Thursday, June 30, 2011

Brief Interruption

I know I promised to post again with the rest of the news about Keegan's medical issues.  I didn't get to it last night, and since I don't have the energy tonight, I just wanted to post an apology/excuse.  Both kiddos have been having sleep issues.  But here's a little bit of what else has exhausted me the last few days:

  • Gray had to go out of town for work.  Most dads have to go out of town every now and then.  Just a little harder when all the medical issues fall on one set of shoulders.
  • Take both kids to the hospital around Audrey's naptime for Keegan's bloodwork.
  • Horrible...horrible...horrible GI day for Keegan.  Lots of diapers, lots of pain.  No fun.
  • Gray and I literally mix Keegan's TPN every night, spike the bags, prime them, and hook him up ourselves.  We do this usually around 10pm at night.  As a team, we are well-oiled precision and knock it out very quickly.  Much harder to do it yourself.  With a pump alarming to a mystery occlusion.  So I respike the bag, prime the air out, get almost done, and it happens again.  Finally figure out after way too long that it's a faulty Y-connect.  
  • When I go to hook Keegan up to his TPN, his port won't work.  Somehow, someway the needle had come dislodged.  What? How?  UGH!  Call my parents at 11:30pm to come over to help me.  Pluck him out of bed, reaccess (let me tell you my state of mind having to call my parents out of their bed and then waking up my child at midnight to stick him with a giant needle).  Get it working, him back to sleep, and in bed myself just before 1am.
  • Audrey is up at 1:30am.  Can't get her to get back to sleep until 3:30am.
  • Keegan is awake at 4am.  Get him back to sleep at 5am.
  • Sleep for a paltry 2 hours.  Yeah.
  • Check the residual feeds in Keegan's stomach through his g-tube in the morning.  Get bright yellow-green fluid out.  Seriously?  That means bile was coming up from his intestines back into his stomach. (Science lesson: acid in your stomach is clear.  Your pancreas is "below" your stomach and releases bile as food passes through into your intestine.  This mix becomes a nice yellow/green color....theoretically.)  
  • GI says Keegan needs an abdominal xray to ensure there's no obstruction.  Get my mom to come sit with Audrey during her nap.  
  • No obstruction.  Lots of air and diarrhea (surprise), but otherwise looks about normal for Keegan.  No idea why the reflux but doesn't happen again the rest of the day.  He is acting the same other than that.  We agree to wait and watch.
All that being said, I'm begging, begging my children to allow me to sleep just a little tonight!  Please and thank you.  The best part of the day was Keegan's reward for being a trooper the last two days.  Daddy got home this afternoon.  Keegan has seen multiple TV commercials for Cars 2, and we hear about it every time he comes across anything Cars related in the house.  He stayed in good spirits all day yesterday, including handling the middle-of-the-night reaccess well overall.  During his xray, he stayed on the table, perfectly still, as instructed by the tech, without me even having to ask/bribe/console/etc.  So, Daddy grabbed a mask and a bottle of Purell and took him to Target to pick out his very own Cars 2 figurine (well, 7 actually...yes, 7).  He was a very happy camper.


Here's hoping for a better night and a calm weekend.  I will finish the medical update tomorrow!  I promise! 

Tuesday, June 28, 2011

What we know - Part 1

The word that rolls most frequently off my tongue and through my mind right now is IF.  So, I'm not sure entitling this post "what we know" is a good idea because frankly, we don't know a lot of things, or anything for that matter, for sure right now.  However, this is my attempt to start connecting the dots of what we've discovered, conjectured, theorized, and hoped over the last few weeks.  I'm going to start with the GI stuff because...well, because the heart stuff is still a little too much for me to deal with right now.  FYI - there will be potty talk to follow.  Here goes nothing...

So you may know that Keegan has had diarrhea his entire life.  Literally, every single day of his life once he started having bowel movements around 3-4 weeks of age.  It is that way every single day, whether he is fed or not.  He was once on gut rest for an entire week and still had diarrhea every day.  Keegan has never once...ever...had a formed stool.  We have spent almost all of the last 3.5 years trying to figure out why.  It wasn't until the colonoscopy performed in April of this year that we had some clues.  Given the fact that Keegan had a heart transplant, the pathologists at the hospital interpreted what they saw as classic graft-vs-host disease, where the DNA from Keegan's donor, Johnston, managed to form antibodies to his own intestines.  It was a rare, but not unheard of, complication of a solid organ transplant.  The options for treatment weren't great, but there was hope that it could be treated into remission, providing Keegan a small window of hope that he could eat normally and have normal GI function at some point.  We planned to start him on a high-dose 4-6 week long "pulse" of steroids to treat the cell-death process.  Then we performed the blood test to confirm that diagnosis.  It was negative, and in the same blood test, we found that Keegan had actually formed 2 different types of antibodies to his heart.

For a few brief days, we were all relieved that we might have an answer, and in another brief second, it was taken away.  The chief pathologist at Children's then called upon his peers at several different hospitals and mainly at Children's Hospital Boston, where Keegan was treated in 2009.  We waited (sometimes not all too patiently) for almost 2 months for Keegan to be healthy enough to start the steroids and to hear if anyone had any other ideas based on what they saw.  Without a guiding diagnosis, we knew that there were few options other than steroids.  Keegan underwent another colonoscopy 2 weeks ago to see if anything had changed before we started the steroid pulse.  Not much had changed, and we proceeded as planned.  Other than a temporary reprieve from the fevers, we haven't seen much improvement from the steroids.

Wednesday afternoon, I was playing with Audrey in the playroom at the hospital while waiting to see if Keegan would be discharged that day.  The nurse practitioner on the floor came in and asked if I would come back to the room because the attending had something she wanted to talk to us about right now.  Never a good sign.  Truly one of my least favorite phrases.  Other than a physician flat out calling you on the phone unexpectedly, hearing "the doctor is coming to talk to you" is the most heart-twisting things a parent can hear.

