Glimmer of hope

Last night was tough ... lots of awakening for some strange reason.  And today he woke up very grumpy but as the day settled on, he became himself.  He's even not screaming as much when people come in. 

Which is good because he's screamed so much that he's hoarse.  He sounds so pitiful! 

For those who can't remember, here's an old picture showing his out of the hospital personality! And that's big brother Sam (9)

The glimmer of hope is that he tolerated the 1/4 feeds for 24 hours with no poops since 11am Sunday.  (As I type this it's 6pm Monday and still no poop so we're going too far the other way.)  BUT ... Dr. Cuenca changed the feeds to 1/2 for 8 hours (2-10pm), then 3/4 strength for 8 hours (10pm-6am) and then full strength for 8 hours (6am-2pm).  If he has no troubles ... we can go home tomorrow night or Wednesday morning. 

I entreated them to send us home tomorrow night if possible as Wednesday is my birthday and I'd so like to be home.  They're working on it. 

So he just has to have 1-2 poops/day max.  No fever.  No retching.  If so, we are cleared for home! 

Mom came by again with some goodies and an offer to watch him while I could run to the store and get whatever I wanted.  It was right after I got this news so I felt relieved.  I walked out of the hospital for the first time.  (I don't leave the room normally!)  In all the times I've been in the hospital with him, I've never left him for even 5 minutes so this was new.  But I knew he was in great hands with "Mimi" (Grandma). 

Just ran to walgreens and mcdonalds but it was FREEDOM! and oh so nice.  Grabbed a couple of comfort things and back I rushed.  But it was nice.  Thanks Mom! 

And while I was gone, they brought my chair back.  I haven't said ONEWORD about it.  But it just showed back up.  That was so nice ... I rocked him to sleep for his nap today in it and he slept very soundly. 

Now on to a couple of house keeping items from Commenters: 
"Mimi" who wrote to Linnea about Trisomy, I don't know a way for her to contact you.  I passed on the comment and she is very grateful and would like to be in touch.  So would you please write me privately at goredan at hotmail dot com. 

Also, Shirley commented about Reglan and the tongue thickening.  He is NOT on it.  Never has been.  But I did ask the docs what could be the cause of the things he's on.  Their best guess is the Flagyl has a metallic taste and he might just be experimenting with his tongue.  I don't think that's it but I'm just keeping an eye on it for now. 

Several people have asked about Dan and the Kids and how they're doing.  They are hanging in there.  Dan is being very domestic!  I just need to make sure not to "untrain" him when I get home! :)  And yes, they've all been exposed.  We're all very careful with universal precautions and such so I think we'll be OK but our guess is he had this while at home for those few days so we were all already exposed.  So far, everyone is OK with no symptoms.  Jacob would be our biggest concern of course with his already weakened kidneys.  It could land him in the hospital.  So we're praying. 

Thanks for the comments and support! 
Love to all, Beth and Manny

And many more

We had a GREAT night sleep.  Finally.  The docs stopped all the extra "nonsense" during the night and let us sleep.  They did have to come in at 3 and do his meds which woke him up.  And then at 5, they did his blood draw (used a finger ... much simpler).  But other than that, we slept. 

8am or so my Mother showed up with some food and drinks for us.  Dad dropped her off and ran to work and then will be back to get her later today so we get to spend the day together.  A few minutes later, Rich and Elsa showed up with Fruit, Tea and a Birthday singing Elmo balloon.  You remember them ... they always bring me fruit.  (They know me) and balloons (they know Manny).  

Manny's doing a weird "tongue" thing.  He never has his tongue hanging out.  And today it's like it's very big, fat and he wont put it in his mouth.  I have no clue what that's about.  Anyone?? 

Labs came back great except now Sodium is a bit low ... not horrible but low.

Dr. Cuenca (GI) came in and said since he's only had 1 diarrhea in the past 12 hours, we could start him on 1/4 formula to 3/4 pedialyte.  Try that today and see how that does.  If he tolerates, we will go to 1/2 strength tomorrow.  And just so you know ... we don't go home until he tolerates full feeds with no troubles.  So ... I think we're here a while longer. 

I also asked her about a probiotic since it hadn't been mentioned yet and she thought it a good idea and ordered it immediately.  They did Florastor which is a pretty common one and easy to get once we leave here too.  She said that one because it wouldn't interefere with the absorption of the antibiotic.

Dr. Prpich (Pulmonologist) came in and laughed because yesterday was the ONE day he didn't come see me, we never have questions since we're here for GI reasons not respiratory and of course ...we had questions for him.  So today he stopped by and I told him we didn't need him.  (He's a huge kidder so it's fun to play along.) 

As I type this, Mom has gone across the street to Boston Market.  Yum. 

The tech came in and noticed that Manny, his wheelchair, Mom and I were all huddled up in this tiny little corner of this HUGE room.  She unplugged us and now we're out in the open.  This picture is of him about to fall asleep on the couch.  I just had to take this picture because he looks so tiny in this huge bed.  (Oh, and note the tongue out too.) 

Manny woke up from this nap SCREAMING in pain.  Took a while to calm him down.  Mom bounced and held him.  Then it just stopped.

Eventually, Mom had to leave.  And as she did, my friend Elizabeth H came to visit.  We have shared some tough moments together.  And she has spent many a hour praying over our family.  With her was her Dad, Bob, and her mother Linda.  We are friends on facebook but never met.  She is a Manny fan too.  They were there to see Beth's Aunt Julie who is in the same hospital.  So pray for her quick, speedy recovery. 

A bit more about our balloon.  It says Happy Birthday because Wednesday is my birthday and Elmo is Manny's favorite.  So it's "our" balloon.  It's huge and it sings.  At the end of the song it says "and many more."  To which I say, "Amen ... may it be so, Lord."

Long Saturday

Saturday.  Happy to have Nurse Dana back again today.

Baby is having a lot of .. uh, er ... diaper changes let's say.  About 1 blow out an hour.  Poor little guy. 

Combing his hair ... gotta look good for all his fans

Dr. Cuenca (GI) jut came in at 3pm and said if his c-diff continues at the rate it's been going, we will discontinue pedialyte via jtube and go back to IV fluids only.  Try to give him stomach rest.  Problem with that is ... he has no IV in right now and they don't see any usable veins.  IV team is gone for the weekend.  AND it keeps us here "2-3 more days".  Yikes.  But if it is resolving, we can continue as is and check day by day. 

She knows we're tired of being here.  Before I could even ask, she said that hopefully this jtube will stay in place.  But if not, the next step would be to do an antiretching surgery.  I have been trying to research that and the only thing I can find is the nissen fundoplication (which he has already had).  But we'll cross that bridge only if we have to anyway.  Hoping this jtube stays in place this time.  (If not, I know the early signs now and the steps to do/avoid.)  But it was good to know they are already thinking next step if this doesn't work. 

