Feliz Navidad!

Food Matters Official Trailer

Autoimmune enteropathy. Her body's immune system attacks her own God given organs but doesn't protect her from a common cold. Just ask Hannah how much Food Matters! Time to shake up this world and wake 'em up!

October 2010

The First of Autum.

Holiday Horsepower Drive and Eagle Raceway

The importance of medcation routes

As most of you know, Hannah does not eat. All her nutrition is supplied and routed through various ports in her body.
    Route #1     a central line that goes straight to her heart.
                       Through this she receives her TPN and
                       various IV meds.
    Route #2     a G-Button that goes straight to her stomach.
                       Through this she receives her meds
                       for her Acute Gastritis and bleeding ulcers.
    Route #3     a J-Button that goes straight to her intestines.
                       Through this she receives her Neocate
                       formula and other meds that need
                       to avoid her stomach.

Over the years I have struggled with the mislabeling of some of her medications when it is concerning the route. and still struggle to this day with this issue even in her care plans with home health.

In May this article came out in the news from Omaha.....
Officials said 19-month-old Alicia Coleman died at Children's Hospital

Such a terribly devastating incident for all people involved spurred me into action when it came to Hannah's routes, so this is what we do now with a lil help of some nail polish :)
It has made life much more simple and as one of our nurses said "made our job easy!"

Our God is greater

cookies.wmv

CopleyCrew baking cookies :D This weekend marks 1 year since Hannah has been allowed to eat anything, yet she loves to cook

Love Story (Country Version) recorded by Beckie | -MySpace Karaoke

Check this out and watch Hannah doing karaoke :)

Love Story (Country Version) recorded by Beckie -MySpace Karaoke: "MySpace Karaoke video/audio recording of Taylor Swifts Love Story (Country Version), as performed by Beckie. Watch it on MySpace Karaoke. Think you can do better? Record your version now!"

Courage Is - The Strange Familiar [Full Song]

Nebraska Methodist College students, several of Zeta Iota Chi's (Nebraska Methodist College's Sorority) members and Campus Crusade, had over 30 people buy shirts and will be running in support of Hope 4 Hannah. What an absolutley awesome bunch!! Get out there and support them in their bright pink Hope 4 Hannah singlet Sunday May 2!

                                        

                                          Lincoln Marathon will end inside Memorial Stadium

click here to check out the story Lance Schwartz with 1011 out of Lincoln did on Hannah!



Lance's Journal with Hannah about Make-a-Wish

miss me? :)

Let me start this update by mentioning that with our recent change in respite care qaulifications, We have found a nurse who can work with Hannah for up to 20 hours a week. This makes me sooooo Happy!!  For 1, I have 3 other children. 2, I have my own medical issues that I have been neglecting 3... well you get the point.
 Hannah received her DX of Autoimmune Enteropathy after our visit in Cincinnati. It has been almost a year, and I am utterly shocked to still realize how rare and "still being researched" this desease is. I have, through a Facebook group page ( Hope 4 Hannah) found a handful of Moms from all over the world, that have children with this and are struggling for information just as much as me. In search of some kind of support group, realizing that the few of us maybe our only support group! I find how much  it is needed when the doctors skirt around issues, because they just don't know. Issues like being on an anti rejection medication forever (Tacrolimus in Hannah's case) which is comparable to receiving chemo, is the only treatment for this desease.
For the last 2 years, Hannah has been home schooled. She has not been able to eat for a year, she has a central line and is fed Tpn 24 hours a day and has formula feeds running through a J- button. The doctors have been battling keeping her prograf levels stable, and slowly moving up her feeds so she can stop the TPN. but now she has gastritis and an ulcer in her tummy from the bile back up. She continues to throw up at least 3 -4 times a day, mostly during med time. We have had numerous issues with her central lines! Broviac were just not Hannah proof and she would wear a pinhole in them constantly, we changed to a purple power line, which is resiant to breaking. That has worked well, but her chronic line infections have not fixed the need to pull and replace these lines constantly. they say she is multivisceral transplant canidate. so salvaging these lines are the prime concern. They believe her intestines are leaching bacteria in her bloodstream (like a colander) and setting up a home in her line.
When we left the hospital last week they told me her Bard polyurethane purple power central line was not compatible with an ethanol lock. But Thursday the Doc said she consulted with the other Docs on the other side of our huge planet. So Monday after her IV antiobiotics stop, and starting prophylactic ethanol lock therapy for 2 hours a day. yes, I will be injecting gas into my lil girl! WHAT NEXT! Which (like everything else Hannah deals with) does not have alot of literature on. So we are praying this works! and does'nt eat up the line in process!
She also has had issues with low hemoglobin. She had her second blood transfusion on the 19th, and last week it was running low again. As hard as TPN is on her organs, We have seen what putting nutrients into hannahs body enternally has done for externally. she has went from 30 pounds last year to 50 pounds currently, As well as put on a couple inches, She has grown all her hair back, She looks healthier now then when she was a baby.

Updates to come... I promise :)

Hannah is remaing stable, Doctor appointments in Omaha went good yesterday. I will update more soon!

Hannah's Wish is Granted!

