May 20th Appointments

Gotta love the wild hair in the morning!

I know this update is a little late, but hey have I ever been on-time with any of my posts?  In May we only had one set of appointments.  Due to the fact that it was going to be a very long day for us, I decided to bring my sister along for the great help that she offers Caitlyn and myself.  

Our morning started early.  Clarissa and I were up and out of bed by 3:30am.  Caitlyn was up and had a diaper change by 4:30am.  By 4:40am we were on the road headed to Milwaukee.  Our first appointment was at a Children's clinic that was off-site of the main hospital campus.  We arrived at 9am, just in time to get in to see Dr. Thometz (Caitlyn's orthopedists).  He looked at the x-rays that were taken just before we saw him and compared them to the x-rays from our previous visit.  Dr. Thometz was very impressed with how well her right hip was looking.  It seems as if the brace - which she still wears while she sleeps at night - is working and her hip socket is starting to form properly.  Due to how shallow the socket still is, he is requiring that Caitlyn still wear the brace for at least another four to five months.  I was very happy with the outcome of that appointment, especially since I was a little pessimistic heading into it.  I was most definitely worried that he would tell me that the brace wasn't doing its job anymore and she would eventually need surgery.  However, as of right now, she looks great and hopefully Cait's hip will continue to heal.


Appointment number two was actually a combined visit with Dr. Johnson (Caity's Interventional Radiologist) and a new addition to her team - Dr. King.  Dr. King is a orthopedic-oncologist and a musculoskeletal sugeon.  He would be the doctor, depending on how this appointment goes, that would perform Caitlyn's debulking surgery of her leg.  

We first met with Heather (Dr. Johnson's wonderful nurse) and Dr. Johnson and together we walked over to Dr. King's clinic.  The joint appointment honestly couldn't have gone better if I would have dreamt it up myself.  Dr. King was quite impressed with how well Caitlyn handles herself due to her large leg.  He went on to say, "Medically speaking she doesn't need the surgery."  Being the person that I am, I cut off his sentence and said, "Yes, yes she does."  I know on paper she looks great, other than obviously having KTS.  But at home, the doctors don't see what struggles that she faces and how difficult it really is for her to do all the simple things that most kids her age can do.  Clothing is a challenge in and of itself.  I hope we do not have to go another winter where she is forced to wear leggings because jeans and snow pants literally can't fit over her leg.  

The more Dr. King and I conversed the more I felt comfortable that he is the right fit for our team.  I made absolutely sure he felt completely and utterly confident in doing her debulking surgery before I agreed to having it scheduled.  He told me that although he has never performed this type of surgery on an 18 month old child he has done them on old toddlers and feels as if this case will not be more difficult.  He did say that Caitlyn would have to be off the chemo before the surgery could happen and that would be up to Dr. Kelly on when he wanted to take her off.  I told Dr. King that if it were up to me she would be off of it today.  


When our discussion was over with Dr. King, Dr. Johnson took over and performed an ultrasound of Caitlyn.  He was looking at the areas he treated with sclerotherapy back in March.  All of the cysts looked much smaller and some of them were just scar tissue.  We may possibly do another round of sclerotherapy in the future.  We did discuss the possibility of doing sclerotherapy one day and the following day doing the debulking surgery.  I was not too excited about that.  I really didn't want to put her under anesthesia twice in a 24 hour period and I also didn't want to compile two different procedures on top of each other and cause her more discomfort than she will already be in.  I think for right now we are going to focus on her debulking surgery and worry about doing another sclerotherapy treatment later. 


Just as Heather and I were getting on the elevator to leave Dr. King's department, Dr. King jumped in front of the closing elevator doors and told us to step out for a minute.  Of course I couldn't help but smile and giggle to myself because you don't normally see doctors doing acrobatics in a hospital ;o)  He told us that he just got off the phone with Dr. Kelly and Dr. Kelly said that stopping the chemo  today was fine and surgery has already been scheduled for the end of June.  Needless to say, I was wonderfully ecstatic!  Just then Dr. Kings entire team came walking up and I had the chance to meet and shake hands with everybody.  Caitlyn, of course, got the chance to flirt with everybody.  Giggling and talking on her Caity-language and completely soaking in all the attention.  

