Monday, June 20, 2011

What else can I say?

I couldn't make this you-know-what up if I tried!  A short recap of the last four days:

  • FRIDAY: In the morning, I went to the dermatologist due to what appeared to be a breakout of hives all over my torso.  To be sure it wasn't infectious and a danger to Keegan, I went in; they gave me steroid cream and said they were harmless (to K) stress-related hives.  Keegan's port was acting up before he was discharged on Thursday, but we felt that it was under control...until he had about 1.5 hours left on his TPN infusion Friday afternoon.  I played with it and nursed it along for about 45 minutes before giving up.  I thought I had it properly locked with heparin to prevent clotting, pulled the needle, and called Gray and my uncle to help me reaccess him.  (I apologize if this only makes sense to a few of you.)  I go to draw back on the new needle and should get either nothing or blood return.  Instead, I get pure lipids and TPN out.  That means that the infusion was pumping into his chest and not his port/bloodstream (called infiltrating).  We immediately ran to the Legacy ER.  They reaccessed him, took a chest xray, and determined that the TPN would be absorbed without harm by his body. 

  • SATURDAY:  Keegan is home, but I end up in the ER Saturday night because the steroid cream appears to have made the hives worse and now they've spread to my arms and legs.  The ER confirms they are stress-related hives and puts me on oral steroids.  Prednisone - the same as Keegan.  Only a much, much smaller dose.  It makes me feel wonky, so I can only imagine how Keegan feels.  In the meantime, we realize that Keegan's port dressing and needle is soaked in blood and fluid.  We agree to watch it until Sunday and reaccess him then, thinking that it is just what infiltrated the night before taking the path of least resistance through the needle site.

  • SUNDAY: More discharge into the dressing, although it seems to be working ok with no occlusion alarms on the pump.  We spend the afternoon at Gray's parents house to celebrate Father's Day with our families.  Before bed, we put a new needle in and think all is well.  My hives are just a smidge better.

  • TODAY:  Keegan wakes up with more blood and fluid in the new needle pad and dressing.  The pumps seem to work ok, but the port is definitely leaking.  In addition, the mystery wound near the old port site looks to be getting worse - sinking into itself and bright red.  He refuses to walk into therapy, makes me carry him, and barely lifts his head to say hi to his friends Carter, Gavin, and Garrett.  His temp is hanging out in the upper 98s all day, making us wonder if the steroids are keeping a fever just barely at bay.  He was supposed to have his neurological/developmental evaluation at the hospital today to establish a baseline for needing future MRIs to watch for more micro-hemmorages in his brain.  That gets called off until Friday due to the doctor's illness.
So, we call the GI clinic, the transplant team, and the Center for Cancer and Blood Disorders throughout the day asking for opinions on the port.  Is it ok or isn't it?  Our GI doctor finally says he doesn't feel comfortable with us running TPN through the port without it being looked at and tells us it's time to admit Keegan to the GI floor.  Ahh!!!  As soon as Gray is finished feeding Audrey and we can wrap things up, we will be heading downtown for Keegan to go back into the hospital.

I really don't know what to say anymore.  Obviously, I feel like we can't catch the break we so desperately need.  A big part of me was very nervous going home on Thursday.  I can't say I didn't see this coming.  I just want someone to tell me what to do.  Tell me how to fix him.  Tell me how to make it better!  I just am not sure anyone will be able to do that...tonight, tomorrow, or anytime soon.  And I feel like a failure.  I'm letting both of my children down no matter what I do.  Cut me a break...I'm on the steroids too afterall.  But I just can't help but feel that things are only going to get worse from here.  And I hate that.  For all of us.  And really...what else can I say?

**10PM UPDATE: Guess it would happen this way.  The "mystery wound" that was a big mound with a gaping hole in it seemed to explode on us (meaning Keegan, me, and Puppy) while we were waiting in admitting.  It's now a concave area in his chest with an even bigger, red, gaping hole.  At least we are already in the hospital and can have that looked at tomorrow.  The plan for now is to consult with surgery about the port tomorrow.  In the meantime, they want a chest xray, a peripheral IV (which is very difficult to get on Keegan even when he's anesthetized, yet alone extremely overtired, agitated, and on steroids), labs, and run fluids and no g-tube feeds overnight.  The first IV lady had her two sticks, missed both, and asked if we could give him some valium before the next try.  Yeah....I'm ALL for that right about now.  And how about some for me too?  Thanks.


Andrea Riojas said...

Thinking of you. You are a great mom. I can hear it in the words you pour out. Wishing you a better time ahead.

Becky Cudlipp said...

Maddie, you are not a failure and you are not letting your children down!! All Moms feel like this at times, but you are doing more than any Mom I know for your kids! You are in a terrible situation, and frankly, I don't know how you manage to keep your head above water. I will continue praying for you all. Just hang in there!

Tari Anne said...

Maddie...I completely empathize with how you must be feeling. But, please just know how amazing you are. The love you have for your children and your family is AWESOME. But just think, even that AWESOME love pales to the love that God has for you and your family. No matter what, HE loves you. Take each day, hour, minute one at a time and keep praying--not just for Keegan and your family, but for yourself. Don't forget to take 5 minutes alone every once in awhile, sit quietly, and imagine God having huge arms around you. It's okay to have those feelings, you are human. Give them to God.

Ashley & Chuck said...

I'm so sorry! You all are constantly on my heart. You are a great wife and Mom, Maddie. I know that you are at your wits end, so I'm praying for peace and comfort.

scrippe1 said...

You are doing the very best you can. We can hear the frustration in your writing, but we all know that you are an excellent Mom, you give your kids the very best life you can. They are happy and confident children. That says a lot for the amount of instability they have to endure due to the current situation.

We love you very much and wish there was a magic wand to make it better. Instead we'll just pray harder and louder.

Love you guys,

Aunt Stephanie

Anonymous said...

Breaks my heart. Never a break. I distraught you are now facing trials with your health. I hope you can remember how MANY wonderful and faithful people are praying for all of you. You are ALWAYS in my thoughts and prayers. You ARE NOT a failure in any way - you are an absolutely amazing mother! You a very loved by many people. Like I always say I'm here for anything! I love you!

Cody said...

oh my gosh ... Maddie take comfort in knowing that so many people are praying for your family, holding you close to our hearts and walking with you through this journey.
No mother should have to endure what you have been through, yet you handle it all with such grace, intelligence, love and humor. Keegan is blessed to have you & Gray for parents.
Thank you so much for sharing Bug with us, and for continuing to update us on his status. I'll bet I'm not the only one that checks the blog at least 10 times each day.

Kira Willingham said...

Holy Hell! Maddie, you are entitled to feel that way but you are completely wrong. You are always so strong, you are allowed to feel weak sometimes. You don't feel well so things always seem so much more bleak when you feel like crap. Praying for you to all catch a break and catch it soon. BTW, I sincerely hope they gave you some of that valium too...

Linda McElreath said...

Maddie....Try to remember that God is who He says He is. God can do what He says He can do. You are who God says you are. You can do all things through Christ. You are in no way a failure, but in every way a champion and advocate for your precious family. When you have no strength to pray for yourself or your family, take heart picturing the many family and friends who are praying on your behalf.