Tuesday, November 30, 2010

Tuesday

A little update on last night and Tuesday so far...

  • Late, late last night, we finally found a pain medication regimen that seemed to help Keegan even out a little and be more comfortable. Another big part of his discomfort was a burning sensation while the dialysis fluid sat in his system, and they added some chemicals to the solution when he was "spiked on" to dialysis again last night. That really seemed to help his irritability, along with a few alternating meds to help with the itching caused by the high level of toxins in his body. Relief from all those symptoms meant he was actually able to get some rest that he desperately needed.



  • He had a few more bloody, wet diapers last night, but he hasn't had any since about 4am. This is to be expected (stop and go production) for awhile. No matter what they look like, it is a positive sign that he is maintaining at least some kidney function of his own at this time.
  • The dialysis is doing it's job. We pulled off more than we put in him yesterday, and the level of toxins in his blood is starting to come down. One level went back up today, but again, this is only day 2. The drained fluid is much clearer and so far blood-free today! As swollen as he is, it is a different type of swelling than can be improved by dialysis, although he certainly looks less puffy today. The edema he has now is what's called "third-space" fluid, what has leaked out of his cells, and will take time to correct.
  • His red blood cells have stopped breaking down so quickly, although his platelets are still extremely low and continuing to drop. We will not replace platelets unless he starts to bleed because (1) they carry a much higher concentration of donor antibodies and (2) the more we give him with this syndrome, the faster he will break them down.
  • He is still on oxygen.  We tried to stop it this morning, and he quickly proved that he still needs a little support.
  • His mood is much improved today, although he still has precious little energy and is highly irritable if not being left completely alone. He did ask for "colors" (aka crayons) this morning and sat up twice on his own. Until this morning, every time we asked him to sit up, he would fight us. We are encouraged by all these improvements today!

  • We held off on getting his TPN (IV nutrition) started last night because more fluid needed to be drained off by dialysis. He was allowed to drink some water last night, which was such a relief. Oddly enough, once we were able to offer it to him, he didn't really drink that much. The good thing is that he was able to keep down the water he did take in. Today, we are starting the TPN/lipids and also very, very tiny amount of pedialyte through his g-tube. If he tolerates that today, then we will try a very weak version of his formula tomorrow.

We are excited that we will get to see Audrey this afternoon. She can't come to the ICU floor, but Gray and I are looking forward to going down to the lobby to see her. She is doing just fine with my parents, but we really miss her. Some photos from before Thanksgiving that I never got to share:


Two peas in a pod!

That's about all for now.  I really can't explain to you how much we appreciate all your calls, texts, visits, blog comments, and facebook posts.  We are living moment to moment right now, and once we get to a recovery floor, visits and meals will be much easier to coordinate.  Thank you again for traveling this difficult road with us.  It is going to be a long one, and it helps to know we're not alone.  We will update again soon.

Do you not know?  Have you not heard? 
The Lord is the everlasting God, the Creator of the ends of the earth.
He will not grow tired or weary, and his understanding no one can fathom.
Isaiah 40:28

Monday, November 29, 2010

Update

I'm so sorry for the delay in updates today.  Being Monday, we have spent a lot of time speaking with all the new attendings from the various specialities (ICU, renal, transplant team, GI, and hematology), in addition to our many friends from different areas of the hospital who have stopped by to visit today.  Keegan has also needed Mama & Daddy by his side more today, which makes it harder to get to the computer or phone.  Here's what we know:
  • Keegan is stable but struggling today with lots of pain and discomfort.  This is due to the type of dialysis he is on, the surgery from yesterday, the discomfort from uremia (swelling and toxins), and just feeling crappy.  He is very tired and agitated.  His labs show he is tolerating the dialysis well; the level of built-up toxins in his blood are coming down.  It will be a long road to bring the edema (swelling) down though.  He is still destroying his red blood cells and platelets, so we are anticipating more transfusions tonight or tomorrow.
  • The peritoneal dialysis machine - Keegan is on dialysis 24 hours a day right now.
  • We will start him back on TPN (IV nutrition) tonight.  He still cannot eat for a lot of reasons, but he is asking more and more for water.  It is so very frustrating for us; I can't imagine how frustrating it must be for him.
  • He did have one wet diaper earlier this afternoon - a great sign!  His kidney has obviously taken a good hit, as there was quite a bit of blood in the urine, but it is great that he finally got some out.
  • Keegan was put on oxygen via a nasal cannula this afternoon.  This is less due to his lungs/heart, and mainly due to the fact that his discomfort has kept him from taking deep enough breaths to adequately oxygenate his blood.
  • He is awake in this picture, unfortunately.  The edema is making it difficult to keep his eyes open.
  • His amazing heart is still going strong!  We still have no indications that this has affected his heart in any form or fashion, but his team is monitoring him very closely.
  • If Keegan continues to tolerate the dialysis and TPN well over the next several days, we would then be transferred to the renal floor, rather than the cardiac floor.  It is very likely Keegan may go home on dialysis.
Thank you again for your prayers.  It means so much more than we can say.  We have had some very serious discussions with his doctors today.  It has been difficult, but we are grateful that he is stable and hopeful for the best outcomes.  Keegan has always been a fighter, and he is showing it today. 

