Kneeling on the Battlefield

"Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own"

--"Never Once" by Matt Redman, 10,000 Reasons

Friends,

Well, Elizabeth is now rocking a g-button like a fashionista and frankly enjoying a little too much the added attention it brings!  The surgery for the button was a pretty crazy experience for us (even by our admittedly chaotic standards), but the long and the short of it is that E is home and we are getting used to this "new belly button" as Michael likes to call it.  Before I dig too deep, I wanted to send Kathryn's and my sincere thanks for all the prayers, thoughts, messages, kind words and shows of support that we received during the process.  Each of you are dear to us and we truly and absolutely felt everyone's prayers as we watched Elizabeth go into surgery.  "Thank you" always seems so small and insubstantial in relation to how much we appreciate each of you.  But, as always, it will have to do for now.  

One of these messages came from a very dear couple friend about a week after surgery.  They sent us a link to the above song by Matt Redman (great song, by the way...simply stellar message!)  and a few words of encouragement.  As I listened to the song, I was struck by the phrase "kneeling on this battleground".  I am a very visual person--usually you have to draw me a picture to help me understand the most simple of issues-- and for some reason the image of an old medieval knight kneeling on the battlefield was what my sleep-deprived mind put there in that part of the song. 

That image was a pretty awesome one to really encapsulate the last couple of weeks for Kathryn and I as we dealt with the surgery and post-op stuff.  Let me explain a bit:

Kathryn and I woke up on Monday morning at 3 am to leave the house with Elizabeth to go to Dallas for the surgery.  The reason we had done this was that we had to be at the hospital at 5:30a.m. for pre-op, and we knew that Elizabeth would sleep better in her bed at our house rather than in a hotel.  But, seriously, the 3 am wake-up call is BRUTAL!   As parents of a kiddo who goes to the doctor a good bit and is hospitalized more often than we would like, I think we instinctively begin to put on our battle armor (so to speak) as we get ready to go to the hospital.  We apply our metal covers, get our sword and prepare to battle and fight forces seen and unseen.  We feel the heavy weight of the armor on us, but feel protected from the dangers.  Parents are warriors for their kids in all circumstances, but the medical stuff --for us--requires armor and one heck of a big sword sometimes.

We got to Dallas and checked in and began the process of prepping Elizabeth for surgery.  E was perky and smiling, cheerful almost to a fault.   (Apparently, she is not only a morning person, but a pre-dawn morning person!)  As we began talking to the doctors, nurses and other medical personnel that were going to be in the surgery, Kathryn and I started to tell each of them the one thing we felt was very important:  Elizabeth is a very hard "stick".  In other words, we have found out the hard way that Elizabeth is almost impossible to get an IV into.  Her viens are very small and, when one is finally located it usually fails ("blows") after a short period of time in use.  So...we told everyone we could about that and tried to let them know that it might be best to try the one location that was found to work in the past:  her left ankle.  Everyone was very nice and nodded in understanding--thanking us for the warning.  Of course, apparently this is "medical speak" for "I'm really ignoring you, dumb parent, because we will do precisely what we want to once we get her back there."  Surgery began...and was over before Kathryn and I could really believe it.  The surgeon came in and said all went really well.  No complications.  They had placed a Bard button in and were going to watch her for a day or so to make sure there were no problems.  We were happy--ecstatic--and hopeful that all our worries on this process were unfounded.  We got through recovery and then were transferred up to Elizabeth's room.  We met the nurse on staff and went through all the hospital admission stuff.  That 3 am wake-up call was sneaking up on both Kathryn and I, but we soldiered on.  As we wheeled sweet E into the room, I noticed that the IV was in her left ankle (no shock there!), but that she had bandages on her right and left hands, as well as her left forearm...while I am no Matlock, I easily guessed that Stab-itha and Needle Nose Natalie had summarily ignored our request and stuck Elizabeth in at least three locations before finally geting a good vein in her left ankle.  It frustrated me, but I decided it wasn't worth getting angry about...yet.  We were loosening that armor a bit...putting down the sword.

