Tuesday, June 12, 2012

Finally Home!

Walking for the first time post-op!
After my interview with Dave and Carol we started having a roller coaster ride of events right up until Caitlyn was discharged.  The day after the interview we were finally able to remove Caitlyn's catheter and right away she went to the bathroom on the potty!  Before heading into this surgery Caitlyn was completely potty trained so seeing her using the big potty after eight days of being bed-ridden was very nice to see.  She was even trying to bear some weight on her legs in order to get to the bathroom.  It wasn't much but it was definitely a start!

However, we also noticed that the bruise at the end of her knee starting to get bigger and grow darker.  Thankfully, she had surgery scheduled for that day and Dr. King was able to take a good look at her incision and her knee.  He thought her incision and her knee looked really good.  The areas of concern on her thigh were no longer concerning and I was excited that all she had was a bruise, nothing more.

On Saturday, my husband made the trip down to spend a few days with us.  It was a wonderful reunion and Caitlyn was so excited to have her daddy with her again!  She much have been excited because she didn't fall asleep until midnight and was up again at 5am, then back to sleep at 7am for only an hour.

Caitlyn was approved for a 6 hour pass from the hospital; so, on Sunday we took advantage and took her to the Milwaukee County Zoo.  It was 92 degrees but we didn't care and neither did Caitlyn.  We were just so happy to be getting out of the hospital for a while.  Caitlyn really enjoyed her day at the zoo and she just couldn't get over all the monkeys!  Monday was Memorial Day which we usually spend with family out at the cabin and on the pontoon.  Instead, we requested another pass and took Caitlyn to Mayfair Mall for some shopping, candy, and ice cream.

Tuesday came and Caitlyn had another trip back to the OR scheduled.  The plan was if everything looked good the we could go home on Wednesday, as long as she did well overnight and her fluid output into her two JP drains didn't put out a considerably high amount. During surgery, Dr. King removed the VAC machine and covered her leg in gauze and wrap.  When he came out to talk to me all I got was conversation full of disappointments.  He confirmed that the skin on her knee was indeed dying so we would not be coming home the following day and possibly not at all for the rest of that week.  He didn't know at that time whether this would end in a skin graft or not.  Also, there were a couple of areas on her incision on her thigh that did not look very healthy either.  The only good thing that came out of that discussion was the fact that her skin was indeed healing down to her muscle instead of just being a large skin flap covering her leg.  I left that conversation feeling incredibly defeated and so full of sorrow.  I just wanted so badly to bring my baby home where she belongs. 

Enjoying the zoo train ride with her new baby tiger
Dr. King came in for a visit Wednesday morning and we made up a plan:  Thursday he would stop by and remove all of her dressing at the bedside.  If she looked healthy enough then we could go home and come back on Wednesday for an appointment in the clinic with possible surgery on Thursday if she needed it, in order to correct the unhealthy skin and fix her incisions.  If she didn't look healthy enough to go home then we just stay at Children's until she is.  In order to add some fun to our day, since we weren't able to go home, Peter and I decided to take Caitlyn back to the zoo.  We weren't able to see all of it the other day so why not go back and see the rest?  Caitlyn enjoyed the train ride this time too!

Unfortunately, since we didn't know if we would even be going home Peter had to leave us after Caitlyn's music therapy session on Thursday.  Which by the way, she LOVED just as much the second time as she did the first!  The plan was for all of us to go home together, but sometimes things just don't work out as planned -- something I have learned during this journey with Caitlyn.  Dr. King didn't make it to our room until late afternoon.  He warned me that I wasn't going to like what I saw so I tried to brace myself for a grotesque sight. Caitlyn cried while he took off her wrappings and gauze and of course it just broke my mama's heart.  But, much to my surprise her leg didn't look near as bad as I thought it would.  The areas on her thigh looked like they were starting to heal and her knee, although obviously unhealthy, wasn't any worse than it was the other day in the OR.  So at least she wasn't getting any worse.  The gauze and wrap was put back on and Dr. King said he was comfortable enough to send Caitlyn home!! 

