Wednesday, December 29, 2010

Merry Christmas!

We hope your Christmas was merry & bright...

Christmas Eve at Mamie & BD's

Cousins Marley & Maya

Mamie & Big Daddy

Chum & Poppy

Great Aunt Kathryn & Great Uncle Chris



Tickle Monster!


Aunt Alex & Audrey

Opening presents from Santa on Christmas morning



Christmas day at Pops & Oma's house




...and we pray that the Lord will bless you abundantly in the New Year!

Friday, December 24, 2010

News Story - Meeting Johnston's Family

UPDATED 12/25:
Here is the news story on Channel 8 (ABC), covering our first chance to meet Johnston's family.  Thank you to everyone for letting us know that it had been fixed online.  We couldn't wait to share this with you!



Thanks so much for your wonderful feedback and support.  We may not have had a tree, all the gifts, decorations, or traditions, but this was truly the best Christmas gift we could possibly receive.  We will never forget this momentous occasion, and we're looking forward to building a wonderful friendship and family with Kevin, LaMonica, and Kingsley.  As Kevin said, we want Kingsley and Keegan to be like brothers...and they are just that in a very real way.

We hope each of you have a most merry, joyous, and peaceful Christmas! 

And the Word became flesh and made His dwelling among us.
We have seen His glory, the glory of the one and only Son, who came from the Father,
full of grace and truth...Out of His fullness we have all received grace and in place of grace already given.
John 1:14, 16

Thursday, December 23, 2010

Blessed

Today, we received the best gift possible.  Today, we met Johnston's parents and brother! 

We are...blessed, overwhelmed, grateful, ecstatic, at peace.  I feel a calm and completeness that I cannot even put into words.  We have loved them without knowing them until now.  Three years ago, Kevin & LaMonica chose to give our son life.  What more can I possibly say? 

For tonight, I am beyond words.  That is for sure. 

We will have pictures and more to say soon.  In fact, Gary Reeves from channel 8 news (ABC) was here today to interview us all, and I believe the story will air on the 10pm news on Christmas Day.  We will update as soon as we get confirmation on that and be sure to link to what we can.

Thank you to Lou, Laurie, and Heather from the hospital for helping us document such a milestone in Keegan's life.  We are so grateful for each of you.

But the biggest thanks go to Kevin, LaMonica, and Kingsley.  Welcome...finally...to our family.  We truly could not ask for a greater gift than to finally be able to hug you and say the words that cannot possibly encompass all that we feel for what you have done for us.....thank you.

Wednesday, December 22, 2010

Recap

I would really like to start off this post with a BIG thank you to Susan, Terri, Kathy, and Amanda at Children's.  I'm not sure any of them will ever read this, but I would be remiss to not mention that their hard work resulted in a very smooth afternoon at the hospital today.  So, thank you so much for everything you do.  Your work is definitely appreciated.

We started off with a weight check and GI appointment.  Keegan was up a touch in weight on the clinic scaled, but the doctor wasn't impressed, as it was negligible and a different scale than the inpatient one.  The good news is he didn't lose any more weight.  As we anticipated, we got few answers but do have a plan for Keegan's GI problems.  The doctor thinks that the simple answer is that Keegan has learned to "hold it"!  We noticed he was trying right before he went inpatient with the kidney failure.  Evidently when the toxins can't be eliminated via urine, they try to come out elsewhere, which makes it very painful to eliminate.  We are going to try the least invasive way to help get it out - backpressure - by decreasing the hours of his tube feeds and running the same volume at a much higher hourly rate.  The theory being if you put enough in there, it has to come out!  While we do that, we will increase his colace dose and will have to "vent" his stomach through the g-tube more often (the scan showed a ton of gas in his system). 

