WE ARE HOME!!!

Got home around 6:30 tonight, will post more when I get time :)

Going home on 'Wed!!!

The goal was to go home tomorrow but I wasn't comfortable taking Hannah home yet.  She started having a lot of seizures on Christmas day...I don't know if it is because we stopped one of her seizure meds over a week ago or not getting enough phenobarb.  I finally saw a neurologist late this afternoon and he is increasing her phenobarb dose.  There is a fine line with phenobarb and kidney function. So we will see how that goes, these aren't like her typical seizures, they are quick and its things like her eyelids fluttering fast.  She is going home on valium, just a small dose.
  Her kidney levels are going down, BUN is 53 (normal 7-20)  creatinine is 1.5 (normal 0.6-1.2)  that is the most important and they would like to see that down to 1.0.  So I suggested that we keep her central line in as long as we have to do extra bloodwork since she is a very hard stick.  We will have to change the dressing on it once a week and flush it daily.  Shouldn't be a big deal.   They did another renal ultrasound on her today and said it looked much better.  She is going home on lasix too.
  Her pancreatitis is much better, she has been tolerating her normal rate and amount of formula through her gtube since friday.  Hopefully tomorrow they will take out the G-J tube and measure her for a new "mini" button.
  She also had a spinal xray today for her appt in two weeks with ortho.  They have been pleased with her progress.
  They also put in a request for dental while we are here, pray they can do it tomorrow.  They dont accept hannah's dental plan here anymore but they think since she is inpatient it might be covered.  Pray that it is covered and they can do it tomorrow, otherwise I have to find another dentist to do her cleanings etc and that is going to be hard.  It  has been over a year since she has seen dental and for a child with cleft lip/palate that is important.
  It was my idea to wait til wed, we would have to be out of here by noon to get home for the nursing agency to be able to visit and admit her back into the agency without problems...nursing is such a pain but I am thankful I have it.  This way hopefully everything will be done tomorrow and we can leave early wed morning.
 It will be so nice to get home in my own bed and shower!  but I will miss having someone fix my dinner everynight and clean it up.

   We had a nice quiet Christmas here at the hospital.  Becky, Todd and Taylor were able to come for a few hours.  Taylor didn't even notice we were at the hospital instead of at home.  Santa came to see Hannah Christmas eve and brought her lots of presents.  I got a new small video camera for Christmas and was so busy with that didn't get any pics of taylor so I will have to get some from becky.

goal for going h**e is tuedsay!

I am afraid to say it too loud or let Hannah hear but if all goes well, Hannah may go h**e on tuesday. Praying that her nursing will be able to start back then.
  They are going to see if we can start her back on her regular gtube feedings.  Her pancreatitis is better.  She is a little anemic so she is starting taking some iron.  Her creatinine level is 1.9  (high normal is 1.2)  As long as things keep going down, that's good.  Still working on getting her sodium levels to stay up.  Phenobarb needs to be back at her home dose schedule and her antibiotic ends on Sunday. 
  Her spinal fusion incision still looks really good, only a bandage at the bottom where her diaper is.  He said we don't need to do anything special with moving her like we thought we would.
  Today we thought would be a good day to start wearing her regular gowns.  The antibiotic diarhea is better :)  so today she looks pretty in pink

dialysis catheter is out!!!

  the dialysis catheter is out!!!  look how long it was, ouch!

Hannah

Yesterday the  pediatrician said we are here for the holidays...I didn't like the "S" he put on the end.  I hope he just meant Christmas eve and day :)  Her kidneys are slowly getting better. Looks like a long slow process.  She hasn't needed dialysis since friday but they are still monitoring all of her levels.  Her BUN is still around the 60s and 70's (normal is 7-20)  Her creatinine is around 2.4 (normal is 0.6-1.2)  Her sodium is still low.  Her hemoglobin is low but not low enough for a transfusion.  Still on one IV antibiotic and Infectious disease are checking her cultures again.   Her lungs are staying clear and her O2 is good! Her heartrate is still high.  Pancreatitis levels are getting better.  Because of the kidney function they are constantly changing her feedings,  She is still on lasix and fluid restriction.  She has never been on diuretics before and we have never had to restrict her fluids, she normally gets tons of water.  They are hoping to take out the dialysis catheter later this week.  I am not sure what her levels should be to be safe enough to go home. 

