So, here we are. Tuesday morning. Our resident was just in a bit ago and indicated there was a pretty good chance for us to go home today. Sounds like it will be sometime this afternoon. We've obviously been expecting this, but now that it's here, we feel a sense of peace. We're just hoping they don't yank that rug out from under us. Wouln't that be mean!
A little more good news from yesterday. Jody gave Kylie her first shot of ACTH Monday, and it went really well. Little Kylie didn't even bat an eye. The nurses that were helping were really impressed with Jody's handi-work.
We also got a few phone calls from various places about the prescription. Apparently our co-pay for a one-month supply of Acthar (ACTH, with an "ar" on the end) will be about $9,500! Fortunately for us, the good folks at NORD (rarediseases.org) specialize in helping regular folks like us out with the money situation. From the sounds of my conversation with Nancy at NORD, they'll be picking up the entire co-pay. Just ouf of curiousity, I asked where that money comes from. Apparently the drug companies make large donations to this place. Think about that for a second. Seem kind of circular? I guess the business of helping people is really a business.
Here's the scoop people (and by people, I mean people that read this, and I have no idea how many that is). We're super excited to be going home, but still super scared. We would love all the company possible.
Just note that since this medication really compromises Kylie's immune system, we can't have anyone over that's been sick or ANY children under 15 years old. Once we know who is in charge of the scheduling that kind of stuff - we've got a decent idea who that will be - we'll post that and we can get everything coordinated. I hope that makes sense.
Big thanks to everyone that has been here for us throughout this interesting journey. Props.
Alright peeps, we'll talk to everyone soon.
Tuesday, April 21, 2009
Monday, April 20, 2009
Another Step In The Right Direction
Well kids, we got some good news today. Not necessarily the "everything is going to be fine" kind of good news, but definitely good news nonetheless.
Clean MRI.
Our pastor, Tim, was up when we got the good news. He said those were the best two words of the day. I couldn't agree more, even though "MRI" isn't technically a word. Tim is awesome, even if he is grammatically challenged.
So, the story. Our French buddy, Dr. Le Pichon came in with Dr. Allaboun and "the financial aid lady" all strolled in. Without missing a beat, Dr. Le Pichon just looked at us and said those two wonderful words. We thanked him a ton (and everyone else) and offered to buy them Applebee's for a while - maybe life!
So, we certainly need the prayers to continue, because we're not out of the woods yet. At least the forest now has some beams of sunlight shining through.
How can anyone not believe in Him?
Clean MRI.
Our pastor, Tim, was up when we got the good news. He said those were the best two words of the day. I couldn't agree more, even though "MRI" isn't technically a word. Tim is awesome, even if he is grammatically challenged.
So, the story. Our French buddy, Dr. Le Pichon came in with Dr. Allaboun and "the financial aid lady" all strolled in. Without missing a beat, Dr. Le Pichon just looked at us and said those two wonderful words. We thanked him a ton (and everyone else) and offered to buy them Applebee's for a while - maybe life!
So, we certainly need the prayers to continue, because we're not out of the woods yet. At least the forest now has some beams of sunlight shining through.
How can anyone not believe in Him?
He has prepared us...
In about an hour and a half Kylie will be heading down for her MRI, as long as we are still on schedule. It was somewhere around 11pm last night when we received a couple of emails that just grabbed our hearts and allowed us to see that we now have a sense of peace, and He has prepared our hearts for whatever lies ahead for Kylie, for our family.
These last couple of days have been quite challenging and have really tested our faith in Him. Through the help of so many wonderful people that He has placed in our lives, we have been able to truly see Him as our Father, the God almighty, who has and will continue to lead us along the path that He has created for us. Going back and recounting all of the moments where His presence has been so great, has helped us not only see Him but feel Him right here. How awesome is He! It is through Him that we will get through whatever is in store for Kylie and our family, because there is no other way. He is our Father, and He will never leave us. He loves us so much and that feels so great! He gave us this beautiful, amazing little girl, and we love her more than anything! We have always felt so blessed that we are her parents, that He gave her to us. He is definitely showering us with so many blessings and all the love we need. I'm not sure either one of us really and truly knew the power of His love for us, but it is AMAZING!! We would not want or have it any other way...there is no other way.
