Care Calendar

Dear Family and Friends of the Harrison Family,

As you are well aware, the Harrison have been enduring a tumultuous road lately.  In an effort to give this extraordinary family some sort of relief, we have set up a Care Calendar for you to assist them by providing meals for the next couple of weeks.  Our family is well aware that having meals provided once home from the hospital proves to be a fantastic way to have some of the burdens eased.  After all, once home, all care rests on the parents and trying to even think about preparing meals can be a daunting task.       

You may sign up at www.carecalendar.org.  In Calendar ID, enter 82405 and in Security Code, enter 8772.  Meals will begin August 2^nd and continue every other day through the 12^th.  You will click on the day on which you would like to provide a meal for the Harrisons and sign up at the bottom of the page for that day.  If it still says “MEAL”, it is still open.  Please bring meals between 4 and 6 PM, but keep in mind that the family is unable to eat until around 8:00 PM, due to Keegan’s scheduling needs. 

At this point, we have only scheduled meals for the first couple of weeks in August, simply because Keegan seems to enjoy keeping things unpredictable, so we will adjust as necessary.

I know that Gray, Maddie, Keegan and Audrey appreciate your support through encouragement, prayers and messages on this website.  Let’s extend that love further by doing something little to make a big difference!   

Thank you,

Paul, Angie and Avery Grace Akeman      

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Our sincerest thanks to the Akeman family for reaching out and creating a meal calendar for us at this time.  We have asked you, Keegan's prayer warriors, to pray for sweet Avery many times over the years.  We couldn't be more grateful for their efforts and for the support of each and every person who prays for and supports Keegan and our family.  Thank you.

Wheelin' Around

Goodness, this girl!  She is light years faster on this just over the last few days.  She even slides out as she takes corners.  Audrey may be fearless on this little wheely ladybug, but confidence is a severe issue on her own two feet.  Today she stood freely on her own in the middle of the kitchen when I set her down.  After about 30 seconds of rock solid stance, I thought I could try to snap a phone picture.  In those 5 seconds of fumbling with my phone, she decided to put her hands down on the ground, but her head quickly followed.  Face plant right into the tile.  Yeah....that one's gonna leave a mark.

When she is feeling good and on a roll though, I dare say we have the makings of a little diva on our hands...

Photo and video editing at www.OneTrueMedia.com

Nothing new

Keegan did ok through his colonoscopy and endoscopy yesterday.  A lot of bleeding, much like the last scope in June, but otherwise he handled it well.  As we have come to expect, they didn't visually see anything remarkable.  The only thing that looked strange was the tissue just below his stomach.  It should be a nice pinkish red color, but Keegan's was white.  Rather stark white, actually.  Also as we have come to expect, the doctors have no idea what it means, if anything.  At least, not one that they are sharing with us.

I am so tired of that.  We are extremely familiar with not having an answer for Keegan.  We have come to expect that every test we run will be negative.  Or "normal" when clinically he's clearly anything but.  That has unfortunately become our normal.  Frustrating?  Extremely.  New or different?  No.  And I'm tired of it.

But I am more tired of the apparent sentiment that if they don't know what it means, it's not a problem or a concern.  That is near #1 on my list of annoying things doctors say...or in some cases, what they infer without saying anything at all.  I am over your egotistical games.  If you don't know what something means, it should scare you.  It should scare you in an otherwise healthy child.  In one who's had a heart transplant, it should terrify you.  If you don't know, tell me that.  And you better quickly follow it up by telling me what you're doing to find out.  Pompously assuming that you know everything or can expect how things will go puts my child's health and life at risk.  I've seen too many children, including my own, end up in the ICU because of something I was told was not something to worry about.  Even worse, I have been at some of those children's funerals.

The only thing more disrespectful and belittling than that is thinking you have the right to control information about my child's health.  Tell me everything - the good, bad, and indifferent.  I deserve to know it all.  And when it's bad or it could be bad, help me learn how to deal with it.  Help me get ready to face it.  I need time to research and prepare myself for the bad.  If the bad never comes, we can all look back one day and be grateful that we made it through.  But the decision on whether or not something is worth worrying about, belongs to me and no one else.

The reality of these logical errors and communication flaws hit me with more force than ever before yesterday morning.  The cardiovascular ICU at Children's moved into the new tower almost two years ago.  That floor, where Keegan was when he was born and transplanted, is now the pre-op holding area for general surgery.  In all the times Keegan has had a surgical procedure since the move, we have managed to avoid his old room.  Room 18.  The largest room on the unit, isolated from the rest of the ICU in a back corner.  Until yesterday.

I thought I could handle it.  We had even joked about it in the past that there should be a flag on Keegan's chart that said he couldn't go to that room.  It was almost 4 years ago.  Surely the fact that it was just a pre-op holding room now would make it easier.  But it didn't.

I wasn't prepared for the cold smell that hit me when I stepped into the anteroom.  A mix of hospital cleaners, air ducts, and surgical soap that I don't notice anywhere else in this hospital.  The anteroom where I had to scrub up and don a gown, mask, and gloves just to be able to touch Keegan.  Where that dialysis machine sat for a week.  Where I stood helplessly watching Dr. Stromberg hover over my infant son with defibrillator paddles.

I wasn't ready to hear the whir of ECMO, pumps, monitors, and a ventilator come rushing back from the recesses of my mind.  To remember the sinking feeling of watching a team of 20 people transport a 5 pound child down the hall to the OR.  To feel the ache in my legs from standing at his bedside for hours upon hours since there were too many machines crowded around to manage a chair.  To relive the extremes of despair and joy that happened for us in those first weeks all crest like a wave in my chest in a single step into the room.

