Perhaps...

I hesitate to even say it, but it looks like we are good for Boston tomorrow.  I just got a call from the transplant cardiologist there (yes, the actual doctor!), and she said they are ready for Keegan.  The rest of the day will be crazy here.  In addition to packing and getting the house ready, it was Audrey's first day of Mother's Day Out, and Keegan will be at the hospital downtown all afternoon for last minute infusions, nebulizer treatments, dressing changes, transport team meetings, etc.

Oh, not to mention that Keegan's fever has started again.  Just in time.  Please just join us in prayer for Keegan's safety on this trip now that he will not be feeling well in the air.  Gray will fly with Keegan on the hospital's fixed wing plane, and I will be flying out commercially tomorrow morning.  Very early mornings for all, so tonight will be the last time I get to see Audrey for awhile.  Gray will be staying in Boston about one week and then will be back to work and taking care of Ladybug.  While we are anxious to find answers for Keegan, we are also disappointed in having to separate our family and leave our home.  We are confident this is a step in the right direction.  Just one we take with great caution and trepidation.

And perhaps when we return, we will see these adorable siblings back together once again with big smiles and both feeling well and happy.

Hurry up and wait

I realized my last post probably didn't make much sense unless you happen to keep up with our twitter or Facebook feeds.  I intended to write a nice, well thought out post tonight.  However, Keegan has been moaning/crying/rolling around in what might be GI pain or "looming fever" pain intermittently since about 8pm.  Things never go quite as planned around here thought, so I can't be too surprised.

So in lieu of a lovely narrative, I present you with bullet points of the last few days:

• WEDNESDAY NIGHT: I posted that Keegan's fever had gone on 4+ days and may or may not be gone.  It was gone thankfully.
• THURSDAY: Keegan refuses to get out of bed and seems to be feeling crummy despite finally not having a fever.  We know that many of his labs were off.  Between this apparent turn for the worse and Hurricane Irene barreling toward the east coast, things went into hyper-drive to try to admit Keegan to the hospital here, get insurance approval for medical air transport, and fly him to Boston Friday morning.  I spend all day getting the house ready while trying to accommodate Keegan from bed.  Without going into detail, suffice it to say it was sheer craziness trying to do all that and stay in constant contact with the two hospitals to see what would happen.  Around 3pm, it seemed we were going.  By 5pm, it was a maybe not, but they admitted Keegan anyway due to everything else from the week.  By 7pm, it was a no-go.

Thursday in bed.  Reading and resting.

• FRIDAY:  Keegan seems to be feeling much better.  We decide to hold off on his infusions for a few more days and recheck levels Monday.  We decide to go back home to wait out the storm and spend as much time as possible together as a family.  There wasn't anything to be done at the hospital that we couldn't do at home.  We left with instructions to return immediately if another fever hit, although we can't really predict them anymore since last week's was so uncharacteristic of the previous ones.  Around 5pm, we receive word that insurance approval is in and good to go. Now, we just wait on Irene.

Keegan had a pretty good weekend overall.  It's hard to look at him on a good day and realize how sick he can be the rest of the week.  We know this trip is necessary, but it doesn't make it any easier.  Fever hasn't returned yet, but we think he may be in the "simmer" stage.  With the apparent discomfort he has been dealing with all night, we may be in for a whopper here soon.  

The bright light in all the craziness of this week is spending some extra snuggle time with this beauty.  

I sure am going to miss her.

I will post more tomorrow as I know it, but the goal is to be Boston-bound by Tuesday or Wednesday.  If Keegan stays out of the hospital, we will try to do an outpatient-to-inpatient transfer, where he is picked up by the transport team from clinic.  If he doesn't, we will do inpatient-to-inpatient.  The hard part now will be getting a commercial flight for the parent that doesn't fly with Keegan (likely me, as my tolerance for small planes is virtually nonexistent).  Ok, more tomorrow.  Better get some sleep while I can, since it looks like a very long night ahead for our Bug.

Oh Irene...