He carried us through. He has prepared us, and we are ready to follow.
These last couple of days have been quite challenging and have really tested our faith in Him. Through the help of so many wonderful people that He has placed in our lives, we have been able to truly see Him as our Father, the God almighty, who has and will continue to lead us along the path that He has created for us. Going back and recounting all of the moments where His presence has been so great, has helped us not only see Him but feel Him right here. How awesome is He! It is through Him that we will get through whatever is in store for Kylie and our family, because there is no other way. He is our Father, and He will never leave us. He loves us so much and that feels so great! He gave us this beautiful, amazing little girl, and we love her more than anything! We have always felt so blessed that we are her parents, that He gave her to us. He is definitely showering us with so many blessings and all the love we need. I'm not sure either one of us really and truly knew the power of His love for us, but it is AMAZING!! We would not want or have it any other way...there is no other way.
He carried us through. He has prepared us, and we are ready to follow.
Sunday, April 19, 2009
He is Here...
He’s not here? Where is He?
This is often a question we ask ourselves when dealing with something as life altering as all of this.
Everyone’s faith is shaken from time to time. Sometimes these unfortunate circumstances cause one’s faith to crumble. For other’s, these trying times only revitalize faith. It’s hard to imagine He is present when something like this happens. However, when you look close, it’s impossible to miss Him. He’s always there, moving hand-in-hand through life.
It’s not for us to know why He would plague a happy, beautiful five month old girl with something like this. It’s for us to bow down, and accept His way. It is plain to see He is here with us.
-Like how did Jody have the foresight to know this was something serious and to record the first of her episodes? The team at the hospital is amazed at how quickly we “got the ball rolling”, based on the onset of symptoms. Jody was not working alone.
-Like how did our pediatrician move our EEG from June 1st to April 17th, which was just one day after our appointment with her? Dr. White was not working alone.
-Like how did the neurology clinic at Children’s Mercy, which was booked and stops doing EEGs at four PM, somehow have an opening only minutes after we arrived around three thirty?
-Like how were my prayers answered that the doctor would immediately know what was wrong? While it wasn’t the diagnosis we wanted, it came quick. Dr. Le Pichon wasn’t working alone.
-Like how did the Pharmacology Clinic have one vial of the medicine we need – with roughly enough medicine to last a five month old girl over the weekend?
-Like how did that stupid Miley Cyrus song, The Climb, come on as we were having some quiet time together as a family?
Every move I make feels
Lost with no direction
My faith is shaking but I
I gotta keep trying
Gotta keep my head held high
There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an up-hill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb
The struggles I’m facing
The chances I’m taking
Sometimes might knock me down but
No I’m not breaking
I may not know it
But these are the moments that
I’m gonna remember most yeah
Just gotta keep going
And I, I gotta be strong
Just keep pushing on
I’m sure there have been plenty of other examples, times where we were either too busy or too preoccupied with despair to notice His presence. It is definitely difficult to remain positive throughout all of this, so we are making great efforts to reflect upon all of these truly awesome moments where He has been so very much with us.
Praise and Worship Him. He is just so incredibly awesome!
Update
Positive, encouraging...K-Looove! My church peeps know what that's all about. The K obviously stands for Kylie. Duh!
So Jody and I finally got to sleep last night a little before midnight. The crew that came in to check her vitals at four woke us both up. Four hours of sleep seemed like forty. Fortunately or unfortunately, we were both sleeping pretty soundly, so waking up from a deep slumber to our current place was difficult. I couldn't stop shaking until I started with this update to you all. It's so hard not to dwell on all the what-ifs. By the way, this is me, Matt, writing. Jody is doing an amazing job of lifting me up. She is awesome.
We saw our neurologist yesterday morning. He had some relatively encouraging things to say.
