"Just Suck it Up"...

These are words I will NEVER say again to any of my kids. Let me start from the beginning...

Kayleigh's boyfriend, Justin, flew in on Tuesday from Colorado. She hasn't seen him since June, when she was still one very sick chickadee! She spent most of Tuesday through Saturday with him other than to sleep, so Mike and I hardly saw her at all. Saturday afternoon I picked her up to take her gift registry shopping with a dear friend of ours. Throughout the store she was very quiet. She did complain on and off about feeling tired and getting short of breath easy. She said it started Friday and she just had no energy. The more she talked about it, the more frustrated I became (yeah.... this is about where my foot was firmly planted in my mouth....).

After we were done shopping, we dropped off Cindy. When it was just Kayleigh and I, I told her that I really thought she was falling into a habit of having something to complain about around Justin because that's where they left off before. Reminded her that part of her disease process is extreme fatigue, she'd have to learn to adjust to things like that, and really "just suck it up once in a while...". When she got out of the car, I knew she was upset. But, I drove away anyhow.

Sunday evening was the next time I really saw Kayleigh enough to see something was definitely NOT right! She was very winded and seemed kind of pale. She went downstairs to her room and I followed shortly after to check on her. She told me that going up and down the stairs was quite difficult and she had pain in the right side of her chest when she was breathing. Still, I wasn't OVERLY worried, but I was concerned enough to call a friend of ours who is a pulmonologist. He suggested taking her in to our family doctor first thing in the morning, unless it worsened.

Monday morning, before leaving for work, I stopped and checked in on Kayleigh. She told me it was becoming more difficult to breathe, but she was ok. I went on to work and Mike took her to the doctor at 10am. The doctor did a chest xray, but with stable vitals he told her that he thought maybe it was pleurisy. Gave her an inhaler and antibiotic and sent her on her way. No more than 30 minutes after Kayleigh sent me the message she was ok and going home, our family doctor called us with news that made me feel like the world's WORST parent! "Pediatric radiology called from Baptist, you and Michael need to get Kayleigh to the ED NOW, she has a collapsed right lung".

And I told her 2 days ago she was fine and to "suck it up!".

This starts our whirlwind week. Monday was very fast paced. Got to the ED where pediatric surgery was waiting on her and put in a chest tube to evacuate the air that was causing the collapsed lung. A CT scan later in the evening indicated it helped, but it didn't do the trick completely and they recommended surgery. Her chances of recurrence without the surgery went from 50% if the chest tube worked, now to 75%. She was made NPO and admitted, with surgery scheduled for the next day.

Tuesday, her surgeon and anesthesiologist took EVERY precaution to be certain Kayleigh didn't have any trouble with her dysautonomia during surgery. They "salt loaded" her to be sure her BP stayed up, they put her on an external pacer to keep her heart rate regular, AND they gave her an injection of epinephrine to up her baseline heartrate (which was a little low from the morphine). Off she went to the OR.

Surgery went exactly as planned. Kayleigh had little blistery type things called "blebs" on the top of her right lung. One of these blebs (the white one in the middle) popped creating a hole that let air get in the space between the pleura and the lung, thus pushing down and collapsing the lung. So, they just cut out the portion of the lung that had these blebs on it, stapled it closed, and she was done. Took about 3 hours in total and before we knew it the surgeon came out to the waiting room to tell us she did great and they were wheeling her into recovery. He said we'd get to see her in about 45 minutes and she'd go to an intermediate care room for the night, then back to the floor. No big deal.

Well... we ALL know Kayleigh does things her OWN way! 45 minutes turned into over an hour when we started wondering what on earth was going on. When a nurse finally came to get us, Kayleigh was being wheeled to the Pediatric Intensive Care Unit!!! They didn't say much, just not to be alarmed, but they thought Kayleigh needed a bit closer attention with all she had going on. They were kind of quiet about it.