Dana said the Pulmonologist is not coming to see us today and I was like "Oh no, I have a question for him."  Manny is going down for another chest xray and if that comes back bad, obviously we'll continue as is.  BUT if it comes back fine, I would love to see if we can avoid the 3 per night (every 3-4 hours) breathing treatments.  He didn't think it was pneumonia to begin with.  I would like to go back to the twice a day treatments only like we do at home.  (I think he'll agree with me.)  She is paging him to see if he'll write up those orders so when the results come in, we won't have to call him late evening. 

So as you can see, I'm trying to avoid some of that nonsense in the middle of the night. 

4 IV attempts and finally got one ... in his THUMB.  That's right.  That was the only vein they could find.

Xray showed improvement in the lungs so YES on holding all breathing treatments during the night. 

Funny thing is that Manny was so talkative the second we left the room.  And we ran into MORE people who knew us.  Ironically, we had to go to the ER to get the IV.  And more ironically, it was the SAME room (Peds 9) that we were in on Wednesday for 7 hours before we got fluids.  And even more strange was that they had the names of the docs, tech and nurse on this board with the date.  Wouldn't you know it still has the info from Wednesday on it.  It's like a time vault in there. 

And then the triage tech was there and was the one helping "hold" for the IV.  Then he drove us back up in the wheelchair.  When the nurse from up here said, "Thanks" he apparently said something about doing anything for us since we were his favorite family or something like that.  (For the record, the problems we experienced in the ER were LONG after his job was over.) 

Strange that we're getting "famous" around here. 

Before we came back to the room, friends Bob and Ann brought me drinks and dinner.  Aaaaahhh.  Like heaven.  They also stayed and prayed over Manny. 

Then the kids and Dan showed up.  Man are they WIRED.  But it sure perked the baby up to have visitors again. 

They are pretending to be apes picking bugs off each other!

The night tech and night nurse also remembered us from last May.  Apparently we made a lasting impression.  We hadn't seen any of them since then ... but they all remember us with fondness.  And there is a certain amount of respect too. 

The overnight Doc came in and we discussed our options.  He is still having diarrhea but it's slowing down now that he's on the pedialyte for 16 hours but he's still having some.  The GI wrote vague orders about when to stop the pedialyte and go on stomach rest and start the IV.  So the Doc and I decided that 1-2 more episodes and we will start the IV but hold off until then.  She was leaning towards doing it sooner until she discovered the IV was in the Thumb (something she's never heard of either).  We decided on this as a compromise. 

The gang just left and Manny's watching Elmo on TV.  He's certainly chilled out from last night.  Hoping he has a much better night than last night. 

Thanks for all the continued messages, support and prayers.  I can feel them. 

Today I just ran out of "fight".  I need renewed vigor and strength. 

Oh what a night

Saturday 12:45 am and the night nurse woke me up to tell me that something came back identifying one thing that is going on.  The summary ... on Wednesday while in the ER, he started a strange, very strange diarrhea.  I asked about a stool sample then as I thought he might have a GI related bug.  They said yes but then ended up not doing it for some reason.  Then it escaped my head (all the other things were more critical).  But I even mentioned it here and on Facebook that I thought he had a stomach bug. 

Mama is right.  He has "c-diff" which is a fungal infection of the gi tract, highly contagious and can be quite serious or it can be nothing but a lot of diaper changes. It can cause the stomach pains he's been complaining about.  Oh and hand sanitizers don't kill this.  Only good old fashioned scrubbing or bleach.  I read that it can live on surfaces up to 5 months!  So it's often picked up while in the hospital.  If you type in that word and google it, you'll see quite a bit about it.  Or here is a quick link ... http://www.gihealth.com/html/education/cdifficileRecurrent.html

After the people leave the room, Manny always calms right down.  But this time he did not.  I tried to comfort, hold, console, etc.  and he was ANGRY.  He kept telling *me* "all done" and just was pitching a huge fit (first I've experienced with him).  He just couldn't get it together.  It's just all too much for this precious little person.  I finally just laid him down and went to lay down on the bed that is right beside his crib. 

I couldn't comfort him so I could only pray for him.  Often I can "feel" what others are feeling when I pray for them.  As I did, my heart broke.  I could feel he was angry with me for letting them do all this stuff to him, for not stopping any of it.  I know he'll get over it.  But for now, all I could do is ask God to speak to Manny's spirit and to come and be his Comforter since I could not.  Exhausted and getting hoarse, he eventually stops crying and drifts to sleep. 

3:30 am ... his iv is not flushing.  It has air in it.  They try desperately to save it since he has basically no findable veins.  But it leaks.  She pulls the IV.  By this time it's 3:45 and she is supposed to draw labs at 5am anyway.  So she does it now instead. 

If the labs are bad, we're staying of course.  If they're good, there's some gray area now that they know what he has.  I have a feeling they are going to want to keep him again due to the high likelyhood of dehydration with this c-diff.  My guess is they'll want to see if they can get it better under control before he leaves. Also, sometimes feeds make it worse so they might try pedialyte in the jtube to see if he can tolerate that first, then go back to feeds.  If that's the case, we stay too. 

So my guess ... we'll be here another night.  So far, my Mama gut radar has been right on.  Hoping I'm wrong this time.  

4:45  Potassium is back ... normal.  Everything was in range except the blood sugar which is now too high.  (And he's not been on anything to bring that up in 36 hours or so.)  The doc said we could leave the IV out (since they couldn't find a vein anyway).  And we're not out of here.  They switched him to pedialyte in the jtube to see if that would help control the diarrhea.  (And since he's not tolerating feeds by their definition, we're here.)  They also stopped the antibiotics.  But they want to do a repeat chest xray to see what is going on now.  There was some dispute about what was in his lungs before ... and if it's pneumonia, they of course have to put him back on IV antibiotics. 

Guess what else?  He has stopped SCREAMING.  Maybe it was the IV this whole time?

And I just had to share.  Child Life brought him this crib mobile that has fish and water in it.  It's cool because he is just strong enough to push the button himself.  He likes to do that to go back to sleep after the people come in and disturb him.  Well the batteries are starting to go and I feel like I'm in sloooow motion or something.  Kaley (11) uses the word "Wonky" to describe things like this.  Can't wait until the batteries die completely. 

So I just have to say ... I came in Wednesday morning thinking this could be handled as an outpatient thing (what I was told).  Now here I am on Saturday with no clear escape plan.  I feel like my life is "wonky" right about now.  And the only solice is that here at the hospital, we have air conditioning. 

It's like a class reunion or something

Uneventful night (I like that).  Other than he would CRY the whole time someone was in the room.  He was not enjoying the company.