Kathryn and I had gotten a hotel room right by the hospital as a "crash zone" for us, knowing from experience that hospital room couches are akin to the Iron Maiden in their comfort level.  We had planned to let Kathryn go to the room first once E was settled and stable to sleep and then I would tag out once she returned.  It was a great plan--in theory--at home--two weeks before surgery. As mid-afternoon approached, we were visited by Nurse Ratched from Wound/Ostomy to "teach" us how to use this new button.  She was a simply delightful specimen of human--all snappy retorts and withering looks, wrapped up in a sneering, sarcastic demeaning package.  She entered the room with a huff and proceeded to ask me if I knew how to use the button.  I jokingly said "no, this is my first alternative feeding source" which was met with the stony stare of a dead soul who was never exposed to mirth or joy as a child. (I admit the joke was bad, but hey she could have cracked a sneer...)  Anyway, Nurse Awesome then proceeded to try to teach me how to work the button.  She had a wonderful teaching style:  demeaning cracks at my apparently obvious stupidity mixed liberally with a constant self-acknowledgement of how supremely amazing her own nursing skills were.  It was a recipe for joy and light.  We got along swimmingly. 

She proceeded to tell me that there was one tube with a "decompression tip" attached that was used to empty the stomach of it contents after surgery (air and other incidental fluids mainly) into a bag.  This tip was shown to me with withering detail, as she explained to me very...slowly...and using small words-- that it was absolutely essential to empty the stomach before putting in any nutrient or medicine.  After this display, she then asked, "Did you understand all that, Dad?"  (Now, an aside here:  I know that it is protocol within nursing to use the terms "mom" and "dad" when talking to caregivers for children in hospitals.  I get that it makes it easier for nurses to communicate without needing to learn names and such...but, it can come across demeaning and callous if used too much...and Florence Nightingale here was using it like a verbal crutch...)  I told her that I understood this concept of decompression and she rolled her eyes (like she was saying..."sure you don't, you East Texas hick")  She then said this:  "Now, Dad, this is important...very important, so I want you to really pay attention...really pay attention. (Like I was being distracted by a shiny object in the room or something!) You can't do this wrong.  Always put the decompression tube and bag in if you want contents to come out--get it?  Don't try to introduce fluids through the decopression bag or tube...very important, Dad."  Uh...gaw-lee, nurse-lady...that there bag thing is an "out" thing, huh?  Don't try to put "in" stuff in the "out" door, huh?  Wowsers.  This medical stuff is haw-urd! (sound of me spitting my dip into a spittoon!)

She then proceeded to insert the decompression tube into E's Bard button and set the bag on the side.  She told me that they were going to allow for decompression for about three-four hours (she helpfully held up the fingers indicating these numbers in case I was unable to mentally climb these mathematical heights) and said she'd be back to change out the tubes and connect the in-flow bolus.  I thanked her profusely for exposin' me to her book learnin' and wished her a safe trip back to the ivory tower of awesome.  

I sent Kathryn to the hotel room at that point so she could rest, as we were going to just wait on the decompression and E was sleeping.  Right before she left, E's floor nurse (who really was very nice!) came in and noticed that her ankle was swelling.  She knew then that E's IV had "blown" or gone bad, so we removed it and decided to try to find another place to put it in, so E could get fluids.  It wasn't a great turn of events, but Kathryn and I had gone through this many times before, so I went ahead and sent Kathryn to the hotel to get some rest.  Our armor was now loosening up nicely and our sword was on the other side of the room.

