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Monday, August 30, 2010

THANK YOU THANK YOU THANK YOU!!




I just wanted to thank all of you that called, checked in, emailed, texted, sent mail and gifts and donated to us while Delaney was in the hospital. It meant more than you will ever know.

We finally got home around 11pm on Saturday night. It was a mess and we were not at our goal to come home but the doctor that came on for the weekend decided to take it upon himself to derail the plan we'd put in place over the whole week. Oh well there's more on that topic on our care page. (www.carepages.com/carepages/delaneylower)

While inpatient we did finally get our acceptance from Dr Shoffner in Atlanta. We have appointments on Tues September 14 for testing and lab work and then at 9am on Wednesday she's going into surgery for a lumbar puncture and muscle biopsy. It's an out patient procedure but we're planning on being there the week. So for now we're trying to get finances together to drive to Atlanta and back and stay there for a week and feed ourselves. My parents have stepped up to take care of the big kids (thanks!!!!!) and we have gotten some donations to help with the trip but we're still trying to get it all together. We have also had to pay several hundred dollars as a deposit on the surgery and the fee to re-read the MRI. It's a lot to deal with in a short time frame!!! The fundraiser we did has been super helpful getting some of the huge deductible down and getting her stroller and car seat and some other equipment we needed for her and we're so grateful for that. Unfortunately the fundraiser money has already gone away!! :( So I'm working my tail off trying to get the money together for this trip. So if you can help out at all we would be eternally grateful. This trip is so important in getting a diagnosis (FINALLY) for our little girl in order to get her the care she needs.

We have been so blessed by so many people who love us. I don't know that I'll ever be able to repay all that has been done for Delaney. It warms my heart every time I see that someone has taken time out of their day to donate or send a card or little gift to her. It makes me realize that we're not fighting this battle alone. You're all out there praying and cheering us on. I love you all for that!!!

Thursday, August 26, 2010

Update

Tomorrow will be one full week in the hospital and here's the update:

She's still on antibiotics but they've been switched to oral (or GT in our case). We are still here though because she's still working on feeds. We knew this would be a big hurdle. As much as we don't want to be here we really don't want to go home before we get that worked out because that's what's been going on for the last month at home! She did great on continuous feeds but as soon as they moved to bolus feeds things got a little hairy. She did great on 90mls over an hour but then as soon as they tried to move beyond that she started getting stomach upset. Today we've been at 115mls over an hour and she did okay for the first feed, then the second one we had to stop it at 90. The third time she took all 115mls but she was asleep and woke up crying around 100mls. We just let her fuss since she wasn't tugging at her tube or grabbing her stomach like she was before. The time after that she was about the same. She fussed around 100mls but not enough for us to stop it. We talked to the attending and he said that if she continued to have problems like that overnight we'll increase her Erythromycin dose tomorrow. We talked at length about what our goals would be and the biggest goal is to get her on 4-5 bolus feeds during the day and no feeds at night. In order to do that we'd have to get to 150ml over an hour. We are really, really far from that goal so it looks like we'll be here a while figuring this out. If by next week and upping the Erythromycin we still can't get her there the plan B goal is to do 4 bolus feeds during the day of whatever she can tolerate and then do the rest overnight as a continuous feed. So that's feeds. It'll keep us here about another 4-5 days at the least.

