Day 4 - Continued

Day 4 - Continued

After I posted today's update, our wonderful nurse Alex came in as she was about to end her shift.  She hooked up Aidan's feed and stayed to talk with us about what was happening, since no doctor had bothered coming by to talk, even though we've requested it.  Is it really so unreasonable to want to know what we're doing?!  Anyway, Alex told me that a Resident would be up to talk eventually, but that if I wanted to talk with her, she'd be happy to share what she knew.  I appreciated it a lot, especially since no one ever found the time to come by.

Basically, Aidan would be taken off his feed at midnight.  He'd have a new IV placed and be put back on IV fluids for the GJ placement.  This is in prep for possibly having the GJ placed on Monday.  No one is yet sure that it can be done on Monday - it may not happen until Tuesday.  It just depends on when IR can fit him in and whether they agree to do it or not.  If it happens Monday, it sounds like we can maybe expect to go home Tuesday or Wednesday - depending on how he tolerates J feeds.  If it doesn't happen until Tuesday, then we're looking at Wednesday/Thursday, again depending on how he tolerates the J feeds.

It didn't exactly go as we were hoping.  Around 10, the IV team came in and spent half an hour working to place a new IV - only to blow the vein and find themselves unable to locate another one. So off they went to discuss their options.

The New Plan is this:

Aidan continues on full strength feeds until midnight.  He will be switched to Pedialyte until 3am, and then he'll be NPO until the doctors decide what they're going to do.  That will probably happen during rounds - which start at 8am. 

So I won't be here to actually hear what The New Plan is.  I have to get out of here as early as possible to get to work.  I absolutely hate leaving Aidan here but especially since I can't VPN in from CHOP, I need to get back to the office and have a really productive day.

Day 4 - Still Inpatient & Happy Easter!

Day 4 - Happy Easter!

The Bunny did not disappoint!  I'm told that he schlepped home late last night to bring back Aidan's Easter Basket so that we wouldn't have to miss out on the holiday.

I think because Aidan can't have candy, The Bunny feels a little bit guilty and may or may not get a bit more stuff than Aidan really needs.  But at least it's contained in one basket - Facebook would have me believe that Easter is reaching Christmas proportions nowadays!

Aidan got a new pillow pet (Deetz (Biscuit) has seen better days, and really, can you ever have enough pillow pets?), a stuffed bunny, a stuffed platypus, a stuffed peep, an Easter book, a CD of kids songs for the car, a Superman coloring book, Superman pens, a new toothbrush, toothpaste, and a slew of rubber ducks.  Also - the biggest hit EVER - Superman shoes!

Noo-Nah!

The shoes were enough to encourage him to get out of bed and run around for a couple of hours.  He's off his IV because it clotted up yesterday and no one could get it to flush, so our wonderful day (Alex - we love her!) just pulled it.  It was doing him no good anyway, and now he has his arm back!

Today, we are up to full strength Elecare Jr.  My fingers are crossed, I guess, although I don't even know what I'm hoping for.  I hate seeing him miserable and vomiting.  But I also hate seeing him tolerating the feeds like everything's fine, when I know that everything's not fine and hasn't been fine in months.  I'm afraid that he'll tolerate feeds okay here because he had such a long break from them, but by the time we get home he will be back to his pukey self and we will have accomplished nothing.  We are still waiting to hear whether or not IR will place the GJ tube.  I think the GJ is the right move, but Tom doesn't want to do it.  The doctors want to do it but aren't sure he's healthy enough for IR take him.  We'll see how it all shakes out, I guess.

In the meantime, we had a fairly quiet day and full strength feed were tolerated pretty well.  He's getting the less tangible symptoms - the reddish cheeks, the coughing, the tantrums immediately after feeds - but he's not vomiting.  So I guess they call this "good enough"?

Day 3 - Inpatient, Frustrated

Day 3 - Saturday.  We expected to be really just treading water, waiting for Aidan's hMPV to improve and very anxiously awaiting surgery on Monday.  Overnight was a little bit crappy since Aidan needed his IV checked every single hour.  But so far, we're really successful on the Pedialyte feeds.  Aidan's perked up a lot since he's started keeping down the Pedialyte.  Which means he's less willing to let the doctors and nurses do their jobs.  But also it means that we're able to take him off the IV fluids.  He's finally making very wet diapers - actually, he soaked through his diaper and sheets overnight.  I'm just happy to see him so hydrated!

In Hospital-Speak, I find Rounds pretty fascinating.  A huge collection of doctors, nurses, and whoever else seems to be milling about goes from doorway to doorway talking about children but never actually seeing, touching, or talking to them or their families.  Today, I decided to join in when Rounds made it to our room.  I guess I'm glad I did - here's what I found out:

- We are cancelling Monday's surgery.  They feel that the scopes are elective and he's too sick for it to be safe.  When I asked how long it would be before he's safe to be put under anesthesia, the doctor said that they liked to wait "at least a week or two." So no answers for a few more weeks on whether what we're feeding him is even safe for him.

- We may not be having the G to GJ conversion on Monday either.  Interventional Radiology can do the procedure without sedation, but only if the patient is "very cooperative."  Which this patient isn't. 


So now The Plan is out the window and I'm frustrated and I feel helpless.  I don't know what we're going to do.  I don't know how long we'll be here.  Maybe they'll send us home tomorrow.  Maybe they'll keep us longer and actually try to help us.  I really don't know.  I am angry that Aidan picked up this virus because now the doctors feel justified saying that everything is the virus's fault. 

Our nurse, Alex, let me have him weighed on the baby scale instead of the standing scale.  11.115kg.  Almost 24.5 pounds.  So I'm not as alarmed, although he certainly has lost weight - I just think the standing scale wasn't very accurate for him.  He's just not good about standing still on it yet.





Today's Feeds:

9am - Pedialyte - He did fantastic!
noon - 1/4 concentration Elecare (52.5 calories) - This one went well too.  He mostly slept through it.
4pm - 1/4 concentration Elecare (52.5 calories) - No vomiting, but his cheeks did start to redden during the feed.
7:15pm - 1/2 concentration Elecare (300 calories) - This was set to run from over like 10 hours, so we'll see, but it's been going for several hours and so far so good. 

I guess my fear is that he will do okay with his feeds for a little bit and we'll go home, but then he'll go right back to where he was and we'll be no closer to answers.  We've definitely had days where he tolerates daytime boluses and even the first few hours of night feeds, but by the middle of the night, everything's gone to hell and back again.  I want him to be better - not just "good enough to send home."

Tomorrow I guess we'll continue half strength Elecare and hopefully confirm the Tube Change.  Tomorrow is Easter, so I'll definitely take pictures of what The Bunny has left.