The Lord is my sheperd; there is nothing I lack.  In green pastures, you let me graze; to safe waters, you lead me; you restore my strength...even when I walk through a dark valley, I fear no harm for you are at my side.
Psalm 23: 1-4

Sunday, November 28, 2010

Dialysis

Just a quick update.  Keegan went to the OR this afternoon, and they successfully put in the dialysis catheter and a central line.  He received a platelet transfusion prior to surgery, and he's getting a blood transfusion now.  We should be starting dialysis in the next hour.  The platelets and blood are short-lived because his body is destroying them (hemolyzing) as quickly as we give them.  If we can correct the kidney failure, the blood issues should also start to resolve. 

I'm not going to dance around anything tonight.  He looks awful.  He is completely swollen, agitated, disoriented, and in pain.  He is absolutely parched for water but can't keep it down or pee it out.  He has started saying, "help please", "down please", and "all done hospital."  I don't think my heart could get more broken right now.  After three years and so many struggles, he can now finally verbalize what he is thinking, and it is absolutely killing me. 


After surgery...hard to believe, but he is even more swollen now.

To be honest, we are scared.  The literature on this condition does not exactly help.  This could go many directions, but this is the first time since post-transplant that I have sat helpless by his bedside and begged God to save my son.  We were not and are not ready for this.  I can simply ask for your prayers.  Pray for his comfort, pray that the dialysis begins to work, pray for his healing, pray for his strength.  We've never appreciated you more.  Thank you. 

And we're back...

...at Children's Medical Center that is.  In the PICU to be precise.  And headed to the OR this afternoon. 

I updated last that in the days leading up to Thanksgiving, Keegan's GI problems were getting worse.  Friday morning, Keegan woke up with a completely dry diaper and looking quite puffy.  He had no energy, hardly urinated at all during the day, and didn't want to eat.  The dry diaper is significant in that we generally have to change him at least twice overnight to prevent him from having an accident.  We are constantly on alert for changes in urination and edema (swelling) because (1) his transplant medications can cause kidney problems and (2) he only has one functioning kidney anyway.  We watched him closely Friday, trying not to freak out.  We started him on the antibiotic for his GI symptoms that he had been put on in Boston.  Saturday morning, he again woke up completely dry and even more puffy but with more energy.  We notified the transplant team.  They allowed us 4-6 hours to monitor him at home, but we decided a few hours into it that it was best to have him seen.

At 2:30pm, we arrived at the Children's Legacy ER by our house, and things steadily declined from there.  Keegan continued to not produce urine, and his labs were all sorts of crazy.  A chest xray indicated he wasn't in congestive heart failure, but he had a mild fever.  He was begging for water even though he wasn't peeing.  We decided to admit him downtown and were preparing to load him into the ambulance (his 8th ambulance ride so far) when he threw up for the first time.  We got to the cardiac floor downtown around shift change, and things still got worse.  Around 4am after more labs and monitoring, I got the dreaded message from our nurse that "the doctor was on his way to talk" to me. 

Long story short - Keegan is in renal failure caused by hemolytic uremic syndrome or HUS.  This is often seen in people with E.Coli infections, but it can also be caused (low and behold) by Keegan's primary immunosuppressant (transplant medication).  Basically, it is causing kidney failure and destroying red blood cells and platelets.  Keegan will be going into surgery this afternoon for a dialysis catheter and central line.  He is extremely swollen, and we are trying to keep him as comfortable as we can right now.  The important thing is that right now he is stable. 