When I looked back into that room and saw my son's face peeking out at me once again, I was hit with many different realities.  Gratitude for the second chance at life that he has been given.  For every day that we have been able to hold him and learn from him.  For every person who has cared for him, physically and spiritually, that have allowed him to be here with us for three years, when we were unsure if he would live even three days.

But when I look forward from the memories of that room and where we sit today, I am confronted with a new set of fears.  This afternoon we will go home once again.  Another fever and another round of tests told us nothing new.  Keegan is stable today, and there is nothing we can do for him today to make anything better.  The fever will return soon, and I am afraid of what new challenges it will bring him.  I am afraid of the enormous tide of unknowns in his medical picture.  Pick a body system, and there is something unusual or questionable happening there with Keegan.  They are not something I can even wrap my head around today.  I am afraid that those unknowns will get the best of him.  That they will bring us back once more to the experiences we felt in that old ICU room all too soon.

I expect that our medical team should feel those same fears with us.  That they will validate our feelings and help us overcome them with facts and research.  Do not patronize me by looking at me and saying that anything is "fine" or that you're sending him home because he is "stable".  Acknowledge where we've been, what he's been through, and the uncertainty of what Keegan is facing.  Because he has looked "fine" one day and been in renal failure the next.  He has been ready to trial off of ECMO one day and desperately needed a heart transplant to survive the next.  He has had a strange, bleeding port that wasn't too concerning because he was "stable" one day and faced surgery to remove a port that was almost certain to cause a devastating stroke the next.  And those are just our experiences, not including those of the other precious families we know in this fight.  If you don't recognize that anything could change in the blink of an eye with these children, then you shouldn't be purporting to care for them.

So, I don't know where that puts us now.  This is nothing new.  Maybe this week will be different.  Maybe not.  We will continue to research our options here at home and elsewhere.  We will go home today and pray for guidance and wisdom and clarity as we face the coming days, weeks, months, or more.  We will continue, as always, to pray for Keegan's healing every single day.

Testing, testing

Keegan's fever does seem to be over for this week.  That doesn't mean he got a break today though.  This afternoon, he had a repeat CT scan of his chest and an ultrasound of his abdomen.  On first glance, there did not appear to be much change from the last scan in May (except that the port in his subclavian artery is gone, thank God).  Official results will be read by tomorrow.  I don't think it will tell us anything new.

Through the CT scanner today.  

He has to have his "Hannah wagon" whenever we leave the room.

Thank you for watching over him sweet angel girl.  We miss you.

Colonoscopy and endoscopy tomorrow around 3pm.  Running the "clean out" solution now.  He has slept through the first hour of it.  Prior experience tells me I better close my eyes for a bit before the onslaught ensues.

Thank you so much for continuing to pray for Keegan and especially for clarity and wisdom for his medical team.  More tomorrow.

Wednesday update

I think (knock on wood) that Keegan's fever has finally broken through this cycle.  He had a fairly low-grade temp (100.9) overnight, but the last spike this morning was just shy of 104.  That brought the vaso-constricting, retching, and vomiting back.  Luckily, the IV Tylenol helped bring it down.  When he is in one of these fever cycles, his heart rate stays elevated the entire time, spiking quite high (up to 180s this morning) at the peaks.  It never comes down to his normal resting numbers in the 110s/100s even when the fever comes down though.  Around 8pm, he finally came down to his normal for the first time since Monday, so I'm hopeful he is done for a few days and can get some rest tonight.

Infectious Disease came by one more time today.  There are a few "unicorns" (we're way past zebras at this point) they can test for, but they are almost 100% confident the fevers are not being caused by anything infectious.  That means we are pretty much out of ideas as far as the fevers go.  We will repeat his colonoscopy and endoscopy on Friday.  If that doesn't reveal anything shocking, our last straw here is immunology, which of course we won't see until at least the week of the 8th.  I guess the goal will be stabilizing him during the fever cycles until that point. 

From a GI standpoint, he is not in a "good" spot, but we consider him rather stable.  His nutritional needs are being met via TPN without any major complications.  So, we can nurse him along for awhile longer on that front.  His heart function appears to be stable also for the time being.  As the steroids continue to come down, we anticipate his labwork will get more and more unstable, but we can't do much about that at this point.  For the record, I was mistaken about his maintenance level of steroids - he won't hit that for 3 more weeks.  That may give us a little more pad before the fevers hit full throttle, but if this last one is any indication, the amount of steroids from here on out will likely be a moot point.  The fevers were already stronger than his highest dose.  At the coming levels, it won't make much of a difference.

Keegan finally walked around a little outside just before bedtime.  It was good to see him out of bed finally, even if it was only for 5 minutes.  We had some visits from friends and family today, which helped lift all of our spirits.  This little ladybug always makes us smile.

Keegan this afternoon

The first week of June, the hospital photographer was visiting with us and snapped a few shots of Keegan while he was having a good day.  I will share more of Lou's photos with you soon.  I cried when I saw these.  It's hard to believe the boy in the picture above is the same one in the picture below less than 2 months ago.  To see photographic proof of the toll of these last few months absolutely breaks my heart.

I know he's still there despite it all.  I pray that we can find a way to help him feel better so we see this beautiful, smiling boy again soon.

Fever #3

Keegan's fever is back for the third week in a row.  I can't say we are surprised.  We were also right when we predicted that the fevers would get stronger and harder on Keegan.  Last night around 3am, we realized he was at 103.7.  It used to be that the first fever wouldn't be too high and would wane for several hours before the second round, which was always more aggressive than the first round.  Not this time.  High, straight out of the box.  

