Back to School Shopping, Special Needs Style

Okay, so most of my kids went back to school almost two weeks ago.  We got the requisite pens, pencils (mechanical!) paper, notebooks, etc.  Add in the kleenex and other special grade school items.  I actually felt pretty good that, in spite of being in the hospital leading up to that day, we had just about everything in the basement.

It may be a good thing that Aaron's start date was delayed.  I'm still a novice when it comes to this back to school Aaron style.  Didn't realize that I have to have oxygen pre-authorized from the insurance.  Fortunately, the oxygen provider is willing to work with us, or he'd be out for another two weeks.

Then there's the training of his private duty nurse.  I think we've got a great one.  He and I and Aaron went down to meet with the school nurse and therapists and teacher and principal yesterday.  I loved that when we walked in, his principal exclaimed, "Oh, Aaron!  Your pictures just don't do you justice!!"  And before we left, he was flirting with all of them.  It's going to be a good year.

By last night, I had all his bags packed so his nurse could go through them.  'Cause see, if he's REALLY needing something, it's not good if it can't be found.  It's not zero on a test, it's life and death, you know, kinda the "really big test."

So just to give you an idea of what we're looking at, Aaron has a variety of items that MUST go with him, and they're in different bags.  There's the ventilator (breathing, you know, he kinda likes it) and some extra vent supplies in the corner pocket.  Then the suction bag with various bullets, catheters and so on.  His feeding bag (lunch bag, anyone?) has his feeding supplies, pump and some other miscellaneous things like a rain poncho, small fan and an allen wrench, cause that's what's used on all his wheelchair connections.

Then we have the "go bag."  That's probably the most important after the vent itself.  Inside that, I carry a mini-hospital room.  There's his extra trachs, his ambu-bag (for when he decides he wants more personal attention than he can get from the ventilator) stethoscope, emergency g-tube kit, and on and on and on.  That one actually is probably more important than the ventilator.  When he was lifeflighted, they didn't take the vent, but they took this bag.

If you really want to know what all we travel with, you can click here to go to our lists.  Or just find the link at the top of the page.

Anyway, just for good measure, he does have a backpack, you know, the kind that all kids carry when they go to school.  That's for notes back and forth with his teacher, any school-type things that he brings home.  'Cause this kid is going places.  I'm so excited for him to do this.  It almost reminds me of 17 years ago when Deborah started school.  She was so ready, me, well not so much.  But I knew it's what she needed, and has been so wonderful to watch her and her siblings blossom.  I think it will be for Aaron, too.

School days, school days

Dear old Golden Rule days

Never a Dull Moment

So by now I think everyone knows Aaron has a PICC line. And he's doing really well with it. I'm even becoming comfortable with it. Apparently we've both become a little TOO comfortable.

 Today we had a real treat. Another Trisomy 18 mommy is in town to drop her son off at BYU. I hurried to finish my work so we could go visit. Her Krissy is 13 years old and so cute! She also has a trach but wasn't needing oxygen or a vent.

Those black threads, they're supposed to
be holding that white flange down.  Owie!

When we got home, I was wiped out so I started his food and his IV meds and told William I was going to lie down. I guess that wasn't such a great idea because Aaron was in high spirits! He managed to wrap that IV line around his toys and then kick them out of bed. Can you see where this might end up? He managed to rip one of his stitches and tear a hole in the dressing. Fortunately, the PICC catheter only moved about a centimeter. At least that didn't come out!

It's a sterile procedure, so everyone
even Aaron, used a mask.

So here we are again, back up at good ol' PCMC waiting to have it restitched. Because he must have missed them up here, and one outing for the day wasn't enough.

Before we left, Andrew asked how long we were going to be gone.  I told him I didn't know, it would depend on how busy they were and how long it took to get to us, but I didn't think it would be that long.  His comment?  "So you'll be back in about two days or maybe less?"  Poor kid is just too used to us disappearing for days on end.


Stay tuned for our next post on back to school "shopping" for the medically fragile. Oh boy, the bases we have to cover...

Complacency is a state of mind that 

exists only in retrospective: 

it has to be shattered 

before being ascertained.

Vladimir Nabokov

New Fashion Accessory

Aaron is sporting a new fashion accessory, and thinking it's pretty cool.  I'm wondering if the red/green colors pop for him like they do for me, or if they blend together like they do for the brothers who are colorblind.

It's a legging, yeah, one of those things we used to wear back in the early 80's.  It was probably a good thing that they went out of fashion for the most part.  But they sure are great for him!