The morning tech was one we had last year and she remembered us.  Told us we had a nurse named Betsy.  But a little while later, in walked Dana.  She looked at me and then Manny and was surprised it was us!  You see, Dana was especially sweet to us last year. She was our nurse on "the day" that Manny got his diagnosis last May.  We felt a special bond since that day.  We kept in touch for a while but then I lost most of my contacts on my phone so no more contact. 

She didn't immediately know the name since she knew him under his preadoptive name.  Turns out, Betsy had too many kids so she randomly took a few and got us! What are the odds of that. 

9:15 we headed to the procedure to get the gjtube replaced.  It was scheduled for 10am.  All the techs, nurses and etc down there immediately recognized us and were coming to see our happy baby.  Only ... last time he was a happy baby.  This time he's a grump!

He started acting very strange.  Lethargic again.  I asked her to do his blood sugar.  145.  Hmmm.  That's not it.  So what is it?  Then I noticed his heart rate was in the mid 80's.  Which for MOST people would be great.  But his resting rate is usually about 120 and he was crying so... should have been higher.  I have no clue why it was doing this.  But eventually, it went back to range and he was acting normally again. 

Finally took him back at 11:25. 

I ran to the cafeteria and grabbed some lunch.  Chicken parmesan and broccoli and bread.  And for those who know me, yes, the broccoli was the best part of the meal! :)  Then I headed to the waiting room.  I sat in a corner where there is still some phone service but also where I could see down the hallway when the wheeled him out.  It was out of the way so I could be unnoticed too. 

But ... it's like a class reunion there.  Apparently, it's not just Manny who is memorable as they remember me even when he's not with me. 

First I saw Mary Beth ... a great tech from last week.  She's a grandma type who was there for the procedure when his stomach didn't empty and he was retching and having a hard time. 

Next was the Chaplain Molly.  She was like, "Weren't you just here?" 

And then wouldn't you know it ... Dr. Cartaya walked by.  He of course inquired about the situation and why he wasn't our doctor.  I told him the ER said his service wasn't available.  To which he said, "Uh, yes it is."  And he told me that it is ALWAYS available. 

They expeted the procedure to be about 20-30 minutes.  So imagine my stress level going up as it hit 1pm and he still wasn't out.  By 1:15 he was out and apparently he is just difficult.  He was mildly sedated so he wasn't traumatized (thankfully).  But no complications.  Then we headed up to recovery.  All still fine. 

Back to the room 2pm.  (Again, I was thrilled that I learned my lesson last time .. this time I had shoes, purse, food, drink, sweater.) 

Dana got him all hooked up to feeds. 

forgot to post this, from the waiting room at the ER

Doc came in and said that if his labs look good today and he tolerates feeds, he can go home tomorrow.  His white count has to be in range as well as his Co2 before we can go home. 

Lab tech eventually came ... and within an hour ... the lab called ... he has a critically low potassium level now. Dropped since yesterday. I KNEW there was something "off". And now his blood sugar is too high. Co2 within range and WBC coming down. This COULD delay our departure.  They are giving him a potassium drip (already started it) and will retest in the morning. 

I mentioned earlier to the Doc that his heart rate was "off" and this must have been it. 

Kids and Dan came to visit.  The poor baby was miserable basically the whole time they were here.  Seems like he's in a lot of pain but not sure where.  I started venting him (farrell bag) and gave him Tylenol.  Then he had a pretty good blow out diaper or two and he cheered up just in time for visiting hours to be over. 

They brought us his DVD player and his favorite ... Little Einstein videos.  He's happily watching that now. 

And on the way out, Dan told me that our a/c in the house just died and will be very expensive to repair. $1500.  Ugh.  It's been hitting over 80 degrees so that's not going to cut it.  We don't have the money though to fix it right now (waiting for tax return or for Dan to get a closing, whichever comes first.) So we're suddenly praying for cooler temps. 

One day at a time.  That's all I can get my head around.

Discrimination and Prejudice

As a blonde headed blue eyed person who is tall and semi-good looking and somewhat intelligent (yes, this is all relevant) ... I have rarely experienced discrimination and prejudice.  A few times but very minor. 

Then I had children of color.  And I started experiencing it.  Someday maybe I'll write examples of that. 

Then I had children with special needs.  And once again, experienced discrimination and prejudice. 

I thought I was semi-prepared. 

But nothing could have prepared me for the prejudice and discrimination I experience routinely with Manny.  It never occurred to me.  Maybe it was naive on my part ... but I truly wasn't prepared.

Like yesterday, I was feverishly attempting to get help for Manny in the ER.  He was passing out.  I couldn't wake him up or keep him awake (a kid who never naps).  He would open his eyes and then roll right back into his head.  I mentioned it to every person who walked in the room.

Looking back, he was severely dehydrated (which I knew) and had a close to coma level blood sugar.  And it is my own stupid fault and naivitity that created this situation.

How?  Because I ASSUMED they were listening to me.  I assumed that they heard me when I said this is not his level of activity or consciousness.  I assumed they were taking in that information and processing it.  NEVER occured to me that they would look at his disability and assume that was his baseline (despite what Mama was saying). 

They went with their experience, not what I was saying.  That is discrimination and prejudice.  And because I didn't realize that was going on, I didn't know to say it in a different way. 

I figured this out through the morning today as I processed the incredibly botched ER visit. 

But it was confirmed today by one of the docs.  In her defense, she is the one who gave him fluids and ordered tests and ultimately admitted him.  But she came in today and saw him sitting and talking and playing toys and was shocked.  (She said so.)  And then when I asked what happened, she said that she (and the others) assumed that the unconscious level was his baseline.  And no, they didn't even hear me. 

And that all honks me off to no end.  That I wasn't heard is frustrating enough. 

But the prejudice is sickening to me.  He got a lesser level of care due to a perceived disability ... by her own admission.  How the heck is THAT OK?  Even if that was his level, he deserves the best care (like fluids) but it's not so it makes it that much worse. 

I'm not sure what I will do with this information once I process it.  (Nothing towards the hospital or docs for the record.)  Someone commented on the blog that I should write a book ... I have actually thought about this.  A handbook for surviving the hospital visit with a complex special needs kid. I certainly don't have all the answers so it would be a collaborative book ... but it's a good idea.  I would have read it!

So back to my issue at hand ... I have never seem myself as an activist.  But this might push me into the world of "sanctity of life" activist.  Use my public speaking skills to promote.

In the meantime, on a Manny level, I have decided that if ever this is in question again, I will first be aware that prejudice is likely happening.  Secondly, I will show them a video of his typical behavior so they can SEE with their own eyes what his true baseline is and not just take my word for it.  (Afterall, I had one doc tell me months ago when he thought Manny was cognitively intact, "Every Mother thinks their child is present."  Yes, that Doc eventually apologized to me.)

