Thursday, July 24, 2014

When "Standard" And "Routine" Turn Into Anything But...

Elaina before her Tonsillectomy, Adenoidectomy and bilateral ear tube placement with myringotomy on July 14, 2014.
Our daughter Elaina had standard, routine surgery to remove her tonsils and adenoids and to have tubes put into both ears on Monday, July 14, 2014 at 7:40am or so.  As you can see in the picture above, she showed no fear about the procedure.  She was smiling, laughing, asking questions, and in a lot of ways excited about the whole experience.  Oh, we told her there would be pain and she'd wake up having an IV and all of that, but she isn't quite 4 yet (her birthday is in just a few days on July 28th), so she didn't quite understand it all.  However, even when she came out of anesthesia (which she had some of the standard terrors of  emergence delirium common in children waking up from anesthesia making it not so fun with a lot of crying), she was in pretty good spirits despite the pain and even asked to stay at the hospital when she found out they had a playroom. :)  I couldn't have been more proud of her overall attitude.
 
Surgery itself went perfectly.  She was a bit congested in her sinuses before surgery, but it was nothing that prevented surgery.  She had no sign of infection of any sort (he concluded the congestion was most likely seasonal allergies or even related to the adenoid/tonsil issue so the surgery would probably help that whole ordeal), and he predicted a standard recovery.  We were instructed to make sure she drank as much as possible, to make sure to manage her pain with the prescribed pain medications (regular Tylenol and Advil that could be given every 6 hours each - there was no Norco or Lortab prescribed due to the fact that most kids her age did better with non-narcotic medications), and keep an eye on her for any post-op complications such as pneumonia, bleeding, high fever or infection.
 
When we came home, she did so-so.  She didn't want to take her pain medication, so she let herself get too sore before we could get her to take it.  This lead to not wanting to drink too much, though she wanted to eat soft foods pretty often, especially some peanut butter chocolate chip cookies that I made that melt in your mouth.  She had a little bit of a cough from anesthesia and her temp would go from normal to 99 range to even just over 100, but all of that was normal, post-surgery stuff that got better the more we got her to drink.  I did make a few calls, and her doctor (after a phone call conversation with his nurse that was relayed to him) almost put her on an antibiotic on Friday, July 18th, because her temp was up and down so much (he was concerned because of her cough and fluxing temp that she might be at risk for pneumonia), but the antibiotic he prescribed for her was one she could not take (we are suspecting she has a Penicillin/Amoxicillin allergy of sorts - IBS, vomiting, diarrhea thing - and he prescribed Augmentin which contains Amoxicillin), and we couldn't get ahold of anyone to get a substitute since they were closed by then.  We did end up talking to a doctor on call at the hospital who told us that what I was describing to him did not sound abnormal for the type of surgery she had had, so no antibiotic was needed for now, but if her temp went up over 101 or she seemed toxic or unable to breathe, I was to take her in to get checked out.  We agreed to this, and she did indeed seem to be doing better by Saturday, July 19th.
 
Now, back tracking just a little, Elaina doesn't like jello or popsicles and she's not a huge drinker anyway, so it was a real challenge to get her to consume enough liquids.  I'm not sure she ever really did, but we did what we could.  She never showed signs of true dehydration, though (as I said before) her temp did jump around a little pointing to the fact that she did indeed need to drink more.  She fussed a lot, not wanting to swallow and often drooling or breathing with her mouth wide open, and I always knew in my heart of hearts that something wasn't quite right with her healing process, but I couldn't put my finger on it.  I told myself that if she continued to struggle with wanting to drink and swallow or her temp was still bouncing around in the 99s or so by Monday, July 21, 2014, that I would take her in for a check up to make sure everything was ok.  Until then, I would do what I needed to do to keep her comfy and to try to get her to drink as much as possible.
 
On Sunday, July 20, 2014, I checked her mouth as she sometimes asked me to do.  I noticed that her "scabs" were starting to slough off as expected.  I was hopeful that this meant that her issues with swallowing would soon be ending and that she was well on her way to full health again...I couldn't have been more wrong.
 
Now, before I go on, let me make it VERY clear that her surgeon was EXCELLENT and did everything right.  He almost never has any complications after his surgeries.  She had excellent care in the hospital, we never let her eat anything she wasn't supposed to have, and we were doing everything right.  What follows is a rare event that happens in around 4% of surgeries like hers, regardless of how good the surgeon, how excellent the care or how well you follow post-op instructions...
 
This is a picture of Elaina with her Daddy right after her surgery on July 14, 2014, because I don't have one from the wee hours of July 21, 2014, but she looked pretty similar except she didn't have her glasses because I forgot them.
***Note: I get a little graphic in my description of what happened, so please, if you are sensitive to that sort of thing or a young one, you may not want to read any further.***

Around 10:30pm on Sunday, July 20th, about an hour or so after we put Elaina to bed, I heard her crying and coughing.  I knew it was about time for her to have Tylenol, so I went to get some ready for her, and groaned within myself wondering if this would be yet another long night for her and for me.  I was exhausted, I wanted her well, and I just couldn't figure out why this "routine" and "standard" surgery was having such a difficult recovery period.

