Saturday, April 28, 2012

NUVO

Kennedy took part in her first dance convention today called NUVO in Denver. I had heard about these conventions from other moms at our studio, and when this one was announced a few months ago, I asked Jeni, Kennedy's teacher, if she thought Kennedy was ready to go. They had a half day convention for newer, younger dancers, and Jeni thought that Kennedy might be ready to take it on, so I signed her up.

This morning as I got Kennedy ready to go, we talked about what her day would be like. When I pulled out her company warm up suit, she was convinced she was going to compete! HA! We got to the convention a little early so she could check things out... and WOW was it a little intimidating and overwhelming! There are a ton of very serious, very experienced dancers there. Kennedy watched in awe as I looked for familiar faces. Finally we found our peeps and settled in.

Kennedy had several friends in her classes, so that helped a lot (for me as much as for her! haha). They started out with 45 minutes of jazz, which is one of Kennedy's favorites anyway, but this teacher was SO super fun! She had the kids engaged and moving and taught them a cute little routine from The Lion King. Kennedy kept up pretty well and even got to be Simba. haha

After jazz they moved right into 30 minutes of tap with a different teacher. This is not Kennedy's favorite form of dance, but she tried hard... and liked it a little. HA! After tap they moved into 45 minutes of ballet with yet another teacher. He made sure Kenn kept up which was nice. She wore out in the middle of this class... partially from just being TIRED and partially because ballet is not one of her favorites either. ;) After a quick bathroom break and a juice box, she was ready to keep working though, and she tried hard and listened well.

They finished up with 45 minutes of hip hop (which made Kennedy very excited) and they learned a great routine. The teacher was awesome and I was amazed at how fast all the kids picked up the steps! I hear he's coming to the studio this summer to work with the kids more which is awesome! :) Yes, jazz and hip hop... that's definitely where my girl's heart lies.

At the end all the kids got a certificate of completion for their hard work. It was quite the afternoon! I am so glad that I signed Kennedy up! I wasn't sure how she would do or even what to expect really, but she did great and had a BLAST!! We got to the car and she said, "I want to do that again tomorrow!" HA!

Here are a few pictures... I took some video too but it's not uploaded yet. I'll try to get it up tomorrow. :)
The Kemper Dance Academy Girls before all the teachers wore them out! ;)

 Kennedy with the jazz teacher

 The KDA kids with Ivan, the hip hop teacher 

 Learning their jazz routine... 



 See Kenn being lifted? LOL She was Simba. She loved it! haha

 Stretching in Ballet 

My nose used to be able to touch my toes once. Or not. 

OK That's all! All the kids are sleeping soundly... for some reason Kennedy didn't even argue about going to bed tonight. How about that! ;) Night all! 

Friday, April 27, 2012

Remember Me?!

I think I got lost for a few days! We have been settling back into routine here... sort of. The kids have had all these wacky days off school for teacher development and testing and stuff like that which throws off everyone's schedule and I've been trying to get myself reorganized... which never REALLY happens, but... you know. I try. :o)

Then blogger decided they would change their layout. I hate change. Every time Facebook changes something I get angry and threaten to leave... but of course I don't because then I would have no adult conversation, ever! (Sad, I know.) So now blogger has changed their layout and I keep logging on, looking at it, and logging back off again. Change makes me tired. LOL So here I am yelling at blogger for taking me out of my comfort zone, knowing full well that in a month or so I won't even remember what the old layout looked like. Whatever! LOL

Anyway, all is well here. My mom and I have been busy shopping for two very special birthday kids who have birthdays very soon and then my printer died so I got a new one today. I really like it so far! I can print from my phone! Neat-o! (I'm easily impressed, I know.) I cleaned out Kennedy's closet and moved out clothes that are too small to put into Kellsey's closet which means I now need to go through her clothes and get out the ones that are too small and pass them on to other people. Yet both girls still have more clothes than they know what to do with... how does that happen?!

We are on the countdown to the end of the school year! I am SO excited! I love summer and lazy days and not having to get up and go-go-go! Of course, around here, this also means that it's IEP time for Kennedy and Kellsey. We had Kellsey's kindergarten eval today. She will not be going to school with Kameron, Kennedy and Keeghan because she needs a little more help than their school can offer her, so I got to see a whole new school and meet a whole new team today. They were all very nice and spent lots of time going over Kellsey's needs, allergy restrictions, and stuff like that. Even though she is not where Kennedy was academically when she started kindergarten, they said that Kellsey will spend most of her time in the regular kindergarten classroom (with a 1-1 aide of course). I'm just in awe how this district is run. I'll know more after her official IEP meeting in a few weeks, but I am hopeful for Kellsey's kindergarten year and excited about the team she will have working with her. She showed off her true attitude and sassiness today as she bossed them all around and showed them who's in charge. HA! Kennedy's IEP for 2nd grade is also coming up very soon. Her year will look a lot like this year I'm told, which is fine by me. They have been thrilled with the progress she has made this year... I think they said she has gone up 8 reading levels?? Something like that. It's amazing! She has just blossomed this year. I'll post more about both girls after their IEP meetings.

Kassidy has 3 more soccer games and Kennedy has 1 dance convention (tomorrow) and 2 more competitions and then both activities will wind down. Kennedy will still dance through the summer, but not quite as much as she has been lately. Keeghan's trying to decide if he wants to try out for the competition team next year or not. I think he would do great, but we'll see! Kameron has chosen not to go back to Tae Kwon Do (he took a break while he was in his school play) so instead he has decided to do a one week intensive drama camp at a local church here in June. It's led by semi-professional actors and teaches the kids a lot of the different techniques of acting. I think Kam has been bitten by the acting bug. ;o)

Frank is doing ok in Afghanistan... he's been working long hours and is now working nights so we keep missing each other... he is working when I'm awake and I'm sleeping by the time he gets off work. I do not like this schedule one bit! Hopefully it won't last long! Speaking of deployment, remember my donut?? It started all red and now look...


It's getting greener and greener!! 

In July Frank will be home for R&R and we will head to California for some MUCH needed R&R!! We can't wait!! Bring on the sunshine... and the beach... and Disney... and In-N-Out! Oh yeah, we are California dreamin'! :) 

More later... and I promise, I won't take a week to update next time! ;)

Saturday, April 21, 2012

Q&A #239

May I ask if she is at one of the Childrens hospitals? (my son was going to have to go to one up there and Im just looking for a reference :)
Yes, she was at Denver Children's in Aurora. Before this happened, we had only been to Denver Children's once and that was for dermatology where she was diagnosed with her anhidrosis (she doesn't sweat). All of the girls other specialists are either here in Colorado Springs or are at Rocky Mountain Children's which is also in Denver. Kellsey's GI in Denver is now Dr. Kramer and he is really nice and seems really knowledgeable (at least about button cell battery ingestion!). I also really liked the GI assigned to her here at Memorial (Dr. Kurbegov). She was very kind. I am hoping to get Kennedy into her for follow up on her colitis issues so we don't have to drive all the way to Denver. That ALL being said, I really LOVE all the specialists we've seen at Rocky Mountain Children's... everyone there has been so friendly and knowledgeable about everything... though we've never had to see GI there. :)


Wow that's so scary ! Did you ever figure out where Kellsey got the batteries from? 
No... I don't think we'll ever know for sure since she can't tell us and we were travelling and in SO many different places that whole week. Just the other day one of my friends on FB was sitting in an airport and looked down and saw one of these batteries sitting on the seat next to her... she took a picture and tagged me in it. Kellsey could have easily picked it up from the airport terminal while we were waiting to fly to Philly. Who knows? 