Autoimmune enteropathy.  That was the consensus after much deliberation over the last few weeks.  That Keegan is attacking his own intestines.  We jacked up Keegan's immune system so much starting at the tender age of 1 week old that his body does not know up from down, or rather himself from anything else.  This would not be your typical case of autoimmune enteropathy.  We also may never be able to confirm it.  We will run the bloodwork once he is weaned back down to a "maintenance" dose of steroids, but since we cannot completely take him off of immunosuppression drugs without risking rejection, it is likely we won't be able to get a true blood test.  His biopsy results support the diagnosis though, as well as his history.  The only time he was not on an elemental formula was from month 2-12 when he happened to be on a higher dose of steroids.  The condition can also go into remission for no other reason, which may partly account for his temporary improvement last summer (that of course also left as quickly as it came).

It is a great thing to finally have an idea of what is going on, even if it's not affirmative yet.  The problem is there are very little other treatment options available to us.  So having a "diagnosis" does not necessarily make any difference whatsoever.  The reason this was never brought up before is because Keegan is theoretically already being treated for this condition.  The treatment is immunosuppressive drugs.  Keegan has been on one form of immune suppression or another every day of his life except day 1-5 to prepare him for transplant or try to keep him from rejecting his transplanted heart.  There is one other drug that has been used with limited success for AE, and the heart transplant team has no objection to its use.  This drug has the potential to aggravate some other blood conditions Keegan already suffers from, but we may still have to try.  Other more experimental options, like a bone marrow transplant, are not an option for a child who has already had a heart transplant.  A bowel transplant might buy him time or relief, but it's more likely that his immune system is so out-of-whack that it wouldn't matter if it was his own or another's intestines.  They will always be a target.

The plan for now is to continue with the high-dose steroids until Keegan's next echo appointment on the 7th.  If his heart function is at least stable, we will start weaning the steroids down to his old low-level dose over the course of about 2 weeks.  We will then repeat the colonoscopy and see what's going on.  At that point, we would consider starting the final drug, Immuran.  This plan could change at any point if there is any change at all in his heart function (that will be another post).  The GI problems are being accounted for with his 16 hours of TPN every day, so they will take a back seat to his heart if needed.

That's the news to share on the GI front for now.  I will reserve my overall impressions and thoughts on it all until I've posted the rest of the medical picture.  Although I'm sure you can guess how we feel about all this.  Relief from having some...any...guidance in how to proceed or help Keegan feel better.  Despair from realizing that there is likely no cure for Keegan.  Tube feeds (and more than likely TPN too) will be part of his picture in some form or another for the rest of his life.  What do you say when your last bit of hope for a normal life is all but gone?  Even if his heart was perfect, even if he was developmentally and neurologically perfect, even if everything else stabilized...tube and IV feedings will remain.  Sigh.

And that's what we know...part 1.  I apologize for the delay in getting this all out there.  As I said, it's been a lot to process.  And I've only just begun. Thank you for your prayers as we go through this difficult time.  Keegan had a slightly better day today after a rough start.  The days he says he doesn't want to get out of bed are the hardest.  At least it got better as the day went on.  Thank you again...unfortunately, part 2 is still forthcoming.

Sunday, June 26, 2011

Picture catch-up

We are still at home.  A weekend at home together.  It was nice to be able to say that again.  Keegan has been home for four whole days, and we're hoping to stay here for a little bit at least.  He has his good moments throughout the day.  It could be worse, but it could be lightyears better too.  

I will give a full medical update very, very soon.  Probably in a few different posts because there is a lot of information to digest.  Keegan's next echo will be on July 7th.  We would really, really appreciate any and all prayers for him to stay at home through then at least!  

I realized that the last several posts had no pictures, so tonight, it's time to catch up with a few.  I don't have many, or many good ones at that, but hopefully, you will forgive me when you see these sweet faces.  More of Audrey than Keegan because he hasn't exactly felt like having his picture taken lately.

Music therapy always makes him happy.


Our friend, Brady, came to visit in the hospital the other week.  Unfortunately, Keegan had to spend a little extra time in the PACU that day coming out of his colonoscopy and missed him.  Audrey got some pretty good kisses and hugs from Brady and gave some too!  Heehee!

I have way too many pictures of Audrey eating.  Maybe, just maybe, it's because it just amazes me to see a little bit like her pack it way.  Or maybe it's those cute faces she makes.  It's a draw.

Getting some lovin' from Aunt Alex last week.  Alex and a lot of our friends who are nurses and staff members are down at the yearly summer camp for kids with heart defects, Camp Moss.  They always have a great time.  We're praying that everyone has tons of fun and stays safe in the heat this year!

Mischief....with a capital M.  It's the red hair.  Predisposition to mischief.

How do you make Mama and Daddy laugh at night when Keegan's in the hospital?
Have Big Daddy text them pictures of your post-bath faux hawk, of course.

Eating her cereal and drinking her milk while watching 'toons.  Such a big girl.

Very intently watching the 'toons, I might add.
Poor thing has developed a SEVERE case of separation anxiety due to all the back-and-forth.
She woke up completely beside herself around 10pm on Friday night and could NOT calm down.  I ended up putting her in the car and just driving until she fell asleep....all the way to Prosper and back.  Hope this stage ends quickly.  Gas prices are too high for that right now!

Keegan was feeling pretty rough on Friday night before bed.  He only perked up when we offered a wagon ride.  Since then, he has asked for one every night, and we are happy to do it if it makes him feel better.  Wish he was running in front of it instead of riding, but hey, it's sunshine, fresh air, and some quality brother-sister time at home.  We'll take it!



Wednesday, June 22, 2011

Home

It was a very long day with a lot of information to process.  The team kinda wanted to keep him another day, but we decided to come home tonight.  Even though it was another rush-hour discharge that brought us home right before bedtime.

Keegan's heart function is stable - no improvement, no change.  We'll take it.  Repeat the echo in 2 weeks.  Got more information about Keegan's GI problems.  Interesting.  Lots to process there.  Started a new treatment for the "mystery wound" to be followed up on Friday in clinic.  No drainage really from the port, although we did have to do a last minute needle change right at bedtime because the hub on the line somehow came off during the day.  Sheesh.

I will update with more information soon.  I promise.  Lots to think about and research.  Lots left to do tonight.  And one whopper of a headache.  I apologize for the shorthand tonight.  We are very thankful for your prayers as we continue to make the best decisions we possibly can for our Bug.

