Hannah update and new pics

our grandbabies Jonas, Logan and Taylor

wow, didn't realize I never posted an update.  Hannah was on the flagyl for C-diff for 10 days, we restested her and she is still positive.  Dr K started her on oral vancomycin friday.  They have to do blood levels for the vanco after 48 hours so now she is having bloodwork done on Sunday...thankfully she still has the central line so the nurse can come here to draw it.  She is going to draw the other labs too...I am a little concerned that her eyes are puffy gain but the nephrolgist that we saw last doesn't think it has anything to do with her labs...that's the bad part of seeing all the drs in clinic, they all do things differently.  Her bms had not been as frequent but now that she is on the vanco they are back and worse again :)  today I was going to cath her, she had a big  blowout, had to roll her from side to side to clean that one and she had a big sz (while cathing her) and that made her cough and need to be sucitoned...I laughed and told her there was nothing left for her to do at that moment LOL
  She was still having more seizures after we came home from the hospital so we changed her phenobarb back to 3 times a day to see if it helps.  they had changed it twice a day in the hospital after dialysis.  She is stil having some little ones  but it's only been 1 week since the phenobarb change. 
 She has an appt on wed for ortho followup, her nurse and PT are concerned about her tailbone being more prominent since surgery.
  I am tired of taking her to the dr, she has been to at least one appt every week since we got home after her spinal fusion stay 12/29...so far no appts the next week :)  hopefully it will stay that way :)
 She finally got her new wheelchair in feb!  After 7 months!  It is so much wider because of the battery tray on the back for her suction machine..have to make adjustments on it for hannah houdini puts her feet under the footrests no matter what we do.

in her new chair

 bracelets from 7000 bracelets for hope

 Hannah and Jonas

 in her new chair

 houdini's foot

 Hannah in her new chair and her new best friend Malachi in her old one

wearing her jeans for rare disease day

Purex Crystals

Have you tried the new Purex Crystals Fabric Softener?  Purex Crystals

Hannah is home

WE came home this afternoon...she is going to be getting citric acid now.  She is going to see dr kyle on tues and bloodwork...she also has an appt with nephrology on the 22nd...we love everyone on the rehab floor and miss them but are so glad to be home...she has been sleeping most of the time since we got home.

with her new unicorn that her new friend malley gave her!

logan 1/12/11  taylor 9/1/08 and jonas 11/5/10
And here is one of the first pics of our grandbabies together.  this is the first time that logan and jonas got to meet.,

hannah is doing better - thursday 2/10

Hannah and her starbucks  "bearista"  that Grandma gave her for Valentine's day.  Purple gown this time :)

Just realized I hadn't written since sunday, sorry :)   Yesterday her labs all looked really good. So they stopped her IV fluids and want to watch her for a couple days and make sure she can maintain him on her own.  Today her sodium was a little low.  She gets 1/4tsp of salt in her feedings twice a day for low sodium levels at home so they are adding that back today.  Her seizures are not as bad as they were.  We are hoping to go home on saturday.
  She was in metabolic acidosis again, it happened when she was in kidney failure in dec too.  'They added bicarb to her meds and she will go home on that this time.    The MA makes her breathe really fast but that has slowed down.
metabolic acidosis is a condition that occurs when the body produces too much acid or when the kidneys are not removing enough acid from the body. If unchecked, metabolic acidosis leads to acidemia, i.e., blood pH is low (less than 7.35) due to increased production of hydrogen by the body or the inability of the body to form bicarbonate (HCO3-) in the kidney. Its causes are diverse, and its consequences can be serious, including coma and death. Together with respiratory acidosis, it is one of the two general causes of acidemia.
  I don't know what the plan is yet for appts etc, will find a lot out tomorrow.

  Missing my grandbabies, they are all going to meet for the first time this weekend. My mom and Becky are taking Taylor and Landon to VA to visit jenn, bob and jonas.  I wish I could be there too but will have to settle for pics.