Just a quick note to say Keegan is back at home while we wait on hurricane Irene to clear the east coast. Insurance approval for travel is complete. (Yippee!!) if not for the storm, we would be in Boston by now. The goal is Tues/Wed based on storm predictions at this time. I will post more tomorrow....no really, I mean it. I hope. Been a little nuts here. Trying to spend as much time together as a family as possible the next few days while we get ready to travel, leaving little computer time. Thank you for all the well wishes, inquiries, & prayers. More soon!


- Posted using BlogPress from my iPhone

Got a map?

Remember how I mentioned in the last post that if the fever went any longer, we would be in uncharted territory?  Well, welcome to the wild.  If we felt lost before, that feeling is magnified tenfold as this fever has started to morph in front of our eyes.  It truly reemphasizes the need to get Keegan somewhere new... and quickly.

Keegan's last fever went on for four and a half days (whether or not it is truly broken remains to be seen).  I had to talk our way out of being admitted last night.  Everyone, us included, was worried about this new shift.  But we felt like he was stable at home.  With the promise that we would be in the ER the second we lost that feeling, we put him to bed.  Last night, he stayed between 99.5 and 100.1 all night long.  Until now, Keegan would really retch and throw up at the highest temperatures (103+).  He did not process his 10ml/hr night feeds at ALL last night, and ultimately threw them up around 5am despite his temperature not being that high.  He stayed in the 98s most of the day, which is still above Keegan's normal.  Fingers are crossed and prayers said for a much, much better night tonight.

We spent most of the day at the hospital drawing labs, doing dressing changes, and meeting with the transplant team about planning issues for the trip.  Keegan's PICC is still hanging in there, which is good news since the port is still leaking.  We are going to continue to use it for a few more days at least to see what happens, but it doesn't look good.  Unfortunately, his labs have taken a hit from these fevers.  Keegan will need to get an albumin and IV lasix to give him a boost.  He may also need blood soon, but that would be a lot of volume to give him in one day.  At the end of the day today, I think the doctors were on the same page with allowing us to do this outpatient in the infusion lab.  We are trying our best to keep him at home until the last possible minute.  We need more time to get our lives in order before leaving, and frankly, we want to spend as much time as we can together as a family too.  We have not nailed down a day for travel yet.  The goal is still for the end of this week, but there are a lot of logistics left to handle.

To wrap up tonight, I wanted to share some pictures.  Maybe not from "better" times per se because he had just recovered from a massive surgery, days from several other big procedures, and in between fever cycles.  Despite all that, he looks lightyears better than he does today, and my heart needed to see his beautiful face tonight.

I think you can tell from the next picture how it breaks my heart to see how the last few months have affected him.  He is still my beautiful little boy, and I love him so much it hurts.  I just pray that we can find a way to help him feel like his happy little self again soon.

Another day

Today marked another day of fever for Keegan.  Last night was not easy on him.  Consistently in the 103s.  After another IV tylenol dose at 6am, he "simmered" at 99-100.5 all day.  At bedtime, he was at 100.8.  This was a marked change from all 10 of the previous fevers.  It has already gone a good 12 hours past all the other fever cycles.  If he spikes again overnight, we will truly be in uncharted territory with three straight nights of very high fevers.  Keegan's baseline normal body temp is about 96.9, so you can add at least a degree or so to any temp he has.  Other than IV tylenol, we have no other way to help him during these cycles at this point.

Today marked another day of line problems.  Since he has been at his maintenance dose of steroids for a week, we attempted to access his port tonight.  The plan was to use the port for a week with good results before pulling the PICC line.  We know that his PICC is on it's last legs.  After last week's dressing change, it became very sluggish.  So Friday night, we ended up in the ER.  After an xray showed the PICC had migrated a few centimeters, we determined that it was probably embedded against the vein wall.  A power flush knocked it loose and allowed us to go home then.  That little incident made us realize we needed to start using the port.  Tonight, I tried twice to get blood return from the port.  Then Keegan ended up in the ER again because it wouldn't budge.  The hem/onc team was able to finally free it up after a lot of work.  We do not have much confidence in this line for now, but we will just have to see how it all pans out.