He got his PICC line on Tuesday and it's in his (and everyone else's) best interests if that stays intact, clean, and so on.  Especially since it lands pretty much right next to his heart.  Yeah, probably not the best place to be introducing bacteria.

So we cover it with a legging, and he thinks it's pretty cool!  In fact, I had to hold his arm still for a minute to get the picture.

He's doing much, much better.  In fact, he's been satting in the mid to high 90's on just over a liter of oxygen. We're waiting for his IV pump and medications to be delivered to us here at the hospital and then we'll be on our way home.

And yeah, it's time.  He's spent the majority of the morning turned sideways in his bed, a sure sign that he's feeling pretty good.  Everytime we reposition him, he scoots right back to where he was.  A far cry from a few days ago when he couldn't even turn his head much without crying.  So thankful he's feeling better, and so thankful for all the prayers offered on his behalf.

"In order to be irreplaceable, one must always be different." - Coco Chanel 

Getting a PICC

Just a quick update because I've got to be heading out soon for Papa Bear's viewing.  Aaron had a really good night.  Deborah came up for a sleepover with him while I went home for the night to help out there.  Apparently, he decided to expound on all sorts of things during the night and kept her up.

His cultures were negative this morning for bacteria, so they'll be putting the PICC line in this afternoon.  I won't be able to be here, but Gramma Brown's going to stay here and be with him.

He has lost another IV last night, so he's had two in the last 24 hours.  Poor baby.  I'm actually looking forward to the PICC line because that means no more pokes for blood draws or IVs.

So we're looking at a discharge on Thursday sometime, after I figure out how to take care of his line.  I'm a little nervous about it, but everyone keeps telling me that if I can do the trach and  vent, the PICC line will be easy.  So I guess we'll figure it out.  Onward and upward...

  All the world is a laboratory to the inquiring mind.  

~Martin H. Fischer

Update to the Update

Okay, so I posted a little too soon.  In fact, just by a few minutes.  But the game plan has changed.  We've got a new one, we think a good one, but a different one.

Aaron is still looking pretty good.  In fact, instead of scheduling his Tylenol, we're going to let him tell us when he needs it.  And right now, he's an hour past when he can have it and still looking good.  You can also tell by the smile, he's feeling better.  For the past several days, if you even moved him, he would start crying.  He's not 100%.  He's still pretty tired, not much energy, but the smiles are back.

However, he does have a staph infection, both in his trach and in his blood.  So it needs to be treated aggressively.  I'm so grateful we came in when we did.  They're pretty sure that it started in the trach and then moved to the blood.  But it doesn't appear that it's affected any of his organs.

So here's the game plan.  We'll get blood cultures back tomorrow morning.  At that time, if they're positive, they'll draw them again and we'll keep waiting.  If they're negative, we can move forward with a PICC line.  They don't like to put PICC lines in if there's an active, uncontrolled infection, so he has to have a negative culture first.  Those take 48 hours to grow out.

Because we have Papa Bear's viewing tomorrow evening and the funeral and burial services on Wednesday, we'll be in a bit of a holding pattern anyway.  I'll need to learn how to take care of the PICC line and all before we can go home.  Then he'll be discharged and finish out his IV antibiotics at home.  Sometimes I think this little man is trying to take me through all the clinicals of nursing school, without me having even enrolled.

Needless to say, he's not starting school next week.  If this was going to be a long-term thing, if he was older, I might look at it differently.  But it's not going to hurt him to miss the first week or two of school.  So we'll just keep on going.  But I'm so grateful this has been caught as early as it was.

Life's problems wouldn't be called "hurdles" 

if there wasn't a way to get over them.  

~Author Unknown

So Much Better

Aaron has turned the corner.  Yesterday afternoon while he was on the phone with Daddy, we saw our first tiny smile.  Then there were some more a little later on.  He began playing with his toys.  Oh, he's still pretty tired, and if you move him, he grimaces.  He's not 100% yet, but he also had a peaceful, restful night.  And he's snoring again.  Good sign!  That means the swelling in his throat is decreasing.  Here's hoping to a concert or two coming from him in the next day or so.

After sleeping all night, he woke up about 5 a.m. to play a little more and is asleep again.  And he rocked his head  back and forth to get to sleep.  That's what he usually does, but the past few days he's been in too much pain to do that.  It just made him hurt more.

Our situation is still a bit up in the air.  We should be able to come up with a plan for the tracheitis this morning.  It's a bit hazy because he got his first dose of antibiotics while on the way up here and then they took the trach sample after that.  So the growth samples will be a bit skewed, but we'll work with that.