 Make a Wish granted Hannah's wish Thursday with a huge all day shopping spree in Omaha. Hannah had a blast with her family, wish granter's, and her "body guard" limo driver.
 As her mother I can't express enough gratitude for giving Hannah the chance of a lifetime, it was truley a wish come true!

Home Sweet Home

After 19 days in the hospital, Hannah has come home!

 Long drive home was shortened with a long sweet nap :)

what an absolutley beautiful story Brian Mastre did on Hannah! We are so honored!

click here->  www.wowt.com/home/headlines/83772577.html

February 6, 2010

well we had a another rough spell, They started running TPN through Hannah's IV and it went downhill from there. Hannah's poor little veins are exhausted,  after finally getting a iv started Wednesday night, It only last 12 hours. After an emmotional episode our charge nurse was able to start another in her 1 and only vaible vein left in her arm. If this one goes they will try her feet next. They stopped the TPN and are running basic maintenance fluids through it now, to try to get this IV to last longer. She is now officially out of renal failure, Her kidneys and liver are back to normal levels. Her labs are still coming back positive for yeast in her bloodstream, so they still have her and antibiotics and antifungals. Thursday they did an ultrsound of her heart and found a thrumbos (blood clot) as of yet I have no idea what they are going to do about that. The Hospitalist has been consulting with oncology and cardiology. They think it's a source of infection for the yeast, so to give her an anti coagulant might put the yeast in other places they dont want it right now, but to leave it is also risky if it were to break off and move into her heart or brain.
    Yesterday was a nice calm day. with no TPN running she was much more comfortable and even got to go to Movie Night to go watch "UP" in the auditorium last night. They will be taking her down for surgery today or tomorrow to place a temporary line so they can start back up TPN. They said the line will just be temp, because they know full well it will get infected with the yeast, but she needs the access to give her her nutrition.
Hannah is the strongest person I know! she has done all this without taking ANY of the moriphine they have ordered for her.

Yesterday was a busy day! we all pushed Hannah a lil, and got her out of bed and into a bath, and even walked her to the playroom for a Game of WII with Dr. Dolterand Melissa. While she was busy I got a chance to go shopping with Sharon and Carole (Sharon's sister) Thak you Girls!! I so needed that :) When we got Hannah back to her room, She got a visit from the Rosenquest's. So nice to see people from home!! Makes me homesick. Then Channael 6 swooped in to do a story on Hannah and autoimmune enteropathy, which will air Sunday. Wow what a day, right?!

It wore her out, she ended the evening with a sore throat on top of her tummy pain. and then had 1 of her 2 iv's go bad and had to be pulled out. They started running TPN and lipids through the other (which is extremely painful and hard on your veins).

This morning Doc says he is checking with renal to see if her creatinine is low enough that her kidneys can handle contrast for a MRV of the veinous system, so they can map out where her new line will go. and get that surgery in the works. Her white blood cell count was elevated this morning so we are watching her sore throat closely. When you are immune compromised the littlest thing can go severe very fast.

We had almost 100 people join the Hope 4 Hannah Facabook group in 24 hours. Hannah was excited to see the numbers climb! Thanks so much for all your support!

Love, Blessings, & Barefeet,

Beckie

February of 2010 already....

Well, Hannah has been quite sick the last 5 days. Thursday morning Hannah woke up screaming and crying that her stomach hurt. I checked her temp and it was 103. I made some calls to home health and checked her temp again and it was 103.7. Called ambulance, by the time they got her to ER (which was not very long) It was 104.7. They admitted her to Mary Lanning and fought off temps all day. By the next morning they discovered she had staph and yeast infection in her Central line. and she was transferred by ambulance to Children's here in Omaha.

Hannah is septic, whichs means she is as sick as she possibly can get. the infection is in her blood and all through her body, causing all her organs to not function properly. Her liver and spleen are inflamed. Her kidneys are not functioning properly and she may have to receive dialysis. Appendicitis is also in question, but she is still to septic for it to be removed. They pulled out her brand new purple power line and she has 2 IV's (1 in each hand) to receive all her fluids and medicines. Yesterday she was more coherant, the fevers have stopped after they pulled her line, so that helps. Sharon's sister came out to visit and her and Sharon brought her some ballons which helped brighten up her room. I plan on trying to do more of that today to help cheer Hannah up.

I can't thank everyone enough for all the prayers we most certainly need it right now! And please don't forget to pray for Hannah's sisters and brother. They last time they seen their sister was when she was rushed out the door with 5 EMT's right b4 they left for school.

Infection Control: Precautions and Sterile Dressing Changes

This video needs to be watched by anybody who comes in contact with Hannah! and if you work at MLMH on the ped floor... watch it 2 times!! yeah I sooo went there!

snowday2010.wmv

The Life That's Chosen Me - Karen Taylor-Good

2010

well here it is a new year and all I can think is I am completly fried! Of course 3 days of stress, lack of sleep, and 650 miles. . . and thats just 3 days of 2009!! Not a day has gone by the last year that I dont wake up with the thought that I could lose Hannah. and yesterday was the cherry on top of my over the edge state when I had to listen to my heavily drugged baby scream in pain for over an hour. I just feel so damn helpless. Hopefully this new line will help us bring 2010 in with less trauma... thats all I wish for this year!