My 95 year old grandmother lives around the corner from the Art Museum location and raves about it. I went to visit yesterday and we tried to go for dinner but they were closed. I never realized that her Sabrina's is your Sabrina's. Such a small world! 
That IS a small world!! I love it!! Who knows, we could have been eating there at the same time at some point! ;o)


Can she drink tea? Chamomile tea is suppose to be great for the esophagus...don't think it would hurt to try, you can ask her doctors if she's allowed tea. God Bless! 
Nope, she's not allowed any liquids by mouth because of her severe aspiration. This is the main reason she has her g-tube. I don't think it would have the same effect if I put it in there. ;o)


really could she be any cuter? Where did you get that shirt <3 it 
We got it last year when we went to The Miracle Party last year. One of the vendors there was selling the shirts. They had lots of great ones but that one was my favorite. 


 Will Kellsey be getting regular MRIs to check on things? How often? 
Yes... I'm not sure how often at this point, I guess it will depend on how her healing progresses. I know she'll be repeating the MRI, the endoscopy and the test where they put the NG tube through her nose and put barium down (I don't know what that's called). Her first MRI is scheduled for May 8th. 


i know you are so relieved your mom was able to stay longer (didnt you say she was going to have to go back?) 
I know you all will sure miss her being around. 
Dont you think she should just look for a house near you? I mean it would be closer and in HER best interest, right? LOL

Yes, she was originally scheduled to go back on the 14th, but she extended her trip, thank goodness! She doesn't want to move here because she's afraid the Army will move us again... otherwise I would definitely try to convince her of that! ;o)

Friday, April 20, 2012

Normal?

Things are back to normal around here... I guess. Kellsey had an appointment with her pediatrician yesterday that was set up by the hospital before she was discharged. My mom went with me, and on the way there we kind of wondered out loud what the purpose of the appointment was. When we got there, her pediatrician walked in and said, "So glad you're out of the hospital... soooo.... why are you here?!" LOL It was a little funny. He checked her out though and I did get to have him check out her poor arms. They look pretty rough from where her IVs were. Her skin is just so sensitive to everything! I'm a little concerned about infection where her skin is torn from the wrapping they used. They tried to be careful and use the most gentle adhesives possible but when it's there for over 2 weeks, there's not much that can be done to avoid damage. :( Her ped said to start with Neosporin and bring her back if she gets a fever or it really starts to look infected. She's been on SO many different antibiotics lately that hopefully her system will fight it off. Sounds good to me! She seems to have fallen back into her routine at home quite well... though it took her a bit to remember where everything was in the house... we had to guide her to her bedroom, the bathroom etc. This seems to happen any time she is away from home for more than a couple days. So interesting!

Today all the kids are off school for a teacher development day. We are hanging out and being lazy which is much needed!! Kennedy has dance later today to make up for a couple privates she's missed over the last 2 weeks. Then of course Chimpanzee is out today which Keeghan has been counting down to FOREVER! I don't know if we'll make it today or not, but we WILL go see it. He's been checking days off his calendar for almost a month! haha Kassidy has soccer practice tonight and a game tomorrow... it looks like it will be nice weather and I look forward to seeing her play. I haven't been to one of her games yet this Spring due to being in Philly and then driving to the hospital so tomorrow is the day!! I still need to go through the pictures I took of Kameron's play last week and get some posted. It was so, so good! I have never seen a production from an elementary school like this before. I was SO impressed! Kameron has been bitten by the drama bug and wants to do more more more! He's GOOD too! (Not that I'm biased or anything!) ;o)

Anyway, I just wanted to do a quick update from here... there's lots going on here, but when isn't there? My mom is here until the 29th and I'm SO thankful for that!! More later!

Wednesday, April 18, 2012

HOME!!!

It's been an eventful day! The floor doctor came into Kellsey's room this morning with the news that the results of her MRI yesterday were not what we wanted to hear... it showed NO improvement with the inflammation on the outside of her esophagus. Very disheartening. She said that she doubted GI would want Kellsey to eat by mouth and would probably want to repeat the tests in a week... which meant she would have to stay there... in the hospital. I admit, I was really frustrated with this news. I had been praying so hard that they would say that everything looked SO much better and they felt great about her recovery.

Anyway, awhile later the GI doctor came in and he said that even though the MRI showed no improvement, he felt that it was a little unreasonable to keep Kellsey in the hospital indefinitely when they weren't DOING anything for her. He said that if she could eat a soft diet with no problems that she could go home TODAY! Hallelujah!! Of course that was at 9:30 this morning and discharge wasn't completed until 5:00 tonight... such is hospital life! ;) Kellsey was thrilled to be able to eat some mashed potatoes, scrambled eggs and yogurt. She didn't seem to have any problems at all, which is good. We are to keep her on a soft diet here at home until cleared by GI to do otherwise. If she shows ANY signs of bleeding, we have to call 911. Hopefully, that will not be necessary.

Long term, Kellsey still has a long way to go in her recovery. She has a lot more tests in her future... a lot of appointments... scar tissue is a huge worry as she heals. This isn't over for her, but at least she's out of the hospital and in her own bed tonight, and THAT is a good thing! :)

Tuesday, April 17, 2012

Kellsey Update Tuesday Night

Kellsey had her MRI and Endoscopy today... they didn't do an MRA this week but they did do an ultrasound of her esophagus while she was asleep. Both tests went well but we won't know the results of her MRI until tomorrow. Her endoscopy showed that her esophagus is healing. :) Unfortunately, her GI in Denver did not have the images from her endoscopy done last week in Colorado Springs, so he was trying to get those images so he could compare. I wish I would have known and I could have brought the copy they gave me. I'm sure he'll have them soon. He said he is cautiously optimistic about her healing but said that he needs to talk to the doctor who reads her MRI and the rest of the team before making a decision about letting her eat by mouth. He wanted to wait until 24 hours after this test to let her eat anyway just in case the tube going down her esophagus irritated anything.

He also noticed that she had a lot of redness in her duodenum and stomach, so he took some stomach biopsies. He doesn't feel the redness is related to the batteries, but he just wanted to make sure everything is ok in there, so we will see what the biopsies show. I'm not sure when those results will be back, I forgot to ask.

Kellsey woke up a little rough from anesthesia, but she is doing well tonight and feeling good. I'm sure she'll feel even better tomorrow after a good night's sleep... and so will I! It's been a long day! Thank you all for praying for her... I will update tomorrow when they have the results of her MRI.

Monday, April 16, 2012

Five Years Ago Today...

Five Years Ago Today...

Kennedy was two years old.

She had been sick for awhile, but no one was really sure what was going on...

A virus perhaps... causing her platelets to tank.

Causing her to be tired. All. The. Time.

Causing her hands to cramp, making her drop her toys and cry out, "Oww!"

Finally, causing her pediatrician to send us to the hematology/oncology clinic at Vanderbilt Children's Hospital which led to a bone marrow aspiration.