The complicating factor right now is the blood cultures that we're still waiting on.  The type of staph growing out in the first one is not one that's usually seen as a skin contaminant, making it more likely that it's a real result and not just a false positive.  If it is real, we'll need to have a plan of action to deal with it, and it may very well be a more protracted stay up here.  'Cause an infection in the blood, well, we just don't want to play around with that one.  Blood travels, through the whole body, all the organs.  That's it's job, to take oxygen and nutrients through the body.  But if it's also taking infection throughout, well, let's just not go there.

Added in that we really didn't make much progress on his pain or oxygen needs until after we put the new antibiotic on board, the one targeting the possible staph infection, that helps make the case for something more than just tracheitis.

On the other hand, if the cultures are negative, we might be out of here tomorrow morning.  That would be wonderful.  Right now, we're still playing things by ear.  Either way, the antibiotics are working on whatever it is he's fighting.  He's looking better, acting better.  I'll take that.

Then shall thy  light break forth as the morning, 

and thine health shall spring forth speedily: 

and thy righteousness shall go before thee; 

the glory of the Lord shall be thy rearward.  

Isaiah 58:8

Tender Mercies

I'm not strong.  I've had people tell me that over and over.  But I'm not.  I'm weak, I'm frail, I doubt and I fear.  And sometimes those get the best of me.  But I also know where to look for strength.  Because there is One who knows all, who has felt all, and who loves me beyond measure.

This week has been a difficult one.  Besides the very obvious, Papa Bear's death and Aaron's most recent hospitalization, there have been other stresses.  A soccer tournament, a good thing, but also a busy, time consuming activity.  I left my purse in a store parking lot.  I'll never know who turned it in, but I am beyond grateful for their integrity.  There was so much of my "life" in there.  I left Aaron's suction machine at home on Wednesday.  That may not seem like a big deal to most.  We really don't use it all that often.  But when we need it, it can mean the difference between life and death.  And so on. Just "life" type things.  The "how do we make this work" stuff.

But today, today I was touched.  In church, a verse from the Doctrine and Covenants was quoted.  Thy days are known, and thy years shall not be numbered less; therefore, fear not what man can do, for God shall be with you forever and ever.  (D&C 122:9)  My mind went both to Papa Bear and to Aaron.  He knows them, He loves them, more than we can.  And their days are known.  It doesn't mean it doesn't hurt.  I truly believe that to not hurt, we would have to not love.  And that would be sad indeed.

Then the hymn, "Families Can Be Together Forever" was sung to close the meeting.  How I love that hymn, the truths taught.  I'm grateful to have been taught that we are eternal families, that we will see each other again.  It's not "good-by" but "until we meet again."

My sister-in-law wrote a beautiful song from notes that she took when Papa Bear spoke to us the last night at our reunion.  I printed it out and went to find a piano so I could hear it.  As I sat down, there was a hymnal on the music board with writing in the front.  I looked at it, and once more, I felt Father reaching out to say, "it's okay.  I know your pain, I know your fears.  I'm here."  The inscription was a quote from President Hinckley:

We know not what lies ahead of us. We know not what the coming days will bring. We live in a world of uncertainty. For some, there will be great accomplishment. For others, disappointment. For some, much of rejoicing and gladness, good health, and gracious living. For others, perhaps sickness and a measure of sorrow. We do not know. But one thing we do know. Like the polar star in the heavens, regardless of what the future holds, there stands the Redeemer of the world, the Son of God, certain and sure as the anchor of our immortal lives. He is the rock of our salvation, our strength, our comfort, the very focus of our faith.

Yes, He is my Father.  He loves me, He loves our family.  He will not leave us alone to struggle through things.  I am so grateful for this knowledge and comfort.

Remember, O Lord, thy tender mercies 

and thy loving kindnesses; 

for they have been ever of old.

Psalm 25:6

Sick

We have a sick little boy.  He had a rough night last night.  Between 9:00 and 11:00, we ended up bagging him three or four times, and for quite a while.  He needed more oxygen.  We gave breathing treatments, and changed out his trach.  He also popped a fever, so he got more Tylenol.  After that, he settled down and slept all night.

What made the difference?  Who knows.  And it wouldn't be a big deal, except it would be nice to know which was the magic bullet for the next time, because my guess is, there will be a next time.  This morning, he started in again, but his fever was also climbing, so he got Tylenol and hopefully we've headed it off at the pass.

