The Tonsilloadenoidectomy

Wednesday, December 5, 2012


Alli was admitted last Tuesday morning for her tonsilloadenoidectomy.  After registration we were set up in a pre-op room.  We got our sweet girl dressed in her gown and she played in the crib like nothing was going on.  And for Alli, nothing was. 

It’s hard to remember sometimes, but this is her life.  She doesn’t know any different.  All she knows are hospitals, tests, scans, procedures, pricks & pokes, x-rays, doctor’s appointments, therapies.  It's the life of living with Chronic  disease. 

At first, it’s easy for me to be concerned with how she’ll react in these situations.  It's a natural instinct for any parent, whether they are 2 or 12.  Alli, at her tender age, always shows me so much about grace. When I'm a nervous nut on the inside, about to throw up at any second, I can look at this sweet girl, and she tells me She's got this.  Because He's got this.   And despite any feelings I may have, I remember that all is right in the world.


   
Nurses, her ENT, a nurse anesthetist, and anesthesiologist all came in at different times to give us the rundown on what to expect before, during, and after.  They all had been briefed on Alli’s history by her ENT and of course had this Mama Bear to remind them.  They knew our biggest concern was her history of bronchospasms so they let us know up front, that was their biggest concern as well.  We felt so good by their reassurance that they would be doing everything within their ability to prevent them…..before, during, and after.  We were prepped and prepared several times for a trip to the PICU.  Due to her history and having Chronic Lung Disease, we expected it. 

Surgery was over within an hour.  She did extremely well.  Once she was in recovery, we waited and waited in a post-op room they had prepared should she not require the PICU.  We were called several times and told Alli was doing well, but having a little trouble coming off the ventilator.  When your child has Chronic Lung Disease, trust me, fear can set in quickly when you’re told they are having a little trouble coming off the vent.  After the second phone call, some sweet girlfriends who came to sit with us, prayed for our baby girl, saturating me once again in peace.  Finally around 11:00 am, the post-op nurses were wheeling Alli in her room.  She was on 2 liters of oxygen, which was to be expected, but for the most part, she was a flailing little baby who was still trying to wake up from the anesthesia.  In other words, she.was.not.happy.

Once she finally woke up, she wanted her clothes off (and everything else for that matter). 


I'm not certain, but since her oxygen cannula is off, I'm thinking this was moments before she "RIPPED" out her IV giving us both a blood bath. 

Rare snuggling moments. 
 
That evening we were told that Alli would be required to be off oxygen entirely before she was discharged.  At this point, she was still on 2 liters and it was close to 7pm.  We were kind of upset and didn’t really understand since we had already successfully weaned her at home.  But then we realized, this is ultimately why we agreed to the surgery. 

For better breathing.    

I began making mental preparations for at a least week at Children’s so Alli could be weaned off daytime and nighttime oxygen.    

That evening I encountered probably the craziest nurse ever.  It became apparent she was a “know it all.” I nicely made a few attempts in letting her know she was wrong (g-tube Mama’s, she had NO idea there was a medicine port on the extension).  I quickly realized I wouldn’t be getting anywhere so I allowed her to do her “thing” (of course as long as I didn’t feel she was putting my child at risk).  Alli’s NICU nurse, Carrie, had come and was sitting with us for the evening.  We had a good laugh and many a eye roll as the nurse showered me with Viagra and stomach contents (Again, I had nicely informed her to use the medicine port…but, what do I know??!).

That same crazy nurse power weaned Alli through the night.  And wouldn’t you know, she did know what she was doing after all.  By 4am, Alli was successfully off oxygen and maintaining a beautiful heart rate and oxygen saturation.  By 7 am, I was told we would be discharged that day.  Alli’s lung doctor came in a few hours later and was astonished she was going home so quickly.  He told me to go buy a Powerball ticket on our way home.    I would have to agree we are pretty luck!

Alli continued to rock the first 24-36 hours post-op.  On day three she was in significant pain and requiring oxygen during the day.  On day 4 she had some bleeding (which I may or may not have freaked out over).  Every night, with the exception of our first night at home, have been MISERABLE. She’s up every hour on the hour.  Gas pains, molars coming in, and of course pain from her surgery.   The most pitiful part now are the scabs.  She doesn’t “get it” and is constantly putting her hand down her throat like she’s trying to pick them off.  It would be so much easier if my words could comfort her and should could at least understand.  I'm  aware that still wouldn't eliminate her pain, but at least she might understand. 

Despite seeing her in pain I have enjoyed a few things.

Snuggling and cuddling. 

Another rare snuggling moment.....Ava had to get in on the rocking time. 

I’ve never been able to snuggle and cuddle this baby….Except maybe when she weighed 2 lbs.  Take spending the first 2 months of life on life support in a box without being held (not because we didn’t want to of course, but because we couldn't), followed by 5 months of continued hospital stay, and then add severe sensory issues and you have a baby who has never liked or needed being held and cuddled.  It’s broken this Mama’s heart because I’m such a cuddler and have adored rocking my babies.  At almost 2 years old, I finally got that chance to rock her to sleep in her nursery on Sunday.  This is one happy Mama. 
As far as it being a successful surgery….we don’t know yet.  She won’t have another sleep study for 6-8 weeks.  Her ENT did say, “I don’t believe any of us feel like this is Alli’s only airway issue.” 

News to me doc.  But then again, so was her significant sleep apnea. 
I will say you can actually see down her throat.  Until recently we never realized how big her tonsils were.  Now, it makes so much sense why she constantly has her tongue pushing out, drools all the time, and has a poor swallow.  Her tonsils and adenoids were so big she couldn’t swallow. 

We also noticed, almost immediately, her labored breathing for the most part is gone.  She sounds SO good.  Almost silent.  Almost so good, it’s scary.  She’s always been a mouth breather, a loud breather, and always retracted.  I’ve never attributed it to her tonsils and adenoids.   
I’ve just always assumed that’s how babies with crappy lungs breathe.  Time and healing will only tell.



gJackie

2 comments

  1. Oh sweetie. Rough week. I pray the days just get better and better for her. And that you all get some rest!

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  2. I love your posts! Alli (and the rest of your kiddies) are so blessed to have an awesome Mama like you. Hopefully you'll have more and more of those days with some random snuggling xo xo

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