After having our little party in front of the elevators, Clarissa, Caitlyn, and I were finally on our way to our last appointment of the day - Dr. Kelly; but first, it was lunch time!  We had a fulfilling lunch at in the cafeteria of the hospital.  I have to say, as far as hospital food goes, Children's has all my local hospitals beat!  


We arrived in the oncology clinic a few minutes early and Caitlyn impressed all the ladies at the receptionist desk with her new walking skills.  The care-partners took vitals along with her height, weight, and head circumference.  Then we were taken back to a nice big room to wait for Dr. Kelly.   A few minutes later, Dr. Kelly came in and Caitlyn lit up.  Since Dr. Johnson made her cry while he was doing the ultrasound Dr. Kelly was her new best friend for the day.  He picked her up and held and talked to her for a while.  Caity was loving the attention and as always with Dr. Kelly went to play with his stethoscope and hospital badge.  The visit was pretty much short and sweet.  Dr. Kelly said that we no longer needed to give her the Sirolimus but to continue the Bactrim until her surgery date.  He said she looked great and was very happy to see her walking on her own. He prescribed Children's Claritin because I am pretty sure she has allergies. 


After our visit, Dr. Kelly rounded up some nurses, care partners, and other helpful staff in the oncology unit and we all headed out to the waiting room.  I read from a plaque on the wall and then helped Caitlyn reach up and grab the string of a bell and she rang it.  Everybody clapped and cheered for her - Hurray chemo is DONE!  With 11 full months, I was glad it was finally over, but to my surprise it actually worked and helped her, so I don't regret every making that decision to put her on it.


We left Milwaukee at about 3pm and I have to say, I don't think I have ever left the hospital feeling as good as I did that day.  Every appointment was so positive and we received such good news with every doctor that we spoke to.  What a great feeling to have!  Caitlyn's surgery has been scheduled for the 28th of this month.  After Dr. King is done with his procedure then a GI doctor will come in and perform another upper endoscopy.  This will help us determine whether or not Caitlyn really does have Celiac disease or not.  So I am quite excited about those results as well.  Instead of sending Caitlyn home on oral antibiotics, Dr. King and I discussed the possibility of just keeping Caitlyn in the hospital on IV treatments since she has never handled oral antibiotics very well.  I think that is a wise decision and I hope that is what happens.  As much as I would like to be home, and hopefully in time for Independence Day, I think keeping her healthy is much more important so I most definitely think IV antibiotics is the way to go.  


I will post another update if anything changes but definitely after her surgery.  I may even get on here and blog while she is in surgery.  I'm going to be a nervous wreck so I think keeping me busy and getting my thoughts on paper may be a somewhat therapeutic for me.  I was so excited at first about her debulking surgery but as the days wear on and the 28th gets closer and closer I'm finding myself getting more and more nervous.  I am quite literally putting Caitlyn's life in Dr. King's hands.  He did say there would be blood right in the OR should she need it and I know everybody working on her that day are well trained and I wouldn't want to be anywhere else, but I can't help but feel so scared for her.  It is times like this where I just wish there was a way for me to take all her problems away and make them my own.  It wouldn't even be a question if I was given the chance to do that for her.  I love her more than life itself and it just makes my heart break to witness all that she has gone through and will soon endure.  My poor little peanut.  But like any strong person, I'm sure she does not want my pity and when she gets older she will say, "Mom, really?  Knock it off, I'm fine!"  I will raise her to be strong-willed and to be the person that she wants to be.  


On cue, Caitlyn is waking up from her nap.  So I must go play with her and her new LeapPad and maybe watch some Little Einsteins or Backyardigans.  Much love to all and as I've said a hundred times before, thank you all so much for your thoughts, prayers, and support.  The emails that I receive from you just brighten my day and help to keep me a motivated advocate not only for my daughter but for all of Caitlyn's KTS brothers and sisters!