Five years ago today I got the phone call that my sweet little girl had Acute Myelogenous Leukemia.


And our lives were changed forever. 

Today, we celebrate her. We celebrate Kennedy's life and how thankful we are for the blessing of her. 


One more month and this beautiful girl will be declared "Cancer Free!"
Thank you, Jesus!

Sunday, April 15, 2012

The Dangers of Button Batteries

Now that I've had some time to focus and wrap my mind around what has happened here over the last couple weeks, I want to take this time to educate. I don't want any child or family to have to go through what we have. It's been a terrifying ordeal... one that I certainly never thought would happen to us.

The most common statement I have heard since Kellsey swallowed 2 button cell batteries sometime in the last few weeks is, "What are those batteries even IN, aren't they rare?" Actually, no. They're not. In the last year alone, 3,400 children have swallowed one of these batteries and deaths have quadrupled in the last five years. Button cell batteries like the one below are found in more items than you might realize.

Batteries like these are found in many common household items - remote controls (especially keyless entries to cars), garage door openers, bathroom scales, calculators, clocks, cameras, singing greeting cards, handheld video games, flashing jewelry, pen lights, digital thermometers, cell phones, key chains, toothbrushes, flashlights, watches (and kid's watches), hearing aids, kid's toys and more. 

How many of the things on that list surprised you? I have to say, many of them surprised me! Some of them, like the singing greeting cards, I guess I knew had small batteries in them, but I never really thought about it. I never realized that all it would take is a small tear of one of those cards for the battery to fall out in your child's lap. Those batteries, specifically, are not protected in any way. 

Furthermore, I never knew the danger that one of these batteries could cause. When a child swallows one of these batteries, if he doesn't choke, it can become lodged in the esophagus. Kellsey's doctors have been telling me how absolutely crucial it is that the battery is removed immediately if this happens. When the esophagus is not being used for eating, it collapses flat. If a button cell battery is in there, the esophagus rubs on both sides of the battery creates an electrical charge which can heat up and burn. The biggest fear is that the battery will burn a hole through the windpipe. If that hole goes into a blood vessel, the bleeding starts heavy and fast and many times children will bleed to death before you can even get them into the emergency room. This is why Kellsey is still in the hospital. With the swelling on her wind pipe still so significant, they don't want to take the chance that a hole will form and bleeding will start... if it did, there is no way we'd get her back to the hospital in time. 

Even though the batteries have been removed (one out of Kellsey's esophagus and one out of her stomach) the danger is still very much alive. The electrical charge caused by the battery can continue even AFTER the battery is gone. The swelling of the esophagus can also get worse. Kellsey's esophagus has so much swelling on the outside right now that it's currently 1/16th of an inch away from her aorta. If they hit, it can cause a hole which would cause bleeding. They transferred Kellsey from Memorial in Colorado Springs to the Children's Hospital in Denver, and while they're not really doing anything differently there for her right now - they're just watching her - they have a whole cardiovascular surgery team well aware of her and ready to jump into action immediately if needed. She has IVs in both arms, which aren't being used for anything, but should bleeding start, they will be open and available for instant blood transfusions. Her antibodies are checked every 3 days so they can make sure they have the proper amount of blood on hand that she would need. Even with all these safeguards in place, even though they assured us that everyone in the hospital is aware of Kellsey and her situation and they have a plan, should the worst happen, they admitted that even there, where she's safest, they've never saved a child's life who has started bleeding. It's THAT real. 

So here's the problem. Many times, like in Kellsey's case, parents are not aware that their child has even swallowed one of these batteries. The symptoms are very similar to the flu or a respiratory infection - fever, coughing, vomiting, belly pain, chest pain, wheezing - Kellsey's own pediatrician, who we adore, chalked her illness up to a "tummy bug" and was ready to send her home with Zofran. Because I thought she may have pneumonia, I pushed for an x-ray which landed her directly in the ER. However, if I would have taken her home that day, tried to give her Zofran, wait it out, chances are Kellsey would not be here right now. She most likely would have started bleeding at home and we never would have made it back to the hospital in time. It's that real. 

So what can you do
First of all, throw out the musical cards. Even if you think your kids will not put things in their mouths, it's not worth it. I read one case of a little boy who is seven who swallowed one of these batteries. You just never know. I know these cards are cute and fun and kids love them, but they could be deadly. Do not insert or change batteries in front of small children. Give them a little credit, it only takes them one time to watch you open the back of a remote, and they can figure out how to do it. They're not dumb. Do not store these batteries near food, pill bottles or medicine cabinets. Besides children, another age group targeted in these deaths are the elderly who mistake them for a pill and swallow them. Either recycle batteries or wrap them securely and throw them away... preferably in an outside trash can. Keep all products with button batteries out of your child's reach. Since I've been home, I've been surveying my house, checking out toys, flashlights, etc. I found 23 of these batteries in my home. I threw away what wasn't important and put the rest up high. I made sure all musical books required a screw driver to access the battery compartment. 

Most importantly, TALK TO YOUR KIDS!!! While Kellsey wouldn't have understood, I did bring home the jar with the batteries she swallowed and talked to Kennedy and Keeghan about them. 

We talked about how we don't put things in our mouths, if we're not sure, we ask, we never even pretend to put things like this or coins or whatever in our mouths because you never know when pretending could turn into an accident. 

In the last 2 weeks, Kellsey has been sedated 3 times. She's been exposed to radiation via x-ray 8 times. She's had 2 endoscopies, 1 MRA, 1 MRI, 1 upper GI and more tests scheduled this week. Long term, her recovery is going to be grueling. There will always be a risk for scar tissue to develop in the spot where her abrasion is. There will be many tests, more procedures, her GI will be a well-known constant in her life. All to keep her safe... because one day, a few weeks ago, she found two button cell batteries somewhere and decided that she would put them in her mouth. 

Please be careful, please watch out. Please don't let this happen to you. 

Friday, April 13, 2012

Status Quo

Kellsey is status quo... she is hanging out with my mom today and I am home with Keeghan. We are heading out in a little while to go to Kameron's school play. Some of the 4th and 5th graders put on a huge production every year at a local high school. They've been working hard and Kameron's been SO excited for this day to get here! They are performing for their school right now, then they're doing a family member showing at 11:00 and then a public showing at 6:00 tonight. He's going to be wiped out afterwards. I know he will do a great job!

Tomorrow morning I will head back up to Denver and my mom and I will switch places for the weekend. My mom will come here and hang out with the other 4 and I will hang out with Kellsey at the hospital. All is quiet for now, which is good. On Tuesday, her GI doctor who is in charge of her care there will be doing another endoscopy and MRI (and maybe MRA too, I'm not sure yet) to see how her healing is going. The results of this test will determine when she gets to start eating by mouth which will determine when she gets to break out of there! I'm praying that the swelling inside and outside of her esophagus is greatly reduced! In the meantime, Kellsey is allowed to go out of her room and roam the wing, but she's not allowed to leave the floor... should something happen, they want her close, which makes sense.

Please keep praying for that swelling to go down down down. That's crucial right now. I'll update again later!

Thursday, April 12, 2012

Q&A #238

First of all, if you have sent me an email in the last 3 days and have been waiting for a reply, I am SO sorry. My email won't let me reply to anything except by phone which isn't exactly the most convenient way to reply to things! I will get back to you as soon as I can!!