For the next couple of hours, E slept and I enjoyed watching her at peace.  I was supremely thankful for how God had helped us get through this stressful time and was so glad E seemed to be tolerating this new stuff so well. As the afternoon wore on, our floor nurse had sent requests for the IV Team at the hospital to come up and try to re-establish the IV on Elizabeth.  I had requested this, as we all knew she was a hard "stick".  The IV Team came and tried to find a new place for the IV.  Three attempts and no luck.  So, they gave up and sent up some nurses from the NICU to try.  They were very nice, but also spectacularly unsuccessful.  Finally, the surgery nurses were sent up, as they are apparently the "best" at getting an IV connecfted.  Four more attempts by them, and still no successful IV.  By this time, five hours later, E had been stuck and prodded over eight times and was NOT happy.  No IV was able to be introduced, so no fluids had been introduced in that time.  Plus, her decompression bag was in, so she was draining out excess air or fluid.  The pressure was ramping up.  You could feel it.  Kathryn had been texting me from the hotel room during this time (obviously not sleeping, as her mother instinct told her that the IV thing was a bigger deal than everyone thought.)  I wasn't answering the texts as efficiently as I could, because I was holding E down as the various groups prodded her to get an IV started.  The armor was getting put on again...

Finally, I spoke with her floor nurse and asked if we could introduce some fluids through her button when we gave her medicine to her.  At first, it wasn't thought to be good idea, as the orders stated to not use the button for 24 hours (except for medicine) but, I was persuasive.  The alternative we all knew was to think about giving E a PIC line, which is basically a centerline introduction system which was pretty invasive and major.  No one wanted to do that to her this soon after surgery.  I could feel myself getting more and more tense.  I didn't like where this was going.  I started to search around for that sword again.

I had also told myself during this time to not bother Kathryn at the hotel. She was hopefully resting and I knew that was more valuable than these little issues.  (Of course, I was the dumb one on that...as Kathryn's mother instincts were on full power, and she knew something was up...she was putting on her armor as I was thinking this.)  Anyway, then the floor nurse came in and removed the decompression bag and then got the in-flow tube and inserted it.  She had gotten approval to give E her epilepsy medicines and also a little fluid.  I sighed a bit.  Finally, we were getting somewhere. 

And, then, it happened...the nurse started to introduce the medicine through the tube and got resistance.  Nothing would go in the button.  I was standing over the bed holding E's sweet little hand and watching the nurse.  She hit resistance and stopped.  She was a complete professional, but it obviously surprised her.  She put it down and went to get the shift nurse.  I stayed holding E's hand.  Panic was welling up.  I knew what this meant and it wasn't good.  The nurses came in now and the shift nurse tried to introduce the medicine.  Nothing.  Resistance.  Watching their faces confirmed what I feared.  Resistance to inflow meant that there was a blockage in the stomach or a kink in E's system.  That was NOT good.  The nurse went out to page the surgeon on call to get him to look at it.  Suddenly, the pace of everything was speeding up.  I continued to hold E's hand as she slept--unaware of what was happening.  The armor was on--the sword was clutched.  The battle was beginning again.

The surgeon arrived and had the same problems with the button.  He looked confused.  He said he needed to talk to some colleagues to see how to proceed.  He kept saying: "But, it shouldn't be doing that.  The blockage shouldn't have just happened.  I'll be right back."  And he left.  E's nurse then looked at the line, and up at me.  "How are you doing, dad?" she asked nicely.  She had said it right.  Kindly.  I looked up at her--tears welling up.  "I'm not awesome." I said "I know what's coming, and I don't know if Elizabeth can handle it.  She hasn't had fluids in hours--her surgery was only 12 hours ago. We can't get an IV--we'd have to get a PIC line started before surgery.  I need to call Kathryn."  The nurse looked at me--and I'll never forget this--and said "Elizabeth's a fighter.  We all know that.  This battle isn't too big for her and her army."  And then she left.  The room was quiet.  I was clutching E's hand--crying silently--running through the options ahead in my head--praying with all my might for a miraculous solution to this--and at the same time attacking myself with the thought that this surgery had been a voluntary one--one that we thought would help our sweet E--what had we done?!  The battle was on.  The enemy was engaged.