The plan is to support him through this as best as we can with dialysis and blood/platlet transfusions as necessary, but we're probably looking at a few weeks here.  We caught it early and are hopeful Keegan will make a full recovery from this longterm.  However, we are dealing with the fact that he only has one functioning kidney already, and a hit like this could be very bad.  We are choosing not to think about that at the moment and trust that God has a plan for Keegan.  To tell you the truth, we are living in the moment right now and trying not to lose it.  Audrey adds a whole new dimension to being inpatient and particularly in the ICU, as she is not even allowed on the floor.  Please continue to keep Keegan lifted up in prayer.  We are so thankful for your undying support and love for our family and Bug.  We will update again tonight after surgery.  Thank you.

Have I not commanded you? Be strong and courageous. 
Do not be afraid; do not be discouraged, for the Lord your God is with you wherever you go.
Joshua 1:9

Thursday, November 25, 2010

Happy Thanksgiving

We hope everyone had a wonderful Thanksgiving.  We had a lovely time relaxing with family.

Audrey enjoyed her first Thanksgiving.  We are so thankful for such a happy, healthy, & beautiful little girl!

Thank you, Mamie, for making a feast fit for a king!

This was Keegan's first Thanksgiving eating the same food cooked for everyone else or at least being capable of eating it.  He was only 2 months old for his first Thanksgiving, was inpatient for his second, and last year, he was mostly tube fed, only eating a small amount of baby food & dry finger foods.  This year, he sat at the table and attempted several new foods, even though he mostly ate bread and some apple slices.  It's a start though.  I wish I could report that Keegan's tummy troubles were still getting better, but frankly, they are not.  After spending a lot of time discussing the situation with his doctors yesterday and this morning (yes, this morning - we are thankful for a team that understands and truly cares for Keegan, no matter the day on the calendar), we will go ahead with putting him back on the antibiotic he was on in Boston.  We will see how he does on it in the next week.  If it doesn't work, we have a plan from there, but we will discuss that if and when it happens.  Prayers would be appreciated that Keegan does improve without further steps.

Nice brother-sister shots are a bit hard to come by these days. 
 

Audrey tried my homemade pureed peas tonight for the first time. 

 This was her first taste official break from cereal, and she loved it! 

I could write some eloquent summary of what I'm thankful for this year.  But the thing that topped my list tonight was simple.  I kissed my baby girl and watched her snuggle up to her Daddy for one last bottle, and I could see how much she simply adores him.  After finishing Keegan's story and turning out his light, I curled up to cuddle next to him, and he quietly pulled my hand up to his cheek.  "You have no idea how much I love you, Buggy", I whispered to him.  "Uh-huh", he nodded as nuzzled his head into my chest and drifted off to sleep.  Tonight and every night, I'm grateful for every minute I get to hug them and tell them I love them.  I am thankful that one amazing family chose to give me another chance to do that with Keegan.  And no matter how hard the day has been, no matter what the future may or may not hold for us, in that one moment, our family has everything we need...one more day, one more hug, one more heartbeat, one more reminder of His love, one more blessing to be thankful for. 

Saturday, November 20, 2010

Lately

Due to the little blog break that I took, I think bullet points will work best to catch up on what's been happening in the Harrison house lately.  Grab a cup of coffee because it's going to be a little long!