1. A "clean" MRI on Monday
2. A reduction in the number of her episodes over the next few days which would mean the meds are doing what we want them to be doing...getting rid of this affliction. It sounds like this would also lead to a more encouraging EEG.
3. Lastly, please ask Him to shower Jody and I in his Grace, Love and Mercy. I suppose it is not for us to ask why this happened, but to accept it as His will and continue looking for the ways that He is here with us every step of the way, helping us through this trying time.
It might be kind of corny, but I keep thinking about the famous inspirational quote (Jody has it on a key chain for crying out loud)...I'm going to butcher it, but it goes something like this: a troubled sould sees only one set of footprints in the sand and asks God, "Where are you, why have you left?". God responds with "Dude, I've been here the whole time. Those footprints, those are mine as I carried you. You didn't see me at first because you were lost in your suffering." We can use all the reminding that He won't leave us to battle through this alone.
Since we're taking this one moment at a time...one day at a time is too much to handle...we'll focus on loving on her all day today, Sunday. I know He rested on Sunday, but I hope the sheer volume of prayers regarding little miss Kylie will move Him to act in a swift and efficient manner and maybe work a little OT.
Here's a fun little snippet. Jody makes up songs to sing to Kylie - maybe to help her calm down when she's fussy or maybe just to sing. Either way, Kylie loves hearing Mom's singing. The last line to the original song Jody concocted is "Kylie Mae Stump gets lots and lots of love". We had no idea how much that really is true.
After getting roughly twenty minutes of sleep Friday night, the truck loads of visitors we saw throughout the day on Saturday did an amazing job of lifting both of us and derailing us from those dark, dark thoughts that continuously creep into your head at times like this. A huge thank you to everyone that has lifted up prayer, have come up to see us, called or emailed to offer their support . We cannot begin to express how much it means.
So Jody and I finally got to sleep last night a little before midnight. The crew that came in to check her vitals at four woke us both up. Four hours of sleep seemed like forty. Fortunately or unfortunately, we were both sleeping pretty soundly, so waking up from a deep slumber to our current place was difficult. I couldn't stop shaking until I started with this update to you all. It's so hard not to dwell on all the what-ifs. By the way, this is me, Matt, writing. Jody is doing an amazing job of lifting me up. She is awesome.
We saw our neurologist yesterday morning. He had some relatively encouraging things to say.
- He thinks that based on her development - which is right on track - that she has the better of the two types of this. Without getting too detailed, we're hoping for the variety of Infantile Spasms that is not a symptom of an underlying condition.
- We should know for sure on Monday when we get an MRI (scheduled for 7am). Please pray that everything comes back clean on Kylie's little head. That would mean the Stump family would probably get to go home later Monday or Tuesday.
- Of course, we will be giving her the injection at home...so scary...for the next week or so until we can get another EEG to see if the meds are working. If the meds are working is probably the most important of all.
- The medicine she is on is actually a hormone that is naturally occuring throughout the body. She's just getting it in massive quantities. One of the downsides to the ACTH is that it compromises her immune system. So, what does that mean? We'll be locked up in the house for the next couple of weeks (once we get home). No visits from sick people or kids under 15, or going out in public places (church, grocery store, etc). Not kidding.
1. A "clean" MRI on Monday
2. A reduction in the number of her episodes over the next few days which would mean the meds are doing what we want them to be doing...getting rid of this affliction. It sounds like this would also lead to a more encouraging EEG.
3. Lastly, please ask Him to shower Jody and I in his Grace, Love and Mercy. I suppose it is not for us to ask why this happened, but to accept it as His will and continue looking for the ways that He is here with us every step of the way, helping us through this trying time.
It might be kind of corny, but I keep thinking about the famous inspirational quote (Jody has it on a key chain for crying out loud)...I'm going to butcher it, but it goes something like this: a troubled sould sees only one set of footprints in the sand and asks God, "Where are you, why have you left?". God responds with "Dude, I've been here the whole time. Those footprints, those are mine as I carried you. You didn't see me at first because you were lost in your suffering." We can use all the reminding that He won't leave us to battle through this alone.