His IV went bad this morning just after his antibiotics were given, so he had to get a new one.  My brave little man flinched, but that was it.  And we got it with only two pokes.  Believe me, that's a victory.

His blood cultures from the other night are growing out a bacteria.  We don't know which one yet, but they've sent new cultures and have added another, even stronger, antibiotic.  I'm pretty sure it was a contaminant.  I know that in all the failed attempts at IVs at AF Hospital, they weren't using gloves.  What I can't for the life of me remember is if they still weren't wearing gloves when they finally got the IV.  Yeah, exactly what I was going to notice and remember.  (Par for the course lately.  I've been forgetting a lot of things.) So my bet, and my hopes, are on that being a bad sample.

So we're playing the waiting game.  By tomorrow morning, we hope to know what's growing in his trachea.  By tomorrow night, we should have an idea of whether the bacteria in the blood it's a contaminant or not, and a more definitive answer by Tuesday morning.  This morning, he's still pretty lethargic, but he's awake and sort of playing.  As long as he's got the Tylenol on board, his heart rate and breathing and oxygen sats are okay, not great, but okay.  And right now, I'll take that.

Pain is a gauge of the healing process. 

It often teaches us patience. 

Perhaps that is why we use the term patient in referring to the sick.

Elder Kent F. Richards

Have We Got Good Timing, or What?

Yeah, we're back.  As in back in our "vacation home."  And the question above?  I think the answer is the "or what."  I'm sure the timing could have been worse, or more challenging, or whatever, but that's hard to imagine right now.

Looking back, I can see that things were brewing.  Aaron was quite the man around town this week.  On Monday, we visited the dentist (who said he looked great!) and cardiology (who was also pleased with what's happening).  Wednesday, he saw the eye doctor, which was followed immediately by a soccer tournament for his brother.  Again, he got a great report, slight astigmatism and slight far-sightedness, totally normal for a kiddo his age.

Wednesday night, he was wiped out.  Me, too!  I think hanging out at 97 degrees at a game can do that to you.  His secretions were also a bit thicker, but I figured that was because of the heat and being off of his humidity.

Thursday was round two of the soccer tournament.  He was needing more oxygen, but still way within normal limits.  And it was hotter, 100+.  He was more tired, and his secretions were still thicker and more copious, but not too bad.  Again, I blamed the heat/lack of humidity.

Maybe I should have remembered that before he ever set foot (wheel?) on the soccer pitch, I was already suctioning a few times a day, which is pretty abnormal for him.  But  I was also distracted.  In the meantime, four of my other boys had dental appointments, my father-in-law was discharged from the hospital to go to an residential rehab program to get him ready to return home, and it was the week before school starts.

Then Thursday night, after we got home from soccer came the call that Dad had coded.  He had been taken back to the hospital to try to get some answers about pain and coded in the ER.  William and I rushed down there, but he didn't make it.  It came as a complete shock to everyone.  He had been doing so much better.  The problems he'd had were all resolved.  It was something completely new.

Which brings us to Friday morning.  Aaron had slept again all night, but was restless.  And instead of waking up to play, he woke to cry.  He's been sensitive to people passing before, and I wondered if that's what it was.  And I still think it may have played into his sadness.  But there was more, too.  His heartrate was higher than it should have been.  I kept checking for fever, but no, it was good.  Secretions were still thick and sticky, but not a whole lot of color.  I gave albulterol to try to open him up, and Tylenol because he was acting like he hurt.  He spent the day either crying or sleeping, and even sleeping wasn't restful.

He stayed home from the tournament on Friday.  I was just not going to mess with that with him.  I was still thinking it might have been the stress from that, but also starting to realize that maybe there was more to it.  I also changed his trach out, hoping that would help.  It did, but just temporarily.

When I got home, he was awake and crying again.  He was struggling more with his sats, and his heartrate had been in the 150-170's range when he was awake.  This is WAY above normal.  His nurse felt like there was junk just below where the suction was reaching, so I told her I was going deeper.  I pulled out a big, thick, sticky, DARK RED plug.  Yeah, not good.  It helped, but again, it was pretty temporary.

So we headed down to the American Fork Hospital.  I figured my chances of it not being "that bad" were about 50/50.  And the first thing back, his chest x-ray, looked just like Aaron, cloudy with a chance of junk.  Nothing different than the dozens I've seen before, so good sign!  But then, his temperature started to climb to 101.8.  Things stalled a bit as it took over an hour and a half to just get his labs and an IV.  Now, the vast majority of the time was spent in looking for a vein, or in looking for someone else who could look, but the kiddo just wasn't sharing his blood.  Fortunately, most of the pokes also didn't seem to hurt, although that may have been because he was just so miserable already.