We will stop the TPN after tonight's dose and check his weight at the end of next week, with the assumption that it is easy to restart it if necessary.  We will offer him some simple oral foods, like dry cereal, crackers, and purreed veggies and fruits.  All in all, our GI doctor puts a LOT of faith in us as parents to make the day-to-day calls of how much tube feeds/medications/oral feeds to give him.  If we start to see him backslide, we go back a few steps.  If it takes too long with no improvement, we will add the oral antibiotic back in also.  The downside of this plan is that we're not at a "happy" stable place to begin with, where we can return if new changes don't work.  But our doctor doesn't believe in wasting time and is very concerned that we will lose Keegan's interest in eating orally.  We all worked so hard to get him to where he is today, and it would be a great tragedy to have to start that all over.  Long story short...this is going to be another long, long process.  I was reminded today that the initial estimate of getting Keegan on a normal diet without tube feeds was "by age 5 or 6", so if you keep that in mind, this is more of a stumble than a setback. 

Ready for his weigh-in and vitals.  The plastic covered spot just under his armpit is where his port lies under the skin, accessed by a needle.  His g-button is below that to the right of his belly button.

"Bumps" and hi-fives for Dr. Semrin and Daddy.
His formula and tube feed pump is in the backpack, connected by a tube on the left to his stomach through the g-button.

After GI, we went across the hall to the Center for Cancer and Blood Disorders.  The nurses there changed the needle in his port (no fun), pulled the blood for his labs, ran his IV immunosuppression, and administered his pentamadine breathing treatment.  All in all, we ended up being there about 4.5 hours today.
Watching Kung Fu Panda while his infusion ran. 

He kept calling the paper insert from the DVD a "map", and he would not let go of it.  Crazy boy.

Keegan and Ms. Katie in the pentam chamber.  Can you see Keegan sitting in her lap with the mask on?
The pentamadine is nebulized but is very potent, so it must be administered in a negative-pressure chamber unit that doesn't let it into the main airsystem.  Katie is a respitory technician, and she wears a protective mask to keep her safe. 

Showing off the wreath Mamie & BD donated to the hospital in the Ambulatory Pavillion entrance.

Since this was hopefully his last night of TPN for awhile, we wanted to document what we (ok, I) have to do to prepare it.  It is easier this time around because I don't also have to hang lipids (fat emulsion).
After I use a germicidal wipe to make my kitchen counter a sterile environment, we lay out all the supplies.  I have to draw some of the more unstable ingredients each night, add them to the TPN bag, and prime the tubing. 

Drawing the multivitamins and heparin


To end the night, we enjoyed a lovely carriage ride through a neighborhood next to ours that goes all out with the Christmas lights.  Thank you, thank you to Kelley and Carl for such a special treat!

Our horse-drawn carriage

Our friends and neighbors that joined us on the ride!


Thank you so much for your prayers for today.  I just can't express how much you are needed and appreciated.  We will do it all again next month.  It makes me just that much more appreciative and amazed at our friends who do this much more often than that.  Wow.  You are amazing.

Two fun pics to wrap up this post:
Audrey in her cute Santa panties from Ms. Pam and KK and her Christmas bow from Ms. Stephanie.
Her dress is actually mine when I was a baby.

Evidently, Mary has had enough of the Nativity scene.  At LEAST once a day, she takes a joy ride on the John Deere truck.  We find her in some very interesting places around the house.  I guess Joseph, the Wise Men, baby Jesus, and the animals are all quite content with their lot in life. 
But not Mary...she's a busy one. ;)


By the way...you might, just might, want to check back tomorrow night for some good news. 
Just sayin....

Tuesday, December 21, 2010

Tomorrow and an old post

Tomorrow will be a busy day for Keegan.  He has a GI appointment, IV infusion of the new immunosuppressant, pentamadine breathing treatment, weight, labs, and port reaccess.  Most of it is routine except for the GI appointment.  Keegan will probably disown me one day for talking about all his GI problems, but that's a problem for another day!  The next paragraph is mostly about bodily functions, so consider yourself warned.