Since we're taking this one moment at a time...one day at a time is too much to handle...we'll focus on loving on her all day today, Sunday. I know He rested on Sunday, but I hope the sheer volume of prayers regarding little miss Kylie will move Him to act in a swift and efficient manner and maybe work a little OT.
Here's a fun little snippet. Jody makes up songs to sing to Kylie - maybe to help her calm down when she's fussy or maybe just to sing. Either way, Kylie loves hearing Mom's singing. The last line to the original song Jody concocted is "Kylie Mae Stump gets lots and lots of love". We had no idea how much that really is true.
After getting roughly twenty minutes of sleep Friday night, the truck loads of visitors we saw throughout the day on Saturday did an amazing job of lifting both of us and derailing us from those dark, dark thoughts that continuously creep into your head at times like this. A huge thank you to everyone that has lifted up prayer, have come up to see us, called or emailed to offer their support . We cannot begin to express how much it means.
Friday, April 17, 2009
Well...
(This is Matt) We were admitted to Children's Mercy earlier this afternoon.
We busted tail down to neurology and got an EEG done. The doc came in and pretty much immediately knew - or at least I could tell he did. The nurse gave me some hints and my heart immediately dropped completely out of my chest.
We went back up to the room and that same doc came in and punched us both in the gut, figuratively, of course.
Infantile Spasms. Sounds pretty benign, right? Not so much...
Today has definitely been life changing and makes us appreciate every moment even more than the last.
The bright side: 6 weeks of ACTH, a relatively dangerous drug that has show some proficiency at fighting this. Also, a three-week supply of ACTH is about $22,000.
Yeah, that's what I said. No misplaced decimals there.
Luckily there was a "financial aid" person in the neurology department. It is her job to procure this drug at a reasonable cost. Sounds kind of like a "don't ask, don't tell" policy".
We should know within a couple weeks if the drug is working. They were all shocked at how quickly the pieces fell into place for us to get in here. Her first bout of this stuff was on Tuesday. Here it is just four days later and we've got our diagnosis (although it isn't pretty). Also, the hospital just happened to have one "vial" of this drug floating around. One vial is roughly enough for a five-month old for a couple of days (over a weekend).
Thank GOD for that stuff. Thank Him and only Him (well, the docs might deserve a bit of cred, but we all know where it came from). I don't really understand any of this, but I know He does. I know that we're in good hands.
Now, for the downside...we'll just have to hope that He doesn't have it in the plans for there to be a downside. A few minutes researching this nasty condition online with break your heart. With that said, there is no downside for now.
Please pray for Kylie...
We busted tail down to neurology and got an EEG done. The doc came in and pretty much immediately knew - or at least I could tell he did. The nurse gave me some hints and my heart immediately dropped completely out of my chest.
We went back up to the room and that same doc came in and punched us both in the gut, figuratively, of course.
Infantile Spasms. Sounds pretty benign, right? Not so much...
Today has definitely been life changing and makes us appreciate every moment even more than the last.
The bright side: 6 weeks of ACTH, a relatively dangerous drug that has show some proficiency at fighting this. Also, a three-week supply of ACTH is about $22,000.
Yeah, that's what I said. No misplaced decimals there.
Luckily there was a "financial aid" person in the neurology department. It is her job to procure this drug at a reasonable cost. Sounds kind of like a "don't ask, don't tell" policy".
We should know within a couple weeks if the drug is working. They were all shocked at how quickly the pieces fell into place for us to get in here. Her first bout of this stuff was on Tuesday. Here it is just four days later and we've got our diagnosis (although it isn't pretty). Also, the hospital just happened to have one "vial" of this drug floating around. One vial is roughly enough for a five-month old for a couple of days (over a weekend).
Thank GOD for that stuff. Thank Him and only Him (well, the docs might deserve a bit of cred, but we all know where it came from). I don't really understand any of this, but I know He does. I know that we're in good hands.