Today was another day spent trying to arrange for our trip to Boston.  This morning, the plan was to gather information and documentation with the goal of traveling next week.  By this afternoon, the plan shifted to trying to get Keegan there by the end of the week.  Nothing is set yet.  Lots of work done today and hopefully lots more to be done tomorrow.  We are working on securing an inpatient transfer again this time, which would involve admitting him here in Dallas to the hospital and transporting him there to the hospital via medical air transport.  Keegan will be inpatient for an as of yet undetermined amount of time when we arrive.  We have no timeline at this point for how long we will be gone, but we are betting on a month at least.  I am paralyzed by the choice I have to make between my children.  My son desperately needing this requires me leaving my daughter behind.  A choice no parents should have to make.

Today was just another day of the same craziness for Keegan and our family.  For almost everyone else though, today was the first day of school.  I didn't have time to really think about the implications of today until I scanned the 5 million Facebook posts tonight of everyone celebrating the first day of school.  I am only slightly ashamed to admit the bitterness I feel.  We were there just one year ago.  He was there just one year ago.  How could our lives have changed so much?  I knew then that Keegan going to school was risky, that it opened up a world of infection that he hadn't had to deal with before then.  I never, ever, ever could have imagined that after 2 and half months, it would all be over.  That our lives would be so drastically changed.  Kidney failure, dialysis, ICU, intestinal failure, bleeding, early stages of rejection, fevers.  A year ago, I tried to put my fears behind me.  Little by little, I saw them come to reality, all but slapping me in the face and laughing at my audacity over the last year.  Today, my grief is raw.  That small sliver of hope was jerked away so quickly, it almost seems as though it never existed.  A few weeks ago, we were told that Audrey couldn't even have a small dose of normalcy in going to Mother's Day Out because the risks were too great for Keegan.  She might only get to go for a bit this fall while we are gone.  I am ecstatic for her, for every child that experienced that glorious first day for themselves today, and for every child that enjoyed returning to school one more time.  But it doesn't reduce the regret I have for the day that my son did not, and honestly may not ever again, get to enjoy.

But this is our life.  This is the path God has chosen for us.  Another day.  Another step forward in the journey.  We may slow down on days like this, but we have not given up.  Another day survived.  Another day lived.  Another day to praise Him for our blessings and ask for strength for the challenges yet to come.

Care Calendar update

Dear Family and Friends of the Harrison Family,

 We have decided that it will be extremely beneficial if we extend the Care Calendar to resume providing meals for the Harrisons.  As we mentioned before, our family is well aware that having meals provided even when home from the hospital proves to be a fantastic way to provide relief.  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 Tuesday, August 23^rd and continue every other day through Sunday, September 4^th.  Please 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 the date still says “MEALS”, 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. 

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     


*Many thanks to the Akemans for wanting to continue this care calendar for meals.  Many, MANY thanks for the meals so far.  They are right that eating is usally last on our list these days.  Taking that off our plate, no pun intended, certainly lightens the load.  If we leave home before this calendar ends, we will keep y'all updated for sure. 

11

I miscalculated last week.  Keegan's fever this weekend is the 11th overall.  The 6th since we started the steroid pulse.  It seems to have been about the same as last weekend's so far.  There was a few hours earlier today where we got pretty worried about him.  He was even more ghostly pale than we had seen in awhile.  After an IV tylenol dose, he seemed nauseous, distant, and unnaturally cold on his head and hands despite an underarm temperature in the 98 range.  We waited it out for a bit, and he seemed to shake that.  At bedtime, he was starting to spike up again.  Another long night awaits us here in the Harrison house.

We anticipate a return call from the transplant team in Boston tomorrow sometime to discuss planning.  On first thought last week, they believed it best to do another inpatient transfer to get Keegan to Boston.  This would mean admitting him to the hospital here, a medical air transport up there, and staying inpatient there at least for the first week.  The plan was to try to do it before the next fever spike.  That's a lot of planning in a short time.  We will see what happens tomorrow and will update then.  Thank you so much for every prayer and well wish for Keegan and our family.

Limbo

A state of uncertainty.

I'm not exactly sure what I should or can update about at this point.  Nothing is really certain.  We don't know anything new.  The fact that we don't have a single doctor/specialty that is the "owner" of Keegan's issues has become more and more clear every single day.  So, let's start at the beginning of last week, if no other reason than to give us somewhere to start.