And to you, if you're a person who interacts with special needs people, give them the benefit of the doubt.  And even more than you have been doing.

If you're an advocate for a special needs person, find a stronger voice.  Speak for them well (because people aren't listening).

And to my beautiful, very capable son Manny ... I am trying.  Thanks for being patient with me. 

Sloooow afternoon ... probably a good thing

Manny took a short nap and woke up screaming.  I'm having the hardest time calming him down.  I have no clue the problem.  Distraction works for a while but not long.  (Not like him.)  He's saying "Owie" but can't tell me where.  So very frustrating. 

Maybe he is just "over it".  He keeps telling me "All done" like he does the techs and nurses.  Maybe it means "All done at the hospital."  I am with him on that one!

POSSIBLE we could go home tomorrow.  IF he stabalizes his labs more. 

7:40 pm ... nothing has happened all afternoon. Guess I should consider that a blessing.  Means he's stable.  Other than the crying easily and SCREAMING if someone walks in the door, it's been quiet.  Hoping we get a good night sleep tonight. 

half heartedly saying "cheese"

LOUDLY Saying, "CHEEEEEESE"

From critical to stable (wed pm to thur 2pm)

10:45pm Wednesday ...  the nurse had given us a second bolus of liquids and now she came in with a bolus of dextrose to bring his sugar up.  (It's still way too low.)  The doc ordered it to go in over 30 minutes but this nurse called the ICU and they said an hour would be better or it could go too high. 

This nurse has just finished her Master's program she said so she is actually a nurse practitioner (nice to have).  The baby was starting to dip on his oxygen.  She felt it was appropriate to give him some oxygen just to make him comfortable.  Clearly it was a good idea. 

11pm the moved us across the hall.  The other room wasn't set up for a respiratory care and since his xray shows likely pneumonia then he is respiratory care.  As we were moving from one room to across the hall, they had to take him off oxygen.  He slept through the whole thing but his sats went down to 83 just that fast.  Hooked him back up and voila back up.  I'm so thankful not to be fighting for oxygen tonight!

The bolus of dextrose is almost done and they did his blood sugar.  149  MUCH better.  (The previous ones were 45, 63, 59 in that order).  He has so many holes in him! Poor baby.

Doc just came in at 11:23pm  and is relieved the sugar is up but is still quite concerned about him not peeing still.  Not one drop out of this kid. She said it looks like early pneumonia to her but could be something more serious.  They will repeat the labs in the morning.  CBC and BNP.  (Remember the BNP from last time?  That's a measure of his heart function ... it's high again.  14 which is 3 times normal.)

12:15am  blood sugar 109.  Which is perfect.

12:20 here to do the nasal wash and viral panel, test for MRSA (he's going to hate this).  And then start his iv antibiotics. 

trail of people all night long. 

5:40 they came in to draw labs.  Long story short ... lots more holes in him and no blood.  Lab or iv team will have to be back later to draw.

8am pulmonologist said he didn't think it was a true pneumonia on the xray and he sounds clear.  He feels it could be some aspirated gunk in his lungs but felt the 34,000 WBC couldn't be explained by this.  (So my guess is it's in his gut.) 

10:30 GI nurse practitioner said from their perspective, they clear him for the jtube procedure today.  Nothing fancy, just in and out.  She thinks it came out due to his retching tendencies.  But I think he retched because it was out of place.  We will hope this time sticks put but if not, we will end up here again and they will try something new.  They think it was just a fluke.  I do not.   Why? Because it was in for 4 days before we started having troubles. During that time, he wasn't retching.  In fact, he wasn't coughing even. 

From THEIR perspective they would send him home today after the procedure.  But of course he now has this respiratory thing and the infection.  So those have to be cleared before discharge.  Also, these next labs will tell a lot about when we can go home. 

And I cleared it up ... if I end up in the ER for dehydration again, I can "Demand" fluids based on his past history.  They have laboratory PROOF on record and that should be enough.  If we don't get it in a timely manner next time, I have them call the GI and THEY will demand it for us.  Also, just the way this hospital's schedule works, if a jtube comes out of place, it basically always means a night in the hospital.  She said if it comes out during the day we go to the office and they admit him from there.  If ever after hours again, they will send him immediately to the ER and admit him through there.  (Love having a plan.) 

10:35 lab was here ... got it on the first shot!  Amazing how some people just have the "touch" (and some don't).  As a Mama who has watched her baby get poked (12 times since 5 pm yesterday) ... you really want and need them to get it the first time.

And if today is like last time, I will have very little warning from the time I know about the procedure until we're on our way.  I learned from last time, put on my shoes now, grab my sweater, pack my purse with a snack and drink and bring my purse.  (All the things I wanted last time and didn't have with me.) 

This whole hospital thing is a learning curve and I like to learn it the first time so I don't have to repeat the same mistakes.  It's one of the ways I spend my days and the awake portions of the evening ... figuring out the system and process and analyzing what worked/didn't, making mental notes and adjusting it for the next time.  Like I keep a bag packed with the basic hospital necessary things.  There's a list of last minute things that have to be grabbed at the end.  I've got this bag packing down to an art. 

12:00 Dr. Lam (The Hospitalist in a different group than Dr. Cartaya from last week) was here with the overall report.  His labs are improving.  Blood sugar 89, Co2 is 17, wbc 20,000, bnp coming in range.  She says that if he keeps improving in his labs, we will go home in 1-2 days.  GREAT news. 

12:15 our tech Daisy brought me a guest meal tray.  I didn't mention it earlier but Daisy was one of our very sweet techs from last May when we were on this floor.  She was there during the days of diagnosis and prognosis.  During that time she noticed I never leave him. EVER.  And she started ordering me a guest tray.  Today, she came in and remembered us.  And wouldn't you know it, she ordered my tray.  To which I said, "You DO know me well!"  Such a small thing that means a lot. 

2pm ... nurse just came in and said we are scheduled to do his jtube replacement at 10am tomorrow.  They decided they want his WBC to come down better first and to see if this is pneumonia or not.  At least we have a plan now. 

We're Back! (In the hospital that is)

I will never be able to explain all that has happened in the past 24 hours but ... here's a summary version. 

As you know, last Wednesday (week ago today) Manny got the jtube.  All feeds go through there and so do meds.  Gtube is just to vent (suck stuff out ... up unitl yesterday it was only mucus and stomach acids).  Yesterday I vented formula ... LOTS of it.  Basically all we had put in.  So he was going to get dehydrated.  Called the GI and he said to switch to pedialyte and come in today.  I did. 