We gave one dose of IV tylenol at home and took him to the ER for blood cultures around 4am, thinking we would come right home afterwards.  This time, the tylenol didn't work, and his fever spiked through it after only about 2 hours while we were waiting in the ER.  At which point, Keegan was admitted to the cardiology floor and transported via ambulance (again) downtown.  His temperature continued to stay high through 3 more doses of tylenol.  It finally came down around 5pm and has stayed down for a bit.  If history proves correct, this is not the end of this cycle though.  Could be an interesting night.

Keegan looks bad - swollen, pale, red rimmed eyes, lethargic.  His labs, however, remain largely unchanged from last week's numbers.  A few other things that have been concerning as of late...Keegan's g-button is having a lot of leakage, and the skin around it is fairly bruised.  Rather than the swelling and weight starting to reduce as the steroids have come down, Keegan's weight is still going up.  We even cut his calories down in the TPN/lipids to help speed the process up with no luck.  Lastly, his GI symptoms seem to have changed for the worse.  It now appears that Keegan has lost the ability to even push the diarrhea out.  For some reason, his intestines cannot function well enough to even pass diarrhea.  This is highly concerning on many levels, but since we are still researching the possible condition (autoimmune enteropathy), no one really knows what to make of it yet.  Due to this, we are going to move his colonoscopy and possibly a capsule endoscopy up to the end of this week.

Unfortunately, this is prime vacation time for those people lucky enough to have a vacation.  This week our cardiologist, gastroenterologist, and the immunologist are all out of town.  How convenient.  We are working with the GI doctor on consult service at the hospital, and he has been able to keep in touch with our regular doctor.  The immunology consult service deferred to the doctor we are planning to see on the 10th, who specializes in transplant immunology.  Very helpful.  And cardiology?  I don't have the energy to go into that tonight.

Moral of the story is that we have no more answers or ideas tonight than we did this morning or two months ago.  We will see what these scopes tell us at the end of the week.  If we can determine a way to support him through the fevers the next two weeks, we may hold out to meet with immunology.  I'm not sure we will have any more information even after all that.  If we don't, it will be time to leave home and seek another opinion.  Likely back to Boston at this point, since they are familiar with his case.  No reason to reinvent the wheel right away.  

For now, we appreciate your prayers for Keegan, our family, and Keegan's medical team.  He is holding is own, but we can't help but think that could change at any minute.  We know it could, as it did to another sweet little boy from our transplant family who passed away this morning.  Please keep this family in your prayers tonight too as they deal with the unexpected and devastating loss of their son.  Another shocking reminder that this is our reality every single day.  Praying that we all continue to find the strength through His grace to get up and fight this battle again tomorrow.

Makin' Music

I was finally uploading the last few months of photos to print today and found this little video from May from one rare day that Keegan was not in the hospital.  Thought I would share, since it brought a smile to my face.  My two kiddos makin' music together.  Keegan wore this same outfit today.  It was incredible to see the difference the steroids have made.  I'm so ready to see this precious face again.

Photo and video editing at www.OneTrueMedia.com

You may have seen our little tweet over the weekend that Keegan randomly told Audrey he loved her on Saturday.  They were playing while Gray and I cleaned up a bit, and we overheard, "oh hey, Aw-duh-wee, wuv you."  My heart completely stopped.  I will never forget that moment for the rest of my life, and I will remind Audrey of it for the rest of hers.  Keegan has never said that to anyone unprompted before, not me or Gray, not even his beloved Big Daddy.  Who knows if we will ever hear it again?  A little man of few words is our Bug.  It absolutely made so much of the last few years' struggles worth it.  Keegan, we "wuv" you!  Always.

Lines, fevers, and an apology

Once again, I feel like I need to apologize for not updating this blog often enough or well enough.  At one time, this blog was therapeutic and even a cathartic outlet for me, as well as a way to keep our family, friends, and Keegan's many supporters up to date on his health.  Lately, I dread sitting down in front of the computer.  I don't feel like I have a good enough grasp on Keegan's overall picture to relay it well here, and a big part of that uncertainty is that our doctors don't seem to know what is going on.  Nor does it feel like they are very committed to working together to figure that out right now.  The coming weeks are beginning to look very challenging for Keegan.  We, as a family, are anxious, scared, and yet trying to do the best we can to get the best care for our son.  I am having a difficult time coming to grips with how I feel about all of that.  When you can't find your words, having a blog hanging over your head is quite daunting.  So, I apologize for the ambiguity and the delays lately.  I pray that I will be able to rediscover my voice, perhaps my confidence and faith too, soon.  Until then, I will do my best to keep this blog up to date with what is going on and how Keegan is doing, and we appreciate you giving us the grace and time to relay it all on our own terms.

So, on to how the last two days have been for Keegan.  In a word?  Rough.  But he is such a trooper.

Yesterday, he endured round 41 of general anesthesia to have his PICC line exchanged and put back in the right place.  They basically threaded a guide wire through the old line to keep the vein open, then threaded a new catheter over and past the old one before removing the wire.  A few new stitches, and he was done.  He came through it all well.  Especially considering he was in the throes of yet another fever. On our way downtown to the hospital for the PICC exchange, we stopped at the GI clinic at the Legacy campus for labs and blood cultures.  Surprise, surprise - just like every single time before, the blood cultures are still negative, and his blood work does not indicate a bacterial or viral infection.  The fever was looming all day Tuesday, and it reared it's head for good around 4am on Wednesday.  We were luckily able to explain Keegan's history with these fevers and the need to maintain his IV access to the anesthesiologist, who agreed to go through with the PICC exchange.