Glad you're out of ICU and Kass doesn't have another broken wrist. Was it the same one she broke before? While it not being broken is a good thing sprains they say take longer to heal. That was definitely my experience so hopefully she's feeling better.
Actually it's her left arm this time which is actually better because it's not her writing arm. She's doing ok with it just wrapped up... it's bothering her some, but not enough to keep her off the soccer field! ;)


Why haven't they given her TPN if they are so worried about gastro feeds? I would think I'd be the first option considering the concerns they are expressing. 
They talked about that briefly, but that would require a PICC line which is a whole other ordeal so they wanted to avoid that if at all possible especially since she DOES already have a g-tube in place. They said that many times kids who swallow these batteries end up having to get a g-tube or an NG tube put in at some point, so Kellsey really had an advantage in this case. She would NOT have been happy about an NG tube! 


For some reason Keeghan's face in that last picture cracks me up! its Sweet but goofy at the same time!
That pretty much sums up Keeghan - sweet but goofy! ;)


Did they give you a timeline? Like if she does fine to a certain date she'll be okay?
Not REALLY, especially since we don't know exactly when she swallowed the batteries, but they said they'll be watching her at LEAST for another couple weeks before they'll feel confident that she will be ok at home. 


Wow.. prayers are with you.. how's Frank taking all this... Keeping you in my thoughts..
He's doing ok... worried about Kellsey, of course, and frustrated that he can't be here, but he's glad my mom is here to help and thankful that she's in good hands in Denver. 


We would love to send Kellsey a care package, could we send it to Denver hosp?  
Probably. I meant to ask about that when I was up there today and forgot. I will ask when I go back up in the morning and get an address... just please don't send her anything she can put in her mouth!! 


How in the world can we help. email me if we can do anything...gas cards, food, etc. anything. 
I think we are ok right now... the hospital gave us some gas cards and they gave us some food vouchers for me or my mom for the cafeteria there. They have all been wonderful. As for home, we're just trying to keep the other 4 on track as best as possible with school and sports and dance... now... if anyone knows how to build a volcano for Kassidy's science class, that would be awesome! Just kidding... sort of. ;)


 Just curious if Frank is going to be able to come back home on leave? I know if I were in your shoes, I'd hope my husband were granted emergency leave. 
Emergency leave is only 10 days, and Frank's unit is aware of the situation and is willing to send him home when I place the Red Cross call, but they will ONLY give him the 10 days, so we're waiting to see if it would be more important for those 10 days to be used later. We don't want to bring him home now, have him go back, and then have something bad happen and really need him here, you know? So right now while my mom is still able to be here and we have a system down, we're saving that leave should we REALLY need it in the near future. 


Have you looked into an ipad? It is a wonder and she might like it. It has many "drawing" programs for kids and video/movie(netflix access).
We've talked about iPads for both girls because of the educational apps, but for Kellsey, until she gets over her phase of throwing, banging toys together, putting all her body weight on them etc, it's kind of pointless right now. It would be broken on day one. One day though! 

Wednesday, April 11, 2012

Crazy Day!

What a crazy day!!! So they put Kellsey in PICU in Denver so they could watch her closely. This morning my mom called and said they were going to do a CT scan to see if they felt she was stable enough to move to a regular floor. I found out last night that the PICU rules are that NO children under age 16 are allowed on the unit (or maybe it's 14... either way, none of my kids could go into PICU) so I was praying hard that the CT would be good and they would move her over! One of my friends here offered to take Keeghan for the day, so I dropped the big 3 off at school and Keeghan off at my friend's house and drove to Denver hoping to get there in time for her CT. 


On the way there, my mom called and said they weren't going to do the CT after all because they saw everything they needed to see on the MRI they did the other day (Monday I think? My days are running together). Great. So, can she move? They had to discuss it. SO I get to Denver and find her room and they STILL don't know! LOL I met a lot of different doctors, signed lots of papers... some of those papers were a little scary... like... "Don't let my daughter die" type papers. Ugh! Then Kellsey and I hung out and played and watched some movies while my mom went to eat (NO food allowed in PICU. Seriously?!) and I talked to nutritionists and child life and lots of other people and I found out that even if she IS moved to a real room that the kids STILL can't come up because it's RSV season. Bummer. BUT we were still hoping she'd be moved so she'd have her own bathroom, more freedom, etc.


Then I headed back to pick the girls up from school (Kam is still at play practice and Keeghan is on his way home with my friend right now). I just got a text from my mom saying that she IS going to be moved off PICU tonight so that's GOOD! :) Tomorrow morning I will head back up to Denver and basically do what I did today... spend the day until I need to pick the kids up from school. Keeghan is playing hooky right now since his school is only half day, but my friend who has him has a little boy his age and they had lots of fun today hanging out, playing video games, and tormenting his little sister. ;) I'm sure there will be more of that tomorrow! HA! He even took a nap today! He hasn't done that in AGES! 


Please continue to pray for Kellsey... I guess the most specific thing is that she stays stable. NO bleeding. They have no plans to do anymore tests in the next couple days as far as I know, which is good. I'll update with more later!

Tuesday, April 10, 2012

Going to Denver...

Kellsey's GI came in a couple hours ago and she said the results of her MRI/MRA are not good. While the endoscopy showed improvement on the inside of her esophagus, the MRI showed that the outside of her esophagus has significant inflammation and swelling. The swelling lands within 1/16th of an inch away from her aorta. Cases show that the kids who have died from swallowing these batteries have died from the esophagus hitting the aorta and causing bleeding.

By moving her to Denver, they won't be doing anything different for her than they were doing for her here... she'll basically be hanging out, being bored, going stir crazy, BUT should something happen, there is a cardiovascular surgeon there who can step in immediately and save her life... where here there isn't. So, Denver is absolutely where she needs to be right now.

They are taking her by ambulance tonight and my mom is riding along. Keeghan and I will go up tomorrow morning as soon as I drop the other 3 off at school and we'll stay until I have to pick them up. Kellsey doesn't have any other tests or anything scheduled any time soon, so I will drive back and forth during the day, get the kids where they need to be in the afternoons and then my mom and I will switch for the weekend.

Hopefully once we talk to the doctors in Denver we will get a clearer picture of the immediate future and what happens next. As for now, there's a lot of unknowns. It's all a little scary... so hard to see this clean, smiling face and think of everything happening inside her little body.


Please be praying!! I will update again tomorrow.

Monday, April 9, 2012

Monday Night Update

Kellsey's tests went well today. She had her endoscopy and MRI and then they also decided to do an MRA which looks closely at the blood vessels. The endoscopy was over quite fast and showed quite a bit of improvement since they took the battery out last week. That's a good thing. There's still signs of damage in there, but no bleeding, so her GI doctor was pleased with that. The comparison of the damage in the pictures from last week when they took the battery out to this week has dramatically decreased, though she pointed out areas that are still not "right".

Her doctor has been talking to the team in Denver who has kind of "written the book" on kids who have swallowed these batteries and their care afterwards. Unfortunately, Kellsey falls in the most dangerous of cases because the battery was in there for several days, and even though it's out now and her esophagus is healing, the electrical charge it caused can still be doing damage even now. In fact, they said that many of the kids who have died from swallowing these batteries have gone home from the hospital, appearing to be fine, and then collapsed at home... and nothing could be done. They died from the charge left over from the battery. *sigh* There is also extra concern with Kellsey of course because she can't TELL us if something doesn't feel well or right or whatever.


