Still Inpatient at CHW

This past week has gone by relatively fast and smooth as well, which is nice because I’m not keen on the roller coast ride we usually have when Caitlyn is admitted to Children’s. 

Over the weekend, Caitlyn opened many presents that I was able to wrap and bring with us.  Just to give her something special each day and also a way to keep her entertained.  Grandpa Dave came to visit us on Sunday morning and was nice enough to bring her a bear from the Milwaukee Brewers stadium.  That afternoon, Grandma Louise and Grandpa Dave left for home.  I was incredibly disappointed to see them go but I knew my father and step-mom would be joining us for a visit on Monday.

Through the weekend, Caitlyn’s VAC started to give us problems.  It wasn’t holding a seal very well and continued to leak air.  We kept getting messages on the machine saying there was a blockage.  Her VAC dressing change wasn’t scheduled until Tuesday, I personally felt it should have been changed on Sunday, no later than Monday – her nurses agreed.  But she toughed it out and surgery stayed scheduled for Tuesday.

Papa Al and Grandma Fern joined us on Monday afternoon.  They were nice enough to bring me the few things that I had forgotten at home.  The plan was for them to get a hotel and visit again on Tuesday, unfortunately that did not work as planned – they left for home during Caitlyn’s late-afternoon nap. 

Tuesday afternoon was Caitlyn’s VAC dressing change and also a little more debulking of her leg.  She was scheduled for 1:30pm however, Dr. King was running late doing a big case over at Froedert so she didn’t go back for surgery until 4:30pm.  Caitlyn slept from 1:20pm until we went down to the pre-op holding area so at least she wasn’t awake asking for food and drinks. 

I requested to have Caitlyn put on dilaudid for pain instead of morphine.  This is because of the extreme side effects she gets from the latter.  Surgery lasted for three hours.  Dr. King said her tissue inside of her leg looked great and only a small piece of skin died by her knee.  He extended her incision down across her knee and was able to debulk a big portion of tissue in that area.  He then removed malformation all the way up the lateral part of her thigh.  Once the debulking was done he placed two JP drains, brought her flaps of skin together, sewed her closed, and placed just a skin VAC on her leg which only covers her incision.  Friday she will be back in the OR for a VAC dressing change and then Tuesday she will be in the OR to hopefully removed the VAC completely and the plan is to then go home on Wednesday!

Caity's leg today. It is swollen now but that will go down
R leg: ~34cm around thigh/25cm around knee
L leg: ~38cm around thigh/29cm around knee

Dr. King took me back to the recovery room where Caitlyn lay in her bed waiting patiently for me.  Not a single tear was running down her cheeks.  I pulled back her blanket and my jaw dropped.  Her leg really did look like a little girl’s leg!  THIS is what I was looking for on Thursday; THIS is what we have been working so long and so hard for!  It kind of feels as if we have crossed the finish line.  There is obviously still more that needs to be done to help Caitlyn but her leg looks incredible and I’m not sure I want to do any more surgeries like this any time soon. 

I ran around the bed and threw my arms around Dr. King.  There is nothing that I could ever say that would express how thankful I am.  As I have said before, her life has now been completely changed because of what he and her entire team has done for her these past two and a half years.

She was put back on a PCA (pain pump) but with dilaudid in place of the morphine.  She has handled this incredibly well.  She has experienced zero body spasms and only a little bit of itchiness on her face.  Benadryl was unable to relieve her of the itching so she was put on a continuous infusion of Naloxone; this has now eliminated her itchiness.  Her night after surgery went really well.  I did not sleep a single wink.  I was just too excited for her and for her future.  My mind was racing and I just could not seem to calm down.  Around 2am, her nurse took vitals and we realized that Caitlyn had started with a fever.  Ibuprofen did not help so she was given Tylenol.  Tylenol took care of the fever for a while.  By Wednesday morning, she was still running a fever.  We gave her Tylenol again and she has not had a fever since. 

Yesterday morning I spoke with Dr. Kelly.  He agreed to hold off on the chemo until her fever was over and to see how much fluid she put out in her JP drains over the next day.  We talked about whether or not to do quarterly ultrasounds of her kidneys to check for Wilms tumors.  I told him I would feel more comfortable if we did continue to keep an eye on her kidneys while she gets older, just to be safe.  He said that would be fine and decided to put in an order for a kidney ultrasound that day.  We also talked about Caitlyn’s spine.  He said he looked at her images and she definitely has scoliosis, which is common in children with vascular anomalies who is so asymmetrical with their body.  We will be following up with Dr. Thometz to see what needs to be done – if anything right now. 

Shortly after my talk with Dr. Kelly, Caitlyn’s nurse brought us down to radiology to meet with Dr. Moe (Caitlyn’s new interventional radiologist) to do an ultrasound of her mons and of her kidneys.  He informed me that although doing more sclerotherapy on her mons would help her flare-ups he is pretty confident that it will not help the size of her mons decrease – which is our goal.  I have now decided to not waste time and not put Caitlyn through more sedations doing sclerotherapy when in the end we will just be performing a debulking of that area anyway.  I will wait until she is completely healed from this surgery and then talk with Dr. King about when the best time would be to debulk her “little lady area.”

Today has been a good day.  I noticed a bruise forming across her knee and her leg is starting to swell.  It still looks good but just a little swollen.  It has now been a week since she has walked.  Each time I try to stand her up she cries and says it hurts, or “I can’t!”  Dr. King said he would look more closely at the bruising tomorrow when she goes back into surgery for a VAC dressing change. 

Her nurse, Sarah, and I took Caitlyn for a walk on the skywalk and then downstairs to see the fish.  In the lobby the annual Dave & Carole Miracle Marathon for Children's Hospital was going on.  I talked to a couple people there and agreed to come down and share Caitlyn’s journey with them and all the listeners.  While filling out paperwork Caitlyn got the wonderful opportunity to meet Miss Wisconsin!  She wasn’t feeling very well but really made the best out of taking pictures with her. 

Once back in our room, it was music therapy time!  It took a little while for Caity to warm up to the playing the instruments but once the big drum was brought out Caitlyn was all smiles!!  She was able to follow the dynamics of the music and even listened to the instructions of the lady who was playing music and singing with her.  The woman was very impressed and said three and a half to maybe four years old are able to follow her lead and follow the dynamics, not a two year old.  I called it from the time she was a baby, she is very musically inclined and I’m sure will grow up to do something artsy!  After music, it was naptime.

Soon after getting Caitlyn asleep, they said they were ready for me to come down for the interview.  Dave and Carole were great!  They asked so many great questions and allowed me the opportunity to share Caitlyn’s wonderful and amazing journey with so many people that otherwise would not have known!  Thank you!

If you are interested in donating to the Dave & Carole Miracle Marathon for Children’s Hospital please do so my calling: 1-888-414-9554 or by visiting this website: http://www.chw.org/miraclemarathon

Thank you all again for your continued support!  Caitlyn will be able to look back one day and read this and read the comments that people post and know that she was loved by so many, even people that don’t know her!  Please feel free to post comments to her, share her story with others,  and post a link to her blog on your social networking sites.  I love educating people on her condition and showing that heroes can be as little as 2 ½!