Labs came back and things weren't looking so good.  His white blood count (the body's fighting mechanism for infection) was pretty high.  It was also heavily banded.  That means they could see it ramping up to create a lot more white blood cells, a sign that the infection was really setting in.  Home wasn't looking too likely at this point.  The only thing left was a urine analysis.  When that looked good, the jury was back.  We were heading north.

So by the time we got here and got settled (soooo glad they "direct admitted" him straight to the floor and we didn't have to stop in the ER here) it was almost 5 a.m.  I'm almost wondering if this kid's trying to change my sleeping schedule.  They've taken a sample of the tissues from his trachea so we can learn what kind of bacteria is being the bully.  That will take about 48 hours to grow out and then they have to determine susceptibilities.  He just ends up on too many antibiotics so they try to just give him the ones that will target the specific bugs he's got.  In the meantime, he is getting some strong IV meds.  Right now, he's sleeping peacefully.  He's so worn out.  But this is a quiet, restful, hopefully healing sleep.  Just what he needs.

Sickness comes on horseback but departs on foot. 

 ~Dutch Proverb

Papa Bear

F. Grant Peterson, our beloved Papa Bear, Grandpa Bear, or just simply "Bear" finished his earthly mission last night.  There is a hole that has been left in our lives, a great, big, bear-sized hole.  Somewhere around 40 years ago, his daughter said he was "furry, just like a bear" and a nickname was born.

Papa Bear was an incredible man who loved both God and country, fiercely.  He served as an LDS chaplain in the Army in Vietnam.  Although in the midst of danger, he never carried a gun, trusting God to protect him, and He did.  After obtaining a PhD in Mathematics, he continued to serve in the Army Reserve, eventually becoming a colonel, while also teaching accounting at BYU.  When Desert Storm came along, he was activated and once again, donned the military uniform full time for a period, counseling and comforting others in his role as chaplain. 

Bear was a brilliant man.  I don't know that he ever forgot much of anything.  An incredible pianist, he could go for years without touching the keys and then sit down and play without missing a note.  He was also an accomplished locksmith, keeping the tools of his trade in a little basement room and coming to the rescue of many friends and neighbors. 

But this pales beside what really mattered to him, his family.  His beloved "Wiess," their seven children and their spouses, and their 30 grandcubs.  Yes, he was our Papa Bear.  A man that worked hard, but quietly to provide not only for temporal needs, but spiritual needs as well.  There was never a question that Papa Bear knew God lives and that He has a plan for each of us.  He followed that plan, he kept his faith, and he taught us well. 

We'll miss you, Papa Bear.  Thanks for the counsel, the memories, the love.  Until we meet again...

He Knows You

by Alice Peterson, 

taken from thoughts shared by Papa Bear at the reunion in June

He knows you, He knows your name
He knows the way to help you all the same
He knows what He wants you to become
He knows the path, he calls and bids you come

He knows you,  you are His child
He loves you and He’ll help you all the while
Be patient when He cuts you down a bit
It's only cause He loves you and won’t quit

Like the gardener cuts the currant bush down low
He’s only pruning you to help you grow
Cutting out what blocks the light
Helping you to grow in might.

Be still child and learn to see,  
He knows just what He wants you to be
Trust his vision, feel His love,
He’s your Father up above.

I don’t  know,  what all things mean.
He does, and what sweet comfort this can bring
We each must walk the straight and narrow path
If we are ever to return at last

The mists come,  we travel through
We must hold on to what we know is true
We each will reach our own  Gethsemane
Remember that He’s there for you and me.

Be still child and learn to see,  
He knows just what He want’s you to be
Trust his vision, feel His love,
He’s your Father up  above.

Determination

This week has been a pretty intense one.  Oh, not from a physically caring for Aaron perspective, just from a "that's life" perspective.  I took time off of work when we found that he was struggling and we were changing nursing companies, ventilators, and a host of other things.  Now it seems  to be catching up with me in the form of very heavy work loads.  Oh, well, it translates into a better paycheck.  Not a bad thing when I took just over two weeks off.

Plus there is an extended family member who is having their own medical challenges right now.  Since I've been blessed (and yes, "blessed" is the right term) to have learned a lot about hospital situations and "medicalese," I've been helping out with communications.  Then add in the general craziness of a busy household.

