Wednesday, November 30, 2011

Cath tomorrow

I'm sorry for the delay in updates.  I needed to take a short break from posting, but I'm hoping to get back into it soon.

Not tonight though because we have to be downtown at the hospital with Keegan at 7am tomorrow to be admitted for a heart catheterization and biopsy.  The whole work-up.  He was supposed to have had this done about a month ago, but his relapse delayed it.  We are hoping that Keegan will get to come home tomorrow when all is said and done.  However, he has been through a lot recently and thrown us a lot of curveballs.  It wouldn't surprise anyone if he needs a night inpatient to recover from this.

We had a nice, quiet Thanksgiving and are back into the craziness that is Keegan's appointment schedule.  Keegan has been pretty stable.  His labs look better.  He is back down to one dose of anakinra and even restarted the steroid wean on Tuesday.  Unfortunately, we had to double his steroid dose today through Friday.  With chronic steroid use at such a high dose, your body stops producing "stress hormones" in response to an injury like a surgery or heart catheterization.  So, we have to do it for him artificially, as well as with a pulse dose while he is under anesthesia tomorrow.  The good news is that if everything looks ok, we should be able to go back to the current dose by Saturday.  It just makes for an even more miserable Keegan in between.

We have also been contacted by the HLH specialists in Cincinnati.  We have completed all their paperwork, and once they have his medical records, they want to see both Keegan and Audrey.  Keegan to review his history and complete a consultation with us.  And Audrey to see if she is a possible bone marrow match for him.  This does not mean they think it is necessary for him.  We don't know that yet, but it is prudent to go ahead and see if our best chance for a match, Audrey, is possible.  That being said, there is a LOT of paperwork for them to go through.  We don't know when we will be going up there.  Hopefully not until after the holidays, but if they said, "be here December 23rd", we would.

I'll wrap up this post the way I started...with an apology.  I'm sorry for how unorganized and scant this update is.  I will get back into the groove soon.  I hope.  Until then, we appreciate your support and prayers for Keegan's stability and health, as well as for wisdom and clarity for his team of doctors.  Thank you so much.

Thursday, November 24, 2011

Thanksgiving

Home and together with family and marvelous food for Thanksgiving.  Just about everything we could ask for this year.


We pray that it was the same for you and yours.  I am very well aware of how many blessings have come our way this year.  Unfortunately, it doesn't take away my fear of what is ahead.  On this night one year ago, our world came crashing down, as Keegan spiraled into complete kidney failure.  The last 12 months have been one struggle after another for my sweet boy.  The next 12 could be just as hard.  But we are surrounded by loving family and dedicated doctors and nurses who are trying every day to help make sure that Keegan is with us for many more days like today.  Hug your family.  Tell them how much you love them.  You never know what tomorrow might bring.  A day like today makes it all worth it, no matter what may come.  Thanks be to God, our loving Father from whom all blessings flow!

Sunday, November 20, 2011

Pesky gallbladder

How does the saying go?  If it's not one thing, it's another?  Yeah.  

So, last night Gray and I ended up leaving an absolutely lovely wedding reception (congratulations, Seth & Sheradon!) to go to the ER because I had a gallbladder attack.  This was my first one.  Not fun....not fun.  We weren't sure what to think at first.  The ultrasound done in the ER didn't show any stones, but it may be early.  Right now, we are taking a wait-and-see approach.  Going to do a little research so that I have a doctor to call if they start to become more frequent.  Pesky gallbladder.  I do not have time for you!  

In other news, Keegan is doing about the same.  Eating a bit better.  We have dropped him back down to one dose of anakinra a day and will recheck labs on Wednesday.  If all is going ok, we will restart the steroid wean the week after Thanksgiving.  We did go ahead and email the HLH specialist in Cincinnati on Friday and are anxiously awaiting word back.  We will surely update when we do.

A busy week ahead for our family, as I'm sure it will be for most everyone.  For now, we are thankful that all four of us are home and stable and for every prayer said to help us stay that way.  

And for crazy after-nap hair.  Yep, definitely thankful for that!



