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Sunday, June 27, 2010

UAB Surgery Update

I just realized I never updated my blog about K's surgery this past week.  Sorry about that, was just to busy emailing updates, posting on facebook and HMMT to get here too. So anyway, K's update.

We arrived in Birmingham on Monday morning for K's pre-op appointment with Dr. Wellons, which led to a series of other stops here at the hospital, pre-admissions, and lab work being done. First thing we found out was that K's surgery had been moved to Wednesday morning at 7:30 am rather than Tuesday due to an emergency case coming in. It was a little frustrating but I am glad we did not have it Tues afternoon, because it would have made for a very very long day.  So bright and early Wednesday morning we were here at Children's Hospital (early as in 5 am!) and thankfully was one of the 1st called back.  Once we got back to the pre surgery room, we spoke with the drs and such and answered questions about K etc and then they took her off to get drugged up. Surgery was expected to start soon after but it was 8:30 before it got started, and they told us about 3 to 4 hours.  True to their word, right about 12:30 we found out the surgery was complete and was successful. The staff was great on updating us every hour to hour and half on surgery and K's status. 

She had to spend a couple hours in recovery while we waited on a room and bed to be available and it wasn't until about 4pm we got to the room and they finally brought her in. It was so great to see her, I was really  worried she would be hooked up to all these things but she only had her IV in. The worst part not being able to hold her. Dr Wellons came and talked to us right before we got the room and told us how everything went and thankfully he did not have to detach any nerves during the detethering. She still had movement in her hips, knees and ankles as before. He did have to leave a smaller version of the "hump" aka cyst so that the nerves would remain intact and everything would heal properly.  So she's had to be flat since surgery, on her stomach or on her side with no one picking her up. We've had to feed her while she's on her side and change her diaper with her on her stomach.  We've gotten used to that, but it still sucks to not pick your baby up when all you want to do is comfort her.

Overall she's doing well post-op with the exception of bladder control. She's unable to really urinate right now, could be the nerves are just irritated and swollen or it could be a side affect that she has to live with. I am hoping for the first and hope it resumes normal functions soon. Right now she has to be cathed every 4 hours and boy are the nurses having a hard time.  She's so small and swollen it makes it quite difficult and to think we are going to have to do this at home, sigh. I hope it's just short term, so please say a quick prayer on that.

We are waiting to find out if we are able to leave tomorrow (Monday) to come home. Dr Wellons  wants us to pick her up and hold her as we do at home to check for spinal fluid leaks in her incision area.  So far so good on that, so if all goes well we'll be able to return home.  I am ready, the girls are ready for us to be home as well. I'll try to update with more info later this week after we get home and settled.

Thank you for all the well wishes, thoughts and prayers for baby K and our family.

Friday, June 18, 2010

Tooth Fairy Visit

Hailey got her first Tooth Fairy visit last Wednesday and boy was she ever so excited! It's quite funny since her tooth just became loose or enough that she noticed it on the Friday or Saturday before. She's been complaining for months that her teeth were hurting but guess they were just loosening up for her :)

So the Tooth Fairy left her $5 for that special 1st baby tooth and do you know within an hour or so of getting up she lost the money!?? OY! Here is a picture of her the morning the tooth came out.

She doesn't look excited at all does she?

Tuesday, June 15, 2010

Countdown

We're in the final countdown to Kaitlyn's surgery, a week from today hopefully it'll be over and all will have went well. I am still having trouble processing that her surgery is next week. How did it get here so fast? We head down to UAB in the morning for her urology testing and also for a ct scan. I am not sure if we'll find anything out in regard to the test or if they will call us or wait until the pre-op appointment to let us know.  Her pre-op appointment is next Monday the 21st, so it's not that far off but I hate waiting. Hate.It.

We had to do a little scrambling to cover childcare for the older two girls since the surgery was sprung us earlier than we anticipated. However we managed to find some family to take care of them, though I am honestly not thrilled with the whole situation, but what's a mom to do? I am just going to pray about it and hope the house and my kids are still standing when I get back.

Miss Kaitlyn turned 5 weeks old today...and that's harder to believe I think than the fact of surgery being next week. She is much more alert these days is starting to focus on us when we're talking to her etc. I wish she would sleep a little better at night, but I know that'll happen in time. Sooner than later would be nice! ;)

Wish us luck tomorrow, will keep everyone updated when we know more info.

Wednesday, June 9, 2010

UAB Appointment Update

 Just wanted to give an update on Kaitlyn and her UAB appointment from yesterday. I know most of my blog readers already know all of this but a few do not :)

We saw Dr Wellons on Monday (the pediatric neurosurgeon) down at UAB and overall things went well. Originally we were told Kailtyn had a form of Spina Bifida called lipomyelomeningocele, but yesterday he told us she has Spina Bifida Occulta. She definitely has a tethered cord and he'll have to do the surgery to untether it along with removing the growth on her back. We were told the growth was most likely fatty tissue at HH NICU but he seems to think its more fluid than fatty tissue but I think she is considered to still have it, because she does have the growth and the spinal cord is attached inside of it.

We got to see her MRI and it does show the tethered cord but it also showed that her nerves were still attached which is why she can move her legs/feet so well right now. There is a chance that the surgery could result in leg weakness and/or Kaitlyn not being able to walk depending on if he has to cut the nerves or not.

We go back on 6/16 for an appt with the Urologist and also for her to get a CT Scan. Her surgery is scheduled for 6/22, but we have to be back on 6/21 for the Pre Op appt with Dr Wellons and then we'll stay there for the week.

The CT scan is being done to see if she has any fluid in her head, called : Hydrocephalus right now he doesn't think so but he wants to verify before surgery. If she does they will have to place a shunt to drain the fluid back down, and there is a chance she will need it even if there isn't currently fluid there, due to the surgery (since the growth may be fluid filled).

The surgery is expected to take about 4 hours (if no complications) and the recovery time is atleast 3 days, and she has to be flat on her back the entire time. So we'll be down at UAB from 6/21 thru 6/25 or 6/26 at the very least.

Thank you all again for your thoughts and prayers and please continue to pray for us and Kaitlyn.