For now, they have decided to wait on feeding her orally to be safe. Her tube feeds are going well with a reflux medication on board, so they are going to slowly increase those. Her IV antibiotics are done today so she won't be on those anymore, so the good news is that she should be completely unhooked except for when she's getting her gtube feeds. This will give her a little more freedom to go to the play room etc. Once they get the results of her MRI and MRA, they are going to discuss it with the team in Denver and decide where to go from there. Before, they were saying that she could possibly start eating by mouth tomorrow and then if that went well she could possibly be home by Thursday... now this doesn't look like that will be happening. I was hoping to hear the results of her MRI/MRA tonight but I didn't hear from the GI again, so I will catch up with her tomorrow. I am guessing she's still waiting to hear back from the docs in Denver.

Things to be praying for... that everything looks good on her MRI, especially her aorta. That was one area of concern that her GI mentioned. Anyway, all that to say, I don't have a lot of answers right now. Hopefully I will have more tomorrow. Thank you for all your prayers for Kellsey.

Sunday, April 8, 2012

Happy Easter!!

We hope you all are having a wonderful Easter with your families! The kids had fun this morning going through their Easter baskets and then we went to church. Now we have a ham and potatoes in the oven and our tummies are grumbling! I am hungry! :) Here are a few pictures from 4 of the 5 Special Ks... Kellsey will get her basket later... the Easter Bunny had to get a little creative since she can't have candy right now, but I think she'll be happy with the toys in there. :)








More later... 

He is Risen!!

Saturday, April 7, 2012

Saturday Night Update

Kellsey had a pretty uneventful day today. They started her back on g-tube feeds this afternoon at a much slower rate than before and we made sure she was awake and sitting up during the feed and for awhile afterwards and it seemed to go well. SO they are going to slowly increase her pediasure as tolerated over the next few days. Depending on her test results on Monday, they will decide if she can start eating by mouth or not. If she can, they will just need to watch her carefully for a couple days to make sure that food is not causing her any distress or doing any damage. If the tests still show a lot of damage in her esophagus, then they probably won't let her eat by mouth for a couple weeks yet. SO thankful for that g-tube right now!

I asked if she is NOT allowed to eat by mouth, could she go home on tube feeds and they could monitor her on an outpatient basis after that. Her GI said yes as far as further testing and stuff goes, but when the time comes that they do want to start her eating orally again, whether it's Monday or a couple weeks down the road, she would have to be admitted to the hospital for at least 24 hours so they can monitor her closely. SO my huge prayer request is that Monday's tests show VERY minimal damage so she can start eating Monday night or Tuesday and hopefully come home by the end of the week and not have to go back inpatient. My mom is scheduled to fly home on the 14th but she said she can extend her trip for a week if necessary. However, depending on how long they want to wait to feed her, she may have to leave so she can attend some business meetings in Florida. So please please please be praying for these tests on Monday to have positive results!!

I pray you all have a blessed Easter. My mom and I switched back and forth 3 times today between Kellsey and the other 4, and tonight I am home so I can take the kids to church tomorrow and see what the Easter Bunny left them... something tells me he'll leave Kellsey a little something too... ;o). Kameron decided that the bunny wasn't enough and pointed out THREE very loose teeth tonight which are now all under his pillow. He's going to be a happy boy in the morning! Tomorrow afternoon my mom and I will switch back again and I will stay the night with Kellsey so I am there for her tests on Monday.

Anyway, I think the house is finally quiet, so I am going to get some stuff done and go to bed. More tomorrow!

Friday, April 6, 2012

Out of ICU and More...

Kellsey was moved out of ICU to a regular room today on the ped's floor. She was thrilled! This means a little more freedom, a play room, a DVD player, and we were thrilled to get over there and find our favorite nurse waiting for us! :o) She was there when Kellsey had her g-tube put in and then again when she had her cellulitis.

Unfortunately, Kellsey's IV gave out today... they only last so long, and when you are allergic to most tapes and tegaderm, it's even harder to keep them secure. Shannon (her nurse) came up with quite a fabulous concoction for her new IV. I think this one will hold much better. We'll see!

I talked to Kellsey's GI doctor at length tonight... the doctor who did the test on her yesterday had some things to say about me of course... I'm difficult, you know? I explained that I'm really NOT trying to be difficult and I'm absolutely appreciative of everything they've done for Kellsey, BUT if a tech doesn't know what he's talking about, then he shouldn't be guessing and telling parents what he THINKS is going to happen... and then arguing with them about it before clarifying with a doctor. I told her that I am fully aware that I am not a doctor, I KNOW I'm not an expert, and 99.9% of the time I don't know what I'm talking about, but I DO know Kellsey better than ANYONE else and she is NOT "every" kid. If they did with her what they do to "every" kid, she would have been dead a long time ago. I did apologize for getting so upset yesterday and she told me that we'd have to repeat that same test she had done yesterday several more times so if yesterday's scenario ever happens again, I should just ignore the tech and wait to talk to the doctor. I agreed, but I still think the techs should not be saying things to parents if they don't know what they're saying is true, you know? Whatever. All is well as far as I know and hopefully they understand that I'm just looking out for Kellsey's best interest.

Tomorrow they are going to try tube feeds again at a slower rate and see what happens. Obviously, she needs nutrition so they have to do something, but the GI did agree with me that reflux is a real worry. So they're going to take it slow and watch her for any signs of reflux and go from there. They are also going to put different fluids through her IV.... more sugar perhaps? We don't want her losing lots of weight! Monday's test will tell more of what the next steps will be for her.

I am home with the kids again tonight... I went back and forth and all over today... yesterday, Kassidy was helping out in Kennedy's classroom after school (she does that twice a week) and she fell on her wrist and really hurt it. It was still bothering her today so I took her to her ped and he thought it might be broken. Seriously. I just kind of laughed and said, "Well, I guess I'll take her to visit Kellsey and have an x-ray!" Things like this just don't happen, right?! Thankfully they called me not long after her x-ray and said that nothing is broken, it's just a bad sprain, and to keep it wrapped for a couple weeks until it's feeling better. Hallelujah!! One less thing to worry about! She is going to sit out for soccer tomorrow and let her arm rest.

In the morning Kameron has play practice and Kennedy has dance and then I'm going to head back to the hospital so I am there when they start Kellsey's feeds. I will hang out there for the afternoon/evening and then probably switch with my mom again so I can take the kids to church for Easter morning and then we'll switch back again so I can be there for Monday's endoscopy and MRI. I am trying hard to finish this program for Kameron's school play, but the site I need to use is blocked at the hospital for some crazy reason so I need to be home to do it. Ahhh! If anyone has a cloning machine, please send it my way!!

I am thankful that Kellsey is out of ICU, that Kass' arm is not broken and that between me, my mom and a couple friends, all the kids are covered, taken care of, and getting to where they need to go. More tomorrow.

Q&A #237

HEY!...if you go to a different Shriners don't go to Sacramento, come to St. Louis!! 
They didn't give me that option lol. I think they picked the closest two to here that has ortho. We'll see what happens! 