Got here about 10am and went to GI office and all the docs were at an off-site clinic so they sent us to the ER to get fluids started so we wouldn't have to wait so long and he wouldn't get dehydrated. 

10am-12noon waited to go back to the ER room.  I told them I was here because his jtube has become dislodged and he is dehydrated. 

on the way to xray in a little red wagon

They eventually ran the test and it proved I was right ... dislodged.  3pm or so we got that news.  Meanwhile, I cannot wake Manny up.  He's never a napper.  He never sleeps in the day and I can't wake him up.  I point this out to the Docs and nurses and they are not concerned. 

They are also not concerned that he hasn't peed in 25 hours by this time.  I pray and try to wait patiently. 

By 5pm the come in and say they are starting fluids.  Well FINALLY!  They thankfully got it on the first try but couldn't get blood (too dehydrated).  So they stick him on the foot ... nothing.  They give him 1 1/2 hours of fluids and he starts to perk up just a bit.  Then they stick his foot and milk out 3 viles and 1 bullet.  He never even whimpers.  NOTHING.  It was quite strange and eerie.   I keep trying to explain that this isn't normally him. 

on the xray table, always makes me think of a barbeque spit

A little while later, they come in and say that none of the blood worked, that it all coagulated.  And the lab person came to do it herself.  This time a finger stick.  While she is finishing up, a second person comes in and says that one of the labs from his earlier blood was at a critical level and they needed to retest. 

His blood sugar was 45.  (And that was taken 1 1/2 hours after getting fluids with dextrose in it). 

Then they noticed he was breathing weird (something I'd pointed out before).  Very fast and shallow. 

Then up to the room.  FINALLY people are starting to take notice.  His other labs are back and they are showing very scary numbers.  His Co2 Level is 14 (dangerously low).  And his white blood count is 34,000 (last week it was under 10,000).  So now we have everyone's attention.  He is considered in critical condition at this moment.  Oh, and as I typed that last sentence, he is starting to desat. 

The Doc just came in and said his chest xray is showing something ... likely a pneumonia but not looking typical.  So they'll do antibiotics. 

Now they are going to have to stabalize him again before they can fix the jtube problem.  I cannot believe we are in this situation AGAIN.  We haven't been home a week!  I don't know the plan for that. 

And as I look over at my precious baby, he is looking pretty darned sick.  He crashed FAST today. 

Finally, we're in a double room ... so far no other kid in the room.  Praying it stays that way.  I HATE double rooms!  The only good news is that if he does indeed have pneumonia they can't put another kid in here.  Oh, and since he has been in the hospital less than 30 days ago, they have to do a MRSA test and they can't put another kid in here until that comes back clear.  So for now, we're safe.  I know it's a small thing ... but it means a lot to me to not have to share while he is so critically ill. 

Oh ... wow that was fast ... by the time I finished typing that paragraph, God has already moved.  This room isn't set up for respiratory (ie not support for him if he crashes) so they are moving us to a private room! LOL Thank you Lord.

Going to go ahead and publish this now since people are wondering what is going on.  I'll start the running blog to continue after this. 

Thanks for all the support and prayers.  Please share this to as many prayer warriors as you know!  You have our permission to share this around as he needs all the prayers he can get. 

Love you all!  Thankful to have you along on this journey. 

Sometimes God Says, "No"

Reflecting back on my time in the hospital this time, it felt a lot different than last time. In May of 2010, the rug was pulled out from under me.  We knew the baby had a possible terminal diagnosis but truly didn't expect to hear that he had 1-6 months probably to live.  Also, at the time we had only had him 6 weeks and we were still getting to know him.

This time was different.  We have had him for 10 months.  We already know the presumed diagnosis.  But we also know that he is defying all odds.  He is progressing, not regressing.  He is confounding the wise.  He is making doctors use the word "Miracle" often.

So it hit me pretty hard the day we found out his stomach, liver, lungs, heart, bladder, kidneys, etc were all showing signs of organ failure.  It was a huge blow because he seemed like he was doing better.  Now this.  Seems like a huge setback.

We know God well enough to know He likes a big story sometimes.  And He loves to come in and rescue us at 11:59.  This time was no different.

As the doctors were trying to stabilize him, I wondered how God would pull this one off.

Obviously you know the rest of the story.  We got to bring him home Thursday.

But I got home and as I was unpacking the dirty laundry, trying to sort out the new feeding schedule and new meds that are round the clock.  I was also sorting my feelings and thoughts.  (Something I didn't dare let myself do while in the hospital.)

And it hit me.

I'm tired of being completely aware that he is in the palm of God's hands.  I mean I know we all are.  We all take every very breath because God allows it.  God knows the number of our days.  But most of us aren't acutely aware of it every moment of every day.

I am for Manny.

I am thankful He has chosen to let Manny stay with us a bit longer.  I am.

I am also exhausted knowing that at any minute, he could say, "It's time."  Dan and I talk about living in two possibilities at the same time all the time.  While we focus on and talk about and hope for LIFE.  We're also aware (and try to push it to the deep recesses of our minds) that there is still a death sentence over this child.

I guess the best way to describe it is ... Manny is on a tightrope way up high.   As he stays on the rope, God is in control, holding him steady.   But he could teeter and fall and God will catch him.  So either way, He's in God's hands.  So what's the problem?

I know many people who don't know our history or our level of faith might be thinking that we just need more faith.  To me, I think we have a LOT of faith ... afterall, we chose this baby on purpose, laid our faith on the line so to speak.  I know that live or die, Manny is in the palm of God's hands.  I know that no matter how long Manny gets to live on Earth, God is good, loving, faithful, etc.

So why not live in the hope that he will live?  We do ... most of the time.
What takes me out of that?
3 names ... Becky, Kelly and David.

Those are 3 children of pastors.  Godly, faithful families.  Becky was 3 when God said "No" to the prayers and petitions and the prophecies that she would live.   She had been sick most of her life.

Kelly was 18 when she God said "No" to letting her live on Earth.  Every healing evangelist you can think of prayed for that little girl since she was tiny.

And David 31 when He went home to the Lord.  He was a healthy soldier.  The whole church was praying prayers of protection.  His family said they never even CONSIDERED that he wouldn't come home alive.  (Today would have been his 34th birthday.)

So while I can live in "Yes" and "Amen" and "Just believe" most of the time.  And I truly do.  There are times ...

like what?  like when every organ was failing.  when he retches (again) after they thought it was fixed.  when he screams in pain.  when he coughs so hard his heart rate goes over 200 and can't come down.

at times like those ... I am acutely aware that sometimes God says "No."

And while some of you will want to "fix me"... the truth is ... I don't know this is a bad place to be.  I don't live here.  I don't dwell here.  It's just a place I visit.  And while I'm here, I do some growing.  I learn to lean and rely on God just a bit more.  I trade just a little more of 'me' for 'Him'. Faith is stretched.