When I walked into her room to get her, she was sitting up, and I noticed that the drool she was drooling looked pretty dark (I had the hall light on and not her room light).  I quickly turned on her room light and stopped cold.  It was blood.  Bright red blood, and it was coming out of her mouth.  I called for my husband as I looked into her mouth.  I saw more blood (it was all coming out of her mouth, though I saw tinges of it in the snot coming from her nose and none was coming out of her ears), so I ran her to the bathroom to let her spit it in the toilet, telling my husband to call the hospital NOW because she was not supposed to be spitting out bright red blood, and that's when I realized the magnitude of the situation.  She was not spitting out a little bit of blood, but a whole lot...and more was coming.

I watched my daughter begin to more or less vomit blood mixed with mucus, and my heart sank.  I knew I needed to get dressed, I knew I needed to pack a small bag to take to the hospital and I knew I needed to do it yesterday.  I remember telling my husband to call and ambulance at about the same time the hospital was telling him to do so.  I remember telling my daughter that I wasn't leaving her, that I was right here, I was just getting dressed and packing a bag.  I remember telling her to spit the yuckies into the toilet and keep breathing for me.  I remember telling her how brave she was, I remember calling her my big, brave girl as I watched the toilet water turn bright red and seem to fill with blood.  I remember watching blood droplets spray across the floor as she coughed, and I remember wiping off her hands and face, and going through at least 3 wash cloths trying to keep her face and hands blood-free.  I remember yelling upstairs to the boys to get dressed and get a bag packed for grandma's.  I remember calling my mom and not reaching her until after the First Response team showed up and telling her to come now, that Elaina was bleeding and we were heading to the hospital.  I remember the look on the First Responder's face when he saw my little girl gurgling on blood and crying and coughing out some small clots, the Tonsillectomy "scabs" and more blood and mucus.  I remember his repeated, "Wow"s, "Ok"s, and "Oh, my"s that made me know this was not looking real wonderful.  I remember somehow finding myself completely dressed, a bag packed with most of what I needed (I forgot Elaina's glasses, her underwear, her socks and shoes and my purse), and somehow able to be there for my daughter when she needed me with a semi-level head.  I remember telling her the nice man was here to help and she needed to do what he asked her to do.  I remember answering questions and being so very glad that I keep records of when I give medications and symptoms and such.  I remember being glad I was an organized person, but really hating the fact that I'd unpacked the overnight bag Saturday night thinking we were in the clear.  I remember racking my brain to try and think of anything we'd done wrong, wishing I'd gotten her to drink more, feeling like maybe somehow it was my fault, wishing I'd not gotten upset and groaned when I heard her cry, wondering if I'd held her enough and knowing deep down in my heart that I really had done everything right, that I was a good mommy (though not a perfect one), and that this was no one's fault; it was just a freak thing that happened in 4% of cases.
 
Most of all, though, I remember my conversation with God as I was doing all of these things.  I remember praying to Him, begging Him not to ask me to go through this, to not let Elaina go through this.  I begged Him not to make me watch my daughter die.  I was fighting back tears and pleading to my Heavenly Father, and I felt the panic try to take me.  Right in the midst of that panic, God touched my heart and told me as clear as day that He was not going to make me watch my daughter die, but He was going to ask me to go through something hard, and He was going to be right there with me.  I didn't understand, it hurt my heart, but I knew I could trust Him and it would be ok...even if it wasn't.  I knew she'd be fine or she wouldn't be, but God was there and He was good, and somehow, some way it would be ok.  I know that sounds crazy to some of you, but there was a peace I cannot explain over the whole thing.  My husband was calm, my daughter was amazingly calm, and I was calm.  Yes, we were scared, but we had God's peace, and that is an amazing thing.
 
I watched my daughter bleed, coughing and spitting up blood for about 10 to 15 minutes.  In hindsight, she probably lost no more blood than a nasty nosebleed of the same duration, but when it is coming out of the mouth it seems so much worse, especially as little as she is.  We estimate that she lost maybe about 2 small Dixie cups worth of actual blood, but it seemed like so much more with all the mucus and such.  When she finally coughed out the last "scab" (which was between the size a quarter and a 50 cent piece), the bleeding finally started to slow down to pretty much stopped.  It was at that point that they were able to thoroughly check her out and told us that her vitals were good, that she was showing no signs of shock and that we could drive her to the hospital ourselves.  I didn't want to (I wanted to go via ambulance), but my husband insisted it would be less traumatic for her to go via our car than ambulance and they assured me she was stable (especially since she wanted to show them her room and her stuffed animals), so I agreed.
 