Fevers - Still happening on a weekly basis.  Still seeming to get harder on him, and all of us, each week. We don't have a single doctor who seems to want to help us figure out why.  We don't even have a single doctor we can call each week to make decisions about how to treat the fevers.  When it hits, I have to call at least two different services, each who inevitably asks "well, what did so-and-so say?  did he/she want labs/admit him/etc?"  Grr.  We still have IV tylenol at home, which is the only thing we can do for him here.  IV tylenol is so new on the market that half the hospital doesn't even realize it's available.  And it's so strong that we have kids coming out of open heart surgery only on it for pain management.  So the fact that we have to give him 4-6 doses of it every week to keep him somewhat stable through these fevers terrifies me.  And it's not even really helping him be comfortable through the fevers anymore or keeping them away longer than a few hours at a time.

GI - A little background.  Keegan is pretty much completely TPN (IV nutrition) dependent at this time.  It runs 16 hours per day.  He gets a minimal amount of very low calorie formula through his g-tube 20 hours per day to keep his stomach and GI system "alive" and hopefully "learning" how to process something or anything at this point.  Back in early April, a colonoscopy showed what looked like graft-vs-host disease or autoimmune enteropathy.  Whatever it was, we knew the best way to stop it was a high-dose steroid pulse over 4 weeks, with a 6-week wean after that.  Unfortunately, Keegan started having having a fever every single week.  Steroids help stop inflammatory responses because they are an immunosuppressant.  The flip-side of that is they will fuel any infection where you need your immune system to respond.  So, we put off the steroid pulse for a month while we ruled out an infectious cause for the fevers and dealt with a port that was in Keegan's subclavian artery.

When the steroid pulse was over a few weeks ago, Keegan underwent a repeat colonoscopy to see if the pulse had helped at all.  His symptoms did not change; arguably, they got worse.  He still has mucousy diarrhea.  Only now, he cannot pass it without the help of a stimulant.  However, the amount of apoptotic cells in his intestinal tissue was vastly reduced.  That means that the steroids did what they were supposed to do.  Either it wasn't strong enough to allow his symptoms to improve, or his diarrhea is indicative of a separate problem.  Yet, we don't know what to do about either of those situations.  We know he can't tolerate the steroids for a longer amount of time or a stronger dose.  Too many side effects - from wound healing to growth inhibition to fluid retention.  And the other possibility?  Well, it's pretty difficult to treat what you don't know.

Basically the gastroenterologist said he was out of ideas.  Maybe we should just let Keegan keep having diarrhea, reduce the TPN to a more manageable amount, and let him start eating solid foods.  We know that the last two steps would be a better quality of life for Keegan than the current sneaking around and keeping food from him with him dragging IV pumps around in a rolling backpack all day.  And truthfully, the diarrhea does not seem to bother him that much.  The sheer volume is difficult for us to keep up with on the days we give him medications to get it out, but the other days, his belly becomes very distended.  It looks horrible, but it doesn't seem to affect his disposition or cause him pain.

However, Gray and I are not quite ready to accept that situation.  We still believe we can seek out help from other programs to help figure out how to treat him and help him improve.  Constant diarrhea for life puts school and potty-training and a million other things on hold.  Despite the fact that it has dictated our entire family's lifestyles and habits.  And giving him food is not as easy as it sounds.  What exactly should I feed him?  What is likely to be easiest or hardest on his system?  The doctor says to ask the feeding therapist; the feeding therapist says to ask the doctor.  Adults can make a decision to eat a certain food, knowing that it might or will cause them intestinal pain later.  But we, as Keegan's parents, have to make that decision for him.  How much are we willing to put him through?  Not to mention that at the developmental level of a 2-year-old, he does not understand why he could eat a particular thing one day and not the the other.  He doesn't understand that what he eats is what comes out.  If ultimately nothing helps, then we will deal with that then.  We are just not ready to accept this as is quite yet.  All that being said, GI is arguably the lowest problem on Keegan's totem pole.