But these things, the "that's life" stuff, paled in comparison to what I was really needing to have accomplished this week.  Last week, the cardiologist put Aaron on a new med.  This one is very tightly controlled.  You know when you go to the pharmacy and have to show your driver's license and prove that you're over 18?  Well, they've got nothing on this one.  Not that I think it's got any street value at all.  In fact, I'm pretty sure that it doesn't.  But the hoops you jump through could make it eligible for Barnum and Bailey's famous circus.  So here's the story of the miracle this past week:

Monday:

I call the enrollment program for the drug, because the first step in actually getting the med is to enroll in their mandatory program.  They don't know anything about us.  Hm, well, it was put together on Friday, maybe it will take a day.  Plus, maybe there has to be insurance approval before the info is sent to them.

Tuesday:

The enrollment program still doesn't know anything about us yet, and neither does his insurance company.  Or rather, the insurance hasn't heard anything about a new med.  Yeah, the one we had to get special clearance from the hospital for to be sent home with a one-week supply.  We've now used four days of that one week supply.

So I put in a call to cardiology.  Bonus, the doctor himself (not our regular cardio, the one who did the heart cath) calls me back.  Um, turns out I haven't signed the paperwork to be enrolled in the program (didn't think I had but I signed so many things last week I wasn't sure) and they also need a letter of medical necessity.  There's a few options, they could mail it to me and I could send it back (yeah, I think that would effectively take the rest of our time window), they could fax it (don't have a fax here), or I could come up there.  I asked if they could email it and yes, we had a way to do this.  Good thing, too, 'cause I wasn't really interested in taking over two hours out of my day to go up there, but I would have done it.  

As soon as it came through, I signed and sent it back.  Now to find our regular cardio and get his signature on it.  His secretary was out of town that week, but lucky us, the secretary for the heart cath cardio was covering for her.  Yea!  At 4 o'clock I hear from her that the enrollment form and the letter of medical necessity have been faxed to both the insurance and the enrollment program.  

Shortly afterwards, I call over to insurance again, and they don't know anything yet, but it's probably in the pile that's just come through.  They'll keep an eye out for it and let me know when it arrives.

Wednesday:

Bright and early, I put in another call to the insurance company.  They've got it.  It could take up to ten to 14 business days for approval, but they've usually been getting them done in about six business days.  Anyone see an issue here?  And I can't tell them that it's urgent (well, I did, but that was just conversation, it didn't carry any real weight) it has to come from the doctor.  Once again, I'm calling this secretary who has been fabulous but will probably be glad when I recede into the background.  Just after I hang up, another insurance agent calls me back to tell me that the paperwork is there (the one I spoke to the night before) and that she's also watching it to make sure it's flagged urgent as soon as they get the call.  

At 8:20 a.m. (I did say bright and early) the secretary calls me to tell me that she's made the call and it's been marked urgent and will be taken care of within the day.  About 10:30 I call insurance again and find that it's being looked at, but they need more paperwork on Aaron.  At 12:10 p.m., I get an email from the cardio secretary saying that it's been approved!  The major hurdle in all of this has been leaped.  In just over 24 hours, we ('cause there were a lot of other people involved besides me who made this their priority) have gotten approval for a major medication from insurance.  And that's down from what easily would have taken three to four weeks had it just ground through the process on its own. 

I call the enrollment program and they're also processing paperwork and we go over, again, the side effects, both probable and possible, and the need for monthly labs.

Thursday:

I call the specialty pharmacy out in Tennessee (I said it was special) and they don't know anything about us.  Yep, starting to sound like a broken record.  I call back to enrollment and they've sent it over, it might take an hour or two to process, but it's marked urgent, 'cause we're almost out of meds.  An hour later, they still can't find us, so I use the magic name that the enrollment program gave me, their liaison  with the pharmacy.   She works for the pharmacy processing the new claims for this med.  She's sent it over to be filled twice now, so she puts me on hold while she tracks it down.  She sends it again and tells me to call back in two hours if I haven't heard from them.  

Almost two hours later, the phone rings, YEA!!!  It's a pharmacy tech who goes over all the nitty-gritty like address, what to do when running low, and so forth.  Then I speak to a pharmacist about how to prepare it, store it, safety precautions for those who prepare it (yeah, those nasty side effects need to be avoided at all costs), and other drug interactions.  Finally, at 5:30 p.m., they're ready to ship it out.  

Friday:

Mid-morning, we have touchdown, a UPS package delivery.  Plus, I walk into his room where he's sleeping (yep, totally backwards on his days and nights again) and he's satting 99 on two and a half liters of oxygen.  I haven't seen that in months.  And yes, once again, my own breathing is better as well.