Friday, November 18, 2011

Playdate

Today, we had a little playdate at the Arboretum with our friend, Rylynn.  We are so thankful that Keegan and Ry are both outpatient.  Our fervent prayer is that they both stay that way, so that we can have more mornings like today.











Monday, November 14, 2011

Disappointing news

1.  Keegan's ferritin level is down (which is encouraging) but not near what I would have expected with double doses of anakinra all weekend long - 500.  I don't have the full set of labs yet to know the whole picture, nor did I hear from the rheumatologist today.  My frustration and disappointment with this recent flare is difficult to put into words.  I am reluctant to put any of it out here until we have spoken about it all with the team.  Right now, that's what is needed.  We need to meet with transplant, hematology, and rheumatology to make the next decisions in Keegan's care.  Gray and I really feel like the rheumatology approach is not working well enough to control this disease process, but we are unsure where that leaves us as far as daily management goes.  Tomorrow was supposed to be a scheduled reduction in the steroid dose, which is still at an enormous dose for his size.  Something tells me that won't happen.  Having to stop the steroid wean is going to be killer.  He is already not scheduled to be off them until February!  Hopefully we will have more information tomorrow.

2.  We had to restart Keegan's tube feeds today.  His electrolyte levels were all sorts of screwed up.  His eating has not recovered since the virus, and frankly, it may not.  We anticipated his appetite and GI problems would get worse as the steroids were weaned, and this may just be the first step in that process.  The tube feeds will be twice a day to start and should help normalize his levels.  That is helpful because the deficiencies were starting to cause him some severe cramping and pain.  I hope it will help some of the stomach pain he has been having lately too.  Keegan has been constantly complaining about his tummy and has been retching all day long.  It would be nice if giving him some nutrition with an easier-to-digest food through his tube helped both these problems.  However, it was nice to be tube free for awhile.  I'm not looking forward to it's return.  Tube feeds are better than TPN, I guess.

Thank you for all the kind words and encouragement today.  This is a very difficult and uncertain time for our family.  It means the world to have such loving support as we slowly work our way through it.  Thank you.  More as we know it.

Sunday, November 13, 2011

Update...kinda

I honestly have no idea what to title these posts anymore.

As anyone who has read this blog for any piece of time has probably noticed, I am not really in the blogging/journaling "mood", as it were, lately.  There are a variety of reasons.  None of which I really feel like addressing tonight.  Actually, that's probably a good enough description of why I haven't been writing much.  I don't really feel like addressing any of it.  It's a cycle, ya know.  It's sometimes difficult enough to live it.  I don't always feel like hashing it out in the written word at the end of the day.

All that cryptic nonsense aside, Keegan seems pretty stable to the naked eye.  That's really one of the more disturbing pieces of all this.  A child with a ferritin level of 15,000 shouldn't be ambulatory, let alone playing and acting mostly "ok".  So the fact that he is home and looking about the same has us a little unsettled, to say the least.  We have given him a double dose of anakinra all weekend.  We will go in bright and early for labs in the morning.  Fingers crossed.  He can't stay on the double dose more than for this weekend, so we are praying it worked.  What will work from here on out is anyone's guess.

Literally.  I don't think anyone has an idea of what his long-term maintenance looks like at this point.  Simply maddening for a type-A, planning personality like me.

Keegan is still very tired, is eating minimally at best, and having worsening diapers.  He really seemed to feel cruddy all weekend long.  I won't be surprised if his inflammation levels have come down with the extra meds, but what does that mean for my ability to monitor him closely enough for flares at home?  What is even "normal" for this child anymore?  If Tuesday his levels were dangerously high but he acted fairly normally, what on earth are we supposed to think when he actually doesn't act like himself?

Italics are so not enough to do that last question justice.

But I digress.

I do that alot lately.  Sorry.

In summary, I suppose this "update" doesn't tell you much at all.  Keegan stayed home.  We are trying to enjoy it as long as possible.  We will see what the team thinks tomorrow after his labs all come back.  That's about all we can do right now.  I feel like a lot of decisions should be made this week, but I'm not sure they actually will be.  Another week.  Please, Lord, let it be an uneventful one!  More tomorrow...

Thursday, November 10, 2011

Just enough!