And pretty soon I'm out of that place and back on to the business of living.  Of making each day count.  Of learning how to utilize the gifts God has given me.  

But never far from my conscious thought is the knowing that sometimes God says, "No."

Life is Hard

Great night sleep and hit the ground running.  The baby is on new formula (the old one was purchased through walmart but this one isn't so had to track it down).  He is also now on continuous feeds so we're going to need some adjustments in his equipment.  So I headed to the DME (Durable Medical Equipment) which is around the corner.  Gave them the new scripts. 

Then off to track down his insurance card.  Got a thing in the mail that said if we don't get the card in 7-10 days to call this number.  Call the number and it's not the right one.  grrrr.  Finally get the right person and they said they couldn't do anything about it until it had been 30 days.  Guess what today is?  29!  So call again Monday. 

Next it was off to get his new script.  The most important one was not available through our regular pharmacy.  They called around to all of their locations and nothing.  So they called the competitor who had it.  Problem is ... never been registered there so I had to go there and give all the info.  Of course they asked for the card which of course I don't have (see paragraph above).  Finally got it worked out. 

Off to the grocery store.  Dan had done a basic run the other day so I was just filling in the gaps.  I push Manny in the wheelchair with one hand and pull the cart with the other.  Shop.  Put the things out of the cart, put the things in the cart.  Go to parking lot. 

Put the groceries in and return the van.  Start the van and turn on the AC (it's HOT today) so it's not so hot for Manny.  Put the purse on the seat.  I maneuver him in (around his 2 new tubes out his newly sore belly).  Go to the back to put in the wheelchair.  And as I do this, I'm thinking, "Life is Hard!"  I'm lifting up this heavy baby, heavy groceries, heavy wheelchair ... and I'm going to be 42 in 2 weeks.  I muse over things I could do to make life easier but I then I actually say outloud, "Life is hard." 

I put the wheelchair in the trunk.  Close the door and I hear a weird noise. 

The van locked all the doors! 

Never did that before. 

My heart stops. 

My baby is in the locked car.  My cell is in my purse. 

I run inside and tell the manager what is going on (he'd seen Manny so he knew he was a handicapped baby).  The fire department is next door so he runs next door.  Next thing I know the fire truck is right there making a big scene.  In the meantime, I realize if I could use the Manager's phone, I could call my Mom.  She could drive to my house and pick up Dan's spare key and drive it to me.  Would take about 20 minutes.  So she started immediately doing that. 

The firemen said they had no slim jim.  If the car wasn't running with a/c on, they would have to break a window.  That's their policy.  (No problem.)  But since it was running, they had choices.  If the baby ever got distressed, they would break the window.  If we hit 30 minutes, they would break the window. 

I could see in the window and Manny was all strapped in his car seat, drinking milk (via jtube) and sitting nicely under the a/c with toys in his lap.  HE was fine.  When I get gas in the car, I peek in and wave at him.  I did that this time and I think he thought that's what was going on.  He was clueless. 

Meanwhile, I'm roasting in the hot sun on the black tar with 3 gruff firemen staring at me.  I was doing deep breathing.  Trying to control the blood pressure!  I tried to make casual conversation with them.  (Not a chatty bunch I must say.)  But they told me what their division was for.  (Heavy duty rescue mostly.)  I told them that apparently I didn't have enough stress in my life, that he had just been released from the hospital after 9 days just last night. 

They noticed me deep breathing and I said I was doing that so they wouldn't have to call the ambulance for me. LOL And the one said, "We can take your blood pressure."  To which I said, "Pleeeeease don't". 

At 20 minutes, Mom showed up with the key.  Popped open the door to look at Manny.  He was asleep!  That's how stressed he was. 

Firefighters left. 

Mom is the hero. 

Turns out, my locks are doing very weird things so I will have them looked at.  In addition, I will make up a spare key and put it in a magnetic box somewhere on the van.  NEVER doing that again! 

As I drove home to put away my now melting groceries, I was like, "I get it!" I was reminded that no matter how hard life is or seems, it can always get worse. 

But this pushed me over the edge.  I never cried once in the hospital.  Even when they were thinking this was multiple system organ failure.  Never while he was very unstable.  Not once.  But today, it was all just one too many things.  I let myself cry for the 4 minute trip home.

Dried my tears and went inside.  I carried my napping son in the house.  Less than a week ago, they weren't sure I'd be taking him home. 

Some of you think of me as very strong.  You have said to yourself , "I could never do that." at pieces of my life.  But the truth is ... from the woman who IS living my life ...

Sometimes LIFE IS HARD. 

But worth living. 

Attention home: get ready, here we come!

Big deep breath.  The pulmonologist came in and said he sounds fine.  Xray was not pneumonia, just something from the virus he must have had.  He is coughing a bit but it's loose and high.  So he cleared us for discharge. 




engrossed in the tv show

 The GI said if he tolerates feeds (which he is), we are cleared for discharge.

Now we just wait for Dr. Cartaya.  He already told me yesterday he would clear us without any new fever (which he hasn't had).  But he'll be the one to write up discharge papers.  And he usually rounds early afternoon. 

As I reflect back on this time in the hospital ... 9 days.  I am thankful for many things.  First, my baby gets to come home with me.  That's not always a 'given'.  He is eating and not retching.  His heart rate is stable (still high but stable).  We have a GI team who is completely on board with making him get better.  We were well cared for (after I fired the original GI that is).  We have shared our story to tons of people and many people are touched by the love of God through our testimony.

I am thankful he didn't lose any ground this time.  Sometimes he loses cognitive or physical ground during a stay.  But this time, he has made strides forward.  He is way more verbal now than when he came in.  (Maybe his pain was slowing down his mental processes.)  But he often says 2 word sentences.  He is interactive with others (like answering their questions) and not just with me.  He impresses people with his cognitive function!

my view during naptime

And finally ... I am thrilled that he is now (seemingly) pain free.  He slept the past 3 nights like he did before this all started.  He sleeps through the night (except for 1-3 times he asks to be rotated).  There were many, many weeks leading up to this where he was just plain miserable.  Now I have a team where if he is miserable again, they will see us and take care of it best they can and not ignore us.  So I'm hopeful we won't have any more of those episodes.  (Looking back, I realize we've had MANY MANY starting back in about June of last year.)  But hopefully no more.  And if we do, we won't be ignored. 

I have decided what to do about the ex GI.  I will tell our pediatrician the diagnosis and ask her to call him and tell him.  I want him to know.  Not expecting him to do anything about it.  Just want him to know he missed this and maybe by knowing that, he might not miss the next one.  This brings closure to me knowing he will be told.

Hopefully the next blog will be from home. 