Now, for the downside...we'll just have to hope that He doesn't have it in the plans for there to be a downside. A few minutes researching this nasty condition online with break your heart. With that said, there is no downside for now.
Please pray for Kylie...
Monday, April 13, 2009
We are eating more foods
Well our little girl is growing so fast...I just can't believe that I am already feeding her cereal, and have recently progressed to baby food. Kylie loves her rice cereal and has had moments of talking while we feed it to her. We think it is her way of telling us that she likes it. If we are too slow in giving her another spoonful, she is quick to let us know.
Here are a couple of pictures we snapped during her first time eating peas and then carrots. It is apparent that she isn't too found of her peas, since they end up on her face and not so much in her mouth...either that or she is trying to give
some back and share them with me. 
Here are a couple of pictures we snapped during her first time eating peas and then carrots. It is apparent that she isn't too found of her peas, since they end up on her face and not so much in her mouth...either that or she is trying to give
some back and share them with me. 
Friday, March 20, 2009
Over 4 months old now!
We just can not get over how big Kylie has gotten! Each day we would say "my goodness, you have gotten so big!" I am kind of saddened to see that she is not our little baby, but getting to be so big and developing quicker than I would like. I keep telling her to slow down, so I can enjoy her more, but so far it hasn't happened yet. Last Saturday we had just left to run some errands and we forgot her pacifier, so I stuck my pinky in her mouth and felt something poke me. Then the very next day (3/15) the same thing happened, and I could not believe my eyes when I saw not 1 but 2 itty bitty teeth poking through on the bottom of her mouth! SOooooo that totally explains why she was extra fussy the week before and refusing to nurse off of me. Who knew?...defintely not us. I told Matt I was a bit sad that she is getting teeth so early, because I want to see her gummy smile a bit longer...he just shook his head.
She just had her 4 month shots this past Tuesday, and her doctor said she is ahead of the game with getting those teeth so early...we like to call her an over achiever ;) Unfortunately she did not fair so well at this visit, as she was extra upset about her shots and was pretty fussy that night..poor thing.
Everything is seeming so routine for us, and we don't freak out as much as we used to. Every 4-6 weeks we have to adjust as she has new demands and we try to figure her out and constantly adapt...those times are difficult for me as I feel like we are starting from scratch. The good thing is we can say we made it through the last few adjustments, so we know we can handle it, besides her smiles make it all worthwhile ;)
Friday, February 6, 2009
Home Sweet Home
It's official, we're home. We left the hospital right about 12:30 this afternoon and as soon as we got home we took a pretty solid nap. I think Kylie slept from the time we left up until about 3:30!
It's been pretty fun since being home. I'm fairly certain she can tell she's home because she just finished up an hour long smile-fest. Anything we did, she'd bust out a beautiful smile.
Thanks to everyone for the thoughts and prayers.
Good times.
Here is a video clip we took of Kylie in the hospital as she was beginning to feel better.
It's been pretty fun since being home. I'm fairly certain she can tell she's home because she just finished up an hour long smile-fest. Anything we did, she'd bust out a beautiful smile.
Thanks to everyone for the thoughts and prayers.
Good times.
Here is a video clip we took of Kylie in the hospital as she was beginning to feel better.
Thursday, February 5, 2009
Well, That Was Exciting
I'm going to start this story a few days ago - Sunday, February 1st, to be exact. The little lady started running a bit of a fever to go along with the green stuff.
On Monday, I called her doctor and by the time they got back with me the office was closed, so we were directed to Children's Mercy South Urgent care. After a two plus hour wait we were called back so that the nurses could get some vitals. This particular nurse was quite put off that Kylie was crying - I would be too if you woke me up, stripped me down and took my temperature in a rather invasive manner. Anyhow, this nurse asked a doctor if she could give Kylie some Tylenol because "I've got a baby down here that won't stop crying". Whatevs. A few minutes later we saw the doctor. Seemed like a nice enough guy, but was lacking any conviction on why he wanted to run tests on her blood (a vein stick, not a heel stick) and urine (required a cath). So, after he left, Jody and I used our parental veto and walked out.