After they got her all settled into the PICU we slowly learned more info. Turned out, as was VERY evident to us, Kayleigh did NOT want to wake up after anesthesia. She could nod her head yes and no and her eyes were "sort of" open. But she couldn't speak and she had no purposeful eye contact at all. She seemed so very distant and very far away. At the same time, she was beautiful. And her Daddy pointed out that watching her breathe in and out, and watching her pulse, was the most beautiful thing EVER!


While in the PICU I noticed a ventilator near her bed. Didn't really think twice about it, after all it's an ICU. Figured they were in all the rooms. The next morning (Wednesday) the nurse came in to get it and made a comment about being glad they didn't need it. I asked what she meant, she then said that in the recovery room, Kayleigh had difficulty breathing on her own after surgery, so they were told to have it available. I'm sure I went blank at that point because she reassured me that at no point did she even think she would need it!

Later that morning (still Wednesday) Kayleigh's surgeon (who is FAN-FLIPPIN-TASTIC!) came in and turned off the vacuum seal on her chest tube. He said they'd get an xray in a few hours, see how it looked, and maybe even pull her chest tube out so that she could go home Thursday evening. SWEET!!! Around 2:30 they came and did the xray in the PICU, then moved her to the adolescence floor. I asked about the xray and was told they'd read it and come see us on 9. No problem!

HA! Remember.... It's KAYLEIGH!!! Problem....

We weren't on 9 more than 30 minutes when the nurse came in and said the doctor was on his way up, but she had orders to put Kayleigh back on vacuum seal right away. Well crap! I was afraid this meant we were heading back to the PICU. Dr. P came in and explained that her lung was not staying inflated on it's own quite yet and showed an area that was still collapsed. He decided that for Kayleigh, vacuum for another 24 hours would be the plan, he'd try her off of it again on Thursday morning. Thankfully, Dr. P said she could stay on 9 as long as her vitals remained stable. She was "sort of" waking up a little (yep - 24 hours post op and we were still wanting to stay asleep!) and that was the primary reason she was in the PICU anyhow.

Thursday morning came and they did another xray ON the vacuum.... still a small leak so vacuum stays ANOTHER day!!! Thankfully, Thursday she was feeling better and we even let some visitors come. She was in and out of it most of the day, but she at least was able to visit during her "with it" times. Later in the afternoon during routine vitals they discovered Kayleigh was starting to fever. They jumped right on that and got her on antibiotics again because they suspected something was brewing.

Friday morning Dr. P came in right as radiology did. He read the first xray as she did it (vacuum still on) and he seemed more pleased with the lung itself, other than she now had fluid.... awesome.... pneumonia starting! Thankfully, the day before the nurses were on it and already had a resident start Kayleigh on antibiotics. Dr. P then turned off vacuum seal for another try and said he'd see us at 2:30 for another xray. If it looked good, he'd pull the tube out Saturday morning so we could hopefully come home on Sunday.

At 2:30 we ended up going downstairs to xray instead of them coming to us so they could get some better views. About 3:30, in walks doc who said "how'd ya like to get rid of that tube?". Kayleigh was THRILLED! Within 15 minutes the tube was gone!

Saturday morning Dr. P came in to see her. He was pretty pleased with her vitals and sent us to xray. Said if the xray was good - we could go home a day earlier than expected. Woo-hoooo!!!

But... again.... she is KAYLEIGH! Nothing goes as planned in Kayleigh's world!

Kayleigh got up to go to the bathroom and noticed she had a pocket of swelling on her lower back. No where CLOSE to where surgery was, but it was sizable! The area was comparable to a dessert plate just above the sacrum and was very fluid filled. The nurse paged the doctor who then ordered more xrays. A little while later one of the doctors came in and said her chest xray was clear, but she couldn't do the discharge quite yet because of this new development. Ugh!!! She looked at Kayleigh's area again and then went to radiology to talk to the radiologist. We anxiously waited for her to return.

Over an hour later the doctor came back and said the sweetest words..... "you can go home today!".

We are now home and she is resting comfortably on her very own couch.

She will see the surgeon in 2 weeks, and she also has to see someone for the swollen area on her lower back. But, she should recovery completely with very little chance of this happening ever again.

Praise God for our sweet angel!!!