My little LoveBug

Continuing After My Small Hiatus

Since Caitlyn's second sclerotherapy treatment in January I decided to take a small hiatus from blogging.  With going to school full time, Caitlyn having another bout in at the Children's Hospital, another sclerotherapy procedure in March, and more surgeries to come I just decided to take time from giving updates and just focus on Caitlyn and myself.  So let's get back to where we left off because there is so much to tell!


Just a couple of days after blogging in January Caitlyn and I were back at my local hospital.  I took her in because she had been experiencing a horrible case of diarrhea lasting since her sclerotherapy procedure earlier in January.  I had taken her to urgent care a few days before where they took some stool samples but those tests were all coming back negative.  On this particular evening, the diarrhea was now accompanied with a fever, so to the ER we went.  The ER doctor was going to send us home since her blood work and a urinalysis that they ran was coming back normal.  Before we left he wanted to give her another dose of Ibuprofen since her fever was starting to go back up.  Immediately after administering her the orange liquid Caitlyn proceeded to vomit it all back up.  The doctor decided, and I agreed, it would be best just to keep her overnight for observation and see how she felt in the morning.


Throughout the night her fever started getting worse, reaching a max temp of 105.  The nurse kept administering Tylenol in the form of a suppository which seemed to help but the fever just kept coming back and the diarrhea was still holding strong.  I called down to Milwaukee to let Dr. Kelly (Caitlyn's oncologist) know what was happening.  He said he did not want to transport her down so late at night, instead he would speak with Caitlyn's pediatrician in the morning and come up with a plan then.


The next day there was a lot of back and forth of the doctors trying to get a hold of each other.  Finally, a plan was set for Caitlyn to be transported by ambulance from Eau Claire to Milwaukee.  The transport had to be made soon because there was a major snow storm heading towards Milwaukee and it wouldn't be safe to drive once it hit.  After waiting all day a new plan was made to transport me and Caitlyn by jet to Milwaukee.  They figured the roads were just too bad to drive one and flying would be safer.  It wasn't until 9:20pm when we were up in the air and on our way.  Once to the Children's Hospital we were warmly welcomed onto the HOT Unit.


Since throughout the day, Cailtyn's fever had started to subside they hooked her up to some fluids, took some blood samples and stool cultures, and she was monitored for the night.  Over the course of our two week stay, all stool samples and blood tests were coming back normal.  Food was starting to, literally, pass right through her.  She was put on complete stomach rest and was given a fluid through a PICC - which Dr. Johnson placed - called TPN.  This had all of the nutrients she would need while her stomach was resting.  While on the TPN her diarrhea started to subside and she was starting to act more and more like herself.

Entertaining Caitlyn on the floor - the crib gets boring after a while

A gastroenterologist, Dr. Noel, thought it would be worth it to do an upper and lower endoscopy.  Come to find out, there is a possibility that Caitlyn may have Celiac disease.  To be quite honest, I don't think she does.  I have been feeding her a regular diet, without excluding gluten, and she has done just fine.  Gaining weight and feeling great!  Another upper endoscopy will be done towards autumn of this year and we will see what Dr. Noel finds then.


Even with the results that Caitlyn might have Celiac it still didn't explain the sudden horrendous bout of diarrhea lasting for four weeks.  The assumption is that she caught a virus and had a hard time fighting it off and the end result was the diarrhea.  She had a nasogastric tube put in place because the doctors didn't want to immediately start her back eating again once she was off the TPN.  Instead, they started her on a Similac formula called Alimentum which was gradually increased as the days wore on. 


Caitlyn was discharged home and left with the NG.  After pulling it out about seven minutes after the nurses placed it in the first time, she had seemed to forget all about it; so I wasn't too concerned with taking her home with it still in place.  Needless to say, the little stinker pulled it out just two days after being home.