Immunology - To be fair, we have not had an opportunity to speak directly to the doctor since the first round of labs came back.  They took 18ml of blood from him last week and 28ml this week for all the different labs.  The initial impression I got from the nurse today was that the doctor didn't find a smoking gun in any of that so far.  The immunologist spent a lot of time catching up on Keegan's last two years with us last week.  She was very thorough and supportive.  It appears Keegan does have some antibody-production fueled issues, but nothing that fits a cut and dry pattern with a defined diagnosis.  The doctor had a few "outside the box" ideas for drug treatment though, even if she can't figure Keegan out completely.  Of course, that was tempered by a "after I talk with his other doctors".  Yeah, good luck with that.  We should talk to her sometime tomorrow.  Her final advice to us last week though was that seeking out a second opinion with a fresh set of eyes is always a good idea.

Heart - Well, we haven't had an echo in a few weeks, and no appointment to do another one.  I'm not sure if the team is waiting on the head of the heart transplant program to come back in town to make these decisions or not.  In fact the day Keegan was discharged two weeks ago from the third fever post-steroids, we were told that they didn't need to see us in clinic until October.  Yeah.  October.  Despite weekly high fevers.  Despite being TPN dependent and having a two central IV lines (port and PICC).  Despite his freakishly high blood pressure.  Despite the antibodies circulating in his blood against his heart and diastolic dysfunction (which the immunologist was highly concerned about).  Despite his kidney issues, unusual immunosuppression regimen, blood issues, and fluid retention.  I apologize to all the nurses and staff in the transplant center that we love and respect.  We truly feel that Keegan has been let down from a heart transplant perspective.  We can and probably will be going elsewhere for this very soon.  The problem is what happens when we come back.  I hate even putting all this into words.  It literally breaks my heart in two.  Without this transplant program, Keegan would not be alive.  We have done everything we feel possible to give back and be supportive.  This hurts more than absolutely anything else in Keegan's entire picture.  Simply crushing.  I am not an overly emotional person, but this has brought me to tears way more than I would like to admit lately.  I have no idea what to do or think about it anymore.  This is, in our opinion, the most important part of Keegan's health and life and arguably the most life-threatening.  This is where we need to feel most comfortable.

Sigh.


That's a very, very brief overview of all that we've been dealing with the last few weeks.  We wanted to make sure we gave the immunologist a chance to weigh in before we started the second-opinion process.  Today, we went ahead with the first round of calls and messages to Boston.  We just can't wait any longer.  Keegan can't wait any longer.  We feel like we are caught in limbo with all this.  So much uncertainty in this entire picture.  There was a time we would have left town at the drop of a hat to seek out answers for our son.  We will still go to the ends of the world to help him, but leaving is a whole different beast now that our family has grown.  Nor do we want to question whether what someone somewhere else does could have been done here.  But the daily level of angst and uncertainty involved in Keegan's care here at home has literally worn us into the ground.  As we try to make plans and figure it out, we are deeply appreciative and humbled by every prayer for Keegan's health and stability and for our peace as we important decisions that will affect our family for a long time.  Thank you doesn't even begin to describe it.

Briefly

I wish I was ready to write a post about last week and our plan (or lack there of at this time), but honestly, Gray and I just had an opportunity to really hash it all out between ourselves last night.  We were too preoccupied with the latest fever this weekend to have time to process it all.  This fever cycle was very difficult.  We managed to keep Keegan home throughout it, but there were about 15 times throughout Saturday night into Sunday morning where we were ready to throw in the towel and head to the ER.  We really should have brought him in for labs today.  However, I was terrified of the results.  Looking at him, we could tell his albumin and possibly his hemoglobin levels were low.  I didn't want to end the day inpatient today though.  Despite physical appearances and lethargy, he otherwise looked about the same as usual.  I made the executive decision to wait it out until his regularly scheduled labs on Wednesday.  I pray that was the right one.

We are all exhausted from the weekend.  I don't know how Keegan is expected to keep this up every week.  I don't know how any of us can keep this up.  We are waiting to hear the initial impressions from immunology on the first set of labs drawn last week and hopefully have the opportunity to talk to our main transplant cardiologist.  Still, it is time to start calling around and seeing who might want to see Keegan and how to make it happen logistically, i.e. inpatient or outpatient.  Then, we will try to make the best decision we possibly can for our family.  I promise to get more detailed information up soon!  No, really this time!  