Before going into Interventional Radiology, Keegan and Aunt Alex played a rousing game of "diaper heads."  You can somewhat see how swollen he is.  We made some changes to his TPN again today to try to encourage some fluid and weight loss as he continues on the steroid wean.

Children's radiology department is undergoing a major renovation.  This wall is right outside of the IR lab.  Keegan added his mark to it because he does, indeed, rock.

The scary thing about this fever (that didn't break until this afternoon) was that it was spiking through the IV tylenol.  It used to be that the tylenol would bring the fever down for 6 to 8 hours, but this time it would spike back up right before the next dose 4 hours later.  However, he maintained a little bit of energy throughout the entire cycle, which was encouraging.  I am terrified of what he will face next week.  If these fevers are so aggressive ON the bigger steroid doses, how bad will it be when he is back to his maintenance dose?  If you remember, the last fever before we started the steroid pulse absolutely, positively flattened him and caused him to draw blood to his major organs and be sick to his stomach.  I really don't want to go back there.  I don't want him to go back there.

Exhausted today from the fever finally breaking.

In only 10 days, Keegan will be back down to his baseline steroid dose, and I just don't think we are ready for that.  This pulse really did nothing to improve his GI symptoms and caused him some major wound-healing/bleeding issues.  It did give him a bit more stability over the last several weeks and kept the fevers away for about a month.  As of this moment, we have NO plan for what to do when the you-know-what starts to hit the fan again.  We are trying our best to get his medical team to make a plan, but I'm not sure that's going to happen.  There will be some definite serious discussions with several of the doctors in the next week, but if things don't start to change quickly, I think we will once again be considering going somewhere else to get Keegan some help.

That's abut all I can muster tonight.  I am not even going to ask for prayers for Keegan tonight.  Please do, however, keep our little friend, Rylynn, in your prayers.  She has been waiting on her angel heart since the end of last year.  This week, her own heart was struggling too much, so today, she underwent a major surgery to have a ventricular assistance device implanted.  Please pray for her stability and strength and that her miracle comes soon.  Thank you so much, friends.

Briefly

A little update...really little...for those of you who might have seen the last tweet that Keegan was in the ER with a bleeding PICC and might be wondering what happened.

• Noticed yesterday evening that Keegan's PICC dressing was saturated in blood, after he had been itching at and complaining about it throughout the day.
• His line is just barely in a sufficient spot near his heart to be used for TPN (determined via yet another chest xray).
• The PICC team did not want to risk losing the line by replacing the bloody dressing, so we came home last night.
• Spoke with Keegan's GI doctor today.  He is very concerned about Keegan's line and doesn't want to wait until Thursday at a standard dressing change appointment for something to happen and have to take Keegan to Interventional Radiology in an emergent situation.  Good thinking.
• So, he has contacted the interventional radiologist that placed the line to schedule Keegan to have his PICC reinserted while under anesthesia probably on Wednesday.  Disappointing.
• Gets interesting when the radiologist says she is nervous about that because she had an extremely difficult time placing the line.  More interesting considering Keegan's surgeon had a "not-a-more-difficult-placement-in-15-years" time getting the (now bruising from the inside out) port in.

Not sure where that leaves us at this point.  This is the second week of the steroid wean.  The swelling and weight has not started to reduce yet...in fact, he looks awful.  He has started to say a lot of nonsensical things lately, which has us quite concerned.  We are going to stay the course for now and keep our fingers crossed for a good week.  We will see if the fever comes back tomorrow.  As always, we couldn't be more appreciative of your prayers and support for our Bug.  I hope to sneak some pictures tomorrow to share!

And it continues...

Today, we ventured downtown to the hospital for a transplant nursing visit to keep eyes on the bruised/bleeding port, a PICC line dressing change, and a play therapy appointment.  The port looks about the same, perhaps somewhat better, than yesterday.  It's the strangest thing, and no one truly knows what to make of it.  Obviously, we won't be able to use it for awhile.  The good news is it doesn't appear to be getting worse quickly, so we think it will resolve in time.  Everyone keeps blaming all this bleeding/bruising on the steroids.  Perhaps they are right.  What do I know?  We checked his platelet and coagulation levels yesterday, and they were all on the low end of normal.  That is very hard for me to make sense of or believe when his port looks like it's about to explode out of his chest, he has an 8 week old mystery wound on the other side of his chest, and his legs are each one completely solid bruise.

The PICC dressing change did not go well.  At all.  Keegan's line is now about half and inch out of placement.  It literally seemed to jump out of his arm the minute we took the dressing off.  I don't have the energy to relive how it all went down, but I feel we very, very, very narrowly escaped ending back up in Interventional Radiology to get this line pulled/replaced or fixed.  It is taped down about 15 ways from Sunday right now.  I will be extremely surprised if this line makes it through the week.  Max.

To make things more complicated and tense, Keegan did not urinate from 4pm to 6am this morning.  Despite tube feeds and TPN running all night long and drinking several cups of water in the evening.  I did not measure his diapers today, but I do not feel like he made up for that decline during the day.  I pray that I'm wrong.  Fingers and toes crossed for lots of wet diapers tonight.