Keegan's ferritin was down just enough to keep him home!! A better post to follow with details. Thank you SO much for all the prayers. We are so grateful for God's healing hand and the love of family and friends.


- Posted using BlogPress from my iPhone

Wednesday, November 9, 2011

Relapse

We received Keegan's lab results from yesterday earlier today.  Unfortunately, Keegan is having a flare of the HLH/MAS.  His ferritin level (an inflammation marker) jumped from 455 last Tuesday to 15,000 yesterday.  Normal levels are usually under 75.  10,000 is usually the cut-off to start chemotherapy.  Keegan's went from 15,000 to almost 50,000 in a matter of just a few days in September.  We are unsure if this flare would have happened without the tummy bug from last week.  The team allowed us to give Keegan an extra dose of anakinra today, and we will go in tomorrow morning for repeat labs.  If there is no change or numbers have worsened, Keegan will be admitted, possibly to the ICU, for another three-day steroid pulse.

Keegan is exhausted, quiet, and having bad diapers again.  Given that his numbers were so high yesterday when he showed no symptoms, I would bet the house that labs tomorrow are not going to be improved.  He has not spiked an "inflammation fever", but that doesn't surprise me.  It's complicated, but we know he had all of the criteria for this condition except for a fever while on his old immunosuppressant, Prograf.  We stopped that drug when he was in kidney failure last year.  We believe it was the switch to Rapamune that allowed the full picture, fevers included, to flourish.  Now that Keegan's back on Prograf, I'm not surprised that he doesn't have a fever.

We are also unsure what the plan for treatment will be from here on out.  I don't have the time or energy to go into much detail tonight.  There are a few other options besides chemo at this point.  None of them are desirable.  This news is utterly defeating.  And yet, we are gearing up for the fight.  We will not let our Bug down.  For tonight, we would just really appreciate your prayers that Keegan stays stable and that Gray, the medical team, and I can make the best possible decisions for his treatment and long-term health as possible.  Thank you.  More than you know.  Thank you.

Monday, November 7, 2011

Back home

Keegan was discharged home yesterday afternoon.  His fever did not return, and he woke in a decent mood.  His labs stayed about the same, although his platelets continued to fall.  It isn't reasonable to sit around inpatient waiting on labs to get better.  As a friend once said, Keegan would drive himself home from the hospital if we waited on labs to be perfect.

Today we learned his ferritin level drawn Friday had jumped significantly.  Basically to the level that it was when the doctors in Boston started to get nervous.  We will follow-up with rheumatology tomorrow to see what happens from here.  We did also learn today that the genetic testing run so far is all negative for an inherited version of HLH.  That doesn't mean he doesn't have it.  It just means either (1) the defect is on a gene we haven't identified yet or (2) he acquired it somehow from a trigger, such as a virus or his medications/illnesses in infancy.  Don't quote me on that last part, as we have yet to discuss this fully with hematology.  Now that the labwork is close to being finished, we will likely start seeking out second opinions from HLH specialists, particularly in Cincinnati and Houston.

I simply cannot express our gratitude for the prayers and support offered this weekend for Keegan.  This was a very stressful time, and we are so grateful that Keegan handled it so well.  More soon.  Thanks again!

Saturday, November 5, 2011

Day 2

Keegan is still inpatient.  He spiked another fever this morning, but once again, it broke on it's own.  He ate a little more today and seemed to be feeling pretty good until dinner time.  He refused to eat all but a few bites and got a little sick right before bed.  Then, he lost everything he had and then some around 9pm.  As of right now, he has stayed asleep but is moaning and taking big breaths like he is still feeling nauseous.