Tuesday, June 21, 2011

Tuesday

We finally got an IV in Keegan's left hand after a good dose of valium.  Labs, 2 x-rays, and an initial surgical consult later, he was finally asleep for the night around midnight.  At one point, the IV team looked up as he fought them (after the valium dose) and asked where Keegan gets his strength.  Gray and I both answered "steroids!", but I guess the more eloquent answer would have been from God.  Yeah, that sounds better for sure.

The dye study showed that the port was in place and apparently working, although they did note some fluid on his chest in the area around it.  We ultimately decided to reaccess the port with a new needle around 3:45pm and run his maintenance fluids through it until bedtime.  It did not appear to be leaking terribly for those few hours before his TPN was ready, so we are running his normal TPN/lipids through the line tonight.  If it leaks at all through tomorrow, we will have to rest it for at least another 48 hours.  Then, I anticipate we would need to consider putting another PICC in for him to get his full nutrition.  At this point in time, we still think it is general infiltrate and edema that is leaking out, but we can't be sure just yet.  The nurse on the floor who accessed him today agreed with me and the oncology nurse from Friday that it just doesn't "feel" like the hub is in a good place.  Again, what that means?  Not really sure.

Tomorrow, Keegan will have his follow-up echocardiogram while we are inpatient.  The last echo done independently picked up on the stiffness in his heart before it was confirmed in the cath lab.  Our plan is to repeat the echos every two weeks for a bit to see if there are any changes.  If his pressures look worse or there appears to be any tissue being affected by them via echo, Keegan will go back to the cath lab.  If not, we will slowly extend the time between echos and re-cath in December.  The "mystery wound" looks a touch less angry today and has continued to drain significantly today.  The transplant and wound care teams are worried about it becoming infected, so I believe they will try a new way to cover it tomorrow.  We are nervous to put him on preventative antibiotics in case we mask any infection while he is on steroids.  We are also hoping to get some more information on his last colonoscopy results and what the feedback has been from pathologists at Boston and wherever else they were sent as far as his previous biopsy results.

Keegan seemed to feel all kinds of bad today.  He is back in the swing of functional constipation one day, followed by massive bad diapers the next.  Nothing today but a LOT of cramping and discomfort.  Now, Keegan's up to about 3.5 pounds of extra fluid retention too.  He showed a little energy here and there, which was always quickly followed by long stretches of lying in bed.  He is so over anyone poking on him or asking him to do anything he feels might remotely lead to a medical procedure, like wearing a mask to go outside.  Right before noon, he literally fell asleep in front of us as I consulted with the GI team.  By 7pm, he was asking to go to sleep.  By the time all the night shift meds had been given, it was around 8pm.  He told me to stop reading Horton Hears a Who and sing to him.  He was asleep before I could close the book.  I sure hope it's just the steroids taking their toll on him.

I have to thank you for the many words of encouragement and prayers yesterday.  We try to stay as positive as we can for Keegan through all of this.  There's so much about it all that I just hate.  I know I should take the time to write it all out.  It would probably make me feel better.  But most of the time, I think no one wants to hear about that.  Most of the time, I struggle to lay my excuses and worries down before the Lord and ask Him to fill that place with trust and faith.  Even a mustard seed, right?  Thank you for giving me that little seed by lifting our family up in your prayers and extending your kind thoughts and words.  Some days, that's all we can ask for.

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.

Thursday, June 16, 2011

Change of Plans

Keegan is not necessarily doing any better.  A few more smiles today and much less bleeding.  But we did decide to bring him home this afternoon.  We know that giving him blood would make him feel better, but his counts have been stable the last two days.  As a transplant patient, we tend to wait longer to transfuse Keegan because every transfusion can introduce antibodies that could complicate things in the future.  Keegan is also holding on to about 3 extra pounds of fluid right now.  If we gave him blood, we would have to chase it with additional lasix to prevent completely fluid overloading him.  However, if we misjudged the lasix and dehydrated him at all, we risk challenging his kidney too much.  It is certainly a difficult decision because of the fact that we are sure the blood would help him feel better.  The risks are just too great right now.

Once we saw that his labs were fairly stable today, we were faced with a no-win decision.  (1) Go home today and possibly be home for just a day or two due to another fever, or (2) wait it out for another day and night, be there in the middle of the night if he does spike a fever for blood cultures, and hope he stayed stable enough through the fever to go home.  How the next two days will go as far as the fevers that have been so very difficult on Keegan go is anyone's guess though.

It basically came down to one thing though.  Keegan looks and feels like absolute CRAP.  Unfortunately, we do not have a single lab results/test result/biopsy result that tells us exactly why or what we can do to make it better.  Since there was nothing we were realistically going to do to help him in the hospital over the next day and a half, we decided to come home.  The team made it very clear that it is likely Keegan will be back inpatient before the end of the weekend.  I think we are all praying that's not the case though.  Maybe this will be Keegan's weekend.  Maybe things will start to go his way.

I have to say that is difficult to imagine right now.  Six weeks ago, Keegan would have run out of the hospital like his hair was on fire.  He would have demanded to see the trains and "his fish" in the garden before leaving.  A month ago, he could make it half way across the skybridge to the parking lot from his room before stopping to catch his breath.  Today...well, today, I had to carry him from his bed all the way to the car.  Until today, he would run into the backyard once we were home and refuse to come in until bedtime.  Today, I had to carry him from the car to the couch where he stayed until BD came to see him.



Other than playing (from the couch) with BD and showing off a bit when my friend, Charlotte, came with dinner, he has had zero energy whatsoever.  He is certainly feeling the moody side-effects of the steroids, but the crazy energy they should bring has not shown up yet.  Tonight, we are praying that this is the beginning of a period of improvement for Keegan.  We will update with more information soon.  We are certainly appreciative of your prayers now especially.  Thank you!

Wednesday, June 15, 2011

Updates on 2 kiddos

Another quick update again tonight.  I am going home tonight to get ready for a presentation I'm giving to the Executive Committee of the Solid Organ Transplant Center here at Children's tomorrow.  If I get approval from the Center's leadership, the program will be a great step forward in achieving patient-family centered care for our transplant patients.  I would love your prayers for clarity and support tomorrow...especially since it will be VERY early in the morning when my brain will likely not be working too well.  More about that if we actually get a thumbs-up tomorrow!