Since then there she has been healthy and gaining weight with no signs of Celiac.  We were back down in Milwaukee for Dr. Johnson to do another round of sclerotherapy at the end of March.  This time, her procedure was actually filmed and I was interviewed.  Caitlyn was a natural on camera!  Caitlyn and I were again warmly welcomed by the nurses and doctors at Children's hospital and stayed the night for observation.  She was discharged the following afternoon with no signs of any complications per usual.


Once she was discharged we headed on down to see Dr. Thometz (Caitlyn's orthopedists).  While she was sedated for the sclerotherapy, occupational therapy came in and made a new brace for her to wear since she had completely outgrown the one that she has been wearing since September.  The most recent xray of her hip showed it was "subluxing out" which meant that it was still in but it was starting to come out - at least that's what I understood from our visit with Dr. Thometz.  Her hip socket is still pretty shallow and we are hoping that by keeping her in the brace during naps and at bedtime it will help fix itself.  If not, then she may require another surgery down the road. 


While we were there Dr. Johnson and I discussed the idea of taking Caitlyn to Boston to see a world famous doctor - Dr. Fishman.  The purpose would be to get an opinion about Caitlyn undergoing a debulking surgery that would help take down the girth of her leg.  Caitlyn's team of doctors were in agreeance and felt that Boston was an appropriate option at this point.  I have agreed to go and now we are just waiting to hear back from Dr. Fishman and see if he is willing to take on her case - at least for opinion's sake.


Our next appointment has been scheduled for May 20th with Dr. Johnson for a follow-up from her sclerotherapy and also with Dr. King who is an orthopedic oncologist and musculoskeletal surgeon.  We will be meeting with both doctors at the same time.  After Dr. King takes a look at Caitlyn and her history we will discuss the possibility of him performing Caitlyn's debulking surgery, but only if he feels comfortable taking on her case.  If he does feel up to this challenge then I'm hoping I won't have to take Caitlyn to Boston.  As much as I would love to travel there, taking an 18 month old that far away, by myself, is not going to be any easy task.  But I would obviously do it if that was what Dr. Johnson and Dr. King felt was best for her.  We will just have to wait and see.


I have to say, that it has been very nice this past month not having to worry about when her next appointment is going to be and trying to work everything around our trips to Milwaukee.  We were able to breathe and just let Caitlyn live "normally" for a while.  We have 20 more days until our next visit, so it will be like we could be some-what stress-free for two months.  What a wonderful feeling.  Now the summer is coming and I will be focusing on going back to work, after taking a year off to take care of Cait, and now her upcoming surgery(ies).  I'm hoping to have these surgeries done this summer so I can start going back to school in the fall, full-time.  This will be new for us so I'm not exactly sure how these surgeries will go, it seems to be a waiting game for the most part right now.




A few updates with Caitlyn's development:

Caitlyn enjoying her first time at the park!

On April 26th, Caitlyn took three whole unsupported steps right into my arms.  With every step she just laughed and laughed!  Then, just last night, Peter and I were able to get her to walk half-way across our living room and back again, all by herself!  She was kind of half walking and half shuffling her way and sort of sidestepping it but she was doing it all on two feet - it won't be long now!  I have also noticed that she has been quite fussy lately so this morning I decided to take a peek inside her mouth and noticed that she now has a total of 12 teeth - two of which are still coming through the gum line.


So thank you all for baring with me, I know it has been a long time since I have made an updated post available for you all.  I try to tweet a few times a week that way you can stay in the loop of Caitlyn's daily accomplishments and activities.  So be sure to check out the twitter feed on the left side of the page if you haven't done so already.  I will post again soon, but right now it's time to take Caitlyn to the library.  A perfect place to be on a rain Saturday afternoon!




Much love to all!!!

Interesting MRI and Ultrasound Images

Here are some awesome images of Caitlyn's sclerotherapy on the 13th as well as some MRI shots of Caitlyn before we started the chemo, and again in December when we found out the chemo was working.