June 30, 2009

well I just got out of a meeting with the docs. it looks like they r going to send us home for a "few days" b4 we go to Cincinnatti, so now I have to figure out how the hell we r going to get there. as if being here for two weeks isnt draining my account enough. obviously these people have no idea what it is like to be a single mom of 4. Im so sick of this constant battle... physically mentally emotionally....
3 hours ago ·

2 day training starts tomorrow for me to learn how to care for her central line and feedings at home. probably going home Thursday. Dr. Kocoshis in Cincinnati has been contacted and is receiving all her files. He is the Medical Director of the Pediatric Nutrition & Intestinal Care Center, and Small Bowel Transplantation Program.
8 minutes ago ·

Took these pics this morning, 1st time outside in 2 weeks!

Updated pics

June 27, 2009

Wow has it been a month already??! Here are some updates on Hannah from my facebook page...

Hannah's sick again... strep throat this time. weight down to 14.3kg.Started taking cefadroxil today, and now started throwing up.... I want to cry, but afraid I wont be able to stop.
May 30 at 2:30pm

Hannah's weight down to 13.7, she is still throwing up and not eating. on r way to see dr. @ 2:30. may be admitted. I'm really reaching out for your prayers right now... please
June 2 at 1:08pm

Hannah has been admitted to Mary Lanning Hospital.
June 2 at 5:36pm

we will b there a few days. her potassium is really low, and there is acid in her blood, maybe from the prednisone she has been on. She is on a heart monitor due to the potassium issues, last night was a long night!! and r lil hosp. does not have a bed for the parent of wifi, so i missing Omaha Childrens right now! Thx for all the prayers we really need them!
June 3 at 8:36am ·

still in Hosp. keep up the prayers, for my other kids as well , they r really struggling with this too.
June 4 at 2:34pm

Looks like Hannah will be in Mary Lanning through out the weekend. She is still not doing good. visitors welcome, it would help lift her spirits. Thx to all for all the prayers for r family.
June 5 at 11:31am

Dr. let Hannah come home today, we were having some issues with the hosp. following her diet. Lots of new diet changes and some meds changes so this week will be critical, on learning new routines and recipies. fun fun, lol
June 6 at 6:46pm

oh by the way, my van now has freckles like me!! due to r hail storm last night... damit
June 6 at 7:08pm

Getting ready to go to Omaha tomorrow to meet with a new dr. for Hannah. Trying not to get my hopes up, but feeling like we are on borrowed time.
June 9 at 5:35pm

Home from Omaha, but Hannah's on her way to be admitted to Mary Lanning again. Her ph is low and she is dehydrating again. will let u know more when I do.
June 10 at 6:33pm

Hannah is not doing good. She is still at Mary Lanning Hosp. they tried to let her eat some food yesterday, and it made her severely dehydrated even while on IV fluids and her feeding pump. Her Dr. is waiting for the Dr in Denver to call us back. I am not online there, this is the 1st x in 3 days. so call me or message my mom. Any volunteers to give my other kids some respite time would be greatly appreciated.
June 13 at 2:13pm

Dr. sent Hannah home to be with the Family today.
June 15 at 10:00pm

Beckie Copley is really frustrated right now!! Hannah's looking dehydrated again. called the dr. and he said stop her pump till 3 in the am. and call him in the am. I think she needs something now. her eyes are black again and she has lost .3 kg since yesterday. . . I am debating going with my gut and taking her to the ER and havin them draw some labs.
June 16 at 9:10pm

at 8:58am June 17
went to ER last night, her levels were down but not in the critical level (YET) so they sent us home with instr. to stop her pump and give her absolutly nothing until 9am. Hello!!!!!!!! this am she is even worse looking. she was barely able to hold up a bottle of water. I put pedialyte through her feeding pump at 8 and called the office, r reg. dr... Read More. is not in today and they want her to come 10:45 to c a dr who doesnt know her well. WTF!! I just left a message with the G.I. clinic in Omaha, her wt is down to 13.9 kg. I figure dr. in Omaha will admitt her up there. They dont seem to give up so easily, and that what I feel is being done here. send her home to be with her family, and then wash there hands of her. Well screw you!! we r not going down w/out fighting! I'll go wherever I have to go!

Omaha called. They want Hannah admitted. so as soon as my Mom gets off of work Hannah and I are headin to Omaha... I'm already missing my other kids!
June 17 at 4:01pm

rough night for Hannah last night, Her blood pressure is still running low. I'm mentally exhausted, I think I need to run down to the caffeteria and get a cappaccino... or 2
June 19 at 11:04am

Hannah is having surgery Mon to put a external central venous catheter put in. they are going to start feeding her by TPN.
June 20 at 2:34pm

Hannah turned 8 today. She was in good spirits despite feeling crappy and being in the hospital. June 21 at 11:21pm

Hannah went through surgery okay. Still struggling to keep her heart rate up, but like usual she keeps the docs amazed by her ability to be coherant and up and moving around despite having a heart rate in the 40's.
June 22 at 6:22pm

Morning! Dr. update, Hannah's electrolytes were low yesterday, so they up'd her TPN fluids. When they did, she was having severe pain in her central line area. Nobody knows why so they gave her a dose of pain medicine and she has been out ever since... it is 8:45, she never sleeps this late. Her heart rate is low, and murmuring. One minute they r telling us we might go home, then this. So sick of this roller coaster
Wed at 8:46am

well looks llike we may not go to Cinccinnati, they want to continue the TPN throughout the summer, at least 10 weeks w/out anything oral, to give her gut a rest and slowly reintroduce things to see if the healing time will make any changes. I'm going along with this 4 now, because it has never been done. But I dont understand how this will fix things. In my lil world of common sense, this will start all over again.
Yesterday at 10:10am

we're going to Cincinatti... we're not going... we are going, somebody please make up my mind!!!!
Yesterday at 7:19pm

at 8:23pm June 26
I just spoke with the G.I. doc. He has been combing through her records and consulting with emmunology. They gave me to names that they are thinking of. IPEX Syndrome and XLP disorder. They will be talking to Cinncinati Monday to see when they can take her. Like a dumb ass I googled XLP. now I just want to throw up... "XLP is an extremely rare ... Read Moredisease affecting only males . The disease is thought to affect less than 1 child in a million .The average age of onset is 2.5 years of age and nearly 75% of the children are deceased before 10 years of age."

I went Home Thursday and spent some time with Britt, Ash, and Anthony, then came back that night. I hate having to be 3 hours away, but what makes it easier is knowing Hannah is getting the specialized care she needs. My love and prayers go out to all of you who care to come here and read this... and even to the ones who don't! lol