Tuesday, February 25, 2014

Friday, February 21, 2014

Sickies

Always overdue for an update around here.  I'm getting ready for the Cowtown Marathon this weekend, and I just realized I never did a full post on the Houston Marathon.  Oy.  We managed to make it through a rough week in health for both the kiddos this week, which followed tightly on the heels of yet another sinus infection battle for me.  We could be in a much better place going into the weekend, but we are praying the sickies are on their way out.

Keegan took a nosedive mid-week, but we believe his was caused by some medication changes we made recently.  Without much thought, we weaned his steroid dose and increased his oral magnesium dose nearly simultaneously.  It caused a big increase in his GI difficulties, and by Wednesday, he was nauseous and exhausted.  We backtracked on his mag dose, started some nausea meds, and took some time to let him rest.  By today he was back to his old energy levels, but unfortunately, his nose started running too.

Then there's Audrey.  She had been battling a runny nose for weeks and developed a wet cough over the weekend.  I talked to the pediatrician early in the week and was told not to bring her in.  Then I got the call around lunch today that she had a fever and needed to be picked up from school.  Luckily, she just has a nasty ear infection.  The doctor warned that this type of infection may be contagious and to watch Keegan closely, but we are hoping that the start of antibiotics today will help nip this thing in the bud before it affects him.

What a way to end the week when I was planning to travel over to Fort Worth for a race.  So if anyone could spare a prayer that the sickies are on their way out of the Harrison house, we would greatly appreciate it.  We are extremely grateful that we have thus far been able to weather all this at home, and we simply are praying to stay here.  Thanks as always!

Tuesday, February 11, 2014

CHD Awareness Week & DallasMomsBlog guest post

Here we are again in National Congenital Heart Defects Awareness Week.  I have no great posts in me for this year, but I did put some thoughts together recently in a guest post for DallasMomsBlog.  You can find it by clicking HERE.  Should you be looking for more information on CHDs, feel free to use the search function on the right-hand sidebar to search for my previous posts during this week.  CHDs cannot be prevented and affect 1 in every 100 babies in America.  There's not much we can do to change that, but we can remain educated on how to detect them, to spread awareness, and pledge to support research for treatment.  Maybe one day we can change that.


Sunday, February 9, 2014

"Snow" Day

After some epic ice storms in North Texas this year and way more than usual days of sub-freezing temperatures during this past winter, we finally got some snow.  And when I say some snow, I mean that quite literally.  While the rest of the country has been blanketed in snow, this was the extent of what we have received thus far.  Audrey woke up early, saw the little amount of snow, and came running in my room exclaiming, "it's not ice; I won't slip!"  I couldn't deny her a little bit of time playing in what we could.  I have plenty of other things to post about that I will hopefully get up in the next few days, but here are our "snow" pictures for today.

Two years ago after a few snow-heavy winters, my mom bought snow suits for the kids,
as she felt they would get to play more with proper clothes.
I warned her that with our luck, purchasing snow suits would keep snow away from
our area for at least a decade.
Seems I was right.

I guess we can at least say the entire outfit was worn once!
Unfortunately, they both outgrew the boots, but rain boots work well enough.

Audrey's first snow angel.



"It's a [sideways] snow Keegan!"

Drawing in the snow

Snowball fight!

Sunday, February 2, 2014

Annual cath and biopsy

On Thursday, Keegan was admitted for his heart transplant "annual", which includes a heart catheterization, angiogram, and biopsy followed by an echo, EKG, chest x-ray, and labs.  It's always a long and gut-wrenching day, no matter how well a child looks on the outside.  Keegan may not be in the best of health, but by all indications, we had no reason to think we would find anything wrong during his annual.  We have been in the transplant world long enough to know that looks don't mean squat.  Cath results are very telling, and biopsy is king.  Lest I scare you in that introduction, Keegan did get a good report this year.  His biopsy results came in with a 1R, which is a low-level and "acceptable" level of rejection with no treatment required at this time.

The day went much smoother than any other annual day we've ever had with Keegan.  He was scheduled as first case of the day.  We arrived at 7am with a Bug that was happy to be at his "big hospital" for the meantime, even though he was already asking to go to "[his] room on number 8".  Even though we know/assume that he begs to go to the cardiac inpatient floor because it's part of his routine (a sad statement in and of itself), it still is quite unnerving to hear, in case he's actually trying to tell us something.  He was quite chill in pre-op, was in the cath lab by 9:45am, and we were able to see him in the PACU by 10:55am.  They had to go in through his groin again in order to not mess with his central line at all.  Keegan's heart pressures were fairly stable from last year, and the team did not see any blockages or evidence of vasculopathy at this time.  Whew!

Then came 4 hours of trying to keep him (a) calm, (b) flat, and (c) leg straight for 4 very long hours.  The begging for the inpatient floor ramps up to a fury by the time he wakes up.  Anesthesia gave him some extra juice to help him sleep a little longer, and we ultimately had to give him some extra fentanyl and anti-nausea meds to work through it.

Trying to chill during the wait
We were thankful for a nurse that was willing to let him cheat a bit by lying on his side.

He started to get really antsy by three hours in and battled more nausea than he usually does post-anesthesia.  Then all of a sudden, he relaxed, ate a little bit, and said he was ready to go home, not the inpatient floor.  His chest x-ray, echo, and EKG were all stable.  Labs weren't too messy this week; nothing out of the ordinary, at least.  And finally, the biggest miracle of all?  We were discharged before rush hour traffic!!  For once in our lives, we were home before 5pm!  We were able to get Audrey back home and spend the evening together as a family.  Amazing and such a blessing!  Well deserved after 6 years and nearly 60 rounds of anesthesia!

Now if he had not broken out in hives later in the evening, it would have been a pretty great day, as far as heart transplant annuals are concerned.  Some benadryl, tylenol, and hydrocortisone helped ease his discomfort though, so that little hurdle was cleared.  We are hoping the hives are an anomaly, since he is already allergic to morphine.  An allergy to fentanyl would be a kick in the pants, surely.  

On Friday, we received the news that his biopsy results were 1R.  I thought that Keegan had a 1R result at least once before when he was younger, but I couldn't find that in a search of the blog.  It's not the most hoped for result of 0 rejection, but according to the team, a 1R isn't a far cry.  There is no treatment required for it.  As a mom, even a 1R can be hard to swallow, but we will take it and run for now.  

Overall, it was great to start 2014 off with a good assessment of where Keegan's health is, and to know that considering where he's been, we are sitting pretty.  Thank you for continuing to keep us in prayer.  Throw a few our way in regard to our insurance fight too, if you feel so inclined.  Luckily, Keegan has secondary Medicaid, but this riff with United is still a drain and important to beat for the long run.  Thank you again, friends.  Stay warm and safe out there!  More soon.