So, this is an update about both kiddos.  First, Miss Audrey had her one-year well child appointment today.  She is only 18.5 pounds, so still just a "little bit", as my dad calls her.  She has gained weight and 2 whole inches though, so her doctor feels comfortable with that.  No more formula for Audrey!  All in all, she got a great report, except that she does not "cruise" on furniture yet.  She will walk holding your hands, but she hasn't felt the need to be self-propelled yet.  If she doesn't start in the next 6 weeks, we'll reevaluate, but I'm sure it's coming.  Audrey also got all her vaccines today, including the live ones, with the approval of the transplant team and Infectious Disease doctors.  They felt it was better to vaccinate Audrey to protect Keegan than the small risk that she would expose him from a live vaccine.  So, here's praying that she doesn't develop any reactions to the MMR or varicella that would be dangerous to Keegan!  After her appointment, she and I went to lunch with Mamie and Alex before I had to return to the hospital.  It is so crazy to me to watch her dance with excitement as she eats!

I love this ONE year old Ladybug!  I promise to post more about all the fun things she is up to soon!


And now, about Keegan's day...he is beyond, beyond, beyond pale.  And so very tired and lethargic.  He refused to walk today and even was highly reluctant to take a small wagon ride around the hospital.  He took an afternoon nap but still was asleep by 7:45pm.  There is no way we will be discharged before the weekend.  He still needs blood, and he will likely need more IV lasix after that.  We are slowly getting scope results back.  They look grossly the same at first glance, but we'll await the official biopsy report before making any changes to our plan, if at all.  PICC is out!! (That was no fun.  Very glad I was at Audrey's appointment so that Dad had to handle that one.)  So far, I think he has tolerated the steroids well.  He is still bleeding from the scopes, but it is slowly getting better.  The only other curveball he threw us today was that he was having a very, very difficult time processing his extremely minimal tube feedings.  Not quite sure what to make of it, so we will just continue to watch for now.

My poor buddy.  Another first for Keegan today?  He feels so crummy and is so tired of it all
that for the first time ever when the transplant team rounded this morning, he sat up, pointed to the door, and yelled, "OUT!"  I was really hoping we wouldn't see that until the teenage years!


I will be honest and say that we are dealing with a lot of other things going on with Keegan right  now.  Not good things, but our team is doing a wonderful job of being proactive, involving us, educating us, and researching the best options for Keegan.  We are nowhere near ready to go into detail of everything, but we would really appreciate your prayers for Keegan's safety and healing, clarity and wisdom for his medical team, and peace and strength for our family.  Please know that we will share that information when we are ready.  For now, we appreciate your support and understanding.  Thank you again for everything!

Tuesday, June 14, 2011

Scopes

I don't really have the energy for a big post tonight.  Just wanted to say that Keegan did have another colonoscopy today.  They didn't see a lot visually throughout his colon and intestines.  However, the tissue is so sensitive over time that he suffered a good amount of bleeding from the procedure.  Imagine a burn victim whose skin sloughs off with the slightest pressure.  Yuck.  That should taper off over the next few days.  The "clean-out" was hard on him last night.  He has difficulty tolerating the solution that is used, and he threw up a good deal during it all.  He is asleep and hopefully it will be peaceful for him tonight.  Biopsy results won't be back until Friday at least.

We actually started the steroid pulse tonight.  There was no reason to put it off any longer.  We also accessed his new port and are using it now.  PICC should come out tomorrow.  The albumin and IV lasix did pretty much nothing to help his fluid retention.  We may have to repeat that again.  Considering the bleeding and the amount of blood taken for a large variety of labs today, it is possible he may need another blood transfusion this week too.

If he does well enough over the next few days, we could theoretically go home as early as Thursday afternoon.  If we get pushed into Friday for any reason, we will likely stay through to Saturday to see if the fever comes back.  Maybe this weekend will be better!  We are so ready to be home and stay there.

Lastly, I just want to put a big thank you out there to those of you who have brought food based on the Care Calendar and also those who have sent bows to donate in honor of Audrey's birthday.  Our hearts are so full from your blessings.  Thank you cannot even begin to describe it.  I really have no words.  We are completely humbled and beyond appreciative.  Y'all are amazing.  Thank you!

Monday, June 13, 2011

Here we go again

Keegan was, as we said earlier, admitted back to the hospital yesterday morning.  He struggled through Audrey's party and really declined quickly overnight.  He maintained a 103+ degree fever throughout the night and started retching and throwing up in the middle of the night.  Evidently, his body was trying to focus blood flow on more critical organs.  So his stomach couldn't tolerate anything in it, and his torso and head would be burning up while his hands and feet were cold.  By 5am, his temperature hit 104 degrees and back to the ER we went.  This weekend's fever was absolutely the hardest one on his little body.   Keegan felt so terrible.  It just broke our hearts, especially when he would start mumbling, "I'm sorry, Mama."


The fever finally broke by late last night.  We were already planning on coming in later this week for the steroid pulse, but since we are here already, things are kicking into hyperdrive.  Here's the plan for this week:

  • Today, Keegan had another infusion of albumin and IV lasix to try to pull off the extra 3 pounds he is carrying of fluid right now.
  • Tomorrow, he will have another colonoscopy done to get new intestinal biopsies.  Since the last scope was almost 2 months ago, we need to have a good idea of where we stand before the steroid pulse starts.  And who knows?  We might find something that gives us an idea of where these fevers are coming from.  Everyone has been quite quick to blame them on inflammation from his GI problems.  Maybe we will have a clearer picture after repeating the scopes and biopsies tomorrow.
  • Unfortunately, that means Keegan has to be "cleaned out" tonight.  Oh so fun.  Even though he has not had any feeds since early Sunday morning, you can bet the onslaught will be bad tonight.  The worst part is the high volume of solution that has to be pumped through him usually causes him to start throwing up at some point.  Yippee...
  • We are anticipating a neuropsychology consult sometime this week to get a good read on where Keegan stands cognitively and developmentally.  That way, we have a baseline with which to compare him months down the road if he develops more brain bleeds.
  • No matter what the scopes say, we will start the steroid pulse Wednesday or Thursday.  He will stay inpatient for at least 48 hours after it starts for monitoring.  We are most concerned that his bone marrow will have difficulty with the weight of the steroids.  Between the scopes, his anemia, and a few big labs that need to be drawn, it is conceivable that we may have to support him with another transfusion sometime this week.
  • As you can tell this puts us dangerously close to being inpatient or going home at his usual fever time.  The team is working on getting him set up through home health for IV tylenol at home, so that we can better support him there through another fever cycle.
  • The team wants to repeat an echocardiogram sometime within the next two weeks.  We will just have to see where we are when they want to do it.  Between his "stiff heart" (increased diastolic pressures) and the donor-specific antibodies, we are going to be watching his heart very, very closely from here on out.