Time for bed after TPN is hung for the night.  Praying the AC hangs on, that my children stay asleep, and that tomorrow is better on any degree.  I'm going to bed with a very heavy heart.  We are not happy with almost all (save a few individuals) of Keegan's medical team at the moment.  The finger-pointing and unwillingness to take responsibility for Keegan's care is getting slightly ridiculous.  I will admit that, two years from the last time it became an issue, tonight Gray and I had to discuss what our other options are outside of Children's.  There aren't many, and right now, that's only adding to our stress levels.  We would greatly appreciate your prayers for Keegan's stability and our ability to advocate for him through these trials.  Thank you so very much.  Hopefully we will have some more positive updates for this blog over the weekend!

p.s. Audrey is making lots of progress!  Yippee!! Bedtime and naptime are getting easier, and she started cruising on furniture today!  Delayed but making it happen.  It's mind over matter at this point.  Way to go, little girl!  We love you!

Oh my GOSH

Ended up in the ER this evening with Keegan again.  His port (that is not being used) started to turn purple and swell under the skin today.  Literally looks like it is about to pop straight out of his skin.  Quite worried about it when you consider the fevers he has had through this morning.  ER thought it was once again a result of poor wound healing from steroids.  Need to keep a very close eye on it for more swelling in case it starts to bleed into his lung.  Great.  Will follow up on it in clinic tomorrow.

Air conditioning is giving out.  As I type.  Both kids have been asleep too long to wake them up.  Money we probably don't have to fix it.  Just praying it's fixable when this freakin' repairman finally shows up.

Oh my GOSH.  Admit me to the asylum or poor me another glass of wine.  Really.

Update

I have too little brain power left to post much of an update.  Just wanted to say that Keegan managed to stay home and out of the hospital through this recent fever.  His temperature rose to 102.9 overnight and stayed pretty high until mid-afternoon.  Through the blessing of being able to give him IV tylenol at home, we were able to keep him comfortable through it without needing to go into the hospital.  It seemed to finally break around 4pm, and his energy came back up a bit just before bed.

In the midst of Keegan's fever, Audrey's separation anxiety, if that's what it really is, hit an all-time high. We have tried to let her cry it out a bit in limited circumstances, but it just ends up breaking my heart until I give in.  I know she knows that is what will happen.  I just can't help but think that she is justified in her worry that we won't always be there.  We haven't been there for her at times when she's needed us.  I know there is nothing we can do about it, but that certainly doesn't make it any easier.

We did head over to the GI clinic for an appointment - to follow up on the steroid wean, his GI status, and of course, the return of these fevers.  We met with his GI doctor and conference called in with our transplant cardiologist.  Looking at his labs from yesterday, everyone is fairly confident these are the same fevers from the other month.  He does not appear to have any viral symptoms, nor does anything indicate a bacterial infection.  Rather, it continues to look like an inflammation related fever...which the steroids should have prevented.  A fever that is breaking through the steroids.  Yikes.  Needless to say, Keegan's medical team is worried (as are we) that the fevers will continue and get worse as we proceed with weaning down the steroids.  As we began to discuss what should happen next and what testing might be needed to run, I had to do some pretty smooth talking to keep them from deciding to admit Keegan back to the hospital today.  In the end, we all decided to do all the planning we need to do before the next fever hits, so that we are prepared and can spring into action then.

It is very difficult to meet with your child's doctors and realize that no one knows what to do next.  Our transplant cardiologist today had a good point.  Every time someone comes up with an idea, the "experts" in that field always say "oh no, that's not it."  Where does that leave us?  Not knowing what to think or what to try.  At least we were all able to agree today that (1) this is not an OK place for Keegan to stay; we have to keep looking for answers, (2) everyone is committed to that goal, and (3) we will do everything in our power to support him from home as long as we possibly can.  Everyone left with their tasks of things to research or plan or decide, and we will start by returning to see our immunologist after a year-and-a-half hiatus.  As brilliant as she is, she once famously discharged Keegan from her patient load by saying, "there's something not right but not in a way that tells me what's wrong."  Unfortunately, that is nothing new to us.

The rest of the week will hopefully be a touch quieter.  Play and speech therapy on Thursday, along with a PICC line dressing change.  The mystery wound is looking very good.  We were very happy to see that after dealing with it for 7 weeks.

I have to thank you all once again for your continued prayers and support.  I wish I could put into words the strength it gives to us daily.  Right now, I need to finish getting Keegan's TPN ready and go to bed.  After a scant 45 minutes or so of sleep last night, that bed is calling my name.  I'm praying, begging, bartering, and crying for more tonight!  Here goes nothing.

It's Baaaack...

Keegan's fever.  It's back.  Ugh.

Last night for several hours, Keegan would momentarily start crying and moaning in his sleep, intermittently saying "help, Daddy!"  I think it just about completely broke Gray's heart.  It was hard to turn off my mama instinct that something was up.  And I was right.  His temp was 98.9 when he woke up, but his entire body seemed to glow red.  I watched his temp climb until late morning when it finally hit the magic 100.5 number (when blood cultures are required to be drawn if you have a central IV line or are a transplant patient).  He had no energy whatsoever and spent almost the entire day on the couch.  We had the blood cultures and other labs drawn around 2:30pm at the hospital.  Around 4:30pm, his fever came down on it's own, and he finally got up to play.

The plan is to support him through this fever cycle like before unless the cultures actually grown back something.  I sure hope we can.  Maybe this will come and go, but it sure looks very similar to the pattern of the cyclical fevers from a month ago.

It looks like a long night ahead for both children.  I will be very surprised if Keegan isn't up and febrile at some point.  And then there's Audrey.  Oh my goodness - break my heart and test my patience at the same time.  I don't even know where to start with her.  I think she needs some good old fashioned sleep training at this point, but honestly, she has been so disrupted the last few months that I have a hard time not just giving in to her.  I feel like she probably needs to know that we have not completely abandoned her.  Tonight it took 2 hours, but she's finally asleep.  I just really hope she stays that way, especially if Keegan doesn't.