I sat next to her in the car as we drove the 45 minutes to the hospital.  Her drool was still tinged a little red, but the bleeding was otherwise done, and she was breathing and acting ok.  She was drifting off to sleep, and I worried about that, but I knew that I was right beside her and I could monitor her, so I let her sleep.  I held her head in my hand and kept watching her like a hawk.  God was whispering in my ear like only He can that she was in His hands, that she would be ok, and I felt more of the calm returning.
 
When we got to the hospital, we were immediately moved to an exam room in the ER.  The surgeon on call said that we could wait and see if the bleeding completely stopped on its own, but her best bet was to do surgery to re-cauterize the area or areas that were bleeding.  It would mean more anesthesia, but it was her best option, so we did it.
 
Because she'd had something to eat and drink between 8pm and 9pm and she was stable, we had to wait to do the surgery just a little while.  While we waited, the nurse told us that when his son was 10 years old he had had bleeding just like our daughter, but his had not been easy to control.  He told us that he'd gotten the supplies he needed to take care of his son and about how he knew what we were going through.  It was amazing to have such a kind, tender man who understood exactly how we felt be there to help reassure us.  We know God put him there for us, and that was a blessing.
 
I cannot tell you how amazing the on call staff was.  They were great with her.  She relaxed and let them do what they needed to do.  She was so good and so brave, and I knew God had His hand in all of it.  They knew just what to say to calm my nerves, and they knew just how to handle our daughter's fears.  It was a real blessing.
 
Her second surgery in less than a week's time (it took place sometime between midnight and 1am or so on Monday, July 21st)  went well.  She had several small tears, but none were near main veins or arteries, so that was great.  She had a bit of congestion, but no signs of infection.  The surgeon (a different one than the one who had done her first surgery) told us that he had every confidence that the surgery was successful and that we should not see a recurrence of bleeding.  He also told us that the tears had already shown signs of clotting on their own before he got in there, so that was also a good sign.  She did have some blood in her stomach, which they suctioned out most of and what they missed came up later after she woke up from anesthesia via vomit (REALLY nasty to see that), but it was what she'd swallowed, not that she had bleeding in her stomach, so all was well there, too.  God had protected our little girl in more ways than we even knew how to count, that much was obvious.
 
Right away, we noticed a marked improvement in Elaina when she came out of anesthesia (she still had some of the classic terrors of emergence delirium, but not as bad as the first time, and (as I mentioned above) she did vomit once which was actually a good thing because she needed to get that nastiness out of her stomach).  She was drinking better, talking better and acting more like our little girl.  She still had a cough, but her lungs sounded good, so they assured us that it was due to having anesthesia twice in a week's time.
 
Don't get me wrong; Elaina still has a long way to go.  She is drinking better for us and her pain seems a lot better (they did give us Lortab this time for her, but she only has it at night if she absolutely needs it, otherwise she does regular Tylenol and Advil).  She still has a cough, but her congestion is less than it was.  I did have her checked out yesterday to make sure she is recovering properly and was assured that everything looked good and indeed her congestion/cough was surgery related.  We still have to watch her for pneumonia and other complications, but she is doing well for the most part.
 
We would ask if you would keep our daughter in your prayers, please.  I will admit that I am finding myself getting a little nervous about a re-bleed (though the chance is nearly nonexistent) and pneumonia.  Maybe it is a lack of faith on my part or maybe it is a normal concerned parent reaction after all we've been through, but it is what it is.  If you would pray, will you please pray for these things:
  1. That Elaina would have no more complications, including pneumonia, infection or another post-op hemorrhage.
       
  2. That Elaina would drink for us.  She is doing better about this, but she still doesn't drink as much as she should due to the fact that she is not a big drinker more than anything else.
       
  3. That we would be able to know if/when to call the doctor/hospital and when to relax.  Though she is doing a lot better, we don't want to ignore anything.  As I've said, she still has a cough/congestion (which we did have checked out and was told she is fine, as I said), and we don't want to ignore it if we shouldn't.  So far, her lungs are clear and she has had no fever (though her temp was up to just 100 and in the 99 range off and on Tuesday and Wednesday; it is normal today so far), so all looks good.
Thank you so much!  I have been posting updates on how she is doing via Facebook and will continue to do so.  I will update here, too, but it will be either after she is fully recovered or if something else comes up like a complication or something (which we are voting for not happening!).
 
I hope you all are doing well and that your lives are no where near as crazy as mine have been.  You are in my thoughts in prayers!
 
One more thing before I go.  The one thing that I have learned through all of this is that God is good all the time, no matter what.  We saw His hand in the help Elaina got, the care she received, the staff on call, the peace that surrounded us and so much more, even my Fibromyalgia has been behaving for the most part and I've had almost no pain (though this experience has been exhausting for all of us).  He truly is the calm in the storm.  I don't know what we'd do without Him!
 
Thanks again for your thoughts and prayers!  They mean so much!
 
 

Thank You For Your Help!

Thanks to any and all who helped my friend financially and otherwise get Gia for her kids to help with their life-threatening food allergies! They are to start training on Saturday, May 3, 2014! :) So excited for you, Cindy and family! To check out more of their journey, go here.