Tuesday, June 12, 2012

Catching Up

I don't know how many times I can apologize for being a bad blogger.  Luckily, this time it's because things have been going ok.  Keegan has been outpatient for exactly one month as of today!  That is a HUGE accomplishment for him!  I haven't gone back to check the calendar exactly, but I think that may be a record for 2012 so far.  Needless to say, we have been pretty busy during that time.  We dove head first back into his usual speech therapy, started behavioral therapy (his "school" to address issues caused by strokes/brain damage/autism), and started physical therapy (to rehab his muscle coordination and strength from the former and develop a plan for post-flare stiffness).  

In addition to being outpatient, he's also managed to stay off TPN for the last few weeks!  We recognize that Keegan's intestinal failure is directly related to his immune dysfunction.  When his immune system is under control, his GI system functions pretty well, but when the immune system acts up (most of the time), his GI system is rather useless.  At the moment, Keegan is experiencing a bit of a remission, so to speak, and has been able to maintain low but acceptable electrolyte levels.  As soon as that is not the case, we will slowly add the TPN back in, and when he is doing ok, we will titrate back down/off.  It puts Gray and I bit on edge, always looking for "signs" that things are not right between weekly lab draws.  However, it is the best thing for Keegan.  Since his kidney can't clear all the fluid, we have to chase it with diuretics, which raises his blood pressure and will hurt his kidney even more in the long run.  For now, we are just trying to enjoy the time we have TPN-free.

We had an appointment with the rheumatologist last week, but it ended up not amounting to much.  The genetic labs and inflammatory pathway labs we need have not come back yet.  We can't make any decisions without them at this point.  Phone calls were being made, and we have rescheduled.  Hopefully, we will know more soon.

With all of Keegan's appointments, it is hard to find free time during the week.  But we have rearranged our schedule as much as humanly possible to make sure there is one morning per week free to do something fun.  So far, we haven't done anything earth-shattering.  Feed the ducks.  Go to a new park.  Go to the library.

  Last week, we went to Science Storytime at the Frisco Discovery Center.  It was a little low-rent, but the kids enjoyed it.  

Audrey also started some "gymnastics classes".  I hesitate to call it gymnastics quite yet, but it is certainly prep work for real lessons.  She has a BLAST though, so it's definitely worth it.  They are at the gym where Olympic Gold Medalists Nastia Liukin and Carly Patterson train, and it makes me feel like an absolute lazy bum whenever I walk in!  

We also have been doing a lot of playing and enjoying time as a family.  For Audrey, this lately means a lot of dress up.  I love it!

I guess I'm glad things have been a little quiet for Keegan lately.  I hope that didn't just jinx it because I really need a few more weeks.  You see, I have a little problem with my gallbladder.  It quit on me.  Quite literally.  I had a nuclear radiology scan of it (a HIDA scan, for those interested) two weeks ago, and it is not contracting enough to hardly be quantifiable.  I had an upper endoscopy done yesterday that will rule out celiac disease and found one small lesion/ulcer.  Today, we met with the surgeon, and I am at an extremely high risk of developing a gallbladder infection due to all this.  So next Thursday, June 21st, I will have the darn thing taken out.  It will be done via robotic laparascopy.  It should be day surgery with a 3-5 day recovery period.  Quite simple in the grand scheme of things we have been through with Keegan.  I would definitely still welcome and appreciate your prayers for this procedure - less for me and more that Keegan stays stable while I am temporarily out of pocket.  

Once again, I apologize for not being a great blogger lately.  I do have some more pictures to share soon, which I hope will get me back posting again in a more regular fashion.  Thanks to all of you who continue to check up on us and keep us lifted up in prayer.  Even when I am a lazy blogger.  ;)  


Becky Cudlipp said...

Let me know what surgeon you're going to and if you like him. I am supposed to get a HIDA scan (which I never did). Sono shows gallbladder is full of "sludge", which apparently means its not working well. I've totally been procrastinating on surgery b/c I'm such a chicken. I'm sure all will go well for you! Continued prayers for a continued calm!

tbugg815 said...

Praying for your procedure. And especially prayerful for continued health for K. Thoughts and prayers for strength of HEART for you, Maddie.

Nicole Alexander