Now on to the next adventure ... the piles of laundry, dishes, paperwork, etc that are certainly piling up at home.  

12pm Dr. Cartaya did his official "clearing him for discharge" thing.  I taught Manny to say "Home" today.  And he said, "Hi Doc."  And I said say, "Home" and he did on cue!  I told Dr. C that I did that in case he wasn't convinced, that it would pull his heart strings.  He said, "Not needed.  They already are."  I told him that if ever we are admitted again that we will call him on the way and avoid all that unnecessary stuff at the beginning.  He said he thought that was a great idea.  As he left, he again hugged me.  I told him, "I sing your praises everywhere and often."  And he said, "And I sing yours."  

Now we just wait for Dr. Cuenca (GI) to come in with the final discharge orders and scripts.  He is on a different formula, new meds and will need a few other new things with this new set up. 

Meanwhile, Sam got picked as "Terrific Kid" from his class for the month and the ceremony is today at 1pm.  Dan is going there, it takes about an hour, he will pick up the kids from school and then head over here to pick us up.  That should put him here about 3:15pm.  Hopefully that timing will work well with everyone. 

4pm Doc finally showed up.  5pm nurses were finally ready with discharge orders.  Ugh.  The boys and Zoe were getting restless so Dan took them outside to play.  Kaley stayed with me to entertain Manny.  I got him all dressed and ready to go.  And just stood in the doorway was a hint.  :)

He's patting his chest saying, "This is Manny"

5:30 finally in the car and ready to head home.  Swing by McDonalds for $1.99 happy meals and the sweet tea I've been craving! 

6:25 at the pharmacy near the house where they do compounding for the new scripts.  Have 3 (1 is most important).  Decided to go home and get settled and not wait for it. 

6:50 Home and unpacking.  Baby is giddy to be home!  Me?  Shocked at how nice the house looked! 

7:15 Pharmacy calls and don't have the most important Rx ... calling around.  Won't have until tomorrow and they won't have it, it will be at the competitor. 

Homework, pack lunches, get kids settled for bed. 

10pm Dan walks the baby around the block in the stroller since he's not been out in like 2 weeks.  (It was 57 when he left.)  And baby fell asleep in minutes. 

Put to bed ... and he slept through the night.  Our baby is back!  Seems to have the problem fixed.  Can't tell you how much of a relief that is. 

Now we hit the ground running. 

What an eventful day!

Since I have so much time to think these days, yesterday I spent some time thinking about what is GOOD about being in a hospital.  And the list is actually quite long. 

I mean I COULD focus on the couch bed, the interruped sleep every hour or so, the sometimes grumpy nurses or the fact that they forget it's their day but our night, or that between the stress/fact I'll be 42 in 2 weeks/hospital lighting ... that I scare myself to look in the morror. 

Here are some of the good things.

1) At home and the baby "freaks out" medically speaking, *I* have to make the judgment call about what to do, how to do it, when, how much, etc.  Like for the weeks leading up to it, my gut said something really wrong but how do I prove it, who do I ask, etc.  So I ask Dan about such things and he basically says, "Good luck with that."  (Not those words).  But he says he doesn't have enough information to make that call.  The problem is ... NEITHER DO I.  And yet I still have to make the call.  Am I doing enough? All that I can?

So yesterday when he was having a horrible retching episode, I got up and did my usual thing with him.  The nurse was in the room and I asked her is there a different/better way to be doing what I'm doing?  I figure ... utilize my resources while there.  She said no.  I felt reassured that I was doing all I could. 

2) Housekeeping comes by once a day and empties the trash, does a basic clean of the room/bathroom, mops the floor, etc.  I so need that service at home.

3) The tech comes in and does the vitals which have been very important as he keeps running fever and if we can catch it before it goes too high, it stays pretty low.  Plus, a tech is the person who helped bathe him yesterday.  Now that's a helpful service. 

4) Daily, all the doctors come by to see us.  Normally I'd be driving all over town to get to these various appointments just to sit and wait for them.  But instead .. I sit in my room, he's all comfy and they come to ME.  Every day they monitor him and adjust daily what he needs.  Things moved along in his case very rapidly because we were here and not outpatient. 

etc. 

Now about our night.  We slept.  Uneventful (pretty much) and the coolest part?  He didn't desat even one time.  The alarm never rang even one time.  He teetered a few times but mostly slept around 96%!!  That's amazing.

The morning was quite uneventful and were told the surgery was postponed.until tomorrow.  Then at
10:45, they came for him and said NOW.  I was wearing my pink fuzzy socks and pink slippers.  Told we would be gone about an hour and off we went. 

It wasn't until I was down there that I realized that i hadn't eaten and didnt have money.  We were in a part of the hospital that had no cell access so no way to let anyone know.  Very frustrating. 

By 11:30 the message came to us that the person in line before us was having troubles with sedation and they would be at least another 2 hours.  (And then if they got the person back or not, they would likely be "spent".) So they called for a new anesthesia team.  Said they would be there by 12:30.  By 12:15, Manny fell asleep so I was able to sneak away and at least let Dan know what was happening by a landline phone.

Taking a nap before the procedure (Looks like he has already HAD sedation! LOL)

Team came in at 12:45 but the Doctor was a general guy, not a peds guy so he had a second person with him who is peds but not a doctor.  (I just prayed, knowing he was in God's hands.)   

1:05 he was taken back and I was led to the waiting room.  No cell service there either but I knew just down the hallway was the main hospital entrance and surely I could get some there.  So I ran out there and did a whole bunch of texts, posts to FB, calls to people, etc.  and thought they all went through ... but no.  Later I found they all failed. 

2pm he was in recovery and they said he did great, no troubles. But I am SOOOO glad we went with sedation!  It should have been a 5 minute or so procedure which turned out to be 45 minutes.  Can you imagine how terrified he would have been?  Ugh.  God protected him from that.  HE knew!

In recovery, his tongue kept slipping back and obstructing his airway so they had him at the most ridiculous angles to keep it right. 

2:45 back to the room.  I still hadn't had anything to eat or drink all day.  But by now, he was SUPER flushed.  VERY bright red like he had a huge fever.  He felt warm too but temp showed barely.  Heart was in 190's so something was stressing him out.  Finally gave him tylenol and started IV fluids again. 

Dr. Cartaya came to check on him and he told me what the whole deal had been earlier in the day.  The xray from last night showed "likely pneumonia" in his lungs and they were freaked out.  Dr. C was fine.  They argued and that's why the surgery was "off" until it was NOW! 

GI came by and told me that if all goes well with feeding, she will clear him for discharge tomorrow!  Cartaya will discharge him unless this develops into full pneumonia.  So we're hoping to go home tomorrow! 