His labs were a bit of up and down.  His kidney function was better, CRP down a hair, but his blood counts each took a pretty big dip (white, red, and especially platelets).  The one level that should tell us if this is truly the beginning of another HLH/MAS flare won't be back until Monday!!  The lab gave some song and dance about not having the personnel or equipment to run it except during the week.  This was a level that we would have in a few hours in Boston.  It is THE key part of his diagnosis and tells us if we have to repeat the steroid pulse and/or turn to chemo to treat.  The fact that it "can't be run on the weekend" here is horrifying.  We saw it go from slightly elevated to taking a big jump to leaping to staggering levels in a matter of 4 days.  There's not much I can do about it this weekend.  If he is trending the wrong direction, I don't feel like it's going as quickly as it did before.  This is a problem we will definitely have to discuss with the team and plan for in the future.  Because it is highly unlikely that Keegan is going to only get sick Monday thru Thursday for the rest of his life.  I just don't understand how a pediatric hospital this big can be incapable of running a very important, life-threatening lab on the weekend.

As of this morning, it sounded like if he did well today and overnight and if labs were ok tomorrow, we could go home.  I didn't ask what would happen if the labs we can draw stayed the same, but he started throwing up again or spiked another fever.  We will have to discuss that in the morning.  In the meantime, the bug finally caught up with Gray.  Since Audrey was the instigator and already was exposed, she is still with him at home.  I think he's getting a little taste of the "moms aren't allowed to be sick" idea being alone with an active toddler while feeling crummy.  He should be doing much better by tomorrow, and thankfully, our families will be coming back into town tomorrow, which will definitely be a little relief.

I have a feeling tonight is not going to be as smooth as I was hoping.  Thank you for your continued prayers for our family.  You truly do make a difference and help us keep up the fight.

Friday, November 4, 2011

29 days

Guess we didn't have to wait that long to find out if Audrey really had a stomach virus or not.  Keegan started throwing up last night.  No surprise there.  The 101+ temperature this morning was different, though.  The team admitted him to the hospital this afternoon for observation, 29 days after he was discharged from the hospital in Boston.  This somewhat minor tummy bug is scary for two reasons (1) with so much immunosuppression, he can't fight it as well as Audrey did, and (2) viral exposure can cause an HLH flare.  Being that he just recovered from a flare one month ago, he is at a higher risk of another one occurring.  If it does, we will be in the tenuous position of having to suppress his immune system further to treat the HLH while he is trying to fight an infection where a healthy immune system is required.

Other than the vomiting, fever, and lethargy, Keegan hasn't acted too poorly today.  The fever broke on its own, and he hasn't thrown up since this morning.  Hasn't eaten anything all day either.  His labs weren't awful.  Kidney's not particularly happy, and his CRP (an inflammation marker) is elevated.  Still waiting on a ferritin level to come back before we make any assumptions.  If he is still doing ok tomorrow and labs are stable, we will talk about going home.  Hopefully, we are just being extra cautious and will be able to rebound as quickly as Audrey did.

Speaking of little bit, she is doing much better today.  Ate better, played better, slept better.  She and Gray are enjoying some quality father-daughter time at home tonight, as both sets of grandparents are out-of-town for the weekend.  Great timing, Keegan!

Once again, we can't possibly thank you enough for the prayers and encouragement for our Bug.  They really do help us get through every hiccup along the way.

Just because I needed a happy ending to this post.

Thursday, November 3, 2011

Long night for Miss A

Last night, Audrey was fighting some pretty bad tummy problems.  She was throwing up for several hours before she finally settled.  The only place she seemed comfortable was on the floor of her room.  So there the two of us stayed all night long.  Poor thing.  I've never seen her so miserable.  Needless to say, I am too old to be sleeping on the floor.  Ouch.  Audrey didn't eat hardly anything at all today and was a bit fussy but otherwise seemed ok.  She was rightly exhausted.  I looked over around 11am, and she had fallen asleep watching Sesame Street on the couch.  Wish I could have done the same.  I felt achy and a little nauseous today.  Difficult to tell whether it was from lack of sleep on a hard surface or something else.

Thankfully, Keegan seemed to be about status quo today.  I doubt we are out of the woods just yet, but we are really hoping Audrey's long night was due to drinking some of the bath water last night that had one of those fizzy bath colors in it.  A few more days will show how this will pan out, as most stomach bugs have a 3-4 day incubation period after exposure.  We will anxiously be waiting to see what happens, and we greatly appreciate your prayers for Audrey's recovery and Keegan's safety.  A stomach virus could be devastating to him at this time.  Thank you so much.  We will update again soon.