You may remember that as of Thanksgiving day, we were talking to Keegan's GI doctor about the possible need to admit him for strict tube feeds of his specialty formula because of frequent, mucousy loose stools again.  We were trying to be proactive in addressing this problem with what had previously worked (elecare formula and an oral antibiotic called vancomycin) before it got so bad that he stopped eating and started losing weight.  Then that little thing about kidney failure cropped up, and the GI stuff took a back seat.  Dialysis can often make you constipated, so Keegan has been on a daily dose of a stool softener since then.  Despite that, the fact that he is on 100% 24-hour tube feeds, and the fact that he has a history of chronic diarrhea, he was only actually working something out every 2.5 days or so, but it is still diarrhea when it does come out.  Today, we brought him into the hospital and ran an abdominal scan in radiology to see if we could tell what was going on.  It showed that Keegan was pretty "backed up" as it were.  However, we know that what is in there is completely loose and mucousy, so why isn't it coming out?  Despite being so "full", he isn't gaining weight even though he's on the full tube feeds.  Right after I got the call from the nurse about the test results, he had a blow-out (mainly due to the fact that the diaper wasn't the right size rather than volume), and the "quality" was even worse.  He spent most of the rest of the evening in his tripod stance (hands and feet on the ground, dragging his head across the carpet), which we saw a lot in the past as a sign of discomfort for him.

Needless to say, we will brainstorm all this information with the GI doctor tomorrow and hopefully leave with a plan for Keegan.  The enigma that has become Keegan's GI system is maddening to say the least.  Your prayers for wisdom and guidance tomorrow would be much appreciated.  Thanks so much.  We will update tomorrow night about how the day went.

I heard this song on the radio this morning, and I pulled part of this post up from last year.  It's still one of my favorites.  Christ did come for us, to live as we do and to die so that we might have eternal life.  He came to experience our pain and sorrow, to give us hope for the future.  Emmanuel - God with us.  But I find even greater comfort in considering the humanity of his earthly parents - their grief, their pride, their sorrow, their happiness...their hope. 

**************************************************
FROM DECEMBER 22, 2009:
Since Keegan was born, I have to admit that the Christmas season leaves me thinking more about Mary and Joseph than ever before. Lately, I've been quoting the adage "I know God won't give me anything I can't handle, but I wish He didn't trust me so much!" I can't help but think that Mary or Joseph must have coined that very phrase!! Can you imagine the anxiety Mary must have had as an unwed mother, accused of breaking the vows of her betrothal? Can you imagine how she might have agonized over the fate of her son? I think I have a little bit better understanding now, not only just as a parent but as the mother of a child with an uncertain future. What about Joseph? Did he worry how he would provide for this new family? Did he lose sleep about whether he would be able to protect his son, keep him from pain, or simply how long he would be blessed to have him to hold? I hope he and Mary worried about these things...it would reassure me that I'm not alone. But I know their faith was stronger than mine. I pray that I can learn to ask less questions of God and trust more, to place my faith in God's plan, to respond as Mary - "I am the servant of the Lord...may it be to me as you have said." (Luke 1:38)



JOSEPH'S LULLABY - Mercy Me
Go to sleep my son; this manger for your bed.
You have a long road before you; rest your little head.
Can you feel the weight of your glory? Do you understand the price?
Does the Father guard your heart for now so you can sleep tonight?

Go to sleep my son; go and chase your dreams.
The world can wait for one more moment; go and sleep in peace.
I believe the glory of heaven is lying in my arms tonight.
Lord, I ask that He for just this moment simply be my child.

Go to sleep my son. Baby, close your eyes.
Soon enough, you'll save the day, but for now, dear child of mine,
Oh my Jesus, sleep tight.

Monday, December 20, 2010

It just is what it is...

...or maybe a more appropriate title would be Musings on Why I Had a Breakdown in the Target Parking Lot.  Not sure which has a better ring to it.

I should be sleeping right now.  That is the truth.  As any mom of any child, healthy or otherwise, will tell you though, it's pretty hard to turn your brain off and get some rest, especially at the holidays.  Keegan has been home from his most recent hospital stay for five days now, and we are resuming what we can best muster to be a routine.  I've been trying to ignore thinking it through for the last week or so.  I just am having trouble putting my finger on what has been bothering me.