Santa visits the kids here but Hannah didn't know what to tell them she wanted :)  Child life came around today and gave each of the kids a Christmas build a bear, she held on to it.  If I give her a stuffed animal she will hold on to it. 
  Just a quick note that we are on floor 2A  room 9.  Not in the PICU!  I am going home for the day tomorrow, getting a haircut, and need to wrap the few gifts I have bought.  Chuck is going to be here with Ms H to talk to the drs.

Sunday -low sodium levels

Hannah's sodium levels are staying very low...they keep giving her extra sodium but the level stays the same...her kidney #s are still about the same so probably no dialysis tomorrow. They did wean her off one of the diuretics today.  I laughed when I got back from dinner, this is what I found 

can you say attitude?  LOL

  this is her snugglie that i had my MIL make her

when she lays on the ladybug pillow pet she looks like she has antenas

rare pics of her smiling and laughing (I think they are seizures :( )

Hannah, maybe no more dialysis!

I am afraid to say this out loud, but the kidney dr was in and said this was probably Hannah's last dialysis treatment!!!!    Her urine output is way up and her levels are slowly going down but the urine output will help with that.  She said we will see how the weekend goes.  She is having a lot of seizures this afternoon but her phenobarb level is very low, it is dialyzed out.  They are giving it to her IV after dialysis instead of liquid.  they have also stopped her gabitril (a seizure med) to see how it goes..she gets 4 seizure meds and still has seizures.  they figured it was a good time while she was here watching her.  Although we watch her more a home than they can here :)  with that many meds it's hard to tell which are working which ones aren't.
Her pancreas levels are getting better too, they are changing her formula rate to get in a few more calories.  With Hannah there is a fine line between gaining and losing weight.  They are stopping the one antibiotic and the other one should be ending soon.
  Thanks for the continued prayers for us!  the nurses all comment on how calm I am and I told them it's because there are so many people praying for me too and I choose to be content while I am here. 
  I just realized that one week from today is Christmas Eve.  There is nothing like being in the hospital this close to Christmas to celebrate the real meaning of Christmas.  I have done a little shopping, I have finished for taylor (she is the most important one! :)  and most of Chuck's stocking stuffers but if nothing else gets bought I am not going to stress about it!
  the hardest part for us being here an extra week is that hannah's nurses aren't able to work for us...we miss them and I want to thank Mary for coming and sitting with Hannah so I could get out yesterday!

wed.

Hannah is doing better, no fever since last night, dialysis was good today, no problems and took off a lot of fluid. She is on two antibiotics now and they are changing her formula. She did start having seizures again today, the valium must have been helping :)  Haven't heard any blood levels,, they will probably do that tomorrow.

monday

Hannah had to have another blood transfusion today, they gave it to her during dialysis.  3 different dialysis machines broke today so they didn't get to finish.   They are checking her levels and if they are still high they will come back tomorrow to finish it but if they are ok, they will just wait til wed.  She gets dialysis Mon, Wed, & Fri. for 3 hours.  Her BUN and creatinine levels are still very high.
  She is still running a fever so they have cultured all her lines, her central line has 2 catheters and her dialysis line has 2 catheters too.  Not sure I am saying that just right.
I talked to her again today and told her she needs to stop throwing different things at us so we can go home.  It's been 2 weeks today and we have no idea how much longer
 This pic was enhanced by a friend of mine, I love it, you don't even see the blue spaceship gown :)  someone needs to design better looking gowns for kids.  the littler kids even boys wear purple ones.

Sunday

 this moning:  Even though Hannah is doing better and they are getting urine from her it is still not enough..the dr was just talking to me and it's her levels like her BUN and creatinine that are still high, about 10 times what it should be...she does look great though!

Hannah is running a temp of over 101...they changed antibiotics today, can't even pronounce the new one...infectious disease came in again :( not good...the UTI is clear but it's something weird in the trach culture...tons of secretions today but lungs still sound good through all of this.

