptions up front, so if you want a Quick Tip List, you can scroll down! I liked reading more detailed descriptions when I was trying to see what the process was like for others and how they coped, but they are summarized in the list QUICK TIPS near the bottom of this post.

WAITING/PRE-OP

Playing on his nabi jr In pre op room

Playing on his nabi jr In pre op room

Something I absolutely recommend for children who will be having to stay still and waiting a lot in the hospital or otherwise having a lot of wait time in which you want them to stay put is the Nabi Jr. tablet. Ethan’s grandparents got it for him for his second birthday, and it has been a big help when he had to stay put and wait in the pre-op room as well as post-op when he wasn’t feeling good enough (mostly days later) to do much else. (Also, he needed to stay still in his hospital bed soon after the procedure so he didn’t rip his IV out from bounding around the bed! (day 2) It already comes with flashcards with sounds, games for matching and animal sound recognition, music dozens of books, and puzzles.

POST-OP

First of all, we were told Ethan has Laryngomalacia and Tracheomalacia, but both are mild airway abnormalities that he will outgrow (somewhat common in Down Syndrome, especially boys with Down Syndrome/boys in general, so I hear). I don’t know much about them and didn’t concern myself too much with that at the time because it sounds like he will outgrow it and we can’t do anything about them anyways. It sounds as though they may be playing a role in him aspirating on thin liquids and therefore needing thickened liquids.

The procedures took no more than 45 minutes to my recollection, and we were able to go to the recovery room soon after. Ethan woke up very confused and making sounds with his throat. I’ve heard some say their children bled from their nose, but this wasn’t the case with Ethan. He drank a few sips of thickened apple juice then cried from the pain. We were encouraged to keep trying to get Ethan to drink liquids while in the hospital. Many children go home the same day, but his ENT wanted him to stay at least one night. We were crossing our fingers that Ethan wouldn’t get dependent on oxygen as some kids with Down Syndrome can when hospitalized. He did end up requiring a small amount of oxygen once asleep, but it was able to be removed after a few hours and the nurse attempting to wean him off. Something to keep in mind, however, is that you may need to remind the nurse or ask if your child can be weaned off on a trial basis if they are requiring a small amount. My husband is an RN in an adult ICU and he was the one who thought to have me speak up to the nurse about it, although she indicated this was her intention but she hadn’t done so yet. Definitely speak up and be an advocate-sometimes surgical floors can get busy and you may have to bring something up more than once. Normally we have diapers in the room ASAP during hospitalizations, but I had to tell one or two people before we were able to get him some diapers this time, probably because it was a Friday in a post-op floor. (We had a few of our own diapers, but since I knew they would be provided for the overnight stay I planned to use those when our few had run out/the diapers showed up.)

He really does like playing with his flashcards, I'm not that militant! Enjoyed quiet play of taking cards in and out of his backpack.

He really does like playing with his flashcards, I’m not that militant! Enjoyed quiet play of taking cards in and out of his backpack.

Ethan was still tired from the anesthesia but was later quite alert. The next morning, he tried to rip his IV bag off the pole by reaching through the crib bars! It was pretty hard to get him to drink, but he finally drank enough to be allowed to go home. (Again, this was a stipulation that everyone may not have. Do keep in mind, however, that many children have to return to the ER for dehydration because it is quite hard to get kids to stay hydrated when their throats are so sore. (especially young ones you can’t reason with) Ethan’s ENT does not prescribe any pain medications for going home, which is a change from the past practices I have been told. He only ended up getting oxycodone after being admitted to the ER for mild dehydration on day 6.

NIGHT 2
The first night home post-op, Ethan slept a TON. He slept from 7:30pm to 9:30 am the next morning! Then he was so tired that he was only awake two hours before taking a nap from 11:30am to 1:30pm, then he was so exhausted that he had to go to bed around 6pm.

NIGHT 3
The next day, he was lethargic and pretty much laid around wanting to be held and watching copious amounts of Elmo’s World and Mickey Mouse Clubhouse! (Oh yeah, DVDs are also a great gift for the hospitalized and home-bound child!) This evening, he slept a normal amount, following his usual schedule.

Poor thing laid around like this for several days when he wasn't being held and cuddled. Not like him to lie down!

Poor thing laid around like this for several days when he wasn’t being held and cuddled. Not like him to lie down!