By Friday, I had the Thanksgiving decorations finally packed up and put away.  So far, I have the following Christmas decorations out: stockings, a front-door wreath, the advent calendar, and the kids' nativity.  Not exactly the makings of a picture perfect Christmas.  I spent part of Friday and all Saturday afternoon just trying to purchase a few presents for my children.  If you are not one of my children, then I apologize, but it ain't happening this year.  Christmas cards?  Nope.  Baking?  Not around a child that can't eat.  Visit to Santa?  No to any public places with a severely immunosuppressed child. 

From the minute we arrived at the ER with Keegan the Saturday after Thanksgiving, I told myself I was okay with missing Christmas.  My mom and her friend, Denise, painstakingly put all our Christmas decor out two years ago when Keegan was inpatient.  It was so nice but so difficult to see when you came home for a shower and clean clothes before returning to the hospital.  This year, we said we would simply rather put the whole thing on hold.  But that's really hard to do when the rest of the world is going about their merry holiday way. 

Frankly, when your child is sick, you want the world to stop turning.  You desperately need the wold to stop and take notice.  But it doesn't...not for you, your baby, or anyone else.  I was walking through Target on auto-pilot Friday.  Needing to buy groceries but not sure what for, since I can't eat in front of Keegan or feed him.  Searching what was left of the toy aisles for something, anything, to give him or Audrey for Christmas.  And my brain just couldn't take it anymore.  I checked out with what few things were in my cart and slid back into the car.  Then my heart gave in too.  This isn't the way Audrey's first Christmas was supposed to go.  No, Keegan isn't in the hospital at the moment, but LORD, if that sickening feeling that he could be back in the ICU - or worse - at any..single...minute...doesn't just crush us every day.  And I felt like a complete slacker for not staying up all night just to put a tree and every single decoration out because I promised myself that I would make every minute, especially every holiday, count for Keegan.  And what if, what if, there isn't another one to celebrate...

I know this is turning into a big ol' pity-party-woe-is-me post.  Like my sister says, sometimes you don't want anyone to fix it, you just need to get it out.  It's not fair.  There's nothing I can do to change that.  I don't like the cards we've been dealt, but I have to play them as best as I possibly can.  This isn't about whether we did all the things you're "supposed" to do at Christmas.  It will be about what we make it as a family.  About the moments we share together and in praising the Lord for giving them to us.  I hope one day we can look back on this time and share a collective sigh.  Congratulate ourselves for just getting through it. 

We are not alone in the struggles we face.  I know too many families that will spend this Christmas without their child.  There is nothing more unfair than that.  But I know that God is with them...with us.  He understands.  He watched his Son suffer and lost a Child too once.  I am not proud of my moments of humanity, when I say I don't want to do this anymore.  I don't want this life for myself or my children.  But I will wake up tomorrow and do it again.  Because He is with us.  Because He sent His only Son to be born and to die for us.  And that is something I will never take for granted.

And an angel of the Lord suddenly stood before them, and the glory of the Lord shone around them, and they were sore afraid. 
But the angel said unto them, "Do not be afraid!  For behold, I bring you good news of great joy that is for all people. 
For today in the city of David has been born for you a Savior, who is Christ the Lord!
Luke 2:9-11

Sunday, December 19, 2010

End of the Week in Pictures

Here are a few pictures from the rest of our week...

We strung all of Keegan's Beads of Courage before being discharged on Tuesday.  We weighed them before we left - a hair shy of 3 pounds!!  Some of the most prevalent ones were yellow (each day inpatient), rainbow (therapy visits), black ("pokes"), green (TPN or dialysis), jade (tests/scans), and blue (clinic visits).  There are plenty others though.  The big red heart is for his transplant, & the small heart for his open heart surgery; the fimo beads between the letters of his name are for each day on ECMO.  Like I said before, the only bead he doesn't qualify for was the LVAD (and thankfully so!).  I'm working on a way to display them in his room and will post more about them later.  Gray and I honestly thought this would be something he wouldn't "get" until he was older, but he uses them almost like worry stones, especially the beads with the letters of his name.  He holds them and rubs them...he "gets" it on a completely different level, I suppose.