Fast forward to Wednesday. I was referred to Johnson County Pediatrics by a co-worker. We couldn't get in to see the doctor I was looking for - Bryan Nelson - but we got in to see his wife, who is a nurse practitioner. Well, they are awesome. They had the "fire". They pretty much asked to do the same things that were suggested Monday at CMSouth, but they had conviction in their reasoning. That's all we could ask for.
They were pretty concerned about her color and that she was pretty lethargic. So, they did a heel stick to check her white blood cell count - this is to see if she's fighting an infection, high white blood cell count means infection. They took urine via a cath to check on a few other things. We also did nasal swabs for RSV and flu. The nasal stuff came back negative, the urine didn't provide a positive or negative, but the blood came back with a very high white blood cell count (i.e. infection). Another doctor, Dr. Winburn, came by to provide a consult and suggested she might have to go to "Mercy". Wow!
By ambulance! Double wow!
And they would probably do a spinal tap! Triple wow!
I'm sure everyone would be, but Jody and I were in complete shock. Dr. Winburn and Nurse Nelson didn't seem terribly concerned, but obviously concerned enough to ship us all off to the downtown location of Mercy via ambulance. Everyone at JoCo Peds was so apologetic that we had to meet them in such a rough way.
Here are a couple pictures that I snapped with my phone as we were leaving the doctor's office...
I followed and Jody rode in the front seat of the ambulance. Apparently she wasn't allowed in the back. So, the entire way there Jody got to listen to a screaming Kylie while she couldn't do anything about it. We pulled up to the hospital just after six in the evening on Wednesday, 2/4.
We were immediately admitted and given a room. Within an hour or two they did a spinal tap and took some more blood. Luckily, we weren't allowed in the room to hear / see the tap. At some point, either in the ambulance or when they did the tap, they gave her an IV connection so they could give her fluids and a broad spectrum antibiotic that way. Fun fun. They also cultured the urine to see if something was growing in there.
We got word from our med student on Thursday morning that her spinal fluid was clear, which means the infection wasn't present there. That was very good news! I'm not sure when we go the word, but the official diagnosis is a urinary tract infection. From the sounds of things, it was caused by the diarrhea she's been experiencing for about a month now. The cool thing is that when they did the culture, they also ran it against a bunch of antibiotics to see what would eradicate this little pest in the most efficient manner.
Just before that med student came in, Jody saw a sheet of paper with a diagnosis that said Kylie was potentially septic. If that was the case, that means an infection has spread to the blood stream. Very bad. Luckily though, her blood was also free of the infection.
As the hours, and days, ticked by it was very apparent that whatever the good folks at Children's Mercy were giving her was working. Her color started getting better and she gradually got close to being her same old self. She never stopped fussing though!
All three of us are runing pretty ragged. Sleeping is tough enough with a baby, but in a hospital, you mind as well forget about it. She slept from about 1:00am to 5:00am, although very fitfully, on Wednesday night/Thursday morning. Then, Thursday night she finally fell asleep on me around 11:00pm and woke up screaming at about 12:30am. Luckily, our nurse was nice enough to disconect the IV so that I could take her for a walk through the halls. My apologies to the other patients in 5 Sutherland! After trying everything, we finally got her back to sleep about 2:00am and she got up about 6:30am when a nurse came in to give her some more antibiotics.
I'm writing this at about 10:00am on Friday and it sounds like we've got everything figured out. The team just made their rounds and decided on a good antibiotic.
Sounds like we're going home today!
Here are a couple more pictures I snapped over the past couple of days...