Here's the other little bit of news we've gotten since we've been here. (Please insert sarcasm here!) Genetics is finally on board with the high possibility of a mitochondrial disease diagnosis. When we got admitted we sent an email to our genetics counselor about wanting a referral letter from them to send with Dr Shoffner in Atlanta since he's one of the top experts on mito. and we'd like her to be seen in his clinic. Interestingly enough first thing Monday morning our geneticist Dr Smith came in and reamed Kathy for jumping so quickly (we've been trying to get her diagnosed since March) to mito. She went on an on about how there's no way she has it and we are going to get labs to prove that she doesn't. So she stomped off as quickly as she stormed in and then wrote orders for about 5 mls of blood to be drawn for various things to prove that there was no way she had mito. They drew the labs (4 sticks -another story)and then Tuesday afternoon Dr Smith storms in again singing a different tune. Two of the lab results are back and they both point STRONGLY in the direction of mito. Why will doctors never learn to listen to a mom? Grrr. More specifically, for my medically minded friends, her CPK was 993 (normal is 60-305) and her lactic acid was 4.6 (normal is 0.6-2.1). Both of these indicate there is significant muscle damage or wasting. So now Dr Smith has written said referral letter and it looks like we'll be headed to Atlanta within a month to see Dr Shoffner. That visit will include a bunch more tests as well as muscle and skin biopsies. I don't want to have to put her through all that but I also feel like we have to get a diagnosis. If she does have mito. we need to know which one because they all have different therapies (no real treatment or cure) and life expectancies.

Yeah, I said life expectancy. So basically the way Kathy and I feel is that if there is a test or procedure that can tell us how long we have with our daughter we need to know. It changes how you'd parent a child if they're not going ever be an adult. I also will do whatever I have to do and sell whatever I have to sell in order to not have to work extra shifts every single week. I'll cherish every moment I have. I know I should do it anyhow and I know after going through all this I'll cherish every moment with all my girls. Life is just too short and you never know what could happen. Nothing will ever be more important than spending time with these kids.

Videos from the hospital

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Hospital Stay






Sunday, August 22, 2010

Hospital Stay #5 this summer




This is a rare post by Jess instead of Kathy. Kathy's a little less available right now and posts mostly over at Delaney's care page instead so I thought I would make sure this information got over here as well.

So Delaney is in the hospital AGAIN! This is the fifth one since May. I can't begin to tell you how exhausting it is to be doing this all the time. They're all for different things too. In May it was in St Louis for a 3 day video monitored EEG. Early June she was admitted a couple nights because she had a respiratory infection that required oxygen. In late June she had her g-tube placed so she was inpatient for a few days for that. In mid July she narrowly escaped admission for kidney infection and sepsis because I begged the doctor to give her IM antibiotics and let her go. She did, mostly I think because mom's a nurse! Admission #4 was earlier this month due to an anaphalaxis reaction to peanuts. That one was just overnight. Then that brings me to this one.

Thursday Kathy noted that Delaney just wasn't herself and that she had a peculiar odor coming from her g-tube site. We have actually noticed over the last couple weeks that it was a little gooey sometimes but we were cleaning it twice a day and she didn't appear sick at all. Although we have been having feeding issues the last month or so since her sepsis. Delaney just wasn't herself and her breath was smelling foul too so she thought she should just get her seen just in case. Thursday night she started having a low grade fever too so we knew we'd made the right decision. The appointment was Friday at 1:00 and Delaney for some reason was in a great mood! Kathy even commented to her best friend Kate that she should just take her home because she seemed so well! The doc was concerned about her site and was able to squeeze puss out of it to be cultured. He was also very concerned about it in conjunction with the feeding issues as well. So she got her blood drawn to check her blood count for infection as well as her electrolytes for dehydration. They also did a blood culture for good measure. Then he sent her to radiology to have a dye study done to make sure the g-tube was in the right place. I was working that day but was able to get my assignment covered so I could clock out and join them in radiology since he was already talking iv antibiotics and admission. I met them in radiology for the dye study and then we went back up to the clinic. The doc had some prelim. lab results by then that definitely showed that she had a staph infection in her site. That means IV antibiotics. By 4:30 pm Delaney was in a room on the 4th floor. Kathy had the kids with her so I took them back to the house and got stuff for Kathy and Delaney to spend the night. We went back up there around 6:00 with dinner and stayed about an hour and then I brought the kids home.