Surprise! It's a fever.

Ok, so no one is really surprised, but Keegan's fever is back again. This is the 5th fever since we started the steroid pulse. Aside from the three week break at the beginning of the pulse, this is the 9th consecutive, weekly "mystery" fever. We have supported him at home so far today, but he is hanging at 100.5 right now. Looks like a long night ahead. I will post more tomorrow hopefully about our appointments from this week. However, I think our doctors here are at their limits with the fevers. Today they decided not even to draw blood cultures, as we have taken way too much blood for other labs already this week. Better get some sleep while I can. Thank you, once again, for prayers for our big Bug through all this.


- Posted using BlogPress from my iPhone

Hmmm

Both of our two big meetings of the week, with GI and immunology respectively, have left us as uncertain, if not more, than we were before about what the next step is with Keegan.  If that's possible.  We really need some time to process it all before we share anything.  However, I don't think we will be traveling right away.  We probably still will in the near future, just need some time to meet with a few more people and do a little more thinking/brainstorming first.  I'm sorry if this post is really about nothing in particular.  I hope to have time to update more about it all by this weekend.  For tonight, I wanted to express how thankful we are for any and all prayers and encouragement anyone has sent Keegan's way this week.  We truly could not ask for more at this time.  We spent three hours with the immunologist today and five hours at the hospital with all the testing and dressing changes that were needed.  Every prayer for guidance, clarity, and wisdom was felt during that time.  Thank you so much for supporting us now, as always.

Instead, speaking the truth in love, we will grow to become in every respect the mature body of him who is the head, that is, Christ.  From him the whole body, joined and held together by every supporting ligament, grows and builds itself up in love, as each part does its work.

Ephesians 4:15-16

A fever, a birthday, and some bows

That has been the theme of the last few days here at the Harrison house.

Keegan's fever held out until early Saturday morning around 4am.  This was a break from what had become his "norm" of the fever coming every 6-7 days.  It "should" have come back on Tuesday.  When it didn't, it just made us all extremely on edge waiting to see what would happen.  Instead, Keegan has started having some extreme and random temperature fluctuations this week.  He would heat up to upper 98s to mid-99s, and then instead of continuing to spike, it would quickly be followed with him becoming kind of clammy cold.  It would disrupt his sleep overnight, but during the day, it didn't seem to bother him that much.

Saturday morning, he reached 101.  We held off on tylenol because he seemed to be handling it ok.  Our transplant coordinator was able to get the Legacy ER to draw the obligatory labs as an outpatient lab visit, so we didn't have to incur yet another ER charge.  SO helpful!  Last night, his temperature reached into 102, and he began the garbled jibberish that has come to signal a problem to us.  So, we gave IV tylenol, and he was able to sleep again.  He spent all day until about 5pm on the couch today with several quick temperature fluctuations.  However, his heartrate has not come down just yet, so we may be in for one more night on this cycle.  All in all, this one seemed to be milder than the others though.  These little random spikes he has been having nearly every day don't seem to be as hard on him.  Although, they are just as, if not more, unnerving for us.  Even if he tolerates them ok, it is absolutely not normal and indicative of a problem of some kind.

Of course, all this happened on Gray's birthday weekend.  Despite the fever and Keegan feeling pretty crummy, I think Gray had a good birthday.  I hope!  Keegan and Audrey had some fun painting a birthday banner for their Daddy.  My mom made Gray an insane chocolate cake, and Granny made him a chocolate pie.  It's quite possible he will OD on chocolate over the next few days, since he is really the only one in the house that eats it.  Ok, I guess Audrey will help a little!  Ha!

Keegan made some great handprints and a lot of scribbles.

Audrey added some feet and booty prints.

I sure hope that paint was non-toxic!  

The finished product

Lastly, we finally tagged and bagged all the bows that were donated to the hospital in honor of Audrey's birthday!  What an AMAZING result!  Y'all are awesome!  We collected so many that we were able to spread the love a little.  I separated them into three boxes - one for the CVICU, one for the heart floor, and one for the GI floor.  Each box has over 30 bows in it to start, and we have an enormous bag of bows that we can use to refill the boxes over the next few months.  Child Life was ecstatic at the idea of having such gorgeous bows to give to the precious little girls on the floors.  And who knows?  We may just have to keep it up permanently!

