how are we still “in the hospital” one week later? I feel like my life has revolved around the revolving door of a hospital for the past three weeks.
sorry – I am going to try to not be overly whiny in this post.
I know so many of you are faithfully praying for our sweet girl and want some updates!
As best as I can recap –
Friday morning when we were due for discharge, Kendall stopped walking, would not bear weight on her legs, and in fact would just crumple into a screaming mess on the floor if we tried to put her down. She was ok if she was laying flat in her bed, but would not make much of an effort to move at all. We dosed her up with tylenol, which was not holding the screaming pain fits off, so we went to IV Tordol (basically it’s the IV version of ibuprofen), which knocked her out for four hours. She woke up happier than she had been all day. we put her down and she walked around so we told the nurse we were ready for discharge. The floor resident said if we were ready to go, we could go. No one came in to examine her or to go over discharge stuff with us. We packed up and were pulling out of the hospital parking lot when kendall started retching (trying to puke, but it hits her fundo and can’t get up). I jokingly said – “no ma’am! Let’s not puke the whole way home!” Oh the propheticness…
Twenty minutes later Kendall violently vomited all over herself and everything in her seat. And let me tell you – if you thought Oreo’s were messy going IN – well, wait till you see them come back out. She had had about one fourth of an oreo on our way out of the hospital and that small bite came back to haunt me for the next five hours! We stopped about an hour away, changed her, hooked her up to drainage bags and pedialyte and oxygen and thought we were good. We thought maybe it was a reaction to the Tordol, or just maybe being overly tired from a long hard week – we thought it was the end of it. But it wasn’t. She continued to violently vomit the whole 8 hour drive home. We stopped counting the times and stopped even trying to get her cleaned up. We just changed out towels and blankets as best as we could. She was definitely hurting.
We knew we were going to pass two children’s hospitals on the way home, but every time we would get near them, it seemed like she was improving. you have to understand how very tired we all were, how we just wanted to get home, how much we missed the other children – we weren’t TRYING to be stupid about Kendall, we just really had no idea which was the lesser of two evils. And plus you’re thinking – ok surely there’s nothing left in there now, THIS will be the last time she pukes.
We made it home, she laid right down in her crib and went to bed. I slept on the floor next to her crib because by this time she was puking so hard that she would choke/not clear her airway, and I was so afraid to leave her alone. She slept for about four hours, woke up excited to see her sisters, and started puking again. Called Dr. Natalie who gave me a virtual beat-down through the nurse “ YOU KNOW BETTER!!! YOU SHOULD HAVE TURNED RIGHT AROUND!!! WHAT WERE YOU THINKING?!?!?! YOU GET TO THE ER RIGHT NOW!”
So off we went. Good thing I hadn’t unpacked a THING.
i took kaylen with me, Ben had the older girls at the softball tournament, my parents met us at the ER. We were met outside the doors by an angel of a nurse who must have seen how floppy kendall was, or maybe i just looked like as crappy as I felt – but he took kendall and ran us past the line of 30 people waiting to be triaged and into a room. They took one look at the protocol letter i had in my hand and got to work. It was darn near impossible to get a new line started – kendall’s arms and legs are all bruised up like she’s been in a prize fight from losing spots and blowing veins all week. But they got a line in, got fluids started, and I turned off her pump of pedialyte I had been running into her J-tube. And instantly she started to calm down.
She was lethargic and floppy and didn’t want lights on and didn’t want us to touch her or talk to her that whole afternoon. That nite the doctor comes in to tell me that Kendall’s labs were going a little wonky (heading towards metabolic acidosis), and that she had put her on PICU consult – meaning that the PICU doctor would make the calls about Kendall being able to stay on the floor or having to transfer to the PICU for higher level care. Kendall was on an IV fluid containing 5% dextrose, and her sugars were still dropping. She had not made any pee in over 18 hours – she was just in a bad way. At one point I was really super scared for her – she was pale as a ghost, even her lips, felt cold and clammy, and was floppy when i tried to pick up her arms or legs. Her body temp was 95 degrees.
Somewhere in the early morning she started to seem to stabilize, so we stayed out of the PICU, but they were still worried about what she was doing. Dr Aljadeff came in to check on her, took one look at the black bile draining out of her stomach and said in his wonderful accent “ clearly, what we are dealing with here is much bigger than a possible and rare CSF leak”. wonderful. So we talked about “paralytic ileus”, where the gut THINKS its obstructed, so it stops moving. And yes, in essence, this is what has happened to kendall. We took a KUB (tummy x-ray) – and there is no obvious obstruction, so we can’t just give her an enema and get things moving. We can’t go in surgically and “fix” anything and wake it up. Her body just has to wake it up on its own.
and we have no idea how long that might take.
I tried valiantly to start the pedialyte back up yesterday afternoon – and kendall immediately started in with her pain signs – kicking the bed, writhing around, moaning, crying, grabbing at her head and her chest. So I turned it off. Understand that the rate I am dripping into her intestines is about equivalent to a teaspoon over the course of an hour. We are talking droplets of moisture hitting her tummy – and causing that much of a reaction. She instantly starts making more bubbles in her farrell bag when we do this too – so clearly her whole gut is reacting to the feed attempts.
That is all i know right now. Thank you to my dad and mom who went to the hospital yesterday so I could come get the big girls ready for school to start tomorrow. They are being inducted into the injustices of hospital life – including lab techs who think nothing of flipping on every light on the unit at o’dark thirty to get their lab draw, living off of vending machine food, and the kind of crazy things you start doing to entertain babies when the mind-numbing boredom sets in! so if you see them and they are jabbering non-sense, take it easy on them!
I hear reports from Poppa that Kendall is anxious to get something/anything to EAT right now – so we are trying a sucker to see how that goes! The problem is that she doesn’t understand yet that eating is what is making her feel so bad, and its VERY hard to say no to a kid who hasn’t really eaten anything in a few days, but if we try to put too much into her semi-functional gut, we could make the problem worse, and set her back another day or two! it’s a tough balance.
Hopefully her gut really has just decided to wake up on its own. No one at LG has any clue what else to do for her except pumping her full of sugar water. I am afraid to take her out of the hospital prematurely again, because I just don’t know if we will get another IV started if we have to go back in two days or a week. Ok I know I am the one jabbering non-sense right now. that is the udpate as I know it.
I will go back and cover all that we learned last week. It was full of answers, some good, some helpful, some…..harder to swallow. literally.
thank you for the prayers – for the gifts (colleen – I about died at the cuteness of the minnie mouse overload!!!) – for thinking of us – for the emails and facebook posts – for everything.
Keep thinking good tummy thoughts for Kendall! Your prayers are always so appreciated!