Watching GooGoos (Curious George) the first morning home.
The bag on the left is TPN or IV nutrition; the two on the right are for his tube feeds (one holds formula; the other is a relief bag in case he stops processing the formula through his tube).
He picked out the lion IV pole pal over a car or train.  It has a heart for a nose.  ;)

This liittle gal is finally home where she belongs, and we couldn't be happier. 
She had tons of fun with Mamie & Big Daddy, but we sure did miss her!
Audrey turned six months old while Keegan was inpatient!  Hap Birt to you, Audrey! (That's a half of a happy birthday, in case you were wondering).
Mamie took her for her 6-mo appointment, and she's still an itsy bitsy thing - only in the 14th percentile for weight and 20-something percentile for height.  But her noggin is in the 60th!  She's a smartie!

Enjoying some playtime right before their bath while Keegan was disconnected from his pumps for a minute.  Bubba and Sissy, back together again!

Keegan is still scheduled for his day-admit on Wednesday to be weighed, labs drawn, port reaccessed, meet with GI, get his breathing treatment, and have his IV infusion of the new immunosuppressant drug.  And of course, anything else that may be needed based on labs or clinical appearance.  We are hoping that he might be able to stop his TPN and start eating again after this meeting.  However, his GI symptoms are throwing us for a little loop at the moment.  We have contacted his GI doctor and will touch base in the morning.  He may need to have a test run in radiology tomorrow to make sure everything is ok.  We will update more as we know it.


Monday, December 13, 2010

Maybe...

...all the wheels were turning in the general direction of home today.  Getting ready to be discharged is always a bear, especially with TPN and tube feeds.  But at least it's not with dialysis!  I did not hear back from the care coordinator to know if the home health peeps will actually show up with everything tomorrow or not, but if so, we should be outta here by the late afternoon/early evening.  Keegan is scheduled for a "day admittance" to the Center for Cancer and Blood Disorders at Children's Legacy next Wednesday.  He will get his immunosuppression IV infusion and his monthly breathing treatment that helps protect against a certain type of pneumonia.  He will also get weighed. labs drawn, and his port reaccessed.  Our prayer is just that Gray and I can manage his TPN and tube feeds at home for the next week with no unplanned medical visits before the 23rd!  The best scenario is that the coming week allows Keegan's intestines to heal enough to start benefitting from the tube feeds again and not need the TPN for too long.

In other news, we finally received all of Keegan's Beads of Courage today.  Most of the categories could be counted easily (inpatient days, number of surgeries, ICU stays, ambulance rides, every rejection free month, days on ECMO, discharge from the hospital, central line insertion/removal, tube insertion/removal, biopsy, cath, etc, etc, etc).  Some had to be estimated ("pokes", which included IV attempts, labs, and shots; number of therapy visits; number of clinic visits, echos, xrays, etc).  A big thanks to Staci, one of our cardiac nurses, for helping research, gather, and count them all!  Here's where what we were presented with this afternoon - current through this inpatient stay:


Keegan was asleep before Gray and I finished stringing them all, so I will take a picture of the finished product tomorrow.  All thirteen strands of them!  (Yes, we strung them all today.  I had a terrifying image in my head of them falling and scattering all across the hospital lobby or parking garage as we tried to leave!)  If you are interested in finding more out about this amazing program, CBS did a marvelous piece on the empowering and cathartic effect these beads have on kids battling cancer and cardiac diseases and their families.  You can watch it HERE.  I hope and expect that it will expand to cover many, many more types of chronic illnesses in the coming years. 

I know it seems a bit petty in the grand scheme of things, but we would love it if you could join us in prayer for a smooth discharge and that we are home in our own beds...all of us...by this time tomorrow!  Thank you so much.