  • First things first, catching up on Keegan's health.  The short story is he's slowly making progress.  His GI doctor thinks the back-slide in his condition was probably due to a virus that he never truly recovered from due to his immunosuppression and malabsorption issues.  He is on a probiotic and an antibiotic that are slowly...very slowly...starting to help.  If the antibioitc he is on for the next week still doesn't fix things, then we will probably go back to the one he was put on in Boston.  The good news is that he is still off his tube feeds and lost only one pound.  The other great thing is that his oral feeding seems to be improving, not declining, from all this.  The way he's packed it away some days recently - whew!  His labs are looking good again, and his heart and liver seem to be much happier too.  If we can get his GI issues back under control, I hope it will let him sleep more regularly at night.  Then I think we'd have one pretty funny, smart, cute little boy on our hands!
  • When Keegan wasn't feeling great, he spent a lot of time in his favorite chair watching some toons, and he's been pretty content to let Audrey join him these days.
  • Audrey is just growing up before our eyes.  She turned 5 months old at the beginning of the month.  She is still a pretty happy little girl.  She just started wearing size 2 diapers, although they're a little big, and she wears mostly 3-6 month clothes, still some 0-3s though.  I think she is probably about 13.5 pounds.  She started making that little "raspberry" sound with her mouth recently, which she thinks is absolutely hysterical.
  • The day after she turned 5 months, she all of a sudden started sitting up on her own (still need a good pic of that).  There's no slowing her down now!
    A great smile...even if she is flashing you!
    She loves her big brother so much.  She leans into him all the time and gives him what we call her "teen idol" stare.  I have to catch that on camera soon.
    Holding big brother's hand makes me happy!
    Her first high-chair experience at Mamie & BD's house.  We've been feeding her at home in the Bumbo chair, but we moved Keegan to a booster seat to clear the high-chair for her.
    She still only eats solids once a day.  We're usually out and about in the mornings, but we'll have to work an extra feeding in soon.  She likes rice or oatmeal cereal with formula better than water.  She wasn't too fond of applesauce until we mixed it lightly with cereal.  She seems to like the bit of veggies we've stolen from Keegan a few nights though (he still eats veggies in puree form - hey, if it means he eats them!).
    I bought a little baby food steamer/blender contraption to try my hand at making the baby food again.  I tried with Keegan, but he never finished a jar/cube until earlier this year (at about 2 and 1/2 years old).  It was such a pain to make it if he wasn't going to eat it, but with two of them eating puree, I thought I'd give it a shot.  We'll see!
  •  Keegan seemed to be regressing with his speech for awhile.  I know his poor speech therapist was so, so frustrated, as were we.  She recently went back to making him sit in a glorified high-chair in a room with fewer toys, and he started doing better.  His teachers at school even commented that they could identify more of what he was saying lately.  He can count to 21 and backwards from 10 to 0, but we rarely hear him say his ABCs in full or part, although he has known his letters for over a year. 
  • The biggest step forward speech-wise has been his new ability to sing!  (Well kinda...but he's trying!)  Here he is singing the "Mr. Turkey" song from school and gobbling like a turkey.  He is a turkey!  Sheesh!
    We're working on some of his songs from school every day, so hopefully, I'll catch it on video soon.
    He can't leave BD's house without "climbing" the tree out front.
  • Each Christmas, both campuses of Children's are adorned with tons of trees, garlands, and wreaths that different groups volunteer to decorate.  This year, my dad's company sponsored a wreath for the Legacy campus, and our inside sources made sure it will be in the Ambulatory Pavillion where Keegan will see it every week.  As long as it doesn't get messed up in storage, it will be used every Christmas!  So neat! 
  • This morning, Keegan helped my parents drop off the wreath for the holiday decorations.  Isn't it beautiful?!  It says "BELIEVE" across the middle and has the cutest reindeer on the bottom who is holding a heart.  Pretty fitting for our heart kiddos!
    Audrey joined in the fun too.
    Doing a little dance for the Women's Auxillary gals that were collecting the wreaths.
    It's just a little sad that she is already so familiar with this place.  This morning and Wednesday morning, Keegan cried on the way to the hospital but was fine once we were inside, but he didn't get upset when we were there yesterday for a procedure.  I asked him a little bit ago why he cried this morning (which I did not expect an answer to) and he said, "no horsies."  AH-HA!  He cried the two times because we took the Quincy entrance which goes by the horse pasture, but they weren't out there!  He didn't cry yesterday because we took the Legacy entrance which doesn't have a view of the pasture.  Smart kid.
     
    Just some of the wreaths collected for the hospital. 
  •  Last but not least, I realized that I had not shared some exciting news with you.  Keegan was selected to be in the 2011 calendar for the Children's Organ Transplant Association! 
  • The cover
    I might be biased, but this is the cutest Mr. October I've ever seen!
    The calendars are given to employees at transplant centers and organ procurement agencies throughout the country.  If you are truly interested in one, let me know!  I have some to give away and can get more if needed.  Thanks for supporting Keegan and other kids like him through COTA!
  • I think that's about all the news fit to print at the moment.  Sorry for the lengthy post.  As one of my friends says, are your retinas bleeding yet?  I hope to be back on the blog more soon.  Thank you for your love and support as we've dealt with the losses of so many friends lately.  It can take it's toll, but we are continually strengthened by God's promises and the support of our friends and family.  You are so appreciated!