On Monday, I called her doctor and by the time they got back with me the office was closed, so we were directed to Children's Mercy South Urgent care. After a two plus hour wait we were called back so that the nurses could get some vitals. This particular nurse was quite put off that Kylie was crying - I would be too if you woke me up, stripped me down and took my temperature in a rather invasive manner. Anyhow, this nurse asked a doctor if she could give Kylie some Tylenol because "I've got a baby down here that won't stop crying". Whatevs. A few minutes later we saw the doctor. Seemed like a nice enough guy, but was lacking any conviction on why he wanted to run tests on her blood (a vein stick, not a heel stick) and urine (required a cath). So, after he left, Jody and I used our parental veto and walked out.
Fast forward to Wednesday. I was referred to Johnson County Pediatrics by a co-worker. We couldn't get in to see the doctor I was looking for - Bryan Nelson - but we got in to see his wife, who is a nurse practitioner. Well, they are awesome. They had the "fire". They pretty much asked to do the same things that were suggested Monday at CMSouth, but they had conviction in their reasoning. That's all we could ask for.
They were pretty concerned about her color and that she was pretty lethargic. So, they did a heel stick to check her white blood cell count - this is to see if she's fighting an infection, high white blood cell count means infection. They took urine via a cath to check on a few other things. We also did nasal swabs for RSV and flu. The nasal stuff came back negative, the urine didn't provide a positive or negative, but the blood came back with a very high white blood cell count (i.e. infection). Another doctor, Dr. Winburn, came by to provide a consult and suggested she might have to go to "Mercy". Wow!
By ambulance! Double wow!
And they would probably do a spinal tap! Triple wow!
I'm sure everyone would be, but Jody and I were in complete shock. Dr. Winburn and Nurse Nelson didn't seem terribly concerned, but obviously concerned enough to ship us all off to the downtown location of Mercy via ambulance. Everyone at JoCo Peds was so apologetic that we had to meet them in such a rough way.
Here are a couple pictures that I snapped with my phone as we were leaving the doctor's office...
I followed and Jody rode in the front seat of the ambulance. Apparently she wasn't allowed in the back. So, the entire way there Jody got to listen to a screaming Kylie while she couldn't do anything about it. We pulled up to the hospital just after six in the evening on Wednesday, 2/4.We were immediately admitted and given a room. Within an hour or two they did a spinal tap and took some more blood. Luckily, we weren't allowed in the room to hear / see the tap. At some point, either in the ambulance or when they did the tap, they gave her an IV connection so they could give her fluids and a broad spectrum antibiotic that way. Fun fun. They also cultured the urine to see if something was growing in there.
We got word from our med student on Thursday morning that her spinal fluid was clear, which means the infection wasn't present there. That was very good news! I'm not sure when we go the word, but the official diagnosis is a urinary tract infection. From the sounds of things, it was caused by the diarrhea she's been experiencing for about a month now. The cool thing is that when they did the culture, they also ran it against a bunch of antibiotics to see what would eradicate this little pest in the most efficient manner.
Just before that med student came in, Jody saw a sheet of paper with a diagnosis that said Kylie was potentially septic. If that was the case, that means an infection has spread to the blood stream. Very bad. Luckily though, her blood was also free of the infection.
As the hours, and days, ticked by it was very apparent that whatever the good folks at Children's Mercy were giving her was working. Her color started getting better and she gradually got close to being her same old self. She never stopped fussing though!
All three of us are runing pretty ragged. Sleeping is tough enough with a baby, but in a hospital, you mind as well forget about it. She slept from about 1:00am to 5:00am, although very fitfully, on Wednesday night/Thursday morning. Then, Thursday night she finally fell asleep on me around 11:00pm and woke up screaming at about 12:30am. Luckily, our nurse was nice enough to disconect the IV so that I could take her for a walk through the halls. My apologies to the other patients in 5 Sutherland! After trying everything, we finally got her back to sleep about 2:00am and she got up about 6:30am when a nurse came in to give her some more antibiotics.
I'm writing this at about 10:00am on Friday and it sounds like we've got everything figured out. The team just made their rounds and decided on a good antibiotic.
Sounds like we're going home today!
Here are a couple more pictures I snapped over the past couple of days...
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