So thankful for those who worked so hard for us on this.  All I could do was be the squeaky wheel.  I had to rely on others, the doctors, the one AMAZING secretary, the insurance folks, the pharmacy liason, and so forth to actually get the work done.  A breakdown in any of these spots, people who weren't actually engaged in helping other people, and it wouldn't have happened.  But it did and I'm so glad.  So is Aaron.

“It had long since come to my attention that 

people of accomplishment rarely sat back 

and let things happen to them. 

They went out and happened to things.” 

-Leonardo da Vinci

Where Things Stand (I Think)

I guess after this past week, it's hard for people to know just where we are emotionally.  Actually, we're in a pretty good place!  Yeah, we got news no one wants, ever.  But you have to realize, we've been getting this kind of news for three and a half years.

Medically, no, things don't look so great.  His heart/lung issues have progressed, faster than they're "supposed" to.  He's been started on a new medication which can have some nasty side effects for the liver.  Read that again.  It says "can," not "will."  And our thought is, what good is a beautiful, perfect liver if your heart can't get the blood through your lungs to pick up oxygen?  So it's not ideal, but it's reality.  The other thing is, it will probably take a month to kick in, and maybe up to three months to be fully effective.  So yeah, there are still some mountains to climb there.

But Aaron has been a fighter from the beginning.  From the start, or even earlier if you measure birth as the beginning, his doctors have mentioned that he doesn't "play by the rules."  He writes his own story. And there just haven't been enough children with his condition who have survived long enough to really "know" where it's going.  For example, he got a blood transfusion that turned things around 180 degrees.  His hematocrit wasn't anywhere near low enough for it to have made this kind of a difference, but it did.  I joke that since we're all O+ at home, we'll just stick a needle in one of us and another in him with a line in between.  When one person has given what they can, we'll move onto the next.

And right now, Aaron is in a really good place!  And when he's in a good place, so are we.  Those smiles and laughs and songs just keep spilling out of him.  Oh, he'll probably sleep through church again today, but that's because he threw yet another all night party last night.  And I know a lot of others who might be tempted to sleep then as well!

I'm trying to adjust my mind to his new oxygen parameters, and it's a little hard.  After trying to keep his sats in the mid to high 90's for the past three years, it's a little disconcerting to try to be okay with mid 80's.  And I just haven't gotten anything like a handle on thinking low 80's are all right.  But his cardio kept saying that if he looks good, acts good, it really is not only okay, but may actually be better for him than higher oxygen flow.  So I'm working on my thinking here.

It's interesting to feel how my own body reacts to changes in his, and it can go through the cycle a few times in a day.  His numbers change for the worse, and I tense up.  I find it harder to focus on other things.  But then they improve, and stay good for several hours, and the sun has come out again, the sky is blue and birds are singing.  Yep, life is good.

The one thing we do know is that Aaron will be here just as long as he is supposed to.  He has been promised that he will not return Home until after his mission here on earth is through.  Our loving Father knows him and knows his days, and knows us.  And that I find comfort in.

"Having lived with our Heavenly Father and having come to earth life, we must have determination to return with honor to our heavenly home.”  -Elder Robert D. Hales 

Sing, Sing a Song

Remember that really neat song from your childhood?  I remember it from Sesame Street, the kids playing and singing together.  I guess the Carpenters sang it, too.  Anyway, fun, easy to remember, great message.

Well, Aaron agrees.  He LOVES music.  This kid will rock out to just about whatever is playing.  Yesterday morning, music therapy came in and asked if they could play for him and what kind of music he liked.  I told them really, anything.  But that he was trying to decide if he was going to sleep since he hadn't had much lately, so they settled on some really nice, soothing lullabies.  Beautiful!  Except that there was music in his room, right by his bed!  Who needs sleep when that's happening?  Not him!  So they switched things up and he had a blast!  They did, too.  He was rocking and moving with the beat, just laughing and smiling with them.

Last night, he held his own concert.  It was so loud that he brought in his own fan club.  A couple of the nurses on the unit heard and came in and I invited in his next-door neighbor (we've known each other both in and out of the hospital for quite a while).  Lots of smiles and laughter as we enjoyed his show.

When did this start?  Well, I'd been hearing about coconut oil and how it's a "good fat" that helps the body in so many different ways, including neurological connections.  Other parents had said how their kids seemed much more alert and verbal.  After getting the go ahead from his team, I decided to try it.  Within 48 hours, this little man was going to town!  And we know have yet another marker for when he's getting sick.  He stops "talking."  But recently, he started singing.  It's just vowel sounds, but he'll move up and down the scale, and it make my heart smile.