Whew.  Another long and busy week in the hospital.  At least today he has started to perk back up.  This weekend was very difficult to for us to watch as he struggled so much.  Looking back, it kills me to see how sick he has gotten in the last six months.  I've said it before, but there are just so many aspects of Keegan's picture that are changing.  And I'm not sure I'm ready for that.  When Audrey was born, Keegan was having a good year.  I had high hopes that we would enjoy good times with our little family for a long time.  I'm certainly grateful for the memories that we have made and am looking forward to many more.  I just fear those are going to be fewer and farther between as we go forward.  I wish I had a crystal ball that could predict for me just how this was all going to go.  How bad it might get or how or when it might all be over.  Since I don't, I'm trying my hardest to make the most of every day - no matter where we happen to be.  We are exhausted and putting on our best faces seems to get harder each morning.  But we are trying...and we're so grateful for your prayers and support through it all.  The Lord has formed this path for us.  Thank you for lifting us up as we walk it.

I will lead the blind by ways they have not known,
along unfamiliar paths I will guide them.
I will turn the darkness into light before them,
and make the rough places smooth.
These are the things I will do.
I will not forsake them.
Isaiah 42:15-16

Ladybug's First Birthday Party





I would say Audrey's first birthday party was really wonderful.  We were all so happy to be together, and she just absolutely was the star of the show.  I wish Keegan had felt better and been able to enjoy himself.  All in all though, we were just so thankful for the opportunity to really celebrate Audrey's birthday with our family and Audrey's godparents, especially since Keegan ended up being admitted to the hospital again overnight.  

We obviously had a ladybug themed party.  My mom and sister really went all out getting it ready and adding some amazing little touches.  Thank you from the bottom of our hearts for helping create a party that was so perfect for our Ladybug!  We've already collected quite a few hairbows to donate to the hospital in honor of Audrey.  She received some really fun gifts, including a play stroller and doll cradle from Mama, Daddy, and Keegan, and a rocking chair that was mine as a child.  The highlight of the party was by far watching Audrey tear into that cake.  So fun to watch!  And such a change from our previous cake experiences!  If you haven't seen the video of Audrey dancing in excitement at the thought of her very own cake, scroll down and watch!  You won't want to miss it!

This little girl is such a light to our lives.  
We love you, Miss Audrey!  Happy 1st Birthday!!

Saturday, June 11, 2011

Time for Cake

See for yourself, but I think Audrey had a pretty good time at her first birthday party!



More photos to follow tomorrow! 
Keegan is struggling but still home.  Thank you for your prayers.

Ready or not...

Today is Audrey's birthday party.  In just one more hour.  Unfortunately, Keegan spiked another fever last night.  103.2.  It may not be too surprising, but it is certainly disappointing. 

We took him to the ER at 3:30am for labs and blood cultures.  They gave him a dose of IV tylenol that helped bring his temp down briefly.  Per our previously agreed upon plan, we then were discharged home around 6am to watch him from home without IV antibiotics.  Since we got home, he has spiked back up to 103 and has not come down past 100.5 with oral tylenol.  (He cannot have advil because of his kidney issues.)  The team said we do not have to bring him into the hospital until we feel that he needs more support, i.e. a cooling blanket or IV tylenol.  It sure looks like that's the direction we are heading.

But for now, it's time to celebrate one brave little girl's birthday.  In decked-out ladybug style.  I can't wait to share pictures of all the work my mom has done to help make this day extra special.  Unforutnately, Keegan will be spending the party in bed, but we are going to push to get through this afternoon at least.  We really would appreciate your prayers for Keegan and his team of doctors at this point.  I think we're all just about at the brink with all of this.  We will update again later.  Right now, it's party time.

Thursday, June 9, 2011

Ladybug Bows

For every one of Keegan's birthday parties, we've done some sort of fundraising in lieu of asking for gifts.  The first year, we collected hundreds of books to donate to the newly opened library at the Children's Legacy campus.  We donated 3 wagons to the hospital for Keegan's second birthday, and last year, we collected almost $500 in donations for both Children's Medical Center Dallas and Children's Hospital of Boston.

When we first planned Audrey's birthday party, I didn't want to do anything "in lieu" of because she was not the one benefiting from services at the hospital.  I figured she deserved her own party and gifts until she was old enough to tell us otherwise.

Then, I had an idea.  A hairbow drive.  Because don't you know my Ladybug loves her bows!



They don't have to be expensive, and they're easy to find.  Heck, my grocery store actually has a nice little selection!  So, we will be collecting hairbows in honor of Audrey's first birthday to pass out to baby girls in the cardiovascular ICU and transplant programs at Children's.  When your baby is very sick, you can't always put clothes on them.  But boys have their hats, and little girls have their bows.  And if you're a new mommy, anything you can do to let your baby know you love them means a lot...especially if they're fighting for their life.

So, if you would like to spread some Ladybug love to baby girls in the hospital, we would love to accept your hairbow donation.  If you know us personally, drop one or two (or a few) off at our house or with one of our family members (since we may very well be at our "second" home instead these days).  If you are not close or would like to mail it to us, shoot us an email at keeganharrison@yahoo.com.  We will send you the contact information for you to drop one in the mail.  Or if you'd like someone else to make it for you or want one that looks just like the ones Audrey wears, let me know that too.  My friend, Stephanie, at Patie Cakes can fill an order for you.  Bows do not need to be wrapped.  We will put them in individual packages with a note of encouragement to the receiving family before we deliver them to the hospital.