We agreed to keep her PICC line in and to take her home with both of her JP drains still in place.  The nurse let me do a dressing change on her PICC, just so I felt comfortable enough to do it once we were home.  I had everything packed in record time, talked with the nurse about getting supplies sent to our house for Caitlyn's PICC, and did the PICC dressing change, had discharge paper all done within about an hour to an hour and a half.  By 5pm we were on the road and headed home!

Dancing to music on the boat!
Caitlyn was wonderful the entire drive back and as soon as we got to the house Caitlyn went running from room to room checking everything out and even laid down in the living room and started rolling all over the floor.  It was so cute to watch!  Our next week consisted of visiting family and friends and having grill-outs with those that love and missed us most. 

On Wednesday, Caitlyn and I made the drive back down to Milwaukee see Dr. King in clinic.  I packed the vehicle up just in case she needed surgery on Thursday and didn't know how long this hospitalization would last.  Fortunately, her knee and incision looked absolutely great!  Her knee is starting to heal from the outside-in and the areas on the thigh looked like they had sealed close and were healing nicely.  Dr. King said he didn't think Caitlyn needed surgery the following day so we were free to go home.  He did have me schedule an appointment for Wednesday the following week just to recheck her again to see how she was doing. 

After our visit with Dr. King we went and saw a central line nurse to do a dressing change on Caitlyn's PICC and then up to Orthopedics to see Dr. Thometz about Caitlyn's scoliosis, her leg length discrepancy, and her sub-luxing right hip.  I found out that her scoliosis is mild and is something to watch but not to be concerned about right now.  Her hip on the other hand is not doing very well.  Although it is still in, it is sub-luxing out.  Her hip socket is quite shallow and needs some reconstruction.  Her LLD is also concerning but because of her age it isn't something that we can fix right now and he really thinks we should focus on correcting her hip.  I asked if this something that we can wait to do until she is old...much older, when she is between eight and ten years old.  He pointed out that, although this is going to be an incredibly difficult surgery for her, with immense amounts of pain, and a tough recovery he doesn't want to let her hip "completely go to pot" by waiting too long to do the surgery.  My view is, I have already put her through so much and she has already had such pain in her life that I just can't justify putting her through a surgery as severe as this when she is still so young.  At least when she is older, she can vocalize her discomfort better, I can explain to her what is going on and she will understand what I'm saying, and she can be entertained a lot more easily than she can right now.  I just don't think I can do it.

Dr. Thometz would like to recheck her hip in four months and then plan a surgery shortly after that.  I told him that I am more than willing to come back and see him in four months but there really isn't much they are going to be able to tell me in order to convince me to do this surgery right now.  If the worse thing that would happen is her hip comes back out of place, then fine so be it.  We dealt with that before and it isn't at all painful.  However, if they say that this is going to stunt the growth of her leg (because I do know that her proximal growth plate of her right femur isn't very healthy) and she will forever be damned then I would consider the surgery an option.  But, with the knowledge that I have right now, I just can't bring myself to put her through a surgery as painful as this when she has already been through so much, not now.
Dressing change on Sunday.  Knee is healing but
the part on her thigh has started to split open again

This all now leads us to today.  I had to cancel Caitlyn's appointment to see Dr. King tomorrow.  I did a dressing change on Sunday and emailed him some pictures.  He said she looked good and was fine with us not coming down.  Next week he is on vacation so surgery has been scheduled for the 26th.  He will be removing her stitches then and fixing her knee as well.  Hopefully, he can remove her drains and we will have a very short stay at the hospital...hopefully.

I know I have said this before but thank you all for your continued support!  This is not an easy road to travel but having support from others makes it a little less rocky for us.  Thank you! 

1 comment:

Sydney said...

Hi My name is Brian, and I learned of your daughter because of Dave and Carole's Miracle Marathon, on May 24.

My daughter Sydney was also interviewed by Dave and Carole. She has cancer, which was diagnosed in January of 2012. I have tried to leave you a message but found absolutely no way to do that.

Anyway, I think your daughter is adorable. Please feel free to email me at 1012334@gmatc.matc.edu if you want. Sorry this post is so long. Have a great day, and I hope we can keep in touch.