I was wondering ( please forgive me but I dont have experience with DS children) if Kellsey and Kennedy will ever be capable of living on their own once they are adults or will they always require lifelong care and assistance ?
Many adults with Down syndrome live on their own, hold down jobs, get married etc. Their level of help from family varies depending on their needs. I don't know the future for either of my girls, of course, anything could happen. I DO see Kennedy living on her own someday and/or getting married (probably not to Justin Bieber though! haha) and doing whatever she sets her mind to doing. Kellsey has a lot of other medical issues that will probably prevent her from ever living totally on her own... it's hard to say for sure at this point of course, but there are lots of great group home settings where she can go and have roommates and someone looking after them to make sure they're safe. We'll see... somehow I think both of the girls will be too independent to want to live with mom and dad forever. We're kinda boring. ;) 

I was wondering who looks after Kassidy Kameron and Keeghan now your mum's not right round the corner??
I just left Kassidy in charge. She's old enough to care for the others for a few days. 
I'm SO kidding!! No one throw tomatoes at me! LOL My mom flew in to stay with them while we were in Philly and thank God she did because now that Kellsey is in the hospital, I need her here! 

I know we talked about this before, but does your mom ever wonder why whenever she's around your house a hospital trip is always involved? ROFL (I laugh in the "you have to find the humor somewhere!" kind of way!)
I know, right? LOL Last time though she came specifically FOR Kellsey's gtube surgery so that was a little different. I'm SO glad she is here though!! 

Good thing you pushed and said something's not right Renee! Trust those mommy instincts. When do you think she got batteries to swallow? What size were they? As if that's important, lol. I am so glad that so far all is okay and hoping it stays that way and at least your mom is there to help. When is she supposed to head home? Will she be extending her stay until Kellsey is out of the woods? 
I'm not really sure... symptoms started Friday but the doc said it could have been a few days before then... we were in so many crazy places.... airports, restaurants, airplanes, waiting rooms, malls and more. Heck, she could have found them here at home before we left... who knows?? I can't find anything in my house missing those batteries, but I'll be looking more closely now! They were round button cell batteries... I'll post a picture... flat and about the size of a nickel. My mom was/is scheduled to stay until April 14th. Kameron's school play is on the 13th so she wanted to stay for that. I'm so glad!

So I was wondering how did they remove the batteries? Did they have to cut her open at all? Was it all with scopes? Just for curiosity sake. Still can't believe it. Do you think she had them in there before your appointment last week for their neck? Don't they do x-rays for that? Would it not have shown up on those xrays or are you thinking it was swallowed sometime after that? 
They did not have to cut her open, thank goodness! They had scopes and cameras and one of the scopes had a little pincher thing on the end that just goes down and grabs it... I didn't get to see it, but they were describing it to me. They think they were definitely in there for a couple days before her symptoms started on Friday and her Shriner's appt was Thursday, so yes, they would have been there (of course that's just a guess based on the corrosion of the batteries). She did have x-rays done at Shriner's but they were just of her head and the top of her neck, the picture stopped right below her chin, so it wouldn't have caught it... can you imagine if it had?! I'm not quite sure what would have happened... they probably would have sent her to CHOP. I've been running through all these "what ifs" in my mind the last few days. I even had a dream last night that she swallowed her mouth guard. I think I'm super ultra paranoid now. :o\

So glad your mom is there to help you out (did I miss something else?) WHen did she get there? or have you talked her into moving closer?
My mom came in a week or so ago to stay with Kassidy, Kameron and Keeghan while I took Kennedy and Kellsey for their annual appointment at Shriner's in Philadelphia. SO glad she was here!! 

When you talk to the GI doc, ask him if this narrowing in her esophagus from the batteries is similar to achalasia, and how surgery would prevent further narrowing. 
I will ask, but from what I understand, they think the narrowing is from scar tissue building up from the abrasion. They said this will be something we have to watch indefinitely. 

Thursday, April 5, 2012

Thursday Evening Update

It's been a long day. I think Kellsey needs a time out. She is WAY over stimulated (which is weird to say since she's stuck in a bed) but she has so many new people in and out of her room, has watched WAY too much TV and has more new toys brought in than she knows what to do with. My mom is with her right now and said that she finally just threw everything off her bed onto the floor and is just done.

And for that matter, so am I. I think I need a time out, too. Maybe Kellsey and I can go sit in a corner and cry together somewhere. Kellsey had her test today with the NG Tube... it was supposed to be this morning, but was bumped to this afternoon. When we finally went down for it, the tech in the room told me the plan was something completely different from what I had previously been told. He said she would be drinking barium by mouth, which I was NOT ok with. Kellsey drinking fluids by mouth can lead to aspiration which can lead to pneumonia. Her getting pneumonia right now would not be good. He argued with me for awhile and I finally told him that she would not be drinking by mouth. Period. He went to complain to the doctor who came in and told me that all they would be doing was putting the NG tube through her nose and down into her esophagus past where the abrasion is and they'd put barium in that way. THAT is what I was told yesterday. I told her that her techs should not be telling parents things that were going to happen if they didn't know what the heck they were talking about. Right after that, the tech pulls out TAPE even though it's all over her chart and on her allergy band that she's allergic to it, and couldn't figure out what I was talking about when I said he couldn't put that on her. @@

THEN the doctor proceeded to tell me that Kellsey would be restrained for this procedure. Um, what?! She explained that ALL kids try to get out from under the machine because it scares them. I assured her that Kellsey wouldn't. She again said that Kellsey would be tied down... that's how they do it to ALL kids. I told her that was great but there is NO way they're tying down a kid who came from an orphanage where she was likely tied down to her bed. Sorry. She would lay there JUST fine. So, she rolled her eyes and said they would have the restraints on stand-by and I told her she would NOT be using them. Kellsey laid there just fine... with someone holding her head and arms still. The doctor admitted I was right. Shocker. GRR!

The good news is that the test showed no leakage, which means no hole has formed in her esophagus. However, the spot where the battery was is really narrowed and still really inflamed. Therefore, she can't begin eating by mouth tonight. On Monday, they will do an MRI and an endoscopy to get a better look at this narrowing and decide if it has to be repaired surgically or not.

In the meantime, they started tube feeds today. However, it's causing some kind of reaction with her. I have been saying for a couple months now that I think Kellsey has developed reflux, but everyone disagrees with me. What do I know? I'm just a dumb mom. Her surgeon who put in her g-tube said that since they didn't do a nissen and fundoplication that there was a chance she could develop reflux. When I saw signs of it and mentioned it, they said they were sure that wasn't it. Whatever. However, the GI doctor said that if they were to do g-tube feeds and it WERE to reflux up to the abrasion, it could make it worse and possibly even create a hole. So they started the tube feeds, she got really cranky and started pointing at her mouth and whining. My mom asked if she could be refluxing and they said no. Hmm.... I talked to the floor doctor on the phone and mentioned my concerns especially because of what the GI doctor said. He said that was fine that they could stop her tube feeds for tonight until I could talk to GI tomorrow. However, now they're all ticked off at my mom. Not her fault. I'm sure I'm being labeled a difficult parent (what else is new?!), but DANG, they're telling me one thing and then saying another! *sigh*


Anyway, I am home for the night with the kids. One more school day this week. Yay! I have been working hard the last couple days on the program for Kameron's school play, and I'm hoping to get it finished up tomorrow morning... we'll see. Please be praying for Kellsey's tests on Monday. Those will decide whether she needs to have surgery to fix her esophagus or not. I assume that her GI doctor will start her tube feeds again tomorrow, but I just want to get some reassurance from her that it's not going to cause more damage than what's already in there. I'd rather wait, leave her on IV fluids and let her heal a little more than risk making things worse than they already are... but again, what do I know? I'm just a stupid mom. Frustrating.