NIGHT 4-Ethan woke up crying, even though he was being given round the clock alternating Tylenol and Motrin. He calmed down and accepted a Popscicle made of Thickened Milk after receiving pain medication-Motrin.(For dysphagia-safe Popscicles with Simply Thick beverage thickener–just mix up your liquid and pour into a Popscicle mold (always ask your doctor first-a friend’s doctor told her about this way)-We found a set of molds at Kroger. Ethan enjoyed the Yogurt Popscicle as well. You could make your own pudding Popsciccle as well. He got to watch some Daniel Tiger’s Neighborhood on Netflix to chill out and allow Tylenol to work.

DAY 5-During the day, Ethan was very still and quiet, not his normal self at all. He seemed to find comfort in lying on the floor with his right ear against the floor, whether we were in the kitchen or on carpeted living room. He also wanted to be held all day. This was the case for the first days of recovery, too, but he felt worse on this day. His nose was hurting, which I could tell because he was pushing toys against it and shoving his nose into my shoulder. His breath also got worse, which I believe is due to the scab forming over the incision site (lovely, right?) People were NOT kidding when they warned us of the “foul breath.” It was BAD. I don’t even have a very good sense of smell, but I had to cover my nose with my shirt while rocking him to sleep on this night. Glad he isn’t old enough for that to make him feel self-conscious! On the 5th night, Ethan woke up a lot crying-screaming-and the poor thing had a hard time calming down. It was this night that we finally had suppositories, I think. I highly recommend that because it seems like his throat hurt worse at night. I have read that this is mostly due to the throat getting dried out and it hurting the scab more. It became very difficult to give medications by mouth, and he was hurting so much at this point in the recovery that it was VERY important for him to get ALL of each medication dose on time, every four hours. He had breakthrough pain which we couldn’t do anything about at this point. It was sad. 😦 The pacifier and Daniel Tiger’s Neighborhood show on Netflix is what we had to use for comforting and distraction until the Tylenol took effect. (I don’t usually recommend television to comfort, by the way, but it can be a wonderful distraction when little ones (or at least my little one) is in pain.)

It was extremely challenging to get Ethan to drink anything on the 5th day, even after pain relievers should have taken effect and the drinks were chilled. (We chilled the drinks during the entire recovery.) Unlike some kids, Ethan doesn’t like sugary drinks or snacks at all, so it was mostly “milk or bust” for him during his recovery. I think he drank hardly over 10-16 oz that day, maybe less. I know he only had 8 oz up until bedtime then wouldn’t drink anything the next morning.

DAY 6-Ethan was very lethargic and was starting to get a dry tongue from mild dehydration and still wouldn’t drink anything, even when trying to pour some in with a cup (it worked earlier in the recovery to get him started drinking for one bottle (He is still in the learning process with cup drinking, so it’s mostly bottle drinking we were having to encourage during recovery.) We didn’t have to wait much at atll in the ER because it was early on a weekday, and since he was only mildly dehydrated, he was given a pain medication mixed with Benadryl and Maalox (with equal parts, 2.5 ml and 2.5ml) as a numbing throat rinse. *Although this remedy was helpful to us, we were given instructions from a doctor based on our child, and you should always talk to your child’s doctor about giving medication first. Something to also keep in mind is that most kids are not given anything for pain once at home from what I understand. In the past, our son’s ENT (and other ENTs) would prescribe strong pain medications after tonsillectomies, but that isn’t the case anymore. The only reason we were given a small amount of this pain medication is because we was almost on the verge of needing IV fluids and hospital admission. *The doctor said the throatwash was meant to coat the throat and allow him to feel good enough to drink. A friend had told me about that but I wasn’t sure of dosage and couldn’t see how we would get it down him. We were concerned about Ethan aspirating, too, seeing as he choked down the Motrin we forced down him two nights before. He was surprised enough to accept it from the nurse in the ER, however, and drank nearly 8oz of milk about 20 minutes later. We were given a prescription and went home thinking things would be easier.

In a way, the drinking came easier, but the recovery was not necessarily “easier.” What became the most stressful for everyone involved was giving the numbing throatwash to Ethan. It hurt him and scared him, and he put up a BIG fight each time. It was quite traumatic. When he was better and Ryan and I were watching Harry Potter and the Halfblood Prince movie, I said, “Oh, this is exactly what it was like giving Ethan that medicine” during one of the end scenes where Harry has to make Dumbledore drink from the basin with the seashell when trying to get the Hoarcrux. It’s hard to convince a toddler something that is uncomfortable will make them feel better in the long run! Ethan would calm down after getting the throatwash, though, and would accept his pain reliever better after that (at first, we tried combining but that didn’t go as well so we gave them separately. Seems like the Motrin burned the most from his reactions.) Then SOME of the time we could get Ethan to drink a little afterwards, but it was still rather challenging and he would often put off drinking all day long then finally drink almost an entire bottle just before bed. Poor thing must have been hurting but parched.

