The past 48 hours

Someone asked how long that Manny has had this problem.  Truth is:  Parts of this he has had (in varying degrees) since we got him at 9 months of age.  (I have no clue about 0-8 months.) 

He's has troubles aspirating, retching, (and a whole long list of symptoms) since then.  There have been days and even weeks when all was "fine".  But those days and weeks have been few and far between. 

It's gotten progressively worse over time and it got REALLY bad in mid August.  He was in a lot of pain, screaming, retching, etc.  It's been unrelenting since then.  Life has been sooo difficult.  Hard to watch him choke and suffer. 

Sunday, the TPN "kicked in" because he woke up "himself"!  He truly was back to his old self.  He was laughing, playing, engaged.  It wasn't until then that I realized just how far down he'd slipped.  These 2 1/2 weeks in the hospital have been VERY hard on him and I didn't even realize just how difficult.  But to get him back fully now, the contrast was stark. 

When the docs walked in Sunday, he was playing with his letters.  He knows the name and sound of most every letter.  He also knows all his numbers 0-9 and can count up to 15 objects consistently.  He was showing off for them! 

I was THRILLED that the grumpy baby was replaced by my happy baby!

And now Monday starts the work of trying to get things arranged so we can get home.  (That will take a lot of work, by the way.)  We'll need so many new supplies, machines, nurses, meds, etc.  EVERYTHING has changed. 

Monday - 1:30 pm: Dan, Zoe and Kaley get here.  We hung out and had a fun time.  Manny even got the okey-dokey to go with us downstairs for lunch.  They disconnected the TPN for 30 minutes and we headed down.  It was so nice to feel "normal" again, if only for 30 minutes.  We were sitting at a table, all eating lunch, chatting, being a family (well, part of one).  Forgot to take a picture. 

4 pm:  Dr. Jolley came in with the results of the biopsy:  Basically normal.  (Nothing that would account for his strange problems he's had lately.)  So we will start changing him to what they call "cycling" his TPN (which means some times he will be on and sometimes off of the feeds vs the 24 hours a day.).  If that goes well for a day or two, we can go home.  Meanwhile, they're working to get our supplies, meds, nurses, etc. set up for when we get home. 

5 pm: Dan and Zoe head home.  Manny was not happy.  He's fine now but was not ready for them to leave.

It's nice to have Kaley back too.  She keeps me entertained and by having her here, I eat.  I think of her needs and then realize I should probably eat too so I do.  She is also a lot of fun and can help play with Manny so he's not so bored with me.  (I only have so many tricks ... and after almost 3 weeks, I'm about out of tricks.)

Monday night ... all is going well.  He basically sleeps through the night with a few "Help me Mamas" along the way (His way of asking for me to reposition him).  I cannot begin to tell you how nice it is to go to bed NOT terrified.  I am not afraid of him choking and retching and aspirating and desatting.  It's still hard to believe now just how bad it got and for how long and how we survived it!  And now to think that is over. 

We now begin new things to watch for and be concerned about and be vigilent about.  But those days are over and I couldn't be more thankful!  Like I've said before, we didn't come to this decision to stop feeding him (via tube) lightly. 

Tuesday, 9:30 am, the nutritionist Mackenzie came in.  She's been consulted on the case since the beginning.  She has been the one researching and tracking down these strange and unusual formulas.  But we hadn't met until today.  So it's nice to put a face with the name.  And she was happy to meet Manny too. 

10:30, Dr. Novak just left.  He had a million questions quick fire style.  He thinks we're on the right track too.  He wants to order another gall bladder ultrasound (I told him they did one in September but he wanted another one anyway).  And tomorrow, when they draw blood, he wants to add a pancreas test.  These have already been done so we're not expecting to have new results.  He basically said he felt that due to the circumstances, there is probably nothing else that can be done to keep him feeding via the digestive tract.  I told him that I was at peace with the decision.  That I knew the team did EVERYTHING and I trust the decision.  (Not that I like it, just that I'm at peace.)

12:30, Ultrasound of the gallbladder, pancreas, spleen, kidneys and bladder... not sure what they are looking for in all of those body parts.  And now they've ordered a urine sample.  Since he can't go on command, they will have to affix this sticky bag around his pee to collect it.  (He is not a fan.) 

12:45, Dr. Lawrence asked if I am comfortable with my pediatrician monitoring the TPN for Manny.  Yes, she is awesome.  So that means they're starting to get a few ducks in a row for life outside of here.  That's great news.  There's still a lot to coordinate - machines, medicines, feedings, nursing, supplies, etc.  And once I get home, I have to learn how to use the machines, set up the TPN, change the dressings, do the sterile technique for all of this, monitor his symptoms, etc.  EVERYTHING has changed!  Lots to learn. 

1:30, Discharge nurse was working things out with me and letting me know what is going on.  She feels that (unless something changes between now and then), we will get everything wrapped up tomorrow and then be discharged Thursday.  We have almost 3 hours home (we usually have to stop on the way to help Manny move around) and then several hours of training from the home health nurse Thursday afternoon. 

3pm, The rep for the home health nurse and the pharmacy that will deliver his feeds and supplies came by to chat and arrange a few things.  THIS is what they do so they specialize in it.  And there happens to be a pharmacy right in Tampa so if there was ever a problem with supplies and such, they are local (which is a huge plus).  And they are all over the country so if we ever travel, they can arrange to have supplies sent to where we travel. 

The rest of the afternoon was quiet.  Love having drama free days and nights!  And I'm soaking up the last few days of "calm" before the proverbial storm.  When we're discharged, we hit the ground running.  Load up the van with 3 weeks of stuff we've accumulated.  Drive 3 hours home.  Immediately get trained by the nurse on what to do and how to hook up and disconnect his feeds.  Try to get readjusted.  The kids all have Friday off so the boys should arrive some time Friday morning.  It's trying to get used to the new schedule.  Try to reconnect with the other 4 kids (the boys I haven't seen in almost 3 weeks!)  And try to keep Manny away from Zoe who is currently ill.  (Hacking up a lung apparently and too sick to go to school.) 

Whew!  Better get to bed and rest while I have the chance. :)