Q&A #236

I realize these are OLD questions, but I have some catching up to do. I'll post another one tomorrow with more recent questions!


Live in Philly? Be still my beating heart!
Seriously, I was there the other night and today for the flower show and I really love it too. You really have to hit Boston at some point, though, b/c I think it slightly edges Philly out :) 

LOL Well it wouldn't be for a long, long time! ;) I really would love to visit Boston sometime. It looks amazing. Frank really wants to visit NYC as well, but I think we need to do that childless. Going there with 5 kids stresses me out big time! 


I am curious how you feel about using the word retarded to actually mean having a low IQ. The school district that I work in (Houston, TX) has recently switched from a label of mentally retarded to a label of intellectual disability. They mean exactly the same thing, just different words. Is one better than the other?
They changed it in TN as well. I don't know if they changed it here in CO or not, but I would guess so. You're correct, they mean the exact same thing. However, the term ID just sounds... less harsh to me than MR does for some reason. Kennedy didn't fall under the MR label anyway due to her IQ score, but just hearing MR makes me cringe. I was just talking to someone else about her original medical file from the hospital on the Army post. There, her original diagnosis was Mongoloidism. Seriously. So behind the times! 


Wow, I'd be afraid to touch anything in my house!! 
Right?! It keeps us on our toes, that's for sure!


Happy belated birthday! Delanie is adorable. Is that a scratch on her cheek? My youngest scratched himself in the exact same place when he was a day old. He still has the scar! But I think it's cute. 
I think it was... it's gone now. Kassidy had one just like it when she was born... those baby nails are sharp! 


OK, not the point of your post but totally the cutest picture of Kennedy I have ever seen :) 
Aww thanks! :) That was at her Valentine's Day party at school, which reminds me, you asked for a picture of her "heart hair" on FB. Here is the back... 

I agree with you but hate the few month or so when it is back to being dark again when I get up to run. I also had the birds that wake me up every single morning at 4:15 for the first couple of months.
Actually, who am I kidding? I hate all birds, not just the ones that wake me up. 
Poor birdies... what did they ever do to you?! ;o)

Why didn't anyone else comment on this? Don't think I've ever seen that happen before!
LOL Yeah we were pretty boring around here... unfortunately Kellsey changed all that. I like boring better! 

Renee, Renee, RENEE! I'm so excited! Today I was at Burlington Coat Factory (do you have those there? I know they do in TN), and I saw little girls' Easter dresses with matching 18" doll dresses! I immediately thought of Kennedy and Charlie...oh man, they were so cute. And the whole sets were $39.99, which will probably come down more after Easter. So cute! I was so excited to tell you about them! (All these little Easter dresses make me want a little girl, btw!) 
We do have them here! I will have to check it out... maybe after Easter... I'm a sucker for sales! ;) 

Glad to read you guys are okay. I know that unbuckling drama all too well! We know have a car seat that our child can buckle closed himself but cannot be unbuckled by him. Hallelujah! Just curious, does Kellsey understand when you tell her not to do that?
Yes, even though she doesn't speak much, she understands almost everything we say... she sometimes doesn't answer yes/no questions appropriately, but she knows what we're saying to her. One of these days she'll agree that staying buckled is best... right?! ;) 

Love that pic! Happy world down syndrome day, tell Kennedy to come hang out with us. Justin Bieber's hometowns about 15 min from where I live and he's often spotted at our mall, around Christmas time. 
Oh man... she would so be there! hahaha

Ellee is the same way with the pee thing. I thought she was the only one and it drove me crazy but now I will just blame it on a European thing or stage fright lol 
Well at least Kellsey's not alone! Maybe they taught them privacy in the orphanage... hahahaha

Wednesday, April 4, 2012

Wednesday Night Update

Kellsey is still doing ok. She's totally bored, but she's had a couple volunteers come in and play with her today, so that helped break up her day a little bit. Her x-ray this morning looked good still, so that's encouraging. I came to the hospital this morning after I got the kids dropped off at school and stayed until I had to pick them up. I took Kennedy to dance, picked Kameron up from play practice, fixed them dinner and then came back to the hospital to switch places with my mom. She is home with the other 4 tonight and I am here with Kellsey.

Tomorrow sometime they will put an NG tube down through Kellsey's nose into her esophagus and put barium through it. This will coat everything in there and help them see if there's any damage. If they feel it is safe, they would like to try to feed her something soft after the test and see how she does. They'll continue to watch her closely. Then on Monday, she will have an endoscopy and an MRI of her esophagus so they can get a really clear view of what is going on in there. The doctor who came in earlier this afternoon said that he feels pretty confident now that she's going to be ok, it's just going to be a process getting her healed up. He showed me her x-ray from Monday too. This was the first time I've seen it since it flashed on the screen in the x-ray room and everyone started panicking. It really is just crazy...


You can see the two batteries... one in her esophagus and one in her stomach... *shudder*

Anyway, please be praying that everything goes well tomorrow. She'll be awake for the procedure, which is good I guess because no anesthesia will be involved, but I'm sure she's not going to like the whole NG tube thing very much! I'll update again tomorrow. 

Tuesday, April 3, 2012

Tuesday Night Update

Kellsey is doing fine tonight but she's getting bored in her bed and really restless! My mom and I switched places this afternoon with the intention of me coming home to get the kids to their after school activities, but school was canceled due to snow and so were their activities. SO I came home, relaxed with the kids and now I'm going to get some sleep. After I take the kids to school in the morning, I will head back up to the hospital.

Kellsey's GI doctor came in earlier and told my mom that Kellsey will be in ICU at least until Monday. I was pretty surprised to hear that!! I thought maybe she'd be moved to a regular room tomorrow or Thursday. However, they're not even going to attempt to feed her through her gtube for a few more days yet while they allow her esophagus to heal. Even with me knowing that she doesn't feel pain like a typical child, it's still so hard for me to look at her and see her smiling and playing and acting normal and comprehend that she's actually quite sick.

Here are a few pictures in case you're not on my FB page...

In pre-op last night... she had versed here and was feeling... well... happy!

The batteries they got out of her... one is on top of the other. I don't know which one was where. 
I try not to think about it. Ugh! 

This is how she spent most of her morning... she had the right idea!

On Thursday they plan to do another endoscopy so they can see how bad the damage in her esophagus actually is. They will get a better understanding of things once the swelling is down. I guess that will determine when she can start tube feeds. They will have to watch her really closely because if she refluxes the pediasure it would be really bad on her esophagus. One day at a time...

Anyway, I'm going to go take a hot shower and head to bed... please keep praying for my girl.

Ahhh Morning!

Everything always seems easier to deal with in the daylight. It was a long night last night. I hope we never have to go through another scare like that again. I finally fell asleep around 3:30 this morning, and then they woke us up at 5:00 for blood work (which thankfully they were able to get from her IV) and a chest X-ray. For today, it looks good. There is nothing leaking out of her esophagus, which is what we are hoping for. They want that abrasion caused by the battery to stay closed.