Hannah saturday

I took this pic on friday when they finally took Hannah off the vent.  She was moved to the rehab unit Wed afternoon ( this is where we always are when she is in the hospital, all the trached and vented kids come here)  They finally got approval for her to get up in her chair too...we had to move the headrest up about 3 inches!  She looks good in her chair as you can see.
  She is still getting dialysis 3 days a week for 3 hours.  They are cathing her every 8 hours and are getting about 100 to 150cc each time.  That's much better but she still has a ways to go.  When we cath her nornally we get between 100 and 500cc depending on how wet her diapers are...she is not having any wet diapers right now.  the nurse said overnight she had a poopy diaper and wet and only got 50cc...not sure about that since she hasn't wet any other times.   The dialysis is not going well, her catheter is in her groin and is very positional, so if she just moves a little, it alarms.  The bms are getting in the edges of the dressing that holds the dialysis catheter in place.  She had been having blood pressure drops and seizures during the dialysis but friday that was better.  Her weight is slowly going down too.
  She started having large antibiotic diarhea yesterday, she is on a strong antibiotic for a UTI.

 She got a G/J tube yesterday.  It looks the same as her gtube, just has two ports on it.  Here is a good explanation of a G/J  tube on a blog that a mother wrote  G/J tube This will help give her tummy and pancreas a rest to heal.  They weaned her off the TPN today and she is up to a rate of 40cc an hour continuous on the Jtube.
 I asked the hospitalist pediatrician how long we will be here and she thinks it may be two weeks. I think it all depends on how she does each day.
  Sorry it too so long to update.  I had to run home two days in a row so my week has been really messed up.  I have been having trouble with a crown on a back tooth for a while, after Jonas was born I went to the dentist and she said it had slipped, so she put it back.  She also put a temp crown on another tooth on the bottom left.  wed, our old dentist (takes our dental insurance again) fit me in so he could look at the crown.  It hadn't slipped this time, there was a fracture in it and a very deep root had gone bad causing a very bad infection.  He finally ended up pulling that tooth but I couldn't  eat on that side for a couple days. I knew that as going to be  a problem.  The other dentist office called while I was getting my tooth pulled and left a message that the crown was in.  I called her right back to see if she could do it while I was that close but she had already left for the day :(  so that night, the temp crown came out and I had to run home again on thurs to get it..thankfully that is done and I am feeling a lot better.  Wed, Hannah's home nurse Mary came and sat with her while I was gone.  Thurs my sister in law Pam came to watch her but we got back here only about an hour after she did, I didn't want to be gone too long, it's too important for me to find out what the drs are saying right now.  I don't like leaving Hannah alone long in the hospital, but I don't think anyone else can understand how important that is unless they have had a child in the hospital before.  It's hard enough leaving her to go sleep at the r mcd house.  I usually get here about 8am leave for dinner at 5:30, come back and stay til about 9.  I like her to know someone is here.  she is rarely out of my sight even at home.
Here are some more pics from this week.

This one is before we move the headrest.  And a warning this next pic I took friday afternoon of he incision.  It looks really good.  I forgot to get one the first time he took it off. 

http://www.itsthoughtful.com/christmas-gift-contest/29914/ln/

http://www.itsthoughtful.com/christmas-gift-contest/29914/ln/  if I can get 15 people to sign up I get a $25 amazon gift card, do the same and you can get one too!  :)   I know someone who did and it works, great just in time for christmas gifts!