                                         Taylor 9/1/08 and her new little brother Logan 1/12/11

                                                                Jonas  11/5/10

sunday 2/6

Hannah's calcium went down and then back up again..they gave her lots of fluids to flush it out and keep changing her IV fluids and  still no formula yet.   Her creatinine has come down a little and now her potassium is low  so they are giving her some potassium...her calcium is high again so they are adding calcitonin now, that is a shot.  They are doing an EKG to get a baseline before they have her the potassium.  They still can't figure out why this is happening except to say that her kidneys are never going to be "normal" again.  They told us that when we left the hospital in dec.  She spiked a temp last night and it showed the same bacteria growing in her urine from before..they checked to see if it was colonized and it's not so she is on IV antibiotics for that.  They are consulting with infectious disease to see what oral antibiotic to use. 
  She has slept all day long and wouldn't even wake up when we moved her.  She was in such a deep sleep that she never wet her diaper, makes for a long time cathing her  LOL
  She is still having more seizures so I asked to see neuro tomorrow..we are hoping that is from her electrolytes being off so much.  So, now we are not sure what is going on or how long we will be here :(

Hannah admitted to the hospital!

Thursday Hannah had her appts at dupont.  We had bloodwork drawn, a renal ultrasound and waited to see the kidney dr...my first clue there was a problem should have been when the dr came in before the nurse did!  Her creatinine had gone up to 2.5 (was 1.5 last week, the level before was 1.0)  Her calcium levels had also gone way up..the dr said it's kind of like the chicken/egg..which comes first?  is the creatinine making the calcium go up or the calcium making the creatinine go up?  So he shocked me when he said she was being admitted,. she has been doing really good otherwise and I had just realized that she had been home over a month!  So we had to sit in the room in clinic and wait for a room to open upstairs..we finally got up here  about 4 and had to get her settled.  the ronald mcdonald house was full so they got me a room upstairs off the ronald mcdonald family room, they have 3 small rooms there.  I had to pick the key up between 5 and 7..finally was able to leave hannah and go home around 5:30, got in the car and out of the parking lot and forgot to get the key , so I had to come back, go the 3rd floor and get the key.  I had to run home, wait for my prescriptions at the drugstore, get some things packed and get back up here...finally got back at 11pm and had to help the nurse finish getting her info in the data base, finally got to go to sleep and couldn't  LOL
  they stopped her feedings and have been giving her IV fluids (changed so many times yesterday, the nurse said she got every flavor  LOL)  The levels are slowly going down but they still can't figure out why the calcium is so high...they are checking her para thyroid and something  with her bones to see if the calcium is from her bones...haven't seen anyone today, it is saturday in the hospital :(   I am still not sure what is going on and how long we will be here.  I was getting tired of coming up here for appts every week and told the nurse wed night, I hoped when we got here the levels were going to be really good and we could take out the central line and not come back next week!  HAH, didn't know we would have to stay, but I won't have to bring her back this week for an appt!  LOL
 will let you know more when I find out.

Hannah nephrology appt 1/25

I took Hannah back to the nephrologist on tues. at 10 am.  this time it was a  different dr and I really liked him.  they saw us first and we discussed everything and then they sent us to hematology to get bloodwork done since the hematologist wanted some blood too...they can draw it from the central line...they needed so much blood, the nurse joked that she was a vampire for the day :)  they told us to go back in  1 1/2 hours to check the results...we did some visiting, ate lunch and went back, blood was still "cooking"...so we waited and went back again...still nothing...finally they got the results...and were a little dissapointed..her creatinine was up to 1.5...when we left the hsopital it was 1.3  and two weeks ago it was 1.0.  they couldn't figure out why!  Her potasioum was a little high o they stopped that for now.  Her hemoglobin was up to 11 so we gave her the last does of epigen/procrit today (hopefully).  On the way home they called and said her calcium was high now too so stop one of her calcium supplements and hopefully that is why the creatinine was high.  but in case they are missing something, I have to take her back next week to have a renal ultrasound and more bloodwork done.  We finally left the hospital around 2:45 :(  so much for going out to lunch and shopping...I just felt bad for my mom, becky and logan because they had gone with us...and if I knew we were going to be that long waiting, I would have visited a few more friends!
 We are going back on thurs, this time...tuesday while the nurse is here with Hannah I am going to help becky take taylor and logan to the dr for check ups...
   Our nursing is having a few bumps. the sunday night nurse is not back so they are having a couple different nurses work. and tuesdays are confusing right now too...
  Hannah seems to be back to her baseline but she is having a few episodes of things that  I think are seizures but hard to get a diagnosis from the dr since she doesnt do it for them  LOL
And the good news is  her wheelchair was finally approved and has been ordered!  Yeah! she was measured for it in June and was put into MA in august!