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