Things do get better, but rather than scaring people whose kids will have tonsillectomies, I will just skip ahead and say that the next few days were kind of blur because we were tired and there was lots of screaming and forcing medication going on! The nice thing was that after going to the ER, we could give the pain medicaiton for breakthrough pain between Tylenol and Motrin doses. We always did Tylenol suppositories (never more than what the allowed dosage is for 24 hours, though) at night and encouraged fluids.

BASIC QUICK TIPS FOR TONSILLECTOMIES

1) Plan for a two week recovery. The doctors did tell us this and said “keep child at home two weeks” but didn’t go into detail about how much children wake up in the night (I’ve heard this from other parents too). Which leads to that next tip which is..
2) If possible, have someone trade off night shifts with you so everyone can stay as sane as possible! Another way to stay sane is..
3) Have some good indoor (quiet) activities for everyone because even if you are a stay at home mom like me, not having the few little errands or usual routine to leave the house for can be difficult! We asked my parents to come so we could go on a walk, but poor Ethan had to just be inside, hurting. Even once he felt better we kept him inside just to be sure he didn’t get infected or the heat didn’t make his throat swell. So once feeling better, new or not as often used toys and low-key activities work great!

When he was feeling better, we made a "little and big" folder with big and little animal stickers that we had on hand. One of those things to pass the time and learn! Being cooped up so much, he needed something different to spice things up.

When he was feeling better, we made a “little and big” folder with big and little animal stickers that we had on hand. One of those things to pass the time and learn! Being cooped up so much, he needed something different to spice things up.


4) Keep pain relievers on time…really! Even if asleep. (suppositories!) If your doctor says its okay, the Benadryl/Maalox combo mentioned above (see Day 6 summary) may be enough to help you force some fluids down once your child’s throat is numb!

Once he felt a little better we still had to get playfully creative to let us come near him with a liquids syringe !

Once he felt a little better we still had to get playfully creative to let us come near him with a liquids syringe !


5) Play close attention to fluid intake and numbers of wet diapers or trips to the bathroom as well as condition of mouth. Also pay attention to signs of constipation if your kid doesn’t want to drink juice..not being on the usual diet can mess things up. It did for Ethan.
6) Use toothbrush or other means to remove thick saliva as it makes drinking and swallowing more difficult and painful. It’s also more stinky if it hangs out in your kid’s mouth I’d imagine!

7) If your kid has limited means to tell you what will help him/her feel better, do some research on what hurts and what helps!

Something that helpful that I read from other young tonsillectomy patients (like young teens) was that putting icepacks on ears, jaws, etc. could be helpful. Since kids said chewing gum helped, I let Ethan have his pacifier as much as he wanted to have some relief as well. I often held ice packs to his ears (which I could tell hurt by how he started shoving toys against them later in recovery), prior to giving a bottle. I read that swallowing makes the ears hurt as well. Since my child is mostly pre-verbal (although he signs quite a bit), it was hard to know how much he hurt, where he hurt, etc. and reading older patient’s tips online was very helpful.

8) To help with weight gain during recovery, you could give your child some Boost or Ensure to drink if he/she will accept it.

On the last few days of receovery, Ethan needed less and less pain reliever and we didn’t give it scheduled anymore. At night, however, he still woke up around 1:30am (same time everynight pretty much) crying even though he felt great during daytime it seemed like. We still kept doing Tylenol suppositories scheduled around 1 am for the last few days of recovery once we realized that pattern held true regardless.

Since I am writing this in the end stages of his two-week recovery, I can’t say yet whether I feel like this surgery has helped with sleep apnea (especially since the apnea was mild to begin with), but I haven’t heard him snoring the past night or so! (It’s normal for kids to snore post-op anyways).

I hope this was helpful and that it doesn’t scare anyone out of tonsillectomies…I have heard it can be very helpful for those who need them! It got so bad we wanted to rip our hair out, then it seemed like all of a sudden there was a calm over our home and the “weeping and gnashing of teeth” left.