That first night we learned that she'd be inpatient for about 7-10 days for the antibiotics and while she was there they'd make sure GI came to see her about the feeding issues she's had. The next morning GI came and was very concerned about the motility of her intestines and also the slow stomach emptying. They increased one current med to twice a day and added another med to be given three times a day. By the end of that first full day (Saturday) the stay was being estimated at 10-14 days and might include a few more trips to radiology to check out how her digestive system works. They started her on continuous feeds at a very slow rate Saturday afternoon and decreased her IV fluid rate. She had a pretty decent day but was really low energy and really pissed about the IV in her foot. Oh one more thing they noticed Friday night and Saturday! She has funky blood pressures. Her systolic (top number) is a lot higher than her diastolic. The difference between the two is supposed to be about 30-40. Hers is about 70! Apparently this can be indicative of septic shock or a heart defect. They're continuing to monitor it but aren't doing anything about it just yet. My thought is that if it continues after several days of antibiotics she might be getting another echocardiogram. We'll see.

Today they're still increasing her continuous feed rate and decreasing her IV fluid rate. We're hoping the IV fluids are done soon! She'll meet her goal on continuous feeds of 30 ml/hr today and they want her to tolerate that for 24 hours before they start trying bolus feeds. I already know she can tolerate continuous feeds. We'll see how she does! The other development for today is that they are concerned that she might have hirshprungs. In order to find this out they'd have to do a rectal biopsy. We're hoping that she starts having some normal poos (she never has before but you know . . . ) so they don't have to do that but time will tell. They are also transferring her to GI service tomorrow from general medical service since the infection got her in but now that they see her they're realizing that she has some major GI issues. We've been concerned about her GI issues since she was a baby but no one ever listened so it sucks that it took this but I'm glad she's finally getting some attention. I just hope this doesn't turn into a bigger deal that involves weeks in the hospital and a bunch of invasive procedures!!!

Oh and to make matters worse - the big girls are sick!! Julia came down with a fever yesterday morning and Char followed suit last night. So I've been sequestering them from their sister. That's been hard. The fevers have broken for now so I'm crossing my fingers that they stay that way so they can visit their sister on Tuesday when I'm off work. Otherwise I'll be sequestered from the baby as well.

So that's what is going on for us right now! Several people have asked how they can help out and so I've swallowed my pride and come up with a few suggestions:

1. Hospital food stinks! It would be lovely if you would bring some food to Kathy. If you want to know when would be a good time please just call, email or text Kathy or I and we'll let you know!
2. Visitors are always a welcome distraction. The best time to do so would be late morning, around lunch time before 2, and evening.
3. A couple people have called the Children's Mercy gift shop and bought a little toy or balloon for Delaney to be sent to her room. She gets a big kick out of this and it lightens Kathy's spirits as well.
4. It's a financial strain to be in the hospital and I'm trying my best to keep working but that's not always possible. If you go to the top of this website you will see a yellow donate button. It directs you to pay pal. Anything at all would be helpful.

Okay that was painful! I hate asking for help but with all that's gone on it's just necessary!!! I'll do my best to keep this as updated as possible or you can always go to www.carepages.com/carepages/delaneylower and see her care page. You have to sign up to look at it but they don't send you email or anything. It's just so you can get updated (if you want to) when her page is updated.

Wednesday, August 18, 2010

Tuesday, August 17, 2010

Energy for Life Walk

We are walking in the Energy for Life Walk. We are trying to raise money for Mitochondrial Disease research. Although we are unsure if this is the path that Delaney will travel we do know that several of her friends are walking this difficult journey. Please come join us on "Team Delaney". You can donate and/or walk with us and buy a shirt. $1, $5, $10 makes a huge difference. This particular disease has so little research being done...and research is the key to treatment options!!!!!!!!!



www.energyforlifewalk.org/kansascity

Thursday, August 12, 2010

Cards...Cards...Everywhere

Charlotte and Julia have taken on a huge task this year...they are doing a "Year of Service" and have chosen to send cards, crafts, and gifts to sick children and their siblings. So far they have 17 kids on the list. They make cards or crafts for 1 hour after school every day. They are putting their hearts into this project and we are SO very proud of them. Today they delivered their first package to a friend who has been struggling with allergies. He and his sister loved their special handmade cards and the glow sticks that the girls included in the package. I know that it makes our girls feel more empowered to help others...especially other kids. It also makes them aware of the daily struggles of other children and their siblings. If you have anyone you would like us to add to the list please get in touch with me! Also if you have any 8x10 or 5x7 envelopes, crafts, or art supplies you'd like to donate to their cause please let me know.