Thursday, November 4, 2010

Kinda crazy

Obviously since I'm just now getting to post Halloween pics, things have been a kinda crazy around here lately.  We've had Keegan in and out of the pediatrician, cardiology, lab, and GI doctor this week, and I'm afraid we don't have a lot to show for it.  To make a long story short, some of his old tummy problems have started to make a comeback.

Around the time things got really bad & we decided it was due to his overnight tube feeds, we switched him to daytime bolus feeds, but his magnesium levels were also too low.  A little background....one of his main heart meds makes it difficult for his body to absorb magnesium.  Too little magnesium causes heart arrythmias, which are hard to treat on the denervated heart of a transplant kiddo.  To raise magnesium levels (in addition to eating mag-rich foods), you give milk of magnesia.  This causes more frequent stools in healthy people, but in Keegan, it usually results in awful diarrhea.  He couldn't take it after just two doses.  We stopped the mag and eventually stopped his tube feeds completely at the beginning of the week.  We ran a bunch of labwork that didn't tell us much of anything at all. 

We hoped that by going cold-turkey on the formula tube-feeds, Keegan would show us that he could handle eating normally.  Not so.  We have an appointment with his GI doc tomorrow to discuss, but without the formula, he has returned to the way things were back when he was inpatient for all those many months. 

I can't say I'm not disappointed.  I feel trapped in an endless, vicious cycle that's merely compounded by the fact that no one really knows what is causing it.  After almost two years of this and so much progress, we still don't know what's going on.  I would be lying if I said I didn't fear it was all starting over again.  It's maddening.  Add this to the losses of friends we've suffered lately, I'll admit I'm pretty spent.  Burned out.  So, I will probably be taking a little break from the blog for a bit.  If we get some good pics, I'll be sure to post them and surely will keep it up to date if anything new crops up.  We don't have any major holidays or outings planned.  In all likelihood, we'll be staying at home quite a bit until things are a bit more stable.  And as cold and flu season is starting up in full swing, I frankly need some time to just catch my breath.  I know that's pretty difficult to do with two little ones, but I'm trying my hardest.  Thanks for your understanding and most of all, for your prayers.  We really do appreciate them.

Halloween...finally

Well, I guess it's about time I posted Halloween pictures!  Keegan was a cowboy, and Audrey was the chili pepper this year.

Keegan's godfather, Teague, came into town for most of the holiday weekend.  We were so happy to see him again.  Keegan's grown quite a bit since the last time Teague was able to break away from work!  Keegan had fun showing Teague his fort and all his toys.


Audrey and Teague, getting ready for her first trick-or-treat!

The contemplative cowboy...

The getting-more-confident cowboy...

Just a cute cowboy tushie picture...

Giddy-up for our first Halloween party!  Yup, we decided to try to keep the kiddos in the neighborhood this year with a Halloween party at our house.  Of course, we kept up the tradition of homemade chili and...

The infamous glowing, ghost cake (unfortunately, this was the best shot we have of it...it was a tad bit busy here on Halloween night!)


The Miss A's

Superman Kaden & monkey Cam with their mama, Lisa

Strawberry fairy Lila

The Cinderellas (Ainsley & Dani) and fireman Blake

Walker (dressed as Pablo from the Backyardigans)

Lainey (as Uniqua from Backyardigans) and Spiderman Gage

Carter as a gnome!

After some chili, hot dogs, and ghost cake and plenty of time playing outside on the fort and an awesome little bounce house borrowed from our neighbors ChiChi & Brian, the trick-or-treating commenced...
Keegan, Carter, Lydia (as a frog), Lucas & Liam (as Buzz & Woody) hit the neighborhood for some loot!

Lainey, Ainsley, Dani, Paulina (as Jesse), and Gage kept going long after Keegan had given up and was in bed (that's what happens when you're the lone ranger who doesn't nap anymore!).

All in all, it was a pretty good Halloween and a great way to end a very stressful week.  Thanks to all our friends who came and contributed to the party.  It meant so much to them having fun!

**Since I hope the kids will be able to look back on this blog later for memories, I wanted to note a quirk that comes along with having a child with feeding issues.  Keegan has no idea what candy is.  (Although now that he's in school, he has definitely learned what cookies are!  Geez.)  Hand him a wrapped piece of candy, and he will look at it quizically and toss it aside.  So, I simply emptied it into the bag of leftovers to bring up to school to send to the troops.  Not a single piece was consumed.  How long do you think that will last?  I''m not sure, but I'll bask in the days, hopefully years, before the sugar-high sets in!  Ha!