Thank you so much for helping us honor our Ladybug by bringing some sunshine to families during a difficult time.  We can't wait to see all the beautiful bows for beautiful babies!

Wednesday, June 8, 2011

Home...for a just a bit

Keegan was discharged last night.  He is scheduled to be readmitted next Wednesday for the steroid pulse. That is, assuming that Keegan makes it that long.  If he spikes a fever this weekend, we are going to try to manage him at home, if at all possible.  We will have to go into the hospital for blood cultures if it spikes, but the plan is to NOT give him IV antibiotics this time and see what happens.  Unless it turns out like two weekend ago when he needed a cooling blanket and IV antibiotics, we'll ride it out here.

Frankly, I don't know what's so magically different about this weekend's fever as opposed to last weekend's fever as far as the steroid pulse goes.  I suppose that if Keegan happens to not spike a fever this weekend, we will all be more comfortable going forward.  But if he does, it will have been a wasted week in my opinion.

Keegan had some good energy spurts today, but a lot of time was spent lying on the couch.  A few of his incisions are having difficulty healing.  He is sore in a lot of places.  I like to think he enjoyed being in his own bed and playing with his sister today.  We sure loved getting to snuggle with them both at bedtime today.

Thank you again for your prayers.  Tomorrow's Thursday...."fever day".  Here's praying that this time is different!

Monday, June 6, 2011

Audrey is ONE!!

Our little Ladybug is ONE whole year old!  My goodness!


The team on the cardiology floor reserved a conference room for us to have a little celebration for her this evening.  It wasn't an ideal way to spend her birthday, but I don't think she would have had it any other way.  We were all together, and that is what matters.  Keegan even made it out of bed to help her open a few presents and sing "happy birthday".



I don't know how a year could have gone by so fast.  I look back at pictures of my little girl from just one year ago and can't believe she has grown so very much.  Life seems so different now than it was twelve months ago.  I had so many fears and doubts about her arrival, about how she would handle this crazy family.  But looking at her today, I know she will be a strong, compassionate lady one day.  Audrey has completed our family.  We are so proud of you, sweet girl.  We love you with all of our hearts!!




Heaven blew every trumpet and played every horn
on the wonderful, marvelous night you were born.

-On the Night You Were Born by Nancy Tillman

Update on Keegan's procedures

Briefly, I wanted to give a little update on Keegan's surgical port placement and brain MRI today.  He handled the anesthesia fine, and other than being a little sore and tired, he is doing ok this evening.  By the time we gathered with our family to celebrate Audrey's first birthday, he was willing to sit up and ride in a wagon to her little party.


  • The eye exam that was done in the OR was to make sure no clots were thrown to his eyes from the bad port.  Since he can't tell us if he was having vision problems, the opthamology team was able to dilate his eyes and look for clots while he was asleep.  Cool, huh?  Long story short - eyes are all clear!

  • Rheumatology visited today.  There are a few genetic tests for periodic fever syndromes they may send off for, but ultimately, they didn't think they had much to offer us.

  • The new port is in.  The surgeon had a little difficulty getting it in.  He had to try several times and ultimately use ultrasound to find the vein in Keegan's leg.  It shouldn't be that hard.  Usually, you can feel the artery with your hand, and the vein should be much larger than the artery and right next to it. So usually, you can just "guess" where the vein is and get it on the first or second try.  Once the needle is in the vein, you thread a wire through it and guide it up where you want it to go.  That was very difficult to do also.  Dr. Megison didn't have a good reason why it was that way, except that maybe it had been accessed too many times in the past.  At any rate, it's in, and it is NOT accessed right now.  The plan is to let it heal for about a week before we use it.  And you better be darn-tootin' sure that we will test a blood-gas on it before using it the first time to be 100% confident it's in the right place.  The PICC will stay in for another week while we wait.

  • Brain MRI.  Hmm.  I am still not sure that we understand the results well enough to share them here, but I will say what we do know.  Keegan's last brain MRI was at the end of March after the mini-stroke (transient ischemic attack).  At that time, we saw what looked like a very large air bubble at the very top of his head.  We now know that it made it there because the port catheter was in an artery which pumped it directly up to his brain, not because it somehow made it through the PFO in his heart.  We repeated the brain MRI today because we wanted to be sure that the port hadn't thrown a cluster of bacteria (called an infectious emboli) to his brain that would explain the recurring fevers.  It didn't.  No signs of infection.  What we did find was quite a few small bleeds in Keegan's brain, including the area we previously thought was air.  We are not exactly sure why or how these are happening.  They do not appear to be "actively" bleeding according to the doctors.  Again, I don't think we understand it quite well enough for me to explain it tonight.  We don't think Keegan is in any immediate danger, and these findings alone will not keep us inpatient.  It definitely has us, as parents, worried.  Really worried.  Whether the doctors are or not.  We will continue to ask questions and seek answers and will share what we know when we can.  For now, we would greatly appreciate your prayers for Keegan's protection and that he continues to not show us any neurological complications from whatever these bleeds are.
That's about all from Keegan tonight.  As of right now, the team is pretty adamant about putting the steroid pulse off for another week.  We could be discharged late tomorrow or Wednesday.  They want to see if he spikes another fever this weekend and what happens without any IV antibiotics.  The plan would be to draw the blood cultures but stay home as long as he can be managed with oral tylenol.  Then, we would come back inpatient next week to start the steroid pulse with 48 hours of observation.  Theoretically.  I'm not thrilled with that plan.  I was trying to avoid bringing Audrey home for just a few days if at all possible.  It just confuses her so much.  We will see what people say tomorrow though.  Things can always change when we are talking about Keegan.

Thank you again for prayers for Bug today.  We certainly felt them and are so very, very grateful.

Sunday, June 5, 2011

Surgery & a birthday tomorrow

Keegan's fever that first spiked late Friday night finally broke, just as it has every single weekend, around 3pm this afternoon.  His blood cultures will be negative for 48 hours overnight tonight, so we will proceed as planned with surgery tomorrow at 10:15am to place a new port.  While under anesthesia, he will also have a repeat MRI done of his brain and an eye exam.  The first mystery fever spiked about 48 hours after the mini-stroke he had at the end of March.  We are going to repeat the brain MRI to make sure that the bad port didn't throw anything else off that is in his head and causing these cyclical fevers.  The eye exam goes hand-in-hand with the brain MRI.  It is highly unlikely that we will find anything, but we are still trying to rule absolutely everything we can out.  Doing it at the same time of the surgery will be one less round of general anesthesia for Keegan.