Our next adventure is bed-training, or removing crib and getting Ethan to eventually stay put while sleeping on a mattress. We will have to move the tall unstable dresser first. Wish us luck! 😉 I’ll probably say a few words about how that went because I like to see others’ experiences myself.

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The Church: Why You Shouldn’t Take it for Granted

church image

I know at this point readers are expecting something about tonsillectomy or Ethan’s recovery, and I will post about that when I have more of an overview, but instead I wanted to share something that has been on my mind and heart more and more over the past 2 years…Before that, though, I’ll rewind a little to give some background.

CHURCH ATTENDANCE, THE EARLY DAYS
I have gone to church my entire life like many good southern girls. 😉 Only for my family it wasn’t just a routine like some may think. My parents raised me to appreciate church and to gain meaning from it. We had devotionals (with actual meaningful discussion) around the supper table and in our beds at night. I went to AWANA as a kid to memorize Bible verses and play. I went to youth group, youth choir, youth camps, you name it. In college I did keep on seeking out Bible studies, ministry to help International students get rides to the special food stores in the city where they could make foods from their countries they missed. Ryan’s upbringing was much the same: His family had him in church, and with a definite purpose behind it. Their family also practiced having a personal relationship with God, and with serving others.

When I was single, I went to a singles group at a church and invited my friend who is now my husband. ( Bonus! ) And when we were married, Ryan and I still stayed true to being involved in church by serving as Sunday school teachers for elementary kids and serving as youth group leaders. Ryan also joined me in doing some child sponsorship advocacy at some Christian events like church and concerts and we had a great time serving God in that way.

LIFE HAPPENS.
Then we moved to another city, and another, and attended church trying to find our niches there. The two churches were connected (multicampus church) and we enjoyed it but due to all the changes in moves and pregnancy, jobs etc., the most we did was try out being youth leaders and when I was (very) pregnant, helped in the children’s ministry.

Then Ethan came a few weeks early. And as many well know about us, it has been a very VERY busy two years! We love that little guy but wow we should have registered for some luggage and soda bottles on our baby registry, we’ve had so many hospital visits! If you are lost read Ethan’s birth story and about his surgeries and sicknesses in posts throughout.
We have changed so much about our lives, like any parents do, but it has included a ton of transitions and complete life changes such as selling our home, moving to another city and renting an apartment eventually. We did that to be close to the children’s hospital in our state and to be close to family while we are in this very busy stage of getting diagnoses, treating, and repairing things to get little Ethan where he needs to be.

WHAT WE SEE MORE CLEARLY BY WHAT WE MISSED ABOUT CHURCH

No, we didn’t stop going to church. We didn’t even stop going to lifegroup. (bi-monthly meetings, sometimes a Bible study or topical group that encourages one another spiritually) But we missed HUGE chunks of church and consistency in a certain church, and consistency in WHEN we could go to church because we were at the hospital, working, or asleep after being up all night at a hospital. I’m not trying to get out my violin and start playing a sad tune for us, but I’m saying how we missed out and why its given us such a greater appreciation for church in general!

1) GOING TO CHURCH IS A PRIVILEGE. When I DID get to attend church, I looked around a felt like it was such a privilege to join with other Christ-followers and all get together for that purpose, to worship alongside them. And it made me think, wow, this is a little glimpse of Heaven, how amazing is this? I wouldn’t have thought about that EVERY time I went to church before, but since I’ve had to miss out NOT by choice? I think about it everytime. And something interesting happens. I don’t CARE what style the song is. I don’t even really care if I know the song. I wasn’t ever one to whine about those sorts of things anyways, but having the perspective of church being such a rare privilege definitely strips away all the petty things. It may not seem petty to some, I understand, but trust me when I say it is! Followers of Christ who are in a new place, a different country, I’m sure would not care so much about the style if they had the rare occasion to meet with a fellow believer. In the same way, if I haven’t had the opportunity to have fellowship with other Christians and worship alongside them and then suddenly I get to, I will not be picky about style. Aside from the music worship, when you hear a word from Scripture by any pastor-any Bible-believing, theologically sound pastor, it doesn’t matter if its the stomping, “can-I-get-an-Amen?” pastor or the kind that talks like Mr. Rogers when he preaches (no one in particular comes to mind, don’t worry) , if you GET to hear someone teach from God’s Word..jsut break that down and think about what that means. The God of the Universe wants a relationship with you, to save you, to give you purpose AND left an instruction book and love letter that he has appointed pastors to teach from…maybe you will appreciate it more. I don’t always think of it that way, but by golly after missing a lot of church and needing it I do!

