Sunday, November 23, 2014

Our "Second Home"

We've been back in our "second home" since Friday morning - the Janeway.  Since Jake's discharge after having RSV his oxygen saturations have been consistently still lower than normal, and that in itself had us watching him closely.  Then on Friday morning he started coughing, runny nose, and feeling rattly in his chest so I called cardiology and they suggested he come to Emerge.  After spending the afternoon in Emerge Jake was admitted because they expected him to become progressively worse over the course of the day/night.  And he did. We avoided oxygen assistance until Saturday afternoon - but then his sats were low and he was breathing fast so we decided to put on the low flow oxygen prongs.  Jake has managed to avoid an IV this time around (knock on wood!) so that's been a little break for him.  Now it's Sunday morning and we're still here.  I'm expecting it will be Monday or Tuesday before we get to take him home.  It's all up to Jake - whenever he recovers enough to not need the oxygen for a consistent period of time then we'll be discharged.

The unfortunate news from this illness is that Jake has developed asthma as a result of his bout with RSV.  That's the reason why his oxygen levels and breathing patterns have not returned to his norm of high 80s/low 90s.  So, we add to his daily routine 2 puffers.  One for daily use, and one for when he is really struggling.  In my reading on the topic I came across a study that showed that in children under the age of 2 who have RSV and need oxygen assistance during that virus, 50% will develop asthma as a result.  This is particularly true for children who have chronic illness of the lung or heart.

So far the puffer has been a torture method for Jake.  He has to be physically restrained and holds his breath for as long as he can when the mask has been placed on his face.  It's awful.  I'm really hoping he will adjust to it, and soon.  Right now it would be impossible for one person to administer the ventolin by themselves, because of how hard he fights.

Here's a snapshot of Jake just after waking this morning, he had a little to drink and a few nibbles of breakfast.

Yesterday I was able to step out of the hospital for a couple of hours with Georgia to celebrate the Little Ladies Night Out at the Temple with her.  She was princess Georgia and treated as royalty.  It did my heart so good, and my belly too - real food!  It was a blessing.  I love being able to focus on Georgia, especially at times like these when Jake can easily monopolize all of our attention.

I was thinking last night of how well we have adjusted to our life with Jake.  These hospital visits don't get under our skin the way they used to.  I've become very comfortable with the equipment and with my knowledge of Jake that I often direct the nurses or doctors in what he may need.  And even stranger, the nurses and doctors will listen to me!  If Jake gets tangled up in the oxygen tubes or the saturation monitor wires I'll unhook them, untangle him and then reconnect.  No need to bother the nurses with that! If his IV line is hurting his vein, or it's about to collapse I'm the one who sees it and brings it to his nurse's attention. Flash back to Jake's first months at SickKids though - I wouldn't touch anything without asking a nurse first, and would question myself if they asked me what I thought Jake needed.  It's been a full 360 spin of understanding and knowledge for me and Jon in this daunting medical world.  But we know our son.  We may not have all the technical knowledge, but we know Jake.  That's what makes the difference.  I'm thanking God for this development.  It was a hard road achieving it, but we have arrived.  This is our life, and even in this moment of sitting with my son on a hospital bed while he watches his third movie of the day while coughing and breathing quickly - it's good.  I wouldn't trade it for anything.  I'm thankful and blessed in the midst of it all.  The song that always plays through my mind during Jake's hospitalizations is Praise You in This Storm.  I have shared it several times before on this blog, but one more time won't hurt.

Though my heart is torn.  I will praise God in this storm.

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