Home Again

We're home again.  Labs and past history point to a nasty trach infection, tracheitis psuedomonas.  He's probably got it in his eyes as well.  We won't know for certain until the bacteria grows out, but that will take until Friday.  He's doing really well and stable again, so it made sense for us to come home before he managed to catch something else at the hospital.   Because using the nebulizer antibiotic required changing the vent to a completely different mode of operation, they won't let us do it at home.  So instead, he's back on an oral antibiotic which should also take care of his eye infection.


I think he's glad to be home.  As I took down his pictures and toys from his hospital bed, he started smiling.  Then when I got him dressed in his own clothes, he just couldn't stop grinning.  It was like he was saying, "Yea!  I'm outa here.  And I didn't even get an IV this time.  Hurry, let's go before they realize I skipped it!"  He was really excited when Michael and William got there to pick us up.  Now, he's sound asleep.  Happy baby.

Making Progress

This morning, Aaron's nurse, Jennifer, asked me what my goals were for Aaron today.  We decided that we wanted to move in a positive direction.  That seemed to cover everything.  And he has.  It looks like another trachea infection, psuedomonas tracheitis, and it might have caused some tummy upset.  We won't know for sure for about five days, but based on clinical signs and a high white blood count from his trach, that's what they're assuming.  And as long as he looks good, it doesn't make any sense to keep him here where he can be exposed to other illnesses. 

He also may be starting a cold or eye infection.  He's got some discharge and mucus in his right eye and both eyes look a little swollen.  He's slept most of the day, lucky kid.  I actually got a pretty good nap in.  It seems that lately, every time I try to take a nap during the day, the phone rings or he alarms or something about 10 to 15 minutes after I fall asleep.  I slept 1 1/2 hours.  It was wonderful, especially since I was up by 3 am.

Tonight, we're starting a 2 week round of nebulizer antibiotics called tobi nebs that will be given through his ventilator and increasing feeds slowly. He was on Pedialyte today and then slowly switched over to his formula.  He's supposed to get his regular continuous feeding tonight and then we'll try to go back to bolus tomorrow.

IF that goes well, we'll probably discharge after his 2nd feeding. Hoping, hoping... 

 

We're Baaaaack!

We’re here again.  Aaron has been looking good, so good, for quite a while.  Then yesterday (Sunday, Mar 27) after his 2 pm feeding, he started acting funny.  He was desating and alarming quite a bit.  I vented him and he had a LOT of tummy bubbles.  But he kept struggling, so I vented him again.  Finally, I set him up with continuous vent and he continued to bubble right up to his 5 pm feeding.  He also went up a lot on his oxygen, from 2 l/min to 5 l/min.  Tried suctioning, but really didn’t get much, and he sounded a bit tighter, but still okay.  I was able to turn him down a little bit, but he was still above baseline.

Usually Aaron gets his feedings over 30 minutes, but since he was struggling, at 5 pm I spread it out over 1 hour.  He did a little better, but was still having trouble with sat rates by the time he was done.  Not as much gas, but still quite a bit, especially when we don’t usually vent him at all.  Same thing for 8 pm, so I changed his trach out about 9:30, after his last feeding had time to settle.  When I pulled the trach, there were a lot of green secretions that came out of the stoma with it.  A bit more suctioning, and we actually came down to 4 l/min.  I thought, I hoped, that this meant we were on our way.  No dice.

Brittany was our nurse last night and I asked her to wake me if he ended up at more than 5 l/min for longer than ten minutes.  At 3, it was time.  So I called for a transport and we came up to Primary’s.  Really not sure what’s going on.  He’s looking pretty good right now, although he’s still on the equivalent of our 4 l/min.  They’re running tests.  So far we’ve had his blood gas come back, measuring how well he’s processing the oxygen he’s getting in his blood stream, and it looks as good as it ever does.   His x-ray also looks Aaron- normal.  My sense is that this may be tummy related since he’s having the most trouble when he’s eating.  Hopefully, we can get some answers and help him.  For right now, he’s actually resting quietly.  Kinda wish I was too.

Trisomy Awareness Month

Trisomy Awareness Month. This is a beautiful video put together by one of my trisomy friends. Aaron is featured just before the middle. Most of these kids are full trisomy like Aaron, some have mosaic trisomy, less severe. Several are still alive, many have grown their angel wings. All are precious in God's sight.


This is a video/slide show that shows some of the many children with Trisomy. This video shows that these children cannot and will not be defined by their one extra chromosome. Please watch and learn more about these inspirational children!

I Gots Me Some Wheels!!

Aaron and I went to Salt Lake yesterday to pick up his wheelchair/stroller. I know that sounds kind of weird.  No nine month baby can get around without wheels, but Aaron also has a TON of equipment that he lugs around, too.  And my stroller is not happy about carrying it all.  So now we have a $5000 (yes, that's thousand) stroller that is supposed to carry it all.  I've bought cars for less.  But it will last him for at least five years, and if his growth is on track, probably a lot longer.  And insurance covered it all.  Thank goodness!