Obviously, tomorrow will be a big day for Keegan with these procedures.  But it's a pretty big day for someone else in our family too.

In just two short hours, my little Ladybug is going to be ONE!!

So, if you would feel so inclined, I'd love for you to join us in prayer for both these precious kiddos.  For Keegan's safety and clarity and sure hands for his surgeons.  For Audrey to know how much we love her, miss her, and treasure her as a daughter and sister.  This should be her very special day, not like this at all.

These last six months have been rough for our little family.  I hate that it will likely be this way for some time.  I pray that my children are stronger than I give them credit for.  That they will continue to astonish me with their resilience, courage, strength, and love.  They make every single day worth it. 


Saturday, June 4, 2011

*Sigh*

That's about the only sentiment I can come up with at this point.  As if somehow not putting it all in writing would make it go away.

Keegan's fever came back last night.  Again.  He has no energy whatsoever and barely sat up at all today.  So far, the fevers have responded to oral tylenol given through his g-tube, rather than having to switch back to IV tylenol.  He's back on IV antibiotics while blood cultures brew for 48 hours.  He had a difficult night last night, so hopefully tonight will be a bit better.


As of right now, we are assuming the cultures will come back negative, as they always have, so we are leaving him on the surgical schedule for Monday morning's port placement.  We don't think the fevers are related to his GI symptoms or the possible graft-vs-host (hoping to hear results from those new slides soon).  It does throw another detour on the steroid pulse.  While the Infectious Disease doctors are almost certain it's not an infection, we need to be as sure as possible before throwing gas on the fire with steroids.  If everything is negative on Monday morning, we are going to call for a rheumatology consult to see if they have any ideas as to what could be going on.  If they don't?  Well, I'm not sure any of us have any other ideas at that point except to look elsewhere for answers.  We certainly can't keep doing this.  Keegan can't keep doing this.

His heart catheterization looked pretty good at first glance, and he handled the anesthesia and 4-hour recovery period with his leg in a restraint to keep it flat and straight very well.  The biopsy results were rushed and found NO rejection!  Best news of the year.  There didn't appear to be any immediate changes in his arteries or any areas damaged by the bad port.  The veins looked fairly normal too.  In order to be extra safe though, the new port will go in through the femoral artery in his left leg and be tunneled up his torso to his chest, avoiding that part of the heart completely.  The only concerning issue was that his heart was very "stiff", meaning it did not relax well between contractions.  (This is called diastolic pressure and is the bottom number reported in a blood pressure reading.)  Considering the cuff pressures we've been getting and the need to keep his blood pressure medication high, this wasn't too surprising.  What we are not sure of is what, if anything, we should or can do about it.  Dr. G was going to look at the images from the cath more closely over the weekend and meet with us on Monday.

That's the little information we know.  I feel like the longer this goes on, the less certainty we have.  Every day adds new complexity with no new answers to Keegan's picture.  I'm so tired of not knowing how to help him.  I physically ache for him and hate seeing this go on day after day.  He is so much stronger than I could ever hope to be.  I wish I could say it's not taking a toll on him, but I worry that it is.  Some days are worse than others.  I pray that those days don't start coming faster.

I miss watching my babies play together and have fun.  I hate that this has become their interaction.  Audrey is one amazing little girl.  She loves her brother and seems to understand that something is wrong.  In one short day, she won't be a baby anymore, and I feel like I've completely missed the last six months of her life.  I just want to be a mother to both of these precious kiddos again.




Thank you again for all your prayers.  We are just floored by how quickly some of you signed up on that Care Calendar.  It means so much to us that anyone would take the time to do something so nice for us.  Gray and I are so appreciative of your support that gets us through these long days.  Really...thank you.

Friday, June 3, 2011

Hijacked again! Care Calendar

One more interruption of this blog...


I have been wondering for a while how to make this journey a little easier for Maddie and Gray. The best thing I can come up with is food.  As people who have been touched by this amazing family, we are in a unique position to help. Living at the hospital wears you down, being away from home, family and all the simple comforts that we take for granted.  The little things make a difference, a moment of quiet, a small distraction, or a home cooked meal.  I have set up a Care Calendar so that we can schedule some meals for Maddie and Gray while they are in the hospital and after they go home.  It doesn't have to be a gourmet meal, just something that they don't have to worry about.  It is best for them if the two portions are packaged individually.  They try not to eat in front of Keegan, so they very rarely eat together.  Luches or dinners would be great. 


The link for the calendar is www.carecalendar.org.
The Calendar id is 77135, and the security code is 2248


If you have any questions, please feel free to contact me, Kim, at arnoldtriplets@yahoo.com.


Thank you!


**Keegan's heart cath went well today.  NO REJECTION!!  Praise the Lord!! I will update with more details tomorrow.  Kim wanted to "guest blog" for today, but I really wanted to share the best news from the day.  The rest can wait until tomorrow.  Thank you again for your prayers today and biggest thanks to Kim and Chris for putting this Care Calendar together.  We are blessed by your friendship.

Thursday, June 2, 2011

And now...

...We go back to your regularly scheduled programming.

Thank you to my awesome hubby for filling in last night.  It was nice to get some good rest, knowing that today was supposed to be an easy day for Keegan.  After tanking him up on blood last night, we took a "lab holiday" today in an attempt to keep the blood in him where it belongs, and the doctors otherwise left him alone to give him a day of "rest" before his heart catheterization tomorrow.

Keegan has an entirely different interpretation of "rest", however...

After being cooped up in his room with no energy and feeling like you-know-what for a week, Keegan took out all that pent up energy and boost to his blood counts to run around like a mad man outside for about 30 minutes this afternoon.  Follow that with his first bath in a week, and by 7:15pm, you have the end result of...