Some pictures to tide you over...none of Keegan because he has a complete meltdown when you focus a camera on him.  These are just phone pics, but they will do!

Gray and I have a dream of seeing Keegan ride a bike one day.  He absolutely, positively refuses.  He will sit on them sometimes but will NOT pedal to save his life.  So, Audrey helped us pick out a "balance bike" for Keegan (not the pink one, that's the floor model!) that has no pedals.

Still no luck...yet.  Fingers still crossed for one day.

This was Saturday morning.  Chillin' on the couch with Angel Baby and her cup of cereal.

After she was up for 3 hours in the middle of the night.

After Gray finally drove her around for an hour.

Still got up normal time in the morning ready to go.

But she's awfully cute...kinda makes it all better, no?

We would really appreciate your prayers for Keegan tonight and tomorrow as we possibly face another one of the fevers that have been so hard on him.  We'll just see where this takes him and pray that God knows the path better than we do.  

Home once again

I really should stop promising a time or date for a post.  Sorry about that.

After a whirlwind day yesterday and not getting up from anesthesia until almost 5pm, Keegan was discharged last night - in rush hour traffic, of course.  But the important thing is we are home once again.  Hopefully, we'll get to stay here for a little while.

We weren't able to get Keegan on the schedule for his PICC placement until yesterday.  They did get it in, and it's working.  So, we will be resting his port for a little bit.  No set time frame at this point.  His surgeon believes that the steroids, in combination with his neutropenia and immunosuppression, are the culprit here.  Between poor healing and extra edema, he thinks Keegan's little body just can't take the stress from the needle right now.  We're not ready to give up on it just yet.  Once the "mystery wound" is healed (which is very slow but happening), we could deaccess the port once a week on dressing change day and let him swim or have a nice big bath with bubbles to float in.  It holds the promise that he could be normal on the outside and still have a point of access on the inside.  We are hopeful that as the steroids are weaned back down to his maintenance dose, we will be able to pull the PICC and use the port again.

There's where things get tricky.  We thought we would start weaning the steroids this week, but we are not actually going to start reducing his dose until Monday.  The bad news is, protocol for this steroid pulse is a very slow wean - 6 weeks.  UGH!  I was really hoping it would all be over way sooner than that.  Keegan is SO big from the steroids.  He is carrying 5 pounds of fluid retention.  His poor little eyes are like little slits.  I'm very ready to see my little boy's face again.  People keeping asking us how Keegan's doing, and that's a really hard question to answer.  He is definitely better than he was during the fever cycles before we started the steroid pulse.  We felt that he was much more unstable then.  Still, there are so many things and changes in him that we are seeing right now that make it very difficult to turn down our level of worrying.  Nothing that we can point to a lab test or diagnostic to say it's this or that, just a general impression that he doesn't look or feel well.  Today he had only a few moments of energy.  He asked to go to bed at 6:15pm and fell asleep the minute I put him in his bed.  Is it the steroids or something more ominous?  I suppose only time will tell.

In other news, he had two play therapy sessions this week.  They went well, and I'm looking forward to Keegan continuing to grow and heal during them.  His therapist says that these sessions are an opportunity for him to feel and express his feelings with minimal limitations (i.e. he can take time to cry and get upset freely but not throw toys or hit, etc).  It's teaching him to recognize his feelings and hopefully one day communicate those with us.  The downer from the sessions was his therapist's initial observations about his developmental stage.  Whether he is behind or rather regressed after his recent illnesses or brain bleeds, his play is developmentally more along the lines of a 2 year old than an almost-4-year old.  We are still trying to wrap up his neurological testing, and the therapist will help us interpret and work with those results once we do.

His echo this week was stable.  There is talk that we may go to once a month echos.  That makes me nervous but happy at the same time.  I really want to make sure we are doing everything reasonable to stay ahead of this disease process.  But stable is stable, and overkill will do nothing but increase our stress and anxiety.  He will have his normal speech therapy, labs, and GI appointment this week, along with a play therapy session.

Audrey is home too.  Not sure if she's teething, in a growth spurt, or just having some serious, serious adjustment problems.  She had some trouble sleeping the last few nights with my parents and still is.  As I type, Gray is driving her around trying to get her to calm down and sleep.  I can't help but think that all the chaos in her little life so far is making things difficult for her.  It literally breaks my heart in two.  I want to hold her 24 hours a day and reassure her that she is important and loved and never alone.  She deserves that, and it so difficult as a mom to see that fear in your daughter's eyes when she thinks you might not always be there for her.

Thank you once again for your prayers for our little family.  I honestly just can't say that enough.  It's going to be a busy week here and sounds like a long night ahead too.  We are so appreciative of your support and encouragement through it all.

PICC - Round 2

Keegan just came back to his room after having a PICC line placed in his arm.  This was his 40th round of general anesthesia.  He's not even 4 years old.  This time, he had a little oxygen dependency for about an hour afterward, but it is weaned now.  We are going to deaccess his port, and once surgery signs off on using the new line, we should be discharged home.  I will post again with more info tonight!

It's complicated

This inpatient stay, that is.  Keegan's port is still leaking.  It's rather disgusting actually.  We rested it Monday.  Tuesday, surgery ran a dye study that showed the port is in tact (surprise), and they don't know what else to do.  We had to access the port for the dye study, so we left that needle in and decided to run his TPN through it again last night to see what would happen.  Of course, there was drainage in the dressing again by morning.  When his TPN and IV meds were done, we pulled that needle.  The skin was already yellow, swollen, and fluid literally seeped out of the needle site.  Awful after only 16 hours of access.