There is nothing quite like the power of music to capture a feeling, a thought, a moment that can't be expressed any other way.  I love that he now sings, too.  I'll leave you with the moment I captured yesterday.  Unfortunately, it wasn't his best concert.  Somehow, every time I pull the camera out, he becomes either more interested in trying to figure out just what that thing is, or else he's camera shy.

On a practical note, we should get sprung from the joint today.  In fact, we're counting on it.  He's doing much better right now, back to being awake way more hours than asleep.  I'm actually doing really well.   I think that having been told now for 3 1/2 years that his time is "short", I've learned to live more in the moment and try to push the future thoughts away.  Much easier to do when he's acting well than when he's sick.  I think it's a blessing we're given, to be able to just enjoy today.  And so, since he's been doing so great for the past 36+ hours, I am, too.

I am starting to get the sense that the end may come faster than I want it to, but then that's pretty much true of whenever it is that he decides to go Home.  And he's an obedient kiddo, really, he is.  He has tried to do what we tell him we need since before he was born.  So yesterday I pointed out that he's got a brother and a sister who are on missions, and another one leaving before they come home.  I suggested that maybe he can stick around until we're all done with missions.  That'll be 13 years!!  Worthy goal, right?  But no matter if it's 13 years or some much shorter time, I'm going to do my very best to enjoy whatever we've been given.  I know there will be tears, but there will also be lots of smiles and laughter, too.  Enjoy his show.

“A bird doesn't sing because it has an answer, 

it sings because it has a song.”

Maya Angelou

Happy Boy!

We have a happy boy!  Not all our news was good yesterday.  In fact, some of it qualifies as "downright bad."  But as the old TV show song went:  "You take the good, you take the bad.  You take them both and there you have the facts of life."

So to get the bad out of the way first.  His heart cath was not good.  He tolerated it well, but the info coming back wasn't good.  His already high pressures are significantly higher, like, much, much higher.  And they've changed in a much shorter time than was expected.  There is no cure for Aaron.  The only cure is a lung transplant and he's not a candidate.  They are adding in another medication to help slow it down.  It will not reverse it, and probably won't even stop the progression.  But we hope to slow it down.  It is what it is.  I don't like it, but I can't change it.  But I can put a bandaid on it, and hope it's a really good strong one.

Prior to his heart cath, they gave him a blood transfusion.  The transfusion doesn't have any effect on his pulmonary hypertension itself.  What it does do is add more freight cars to the blood train that hauls the oxygen around his body.  This lets him oxygenate better on less oxygen input and it also lets him sat lower.  Because there's more oxygen volume going around, he can have a lower sat rate.  And too much oxygen going into the body can actually be toxic, or in William's words, instead of oxygen, it becomes toxygen.  So it's not good for him to be needing 8+ liters just to maintain sats.  It can further injure his lungs.

But the good news is, he's back.  Our happy, playful, don't wanna sleep I might miss something bug is back.  He was more awake and alert in the recovery area yesterday than I have seen him since Sunday.  And he played All. Night. LONG!  Since Sunday, he's only been awake two or three hours every 24 hour period, and those were still very tired, inactive hours.  We saw him for the first time about 4 p.m. and he didn't fall asleep until between 5:30 and 6 A.M.!  We also saw the evidence of a long overdue ear infection last night and when I went to give him his ear drops at 9:30 this morning, he woke up to play again.  It does this mama's heart good to see him so happy.  I almost feel like his mirror.  When he's sad, I'm sad.  When he smiles, I smile.  And it can change that fast.  I'll take that good, as much as I can get.

So, right now, the only thing that has been done therapeutically is the blood transfusion.  Again, no bearing on his pressures at all.  But it's given us our bug back.  We'll be watching his red blood cells, although they were actually higher pre-transfusion than they were last December when he was looking great.  And we'll keep adding on freight cars as we need to either with more transfusions or a medication that will tell his body to kick it in gear and make more himself.

I am so grateful for the atonement and the Plan of Redemption.  I am so grateful for eternal families.  This would be completely unbearable without that.  But I'm also grateful for the extra time we're being given.  His time will be too short from my perspective.  Doesn't matter how long we get, it won't be long enough.  It's not him I'm worried about, really.  It's me.  I don't know what I'll do without him by my side.  And I'm grateful that day has been put off again.

This is the day which the Lord hath made; 

we will rejoice and be glad in it.

Psalm 118:24