Hannah tuesday

Hannah is doing better.  When I got back from dinner last night they said she had 3.5cc of urine..yay!  during the night they got 6cc and today they got 11cc!!!  such a tiny amount but it's a good start.  She is off the continous dialysis and is on it for 3 hours a day right now.  She was only going to be get it Mon, Wed & Fri  but she was puffy this morning and her BUN and creatinine levels were still a little high, dialysis today was only 2 hours but they took off 700cc of fluid and her face isn't puffy anymore.
  She does have pancreatitis which is a common side effect of spinal fusion.  She is on TPN (total parental nutrition) right now, that gives her all of her nutrition through an IV to give her stomach and pancreas a break.  Hopefully tomorrow she is going to get a J tube instead of her usual G tube.  the J tube goes into her jejunum and bypasses her stomach.  This will make it easier to feed her and give her meds while she has the pancreatitis.
  She has been running a temp for a couple days, not good when you have so many lines going into your body.  They think it may be a UTI, she had a positive culture when she still had urine last week.  They cultured the tiny it they got this morning and it was still positive.  She is on an antibiotic for that.
  She is still on the vent, with a little oxygen, not sure why they haven't taken her off, I think that is the goal.  She has a vent at home but uses it mostly at night and sometimes during the day.
  She has started having seizures again, I think she was just having different seizures before, but a side affect of  dialysis is seizures, so you have to balance that out :)  today I haven't seen as any as I did yesterday.
  Aside from the kidneys she is actually doing well for spinal fusion.  We may be moving to the rehab floor in a couple days.  I just wish she could get out of bed, but with the dialysis catheter in,she can't.
  I have met so many nice people in the last week and it;s been nice to be able to talk to some of them for a while and share experiences.  I am thankful that hannah doesn't know what is going on and is comfortable where she is at the time.
 Tomorrow, wed, I have to go home and go to the dentist, I have a crown on y tooth that is slipping and has to be fixed.  It wouldn't be so bad if I didn't already have a temporary crown on the other side :)  so Hannah's home care nurse Mary is going to come and spend the day with her so she isn't alone, especially if she gets the J tube tomorrow.
 thanks so much for the continued prayers for us, we can feel the and I am at peace that we are where the Lord wants us to be right now.  Needless to say we are going to be here longer than the two weeks we had originally planned.
  If you would like send Hannah a card, the hospital has a free card service, they print them and bring them to her room.   ecards   She is in room 2717 right now.  Please make sure you add your name, we got some with out a name on them :)   thanks again and Hannah sends love and hugs to everyone!
 a pic from today, kinda dark and is anyone else getting tired of the same blue gown?  :)

Hannah update saturday

Hannah is still on dialysis, no urine yet, but they are going to try taking her off it for a while  (when her weight goes down some more) and see how she does. Her swelling is going down a lot and they are taking a lot of fluid off her with the dialysis. thanks so much for the continued prayers. If you want to call me you can private message me and I will give you the phone #
  She is still on pain meds and valium for seizures so she is still sleeping a lot, that's good because I would be afraid she would pull some of the wires and tubes out.  She had a really low rectal temp today so she is under a nice bair hug warming blanket.

Hannah update

surgeon was just in and changed Hannah's dressings on her back, everything looked really good. She is doing like she should 4 days out from surgery except for the dialysis, still no urine.

Hannah Thurs update

Hannah sedated and swollen from surgery

                                               peaceful but swollen

where the dialysis catheter goes into he groin

some of the lines going in her body

her dialysis circuit close up

with her Christmas snuggie mom mom made her

another view

the bags at the bottom

I waited for them to do rounds today before updating. Hannah is in acute renal failure, the renal dr thinks that something happened to her blood flow to stop her kidneys and she thinks they will eventually start working again, she has to stay on dialysis(and in the PICU) til she starts making her own urine, they are cathing her every 12 hours but still no urine.

Other than that she is doing like she should be 3 days post op from her spinal fusion. Most of her swelling is from that.

Hannah update

just realized I didn't get a chance to update here last night, facebook is so much easier to post quick updates, sorry.  so I am going to try to put the all here.
last night
so far Hannah's lungs are still clear, it's just the outside of her body that is puffy..the dr explained they don't do dialysis for cosmetics :) we need to continue to pray for her kidneys to start working again. This was a good article about kidney function http://www.medicinenet.com/kidney_failure/article.htm hey are going to start the dialysis tonight before she gets into crisis mode...her BUN and creatinine levels are higher now. they were starting dialysis when I left. Hannah is ok and so am I. this is from this morning
just got here, no big changes today :) she is on dialysis for now. I feel like I have to say Hannah is not dying her kidneys just decided to stop working for now. thanks so much for the continued prayers! I am really at peace with everything and know that she is getting the best care she can right now.