And yet, we still don't have a plan as to what to do from here.  The attending physician on the floor has tested my patience to no end.  My frustration hit a completely new height this morning.  I've heard, "I don't know...what do you want to do?" WAY too many times the last few days.  In order to keep my sanity, I had to officially delegate all decisions/arguments/consults to Gray today.  (I guess that's my anniversary present to you, honey.  I love you!)  In this doctor's endless finger-pointing cycle, he wants to ask our surgeon to come consult one more time in the morning before we put a PICC line in to give the port rest.  I don't think our surgeon will know what to do, and that is not his job!  He puts them in, not manages them.

There is obviously too much swelling and fluid around this port to allow it to work properly at this moment.  It needs to be rested for at least a week or two to allow all that to go down and be reabsorbed by Keegan's body.  However, Keegan gets all his nutrition from TPN through a central line, so he needs a PICC line in the meantime.  We frankly don't see the point in putting it off any longer.  Get it in, and let us go home!  All the nurses we have consulted from GI to hem/onc to transplant are in agreement with it.  As is usual, the doctor isn't listening to them or us.

We accessed the port just now once again with a longer needle because we needed some way to run his TPN tonight.  To make up for the swelling and try to prevent any in-and-out from a loose, shorter needle, we went with the next size up.  The longer needle sits up so high that we had to pad it with a biopatch.  The patch will blow up like a marshmallow with any drainage, so it should make it quite clear that the port is leaking.  That's fine for tonight, but why waste time by not going ahead with scheduling the PICC placement?  I will reach my limit if we are sitting here Monday morning because of a leaky port!  If we don't have a plan or haven't seen surgery by mid-day tomorrow, you can bet I will make sure he is on the PICC schedule as soon as possible.

While we are here tomorrow, Keegan will have his echo.  We are praying for at least stability in his heart function.  I really don't want to end the day in the cath lab.  Keegan will also have his first appointment with a play therapist.  She will start working with Keegan weekly, providing him with an outlet to process all that he is dealing with medically and emotionally.  I'm very excited about this, as his frustration has peaked the worse he has felt.  I'm also looking forward to Audrey working with play therapy as she gets older, allowing her to constructively process the emotions of all this.

Two more things to wrap up this post:

• We are still collecting hairbows to donate to the hospital in honor of Audrey's first birthday.  We have been amazed at the number of bows y'all have donated so far.  Thank you so much to each and every one of you.  I've started working on getting them all packaged up for delivery, but I probably won't finish it until we are back home.  So, if you would like to donate and haven't yet, we would love to add to the stash!  
• And lastly, today is our 9th wedding anniversary!  So, happy anniversary to the man I'm proud and lucky to call my husband.  I knew 14 years ago that I wanted to spend the rest of my life with you.  Nine years ago, we pledged to be true to each other in sickness and in health.  Who would have thought it meant this life?  I couldn't imagine facing each day without you, honey.  I love you more than words can say.  Happy Anniversary, Gray!

What we know - Part 2

I’ve tried to start this post about twenty times so far and am still struggling to find the words.  They’re difficult to find when I try to explain it in person, yet alone in writing.  Hopefully just putting it in writing will help me process it and prepare us for what is to come.   We have mentioned in passing over the last few months that we are watching Keegan’s heart closely.  This is why.  We are going to be very real and realistic here.  Please remember that there are a lot of “ifs” and unknowns.  This is going to be a very long post, so grab some coffee & put your thinking cap on now…

Keegan is in the early stages leading to an irreversible type of rejection, called antibody mediated or humoral rejection (AMR).  We can try different treatments to slow down the process, but right now, the medical community does not know how to stop it.  This is a less common type of rejection and frankly, the type that we know the least about – how it works or how to treat it.  This is also a type of rejection that almost never “plays by the rules.”  It can progress quickly and be fatal without ever being confirmed.  Many times they treat patients for it, knowing that’s what is happening, without ever being able to find it.  Gray and I have asked a lot of questions and done a lot of research, and Keegan’s transplant team has been extremely helpful in trying to answer and educate us.  Because there is so much uncertainty surrounding it in general, the transplant team doesn’t always have answers to our questions.  I will do my best to explain what we do know.

Theoretically, AMR progresses like this: (1) body develops antibodies to the heart; (2) as antibodies attack the graft, (3) the heart becomes stiff and pressures increase due to narrowing of the vessels, (4) leading to failure of the graft/heart.  Some patients have the antibodies for years and years without ever progressing further.  Some patients are already to graft failure before anyone ever realizes what’s happening.  That is because this type of rejection, as opposed to more common cellular rejection, is generally asymptomatic, meaning there are no outward symptoms.  Often it’s never caught at all until it’s too late.  It can happen in as little as 3-6 months or over the course of a year or more. 

In an ideal world, we would have blood tests and imaging to see this entire process happening and be able to intervene before you get to the end stages.  Unfortunately, we don’t.  Echos don’t even pick up on the pressure differences most of the time.  And most of the time, the biopsies don’t ever capture the antibodies attached to the tissue, nor do the angiograms pick up on the vessel narrowing.  Sometimes, as in the case of one of our dear friends, you treat what you can’t find until you’re blue in the face, and a fatal heart attack sneaks up before you know what’s happened.  As I’ve mentioned before, heart attacks are the silent nemesis of the heart transplant world.  The nerves of the heart are severed during the transplant, meaning you don’t feel the tell-tale pain that generally precedes a heart attack.  It’s over before you know it’s happening.