Sunday, December 12, 2010

Sunday

Sunday was much the same as Saturday.  We will see what GI says tomorrow morning, but after discussing everything with the doctors this morning, it appears tomorrow will be consumed with getting Keegan ready to be discharged...with TPN.  We think it will be temporary as we wait for Keegan's tummy to heal enough to process his tube feeds.  The tube feed/TPN/no real food dynamic should be interesting to say the least at home, but we will try.  We just want to go home period.  We tried to sit this out in the hospital two years ago, and a lot of sitting is exactly what happened.  Again, we will know more tomorrow, but that seems to be where we are headed (that would put us going home sometime Tuesday).

Keegan had a lovely visit from Gage and Ainsley this morning, as well as Big Daddy, Audrey, Oma, and Pops.  Unfortunately, he was very tired and irritable, but it was good to see them anyway.  We were able to go on another walk up to the cardiac floor to see the Christmas lights from higher up and of course, chat with some of Keegan's "girlfriends."  He seemed to be in a better mood by this afternoon.  We will post more tomorrow as we know it.  Thank you so much for your continued prayers.
So sweet!

"Keegan, look!  Spidey!"

Ms. Kelley and Ainsley

Audrey and Pops

BD and Keegan

Audrey and Keegan
(Funny how Audrey always seems to have a new outfit on when she comes to the hospital these days! Hmmm...)

Saturday, December 11, 2010

Saturday

Well, it was a pretty typical Saturday at the hospital today.  Labs, vitals, chest xray, and meds.  Keegan lost more weight today.  That's another typical Saturday at the hospital...a resident saying we should consult GI about Keegan's continued weight loss; several "I paged them"s, but we never saw anyone.  I would expect more of the same tomorrow.  So reassuring since Monday we are supposed to be getting ready to go home. 

Sigh.

One thing made this day extremely worth it.  After Keegan had been on dialysis for two days, he looked up from bed, reached out his arms, and said "Mama? Give hugs?"  It melted my heart then, and he's done it daily since then.  But tonight, I was sitting in the rocking chair next to his bed.  "Mama?", he asked.  "Yes, Buggy."  "Kiss?"  Ahhh.  Is there anything on this planet better than that?  I'm pretty sure there's not.

I don't have any pictures to share today, but we had quite a few visitors.  Audrey, Mamie, and Alex.  Oma and Pops.  Cousin Maya.  Hannah's Mama and Daddy (Amanda and Jason), who dropped off two wagons and several large bags FULL, and I mean, FULL of toys for our heart kiddos.  Uncle Tim, Aunt Karen, Austin, & Ashley.  Mr. & Mrs. Harrington, who have always included Keegan on the Jesuit prayer chain. 

We hope everyone is having a great weekend so far.  I hear it's supposed to turn cold tomorrow, so stay warm and bundled up out there.  Thanks once again for your prayers.  We are blessed.

Friday, December 10, 2010

Friday

Not a lot of new information to report today.  We are still working on advancing Keegan's tube feeds.  By tomorrow morning, he should be to full volume (amount of formula per day), and then we will have to start increasing the concentration.  By Monday afternoon, we should hit 80% of caloric needs from tube feeds and be able to stop the TPN.  All of this is, of course, depending on Keegan handling these changes well.  We are not sure what to make of things at the moment because things are already not going the way we have seen in the past.  It used to be that as we made changes to the tube feeds, he might have more diarrhea or start throwing up.  Keegan is now dealing with some kind of "functional constipation", meaning he's not stooling enough or as frequently as he has in the past.  But it is still the mucousy diarrhea when he does go.  Considering the type of formula he is on, what it looks like when he does, and the fact that we are giving him stool softeners twice a day, he should have no problem going whatsoever!  All this is to say, we aren't exactly sure what we are dealing with here.  It has raised a few eyebrows because any sudden departure from what Keegan usually does is unusual.  Additionally, he's been losing weight consistently, despite not having any true output.  He is now about half a pound under the last "healthy" weight we had on him.  We will just have to continue to wait and watch him over the weekend.