I grabbed my phone to text Kathryn.  I needed her there.  I knew this was going to get worse before it got better.  Kathryn is my rock. As I was texting her to come on over, she walked in the room.  She had known something was up.  She is the mom.  Don't ever mess with or doubt the mom!  I brought her up to date and she and I each held Elizabeth's hands and steeled up.  We prayed a quick, but fervent, prayer and the original surgeon from that morning who had done E's procedure came in.  He had been called out of surgery to come see about Elizabeth.  He is wonderful and immediately tried to introduce the medicine through the line. No luck.  Three surgeons and two nurses were also around the bed watching--puzzled.  Kathryn and I began to talk out the day with the surgeon--verbally stepping through everything that happened.  Suddenly, I had the thought about the decompression bag and Little Miss Happy.  I said to the surgeon, " Well, Elizabeth had the decompression bag in for over three hours--why is it empty?  There isn't even any gas in it.  Isn't that wierd?"  The surgeon looked up.  "What?  What do you mean?"  I immediately felt foolish.  I'm not a doctor. That detail was stupid--unimportant.  But, instead, he grabbed the bag--still on her bed and looked at it. He had a small smile-shaking his head.  He then immediately pulled out the inflow line that was inserted in the button and compared the tubes.  He addressed the group, "Well, guys, the lawyer here figured it out.  Someone put an inflow tip on the decompression tube and bag.  So, for hours, the bag didn't fill because contents couldn't flow out.  Then, the tip on the "inflow" tube must be the decompression tip--so when we tried to introduce the medicine into the stomach, it wouldn't flow in...because the tip wouldn't let it."  He proceeded to then switch the tips of the tubes and introduced E's medicine and fluids into her button with ease.  Crisis averted.  In that instant that the medicine flowed into Elizabeth, I felt like the weight of the world lifted.  I looked at Kathryn and we both communicated with each other without saying a word.  The battle was over.  As everyone filed out slowly and the doctors and nurses congregated to modify orders now that they had solved the issue, Kathryn and I still stood in that room each holding Elizabeth's hands... thanking God for the miracle we had asked for.  The seemingly simple solution to the knot of problems.  We were, at that moment, kneeling in our armor on the battlefield knowing we had not fought alone.  He had been with us throughout the process.  Never alone. Never once.

 And so, we have returned home with our sweet, strong valiant E to learn how to live with our button.  Understandably, after that little incident at the hospital, we were a bit less than enthusiastic to request more time with Nurse Awesome to teach us how to incorrectly place a line into the button.  We may be hicks from East Texas, but I would venture to say that even we know that whole "square peg, round hole" saying.  I sincerely don't dislike her for the mistake she made (we ALL make mistakes) but I did kind of not like that she was condescending to us while making the mistake.  Shockingly, we never saw her again while we were at the hospital. 

But, that loooong story was necessary (I hope) to let you all know about the lesson here. Elizabeth's journey is awesome, amazing and unpredictable--but all of us, regardless of who we are, have struggles.  We all have things that we battle.  We all have dragons to slay.  We put on our armor every day and attack constantly.  But, the picture to see is that one of kneeling in the battlefield.  That picture of us with our armor on--the battle having been fought--or still being fought--acknowledging that God is there with us giving us the power to slay those dragons.   It is His strength that allows us to keep fighting.  It is His will that allows us to take the next hill.  But we have to acknowedge it.  Because in this battle, it is a strange dichotomy that the very person we are fighting For is also the person we are fighting Alongside.  God is both our fellow warrior and our patron. And, we also should all know that there will be battles.  And, we are called to fight in them.  So, fight on, warriors, secure in the knowledge that you are never alone!

(And, if one of you want to try to explain that concept to Nurse Awesome, I sure would appreciate it.  Best advice I can give:  talk slowly and use small words!) 

We continue to be in awe of each of your wonderful support of Elizabeth and her story.  We thank you sincerely for your prayers and kindness. On to the next battle!