So how did we pick up on it in Keegan?  When the blood tests to confirm what we thought was intestinal graft-vs-host were run, they discovered that Keegan had formed two different types of antibodies to his heart (see this post).  Luckily, he was already taking the immunosuppressant drug that he would have been switched to once the antibodies were discovered (rapamune), so we planned to watch the antibodies in his bloodwork and repeat echocardiograms more often.  After the bad port was removed and his fevers continued, the team wanted to go ahead with a heart catheterization, biopsy, and angiogram to make sure the port hadn’t caused any damage and get a good map of his heart before placing a new port.  We mentioned after the cath that they noted his heart was very stiff and his diastolic (relaxed) pressures were very high.  Now, we have to assume it is related to the AMR.  We are assuming the antibodies have attached enough to cause the pressure increase, but the biopsy did not confirm that.  As I mentioned above though, this is not uncommon.  There are many cases where the biopsies do not detect the antibodies in the tissue, while clinically we can see the results of it.

The great thing for Keegan is that, unlike many patients in his situation, the echo we did the day before his last cath actually DID pick up on the pressure increase.  So, we are hopeful that we will be able to see any further progression via an echocardiogram.  That is why we are repeating them every two weeks.  There is no guarantee, but we are hopeful to stay ahead of it this way.  As our transplant cardiologist said, the minute we see any change whatsoever in the wrong direction on one of those echos, we “go immediately to the cath lab and come out with guns blazing.”

The first ways to treat AMR are to switch to rapamune as the primary immunosuppressant (check!) and do a steroid pulse (check!).  Unfortunately, Keegan’s case has progressed while on the rapamune, and the steroid pulse has so far not changed his heart function for the better.  We will repeat the echo on Thursday of this week and start weaning the steroids.  We will continue to watch his heart closely, as well as repeat his colonoscopy once he is back to the maintenance level of steroids.  If we feel he needs further treatment for the AMR, the options are a high-dose round of IVIG, followed by a drug called rituximab.  Unfortunately (have you sensed that word being used a lot?), the gold-star treatment is plasmapheresis, which Keegan is too small to have due to the size of the catheters involved in the treatment.

The goal of all of this is to keep Keegan stable enough for him to be relisted for another heart transplant, and the plan right now is to list him for a kidney at the same time.  There are very strict rules surrounding when you can list, and in this instance, we would need to be able to visualize the coronary artery disease via a heart cath and angiogram.  Here comes that word again…unfortunately, very often patients fall victim to this disease faster than that can happen.  He is not a candidate for retransplant yet because of that.  We don’t know when it will happen.  Not tomorrow and likely not within the next few months.  All we do know is that it will happen.  Again, the team will not waste any time listing him as soon as he qualifies for it.  Even if we get to that point, we will have to consider his GI condition at the time.  It also appears from the recent GI testing that many of his problems point to a propensity to develop antibodies to himself or any transplanted organ.  That may weigh heavily in a decision to give him another organ - would the same thing just happen again.  We may never know that for sure.

That’s about all there is left to say at this point.  Obviously, this has been weighing heavily on us the last month.  We have enjoyed the last week or so of overall stability at home.  However, it appears a bigger fight is looming in our future.  No one can tell us or predict for us how this will go.  We may have years or only a few months.  Anyone who tried to convince us otherwise would be lying.  The only one who knows that now is God.  We are trying, perhaps not hard enough, to place all our trust in Him.  We will not give up the fight.  We will not let go of Keegan.  He is our love, our Bug, our son, and he is worth every minute.  We will continue walking this road every day…even if some days it feels more like a crawl.  We know that we must and that we can because He is with us and will carry us.  No matter what may come. 

And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge...

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Ephesians 3:17-21

Inpatient again

Keegan was admitted to the hospital again last night.  After the reaccess of his port at midnight on Wednesday, it continued to bleed and have discharge of some kind into the dressing.  He woke up Sunday morning scratching all around the dressing and at the needle site.  He was otherwise very lethargic all day, when the several days prior he had actually shown improved energy.  When we pulled the dressing and needle out Sunday afternoon, the skin around the port was extremely swollen and a disgusting shade of bright yellow!  I will spare you the pictures, but it was quite obvious TPN had at least been sitting on his skin, more than likely infiltrated into his chest too.

So, GI asked us to bring him to the ER downtown.  From there, they got an IV in his arm (somewhat better this time around) and admitted him.  It is a holiday, however, so no one is really want to do anything at all about it today.  We rested it today on surgery's orders.  They want to repeat the dye study tomorrow to see how much fluid is truly under his skin.  Then, they will come back to us with an idea of how long it needs to rest to truly stop this infiltrate cycle.  If it's longer than another day, it is likely we will have to discuss placing another PICC line temporarily for his TPN.  He is also now carrying 2.5 kilos (around 5 pounds) of edema or fluid retention from the steroids.  Hopefully that will start to resolve as we beginning weaning the steroid dose down on Thursday.

Beyond that, we don't have an idea of where this inpatient stay will take us.  One more holiday inpatient checked off the list.  The only holidays/special days Keegan has thus far NOT spent in the hospital are (in chronological order): our wedding anniversary (this coming Wednesday, so that will probably happen this stay), Gray's birthday, Keegan's birthday, and Christmas morning (although he was admitted late on Christmas night in 2008).  Oh well, at least we will have a good view of the fireworks downtown from our room!  More tomorrow on the plan.  Thank you so much for your prayers for Keegan and us.  Our nerves and patience with all this has worn quite thin lately.  We appreciate every prayer for his healing and our endurance on this journey.

Keegan felt very festive today.  He did not really want to go outside at all, and he just snuggled with BD when my family came up with Audrey.  We are praying this fatigue is just temporary.

Happy 4th of July from Ladybug!