Sooo, maybe we still have a little farther to go before we're feeling "better".  ;)

We met with our general surgeon today, who was able to work Keegan onto the OR schedule at 10:15am on Monday morning for a new central line (port vs. broviac line still yet to be determined).  He is on the cath lab schedule as "second case" tomorrow, which means we really don't know what time he will go down yet.  We are guess-timating about noon.  The heart catheterization will cover his entire annual work-up with heart biopsy to look for rejection, check for plaque build-up along the graft, and pressure check.  Additionally, they will look at the venous side of his heart to get a clear picture of any anomaly that allowed the last port to go into the artery.  The weekend should be relatively calm in between these two procedures.

We are unsure if we will be able to start the steroid pulse on Tuesday/Wednesday.  Steroids inhibit your body's ability to heal wounds, so surgery is obviously concerned about starting a higher dose too close to a procedure.  Our cardiology team isn't that concerned about it though, and again, our goal is to get Keegan started, stable, and home on the plan before Audrey's party.  We don't want to do anything to put Keegan in danger, but we are ready to be home for a bit.  At least as best as we can plan for at this time...barring anything that may come up during the pulse.

We are still of the opinion that the pulse is the best way to treat the cell death process occurring in Keegan's GI tract.  All of the infectious avenues have been crossed, dotted, then checked again as negative.  SOO, we are coming back to the thought that this may truly be a graft-vs-host type reaction afterall.  There are some case reports of GVH occurring in the intestinal tract but not the blood stream.  Not sure those repeat tests that will be sent out to Philadelphia or Boston will change our course of action or not at this point.  

A few more specific prayer requests for tonight:
  • Safety and clarity during the cath tomorrow.
  • If anything needs to be fixed based on what they see that it can be fixed easily in the cath lab.
  • No rejection or coronary artery disease; no areas of infarction (we know the bad port was throwing clots; since Keegan can't feel a heart attack, we are hoping not to find any areas that have been adversely affected by clots from that line).
  • That Keegan's bone marrow is happy with the latest blood transfusion and starts to make a comeback without much more intervention.
I really struggle to express how much we appreciate your prayers for Keegan.  Just look at the pictures above...it is not in vain.  The Lord provides according to His holy plan and will.  Sometimes that's just harder to accept and live with than others.

But then, my dad sends me pictures like these...
Don't you just wanna squish her?  Seriously.  Cutest...baby girl...ever. 


And I know the Lord has blessed our family abundantly.  No matter how deep the valley gets.  Thank you again for walking through it with us.  

Wednesday, June 1, 2011

Keep Truckin'

Good Evening All… Welcome to your first ever guest host on Miracle of the Heart… I’ll be your host, Gray (and after that intro… this will probably be the last time I am asked to host…). My lovely wife, Maddie, wanted to put a post up but let time get away from her… and decided to go home (after some prompting from me because she needs the rest… nod if you agree). I was honored and slightly intimidated to take her place (alright, way more then slightly)… Since writing has become one of her many new life callings… These are big shoes to fill. Just like this blog… she really does do a beyond an amazing job at everything she attempts… I’m way out of my league and very blessed to have her… (love you honey).



So… back to the business at hand. I guess to sum up how today went… I’d have to say “well.” Nothing too dramatic happened today and we seemed to make some progress on the scheduling side with Keegan’s up coming events. It look like we are indeed locked in for the second Cath procedure of the day on Friday. This will be his full annual heart catheterization work up with some additional angiogram testing. We’ve been trying to get this test preformed ever since we noticed his blood pressures have been elevated. We have also wanted this test once we found out that he indeed show positive for two donor antibodies. This will not only let us know where he is from a transplant/rejection standpoint but will also shed some more light on his artery architecture for the up coming central line placement.


We haven’t locked down a time for the line placement yet. The soonest we can hope to have the line placed would be Monday of next week. We are waiting for the surgeon who has worked with Keegan in the past to get up to speed on his latest and to give him a good once over. I have to admit that Maddie and I have really been impressed and pleased with the amount of effort that everyone is putting in on behalf of Keegan. There seems to be a real urgency to help and keep positive momentum on his progress while he is stuck being inpatient (hats off to Keegan’s “People”… you know who you are…).


Today we did get some visitors (although I did leave today to get some work done)… Martha was nice enough to bring Audrey and her parents, Francis and CM Morris (or Chum and Poppie as most of us know them) to see Keegan. A big thank you to Martha for getting them all here to the hospital and back… It was very nice to see them here today and they were so kind of them to bring lunch. After Audrey was tuckered out and was ready to go back for her nap, Mom and Keegan made a break for the play room. It turns out today that Infectious Disease would like to run additional cultures on certain suspected test that have already come back negative. This is an attempt to be doubly sure that we haven’t missed an infection. The problem with the procedure for running these tests is that Keegan must remain in his room until the test come back in a few days… Maddie and I had hoped we had this behind us because we were ready to let Keegan burn off some additional energy in the garden or with new toys in the playroom.


After our playroom adventure, Keegan was too tuckered out. The decision was made earlier in the day to transfuse two units of blood because his counts were beginning to get low and they wanted to make sure he was in a better place for Friday’s testing. We pretty much ended the day with the transfusion. That seemed to go pretty well.


We were lucky and blessed to have a few other visitors today. Paula Pruett was nice enough to drop by to visit with Maddie and bring a surprise for Keegan. My mother, Linda, stopped by as well to see Keegan and brought Keegan a new Cars toy… I know Keegan will have a good time with that. Chris Kent came by today and spent sometime catching up. He was nice enough to also come with dinner as well… Just some fixin’s he whipped up for dinner. Good stuff, thank you Chris. Sean Cates also stopped by the hospital on his way back from work… it was good, as always, to catch up with Sean. He looked good in his suit… glad to see him doing well. Keep his wife Chelle and their son Carter in your thoughts and prayers tomorrow. Their son is going in for a procedure at Boston Children’s. It has been planned for a while and we will keep our prayers focused so it all goes well.


I’m going to sign out now because it is getting late… Hope you enjoyed the post… If you didn’t… well, Maddie will be back soon. In the meantime here are some pictures from today. Enjoy.

Nothing like a little music therapy... always popular with this three year old.

They do love their mom... do they ever!

These two definately share a common love for Apple products... and each other.

Little man getting his blood products...

Blood transfussion this afternoon


In order to change, we must be sick and tired of being sick and tired. -Unknown

(that's for my wife... I love you)