Hannah surgery update

I am going to combine a few  days into one post.  It's hard to get on here at the hospital.

March 23

Hannah is doing better, they might move us to the floor (2A) if there is a bed there today...still in some pain and guarding her belly...they are waiting for bowel sounds to feed her.
It's cool, we have 1 nurse shadowing the other today annd she goes to church with my in laws...chuck's dad told her she might see Hannah today!

March 24

Hannah is doing good, now waiting for more bowel sounds so they can start feeding her so far just a few gurgles...she was sleeping so sound when I came in they weren't sure why her monitors were going off...

Hannah is now sound asleep on a regular floor, finally on 2A...feels like home. :)

March 25

still waiting for Hannah to have a bm...a few more bowel sounds today but nothing signific ant...they said it's according to Hannah's plan but I told them I don't always like her plans LOL she can't get out of bed yet, too many tubes...foley catheter, mitrofanoff catheter (both draining in bags) and a drain bag for her gtube! she is just chillen though and doesn't appear to be in a lot of pain...

Tuesday

Hannah update...she started 5cc/hour of pedialite last night and increased it to 25cc this morning (one dr wanted to increase it to her rate of 160 from 5...I told him no way..the NP did the 25...now they are going to add some formula to it 1/2 strength to see how she tolerates that. so far so good, some gas but no bm yet. Since she has been here they do a lot of blood pressures, maybe every 1/2 hour..she gets agitated everytime so the #s looked high...then last night we realized she is not agitated and her blood pressure is really high, 146/113 is the last one. The medically complex dr thinks there is a connection between high blood pressure and a rash/hives thing she gets a lot...don't remember what he said, will ask when I see them again...I thought the rash thing was some type of stress..nephrology is consulting with the medically complex..whatever that connection is they are doing urine and blood cultures for it

Yesterday

Hannah update...the thinking now is Hannah has had high blood pressure for a while, they are going to do an echocardiogram to see if it shows that..so now we are going to have to go home with blood pressure meds...so thankful that we had this surgery to find this out. I just told her she can't be inpatient here anymore, we always leave with a new diagnosis or new dr (although we already see nephrology) They have to watch her for 48 hours since the new med can cause high creatinine levels. So we should be going home on Sunday...and they are increasing her feedings some more today and started her miralax...

Today: After a little help she finally had a blowout but in her wheelchair :(  She is still having blood pressures issues. She is now up to her normal feedings and we got to walk around the unit for a while.  Sodium levels are low so they are working on getting them up, so hopefully that won't delay us going home. 

  It's really nice having the medically complex team following her now.  Dr M handles everything and this hospitalization has helped him get to know her better.  Hopefully we are still on track for Sunday.

Surgery update

Hannah the morning after surgery

Yesterday was Hannah's mitrofanoff surgery.   When we got here on Monday (a planned admission) there were no beds on the floor we usually go to.  We spent most of the day in Day Med so they could get things started (IV, bloodwork, etc)  and finally around 3pm they put her on PICU.  Bowel prep went pretty good, took a long time to get her cleaned out.
 Surgery wasn't until about 2:30.  They expected it to last 4 hours or more.  He was surprised  that it was quicker.  Everything went well, if she didn't have an appendix they were going to use a small piece of her bowel, she did have an appendix.  there was no bleeding, they were concerned since she had a bleeding disorder, they had given her a lot of meds and fresh, frozen plazma before and after.  She also had a lot of urine, that was good after her kidney failure during her last surgery :) She did really well and had a good night. Her nurse was one we had after spinal fusion and she said  Hannah was doing like they expected after surgery, she said that is kind of scary!  we all laughed!
  today she seems to be in a bit more pain. They had to give her some ativan in between her morphone dose.  She is on her home vent settings now and off for a long time.  Her heart rate is up but her O2 level is really good.  she just seems uncomfortable and I don't know if it's pain or some seizures...they are staying on top of it though.
  Will try to update again.  Thanks for the continued prayers.

Surgery getting closer, finally!

I am  glad the surgery is finally here, admission for bowel prep is for monday.  Not looking forward to the bowel prep, surgery and recovery, all the unknowns :)  but will be glad when it is over and things are a lot easier on Hannah.  And me :) We started scheduling this surgery in October and finally now 5 months later it's happening.
  A lot of friends have asked what she is having done and why.   She is having a cathing stoma done.  They take her appendix, make a tube out of it and use that to connect her bladder and either her belly button or just outside her skin,  this is called a  Cutaneous Appendico-Vesicostomy or Mitrofanoff.   We have to cath Hannah's urine every 4 hours during the day and overnight the nurses leave a catheter in place and it drains in a diaper.  It's hard on her, she cringes every time we do it especially when we pull the catheter out.  I feel so bad for her but she doesn't really urinate on her own, she leaks urine and leaves a lot of residual.  The cathing and an antibiotic everyday keep her from getting UTIs.  She will still leak urine but it will be so much easier to cath her, especially in her wheelchair.  She will come home with a catheter in place for 4 - 6 weeks.  Her urine will drain into a leg bag and at night in a bag on her bed.  After that is taken out we will cath her the new way.    She will be in the hospital for at least  a week to 10 days.  The nurse said they start to feed them about day 2 and she has to tolerate her feedings and have a bowel movement before she can come home.  But we know how Hannah likes to make her own rules!
 Thanks for the continued prayers for Hannah and for our family.  Also pray that Sunday night when we call the ronald mcdonald house they have a room for me on monday.

Hannah's surgery

Hannah is being admitted for the two day bowel prep on Monday March 19th and surgery for the Mitrofanoff will be on Wednesday March 21.  Medical Assistance finally approved the two day inpatient bowel prep, Praise the Lord, we were all relieved!  I won't know what times until the day before each. 
  I am keeping her home til then because she has been getting sick and so has everyone else.
thanks for the continued prayers. 
BTW, I am a lot better at keeping facebook caught up than my blog or caring bridge.
joan