Also I wanted to share that we have started a "Thinking of you" wall or Delaney. It's behind her medical changing station where we do diaper changes and gtube care and feed hook ups and medicine. We started with pictures we took in Virginia of her, her sisters, and her best friend. We added things as she received them in the mail. It is amazing how quickly she has added to her wall. She LOVES all the pretty cards and small gifts. Gosh...she carries around the Bear that Amara sent her. She actually kissed the card she got from her Cole's Foundation Sponsor sent her. She wears the reuseable gtube pads Nicole sent her. She sits on, lays on, and carries around hr Bearghan that Heartmade Blessings sent her. I know if she could talk she would say THANK YOU!

Friday, August 6, 2010

Julia My Dear

Last night Julia called us from Utah. Here's how the conversation went...

Julia: I had a nosebleed today before the ski resort.
Me: Oh no! Are you okay?
J: Yes. And guess what?! Everyone waited on me instead of leaving me at the house. That's what family is mama...they stayed with me.
M: That's so great Julia. I"m glad they all waited for you. Did you have fun at the ski resort?
J: YES! I even did a backflip on the trampoline bungee thing. Let me tell you that hurt and it was so hard. Don't ever try it yourself mama. You might get real hurt.
M: Oh okay thanks for the warning.
J: Then we came home and the kids all played downstairs. I found a white sheet and wore it like a ghost. I thought it would be neat to be a ghost.
M: You are so creative.
J: Yeah except I couldn't see so I ran into the wall but don't worry I'm okay I just busted my head open and bit my tongue.
M: Oh no honey that sounds awful.
J: Oh no there was just a little blood in my mouth and on my head.
M: Goodness gracious darling. Take care of yourself

She is such a mess but such a WONDERFULLY amazing energetic caring compassionate creative kid...

Thursday, August 5, 2010

Charlotte My Love

Charlotte is a literal kind of kid.

She started her school work, by choice, last week...before her vacation to Utah.

She did her grammar and remarked several times that I picked a tough curriculum. One particular page was bothering her...I'll share a few of her responses

What do these mean?

1. A bird in the hand is worth two in the bush.
It is easier to see something than do something.

2. Don't put all your eggs in one basket.
Don't take more than you can handle.

3. The squeeky wheel gets the oil.
Talking about your problems can solve them.

4. A rolling stone gathers no moss.
You can't attract things without waiting.

5. You made your bed you lie in it.
Work hard then relax.

I love her.

The Love of Strangers

Delaney received some gtube pads earlier this week from N. She is one crafty lady. They are SUPER SUPER cute and the card she sent was amazing.

Delaney also received a package in the mail this afternoon. In it there was a letter that reads..

Dear Delaney,
My name is Peyton. Someone told me that you are being very brave right now, but it can still be scary. I have been made by lots of people from far away places to help you feel better and not so alone!
When you are feeling scared or sad or just tired of all the trips to the doctor, cuddle up with me and feel the love that went into each stitch. I hope that this bearghan will remind you that there are those who love you and want you to get better real soon.
When you cuddle with me you can feel the love that was put into each stitch, like a hug fom all of us!
Hugs and Happy Thought
B.C.
On behalf of heartmade blessings.

Monday, August 2, 2010

Energy For Life Walk

When: September 19th
For What: Mitochondrial Disease Research

You can join our team as a walker or a virtual walker. It is free to join and we just ask you to try to raise at least $20. You can also purchase a team shirt that will have Team Delaney printed on the back. The shirt is only $7 and can go towards your $20 goal. :) You don't have to walk to buy a shirt. You don't even have to live in the state! lol

Please let me know if you are interested in join, donating, or buying a shirt so that I can get that information to Jess.

We would love to see everyone!