Aaron also had his nine month check-up today and it was wonderful.  Dr. Knorr kept saying over and over how good he looked.  He said he'd never seen Aaron looking better.  He responded by smiling big smiles and drooling big drools.  He's now 12 pounds, 1 ounce and 24 1/2 inches long.  We've had to put away the rest of his newborn clothes.  That's right, at nine months, he's officially out of the newborn size and into 3 months.

He also got two shots and wasn't happy at all!!  I have to admit, I was sad that he hurt, but grateful he was screaming (silently, of course, because he can't make noise around his trach).   A baby's nerves don't all have myelin around them when they're born.  This fatty sheath protects nerve endings and is needed for effective pain transmission.  Because he is now really upset and hurt when he gets his shots, it looks like this has developed.  It used to be that it didn't bother him at all.  Sorry, kiddo, shots are a part of life. Anyway, he's sleeping them off now.   Hopefully he doesn't have too much trouble with them.  In the past they've made him really cranky and sometimes congested.

We took our new stroller to the doctors and are still trying to figure out the best configuration for all his equipment.  It sure handles much easier than his old stroller did.  Now if it will just stop snowing we could go out for walks!!

It's the Little Things

 With all the other kids, the refrain was, "They grow up too fast!"  Finally we have a baby that is taking things slowly.  It is so fun to really enjoy each little milestone, except they're really big milestones.  Tonight while playing with Aaron, he grasped a new one, literally!

 

We were playing with some beaded keychains Gramma Brown brought for him.  As I touched the top of his left hand, it caught his attention.





He rotated his hand to touch and then grasp it.

He's absolutely fascinated by the small toy!

As I pulled it back, he wanted it closer again.

He pulled it closer and then back out, studying it all the time.

After about ten minutes, it was time to look for something else to play with.

It's the little things that end up being such big events.  I am so grateful for the opportunity to slow down and watch all these milestones that I somehow missed before.

Life Lessons from Death

We’ve added another character to our home in the past year.  I’m not talking about our precious son, Aaron.  I’m talking about the person that moved in when we had our ultrasound.  Death has chosen to come make our acquaintance this past year.  Oh, he’s not around that often, but he’s here often enough that we can’t forget him.  Before last year, he was kind of an abstract, hazy guy.  Off in the distance.  Someone whom you heard of but never saw.  Occasionally, he paid a visit to a friend of a friend, or a much older relative.  Once, a very painful once, he came for my daughter’s friend.  But that was as close as he ever came.

Last February, he showed up here for the first time.  “Your son only has a 50% chance of living until birth.”  Wait a minute.  We start counting our lifespan AT birth.  What do you mean?  It might be over before then?  Babies don’t die.  Great-grandparents die.  That’s the proper order.  Not the other way around.  But he retreated after a brief introduction. 

Then Death came by again in July when we dealt with heart failure.  And again and again with respiratory illnesses through the winter.  Once more when we tried to extubate following surgery and again after we came home on vent settings that weren’t quite enough.  He leaves his calling card in the corner of Aaron’s room.  A reminder that he’s always close.  He shows up quite frequently in the homes of my new friends.   The three little A’s:  Addison, Addylynn, and Abigail.  Nolan and Nalah who knocked me to my knees with their passings.  Little Jacinta here in the US, and Jacinta from Australia’s little Sebastian.  And Angel’s little Emalee is now an angel, too.  And so many, many more.  I don’t think I can come up with five adults in the past five years that I know have passed on, but all these precious ones who are so tiny have grown angel wings and left us.

But Death has also brought life into sharp focus.  We are all of us dying from the moment of our birth.  And none of us are guaranteed a certain number days.  Death gives me the push to run a foot race with Andrew, my 7 year old, which he won.  He reminds me that my teenagers won’t always be in the same house with me and available for chatting or being silly.  He gently encourages me to read one more story or have one more snuggle with Michael, age 4, and let the laundry go unfolded for just a little longer.   Because of Death’s presence, I spend more time just talking with my husband and chatting on the phone with my sisters.  I see my college daughter, Deborah, much more often than I used to and enjoy having Mary, 18, along for errands just so we can be together.  I laugh more freely and cry more easily.

Yes, Death has brought life to the forefront.  We don’t get one without the other.  Death is the only way out of this world, and I for one, don’t intend to stay here forever.  But I’m hoping, praying, that he stays away for a while.  A long, long while.  Because even though I know Aaron won’t be truly gone, he will have just graduated from this life earlier than the rest of us, I’m going to miss him.  


Death has come to make our acquaintance.  He has forced me to take a long look at what I really believe about the Plan of Salvation and my Savior’s role in my life.  He has taught me to really look to God and His Son for strength.   Death has taught me about life.