He had his cardiac work-up today, and his heart is looking great still.  We have stopped running daily labs since he is already so anemic.  Continuing to take more blood each day just compounds the problem.  We were able to get him out of the room this afternoon and get some fresh air.  It was great to see him start to walk a little more.  He would stop to ask me to "pick up" every now and then, but if I pressed him to keep going, he usually would.  We are hoping for continuing improvements in his energy levels over the weekend.

Playing with his dancing Frosty the Snowman before his echo

Enjoying some time with Aunt Alex before bed

Lainey, Ainsley, & Gage stopped by the Children's Legacy campus up by our house today.
They found the wreath we decorated for the hospital and sent us this adorable picture.
Hi, Gage!

In other news, the picture of Keegan and Tony Romo from Monday was featured on the official Dallas Cowboys Facebook page today.  It has over 3,000 "likes" and over 400 comments already!  We were also told that they may include the picture in the game program against the Redskins on December 19 and possibly in the next edition of the team magazine.  You can see the Facebook photo and comments HERE.  We are so grateful to all the Cowboys players that took time after a long game the night before to come spend time with so many special children here at Children's Medical Center.  It was such a treat for the patients and families, and a memory that will last a lifetime.

I mentioned yesterday that I have some thoughts swirlling around that I feel like I need to get out in writing.  I'm just not sure I'm ready to sort them out yet.  I will say that this latest challenge that Keegan has faced changes so much of our picture.  That's a big part of what I'm struggling with right now.  I am so beyond happy with the progress he has made and how well Audrey and our families have handled this.  I'm very much caught up right now in living day to day and being grateful for the improvements that have been made.  But I know that I will have to think about the future soon, and I'm not sure I'm ready for that.  If there's one thing I know, it's that so many people are praying for Keegan and also for our family.  Because of that, I know we will never be alone, no matter what happens, and I can afford to live in the moment a little bit longer.  Thank you once again for your prayers.  I'm not sure where we would be without them. 

Thursday, December 9, 2010

Thursday

Not much happened today.  Hopefully, Keegan will get most of his cardiac testing out of the way tomorrow.  We have a plan set in place for advancement of his feeds and getting him off of TPN.  Today was the first day we felt everyone was on the same page for that, which was helpful.  Of course, the best laid plans are always dependent on how Keegan's body tolerates everything.  Only time will tell that.

He is still putting up a huge battle each time we try to get him out of bed.  Once we got him going though, he did walk quite a bit.  His little friend, Brady, came to visit him today and convinced him to go downstairs to see the "choo choos."  I think it did his little body a lot of good and helped him feel a bit more normal.
Hugs from Brady

Getting a pep talk from the nephrologist

Loving on Mamie

Brady getting ready for his modeling career!  Seriously cute!

Ms. Stephanie and Audrey...think she's ready for Christmas?

Keegan and Brady at the "choo choos".
I love this picture because you can see how excited Brady would get when a train came by!

I have a lot more on my mind I feel like I need to get out the last few days, but I just can't seem to get my thoughts organized lately.  One day soon.  For now, I'm just happy to be able to post pictures of Keegan starting to feel better and with news of possibly going home soon.  I wish I knew a better way to say thank you to each of you for your prayers and support.  It just baffles me how many people are out there loving on my little boy.  If you don't mind, I'd like to ask you to pray for two very special little ones tonight.  Our friend, Jameson, who had a bone marrow transplant this fall has been fighting the back and forth in the hospital for the last 100 days.  He is having trouble tolerating his feeds and suffered almost every complication in the book it seems.  Little Miss Avery has been in the hospital since before Thanksgiving with a mysterious bone infection.  Yesterday, she endured yet another surgery looking for a source and has been enduring an enormous amount of pain in her little body.  Please include these two little warriors in your prayers.  They are both in desperate need of the healing and relief, as are their precious families.  Thank you so much for lifting them up as well.  More tomorrow.