Kellsey slept pretty well last night, she was a little restless, but that's normal, and this morning she is a little cranky. She's fine if no one touches her... Or her IV... Or any other wire coming out of her. I think she's been thrown off her routine for so long that she's just done. I'm sure as the day goes on she will make friends up here and perk up a bit. ;)

She continues to be on complete tummy rest and is getting IV fluids only. They want to give her esophagus a chance to heal and not risk anything refluxing up from her belly. Maybe by tomorrow they'll let her have tube feeds if all goes well, but she won't be eating by mouth for some time.

Long term they are worried about scar tissue forming where the battery was and so she'll be followed closely by GI throughout her healing process. All the nurses and doctors have been great up here and they are taking wonderful care of Kellsey. Hopefully in a few days I'll be posting that we are out of here!

Update...

Kellsey is out of surgery. Both objects (the one in her esophagus and the one in her stomach) were batteries. This is what they were afraid of, unfortunately. From the looks of them, they've been there for awhile... Possibly even before her symptoms started on Friday. The one in her stomach was ok... It did not cause any damage because it passed down. However, the one in her esophagus was really lodged in there and had started eating away at the tissue. There is one part of her esophagus that is now paper thin as the battery almost ate all the way through it. Typically, a child would be complaining of severe pain within hours of swallowing one of these batteries, but since Kellsey doesn't feel pain it masked everything.

She is now in ICU and will be here until she is out of the woods. The biggest risk is infection and bleeding and a hole forming in her esophagus causing air or blood to escape. She is on 3 different IV antibiotics and they said to plan to be here in the hospital for several days. They will be doing daily chest X-rays to check for any changes or signs of leakage. It's just one day at a time right now.

My mom is going to come up tomorrow and switch places with me for a bit so I can nap and shower and see my other kids. I've only seen Kass, Kam and Keeghan for a couple hours since we've been home. Kellsey is in good spirits overall, she's extremely overtired but I think she just finally dozed off. Hopefully she can get some good rest and start healing!! Please keep her in your prayers over the next few days.

Monday, April 2, 2012

Home... Sort of...

The girls and I flew in from Philly last night and got home around 11:00. The flight was crazy bumpy and I thought the plane was going to fall apart at one point, but beyond that it was pretty uneventful... Well except for the fact that Kellsey's G-tube came loose and pediasure went everywhere. That was fun. But besides THAT, really, uneventful! ;)

The kids went back to school today after a week or do off for Spring Break. Kennedy slept in since we got home so late, I didn't want to set her up for a bad day at school. Then I made an appointment for Kellsey with her ped.

On Friday we went to the Aquarium in New Jersey with my friend Joy. About half way there, Kellsey started crying really hard and gagging like she was going to throw up. She was FINE until then so I was shocked! I grabbed a plastic bag and held it under her, Joy kept driving, Kellsey never threw up and eventually stopped crying and acted fine. Throughout the day at the aquarium though, she would have a little crying fit and then after a few minutes she would be fine. She had a bit of a runny nose and felt a little warm so I thought maybe she was getting a cold and the gagging was from the post-nasal drip.

Friday night her temp hovered around 102 but her runny nose stopped and she was acting mostly ok, but she was really pale. Again I was waiting for her to get sick... Saturday we met our friend Stephanie for lunch and Kellsey got some mashed potatoes. At this point she hadn't eaten orally since her gagging thing in the car on Friday morning but her tube feeds were staying down fine so I didn't even think twice. She ate a few bites and then started crying and threw up. It was just minutes after her first bite. She cried for a few minutes, but she HATES throwing up so I figured that was why. Saturday night I tried some pasta and she did the same thing... So weird!!!

SO all the adults in the house were sitting around with me trying to figure out what it could be... Not a stomach bug or she would throw up her pediasure too. I was convinced of that. We talked about UTIs, ear infections and on and on but nothing made sense! I thought about taking her to the ER in Philly but I thought that either 1. they would think I was crazy because it made no sense or 2. they would admit her and then what?! Since she was acting ok as long as she wasn't eating by mouth, I decided to hold off till we got home.

This morning I got the kids off to school and took Kellsey to the ped. He immediately said "stomach bug". I said I didn't think so and explained why. He prescribed her some Zofran but I told him I still wasn't convinced. He said, "Well, I guess we could do an X-ray..." Yes. Thank you. He was totally pacifying me, I know.

So, I headed over to the lab where he decided last minute to order blood work as well, got that done then went over for her X-ray. They took one of her tummy and I saw something and said, "What's that?!" then we figured out it was her gtube lol. Then they did the chest one and it came on the screen and I said, "OK that is not her gtube!" Nope. But there IS something round in her esophagus. What is it? No clue.

So while I waited for a doctor to come in, I told them I would have to leave in a few minutes to pick Keeghan up from preschool. They didn't come, didn't come... I finally HAD to go. They caught me on the way out and said they wanted us to go straight to the ER. I explained again that I had to go get Keeghan and I would be back in 30 minutes. They weren't too happy about that but there is only one of me and even though my mom is still here, Frank's car isn't working so I'm it. I picked Keeghan up went to my house, my mom and Kennedy jumped in the car and she dropped us back off at the ER do she could have the van.

We sat in a room in the ER for about 45 minutes when the peds office calls and demands to know where we are because the ER is looking for us. I said, "Uhhh we are HERE. We've been here waiting to see a doc for almost an hour!" They insisted we weren't and we went round and round until they figured out I was at the OTHER branch of the hospital than they thought I would go to. I went back to the one where they took her X-rays and blood work, why would I drive 45 minutes across town to the other one?!

SO they ended up saying we had to switch hospitals because the GI doctor only works at this one... Whatever. So now we are here, Kellsey is admitted, and as we're going through paperwork they say they're not even going to do anything until morning. What?! So... Can we go home and come back?! Nope.

Meanwhile, Kellsey is acting fine, loving the attention from the nurses, and playing with toys. One of the docs from her peds practice came in and said he'd never have guessed she has a foreign object in her esophagus. He also admitted that her ped just ordered the tests to shut me up, but he would definitely give him a hard time tomorrow ;). Oh and there ARE two objects... One in her esophagus and one in her belly behind her gtube. So who knows what they are! I guess we will find out in the morning... 5am for repeat X-ray to make sure it hasn't moved and 6am for a scope. Her blood work also came back whacky with a super high Sed Rate, but he said we can talk more about that later. I'm kind of taking that with a grain of salt... Her blood work is ALWAYS whacky.


AND as I was typing, the GI doc called to get more medical history on her and is talking about maybe transferring her to Children's in Denver. I won't go into those details right now because it's long and complicated and may not even happen, but I'll post again if it does. In the meantime, please be praying for Kellsey tomorrow that they get whatever it is OUT safely and we can get out of here. I've been enjoying reading all the stories on Facebook about all the crazy things other kids have swallowed, I like that everyone is laughing about them now... One day we will say, "Remember when..." and shake our heads. Crazy girl!

I'll post again later. Thanks for praying.

update: They decided to do her scope tonight instead but we don't have to go to Denver so that's good! They'll be taking her back to OR in about an hour. I'll post when we are back to the room.