2)THE CHURCH HOLDS YOU UP WHEN YOU ARE IN THE DEPTHS. We had new appreciation for the Church because the Church acted as the Church to us in our times of need. Now when I say the Church–I mean the Christ-following, evangelical Church that came to our aid in the forms of several different church bodies and individual Christians. When Ethan was first born, some pastors we only met once at a church we visited were out mowing our lawn! I don’t even remember their names. Friends from a lifegroup that we also didn’t know well yet brought us meals until we had food coming out our ears once we returned home from NICU. People from our parents’ home churches sent vending machine money, meals, prayers, met with us in person to pray over us. A girl I met once at church texted me encouraging words and verses each morning and my youth pastor’s wife from growing up texted me similar things in some of our darkest times. I hadn’t seen her in years. People asked to share Ethan as a prayers request with their Sunday school classes, Christian friends from highschool contacted us online telling us they were praying for us last year when Ethan almost didn’t survive from a medical perspective. Of course our close friends and family were constantly asking us “what can we do? Are you ok? Can I buy anything for you? Scrub your toilet? Feed your dog?” THAT is the Church, a big part of it. Faith without works is dead, as it says in the Scripture, and all these Christians definitely put their faith to work in helping us! Even today with Ethan’s fairly simple surgery, we had pastors and Sunday school leaders from two churches come. Two of those we have only known for a few weeks.

It was kind of strange being on the receiving end of the serving, having grown up in church and served ourselves. I had a pretty easygoing life before then. I love my life more and more everyday, though, so don’t get me wrong! I think anyone who knows me and has read even a sentence of the rest of this blog know I’m a pretty proud Momma! It was a good kind of strange, though, the being on the receiving end. It made me see how much we all need one another, in the Church. Also how much the world needs the Church. Of course I did know this before, but I see it more vividly now, the need.

BOTTOM LINE

I say all this to say..church-goers, stop yawning at church and sing hallelujah with some gusto! (okay, you can yawn. This Momma’s tired too. But take notes and we will help slap each other to stay awake and learn something with the knowledge that not everyone in the world can get together to worship God with such ease as we do here!)

And non churchgoers..give it a shot. We’d love to have you. 🙂

Milestone that deserves its own post…cup drinking!

“Don’t give up until you drink from the (plastic) cup.”
ha little play on words from the America song “Lonely People”…or Jars of Clay who covered it for those of you other young’ns who knew it by that first..

Anyways, after all the frustration and reading and thickened milk all over the kitchen, we finally got a glimpse of progress today! Ethan drank from a cup!! Not with a straw, but with a cup with a recessed lid. An SLP friend told me that was suggested, especially for hte kiddos with thickened liquids (because it is HARD to slurp that stuff up with a straw, much less for kids with low tone!). His OT brought a small coffee commuter mug with a recessed lid for us to try, and he did it a little for her but I still hadn’t seen it since my husband was letting me sleep in that day. (Thanks babe!) So all week long I’ve tried, he’s refused. But today he drank some! And asked for more! He didn’t drhink the whole 8oz, but I’m just thrilled he even took a few sips!

http://www.talktools.com/recessed-lid-cup/

If you go to that website, it was the one my friend suggested. We may get that one as Ethan could hold it easier unless we see something similar and cheaper in stores.

2 years Old! Picture Montage and Milestones

(under construction. no photos for this post at this time.) For his 2 year milestone post, I thought I would do a picture montage to recap his first two years’ adventures including highs and lows (but the highs are highs because of what we overcome, right?)

He has had lots of time at home, too, I just happen to have a lot of hospital pictures! 6 going on 7 hospitalizations, only 3 of the 7 will be surgeries, the rest for sickness. He’s overcome a lot, thanks be to God!

PRESENT TIME

These last two are Ethan’s latest accomplishments..in OT, this time (fine motor skills)

Here he is putting MegaBlocks together, and trying to put on a pair of denim shorts. He can get one leg in!

He has been walking a lot more lately, too. There haven’t been many changes since the last milestone post, but he will be gaining his first cousin tomorrow!

He will have a tonsillectomy and adenoidectomy and Microlaryngoscopy and bronchoscopy (MLB) in a little over a week, so prayers are appreciated!