Big week ahead.  Gray and I will have a conference meeting with GI tomorrow afternoon, and we were told his biopsy results should be available then.  Keegan has an appointment with the immunologist on Wednesday.  A lot rests on the information we are able to gather, or not, from these meetings.  If either or both of them are out of ideas, it will be time to seek out another opinion for Keegan.  It is very difficult to consider that right now.  It's not nearly as easy to pack up and go these days.  But we will do what needs to be done to help our son.  We will find a way to make it work.  We would greatly appreciate your prayers for Keegan's stability and for wisdom and clarity for the doctors, Gray, and me this week as we ponder these big decisions.  Thank you, as always, for your continual support and love for Keegan and our little family.

Random cuteness

I found some pictures from the last few months that I hadn't had the opportunity to share.

A little random cuteness from the Bug and Ladybug to make you smile!

This was the week before the big surgery to remove Keegan's port from the subclavian artery.

Compare this photo to the most recent ones at the bottom of the post.  Heartbreaking.

A favorite pastime - laundry basket rides!

Gray was rear-ended on his way to the hospital one morning in May.  Last month, he finally had his car repaired.  The only rental left (uh-huh) was a Dodge Challenger.  Gray got Keegan to start calling it the "muscle car" and show his muscles whenever he said it.  Gray enjoyed the car while it lasted, but I dare say Keegan enjoyed it just a smidge more!

A tea party with the Ladybug

A play-dough party with Keegan and Big Daddy

Oh, and don't forget the ever-present Mr. Potato Head at the play-dough party!

Adorable Alfalfa post-nap hair

The Miss As having a laugh

It is fair to say we have a slight attachment to Angel Baby.  She even joins us for snacks.

"To the tree, BD!" - Keegan cannot leave my parents' house without "climbing" the tree out front.

Whatever makes you happy, Buggy!

And Audrey can now "touchdown" with the best of them!

Placation

Because I don't feel like an update, and I know some people (*AHEM!!*) are waiting ever so patiently...

I offer you some momentary placation:

And maybe, just maybe, I needed a smile myself.  She does a pretty good job on both accounts, no?

A full update will follow, but a few brief points from this week so far:

• Keegan has not had a "fever" but rather several days of strange temperature fluctuations.  Random and unnerving but manageable.
• Long day at the hospital downtown on Wednesday for PICC line dressing change, labs, port re-access for more heparin, and nebulizer treatment.
• VERY unnerving labs from this week and many prayers that they are an anomaly.
• Port issues from the access at the Center for Cancer and Blood Disorders have raised concern once again, so Keegan will have an ultrasound of his chest tomorrow in hopes we can figure out what's going on.
• Still no intestinal biopsy results!!  (ARGHHH!)
• Big conference meeting with GI next Monday and immunology on Wednesday....possibly involving plans to leave the hot-as-friggin'-heck-state-of-Texas soon.
• Our friend, Rylynn, is hanging in there with her Berlin heart while she waits on her own miracle.  Please continue to lift her up in prayer.  If you want to see more of precious Ry, check out next week's episode of Children's Med!!  Another sweet friend, Caydence, will also be featured next week.  It airs at 7:30pm on WFAA, Channel 8, in Dallas.  Episodes will reair on Children's Facebook and Youtube: http://www.youtube.com/user/ChildrensMedical
• HAPPY 2nd BIRTHDAY, KINGSLEY!! Keegan's donor's little brother, Kingsley, turned 2 today.  We hope your day was extra special and pray all the Lord's blessings on you in the coming year!!  We are so very thankful that your birth finally brought our families together.  You are a beautiful child of God, little one!
• Daddy's birthday is Saturday.  Praying Keegan stays home and stable through this next major holiday in our family.  Oh, and that Daddy has a great birthday!  ;)
• More soon...including the first drop-off of Ladybug Bows!  Thank you, as always, for your continued prayers for Keegan.