During all that time, my friends Bob and Ann Long came by with the kids.  They brought their homework and we had snacks.  Then they brought us pizza and we had a little pizza party and movie!  The baby was so peaceful, acting like everything was back to normal.

After they left at 7:15, he got cranky. 

Now about the procedure itself.  They went in through his gtube hole and put a wire around down through to the next part of his intestines then inserted the new tube.  The first one was 14 this one was 16 so a bit bigger.

MOST times, they put all the food in the Jtube and meds in the Gtube and they vent with the Gtube.  But the doctor was VERY specific that she wanted even his meds to go into the Jtube.  This must be highly unusual since they nurses kept asking for clarification.  She insisted that at the level of gastroparesis that he had, the meds would just sit there and could cause major troubles.  (That means: Because his stomach has stopped emptying, even meds wouldn't go out.)  Even the night nurse was in quite shock as they ALWAYS put meds in the gtube.  So that told me something.

This is "before". This is his gtube where all goes in and out. 

This is the "after" picture.  The white one is going in the Jtube with formula, the other one is coming out of his Gtube with stomach contents (which today include blood due to the procedure)

Surgery rescheduled

I got to realizing ... I have been telling a lot of the facts, figures and data of what is going on.  People are starting to ask questions about the procedures and why and what's the big deal.  So here's an attempt at that.

Manny cannot eat by mouth because things go down his lungs and not down to his stomach.  So if you do a gtube it bypasses the airway and no way for it to go down into the lungs.  What's the big deal?  If it's saliva, it can be reabsorbed into the body (assuming it doesn't get infected, etc.) and too much can cause pneumonia.  But if it's food, it can be lethal.  So nothing per oral.  NPO. 

Recently, he has been having troubles and we know that PART of the story is that his stomach has completely stopped working.  Food just sits there.  NEVER empties.  That's dangerous.  So they will do a procedure where they go in and reroute the tubing.  It will no longer go into the stomach, it will go to the jejunum (intestines). It should help him stop retching and having pain. 

They are working under the theory that all the other problems he's having is due to the stress on the body.  They hope it will make all the other things fall back in line.  

I think I should sell his masterpieces ... Manny originals.

And how do I FEEL about this?  I'm not liking it at all.  It's quite frustating in fact.  Why?  Because we had hoped that Manny was getting BETTER.  That he was getting stronger and able to eat by mouth some day.  We hope to see him eat real food.  

But this?  This is a huge step in the wrong direction.  

And it's hard to take.  

Worst thing in the world? No.  But it's just not the direction we were hoping for.   

This week we were reminded in a powerful way that we were indeed dealing with a very special needs baby.  Because the other working theory is that his white matter (that is basically all gone) has completely stopped working and all systems are shutting down one by one.  He looked like he was having multiple organ system failure. 

So rather than talking about my feelings or thoughts, I'm simply sharing the data. 

OK more data. 

4:30 GI walked by my room with the door open.  She had a banana in her mouth and quickly said that they have decided to hold off on the surgery.  She wanted him reassessed and a few more tests run.  They are going to have to put him under because they're going from a certain size tube to a bigger one and that will hurt.  They dont' want it to over stress his already partly damaged (but recovering) heart.  So ... the surgeon voted on waiting.  She even mentioned that she wants Cartaya to run a head CT to see if he has sinusitis since he is so congested, keeps running a fever, etc.  That's not my opinion but Cartaya will sort it all out. 

Either way, I consider it an answer to prayer.  I asked for HIM to make the call about sedation or not and the timing.  He said no to today.  So I feel at peace with the decision ... even if it means us being here a day longer. 

How about that cutie blast from the past pic for those who are just getting to know sweet Manny baby

6:20  Cartaya just left and again feels he is "all clear" for surgery.  So likely tomorrow? But who really knows around here.  Things go very, very slowly around here and then WHAMO ... fast. 

9pm, we were taken down to xray for a chest and sinus xray.  Wish I could have taken my camera in because they had him strapped down and I was like, "You do know he can't move, Right?"  Just precautions.  So I told him it was going to be a picture and those straps were there to squeeeeeze him.  So sure enough, he didn't even cry.  He just layed there (before the straps) and as she put them on, I said, "Squeeeeze" with each one and he repeated.  Had the tech cracking up at him.  Then he laid there very still as he said "Cheese".  

On the way back, I was talking with the tech and she said where she was from which led to why she was here and she said, "I came with my mother 15 years ago and she died a few nights ago."  No way!  THIS is the tech that I heard wailing the other night as we were waiting for the nurse (he was desatting bad).  God gave me the chance to speak into her life tonight.  To say a few words which I hope might bring her comfort.  How crazy is that?  She doesn't know that I even knew. 

Meanwhile, I'm also continuing to get to know a respiratory therapist who is very nice.  A 60 something Black lady.  She said she is blessed to have met us.  (And then tonight one tried to hock her wares on us as were her captive audience ... where else can we go? Weird.  Glad she's the night one ... I'll be asleep all the rest of the times she comes in.

Manny's watching a Little Einstein's DVD ... hope he sleeps soon so I can head to bed too.  Because who knows what tomorrow brings!

Tuesday ... so far ... standing by

Monday night into Tuesday was "weird".  It started off fine.  He'd had a nap at the usual time so at his regular bedtime (about 8), I rocked him.

Oh ... parenthetically, I got a rocker yesterday!  It was impossible to hold him on this slippery couch with no arm or neck support. 

Anyway .. He fell asleep immediately and easily.  He started to desat about 9pm and so I moved him to his bed where his oxygen will reach him.  About 2 minutes later, the Respiratory Therapist came in.  I told her he was just barely asleep.  But apparently she felt like playing.  She dropped something so she turned on the light to find it.  She talked very playfully with him.  She seemed like she was trying to wake him up.  As I stood there rubbing his head, whispering ... it's OK you can go back to sleep. 

But she won.  He was up.  Now it's 9:30 and he's WIDE AWAKE.  That's OK because they said that any minute we'd be going down for a chest xray.  So I put him in a little chair and put on a baby movie.  Eventually, I was getting tired so I laid down on the couch beside him.  Fell asleep.  By 11:30, they still hadn't come.  He was asleep in his chair.  So I moved him to his bed and I crawled in bed too.  Half asleep, half awake knowing they'd come any minute. 

Uh ... they never came. 

But the good news is he was fairly drama free last night.  I was a bit concerned about the oxygen ... but he only went down a few times, the alarm would sound, he would wake up and then the numbers would go up.  Makes for a pretty tiring night.  But eventually he stabalized and there were no alarms until around 7am.

The other great news is that his foot IV is still hanging in there.  We were worried because about 1 hour after it was in, it was looking very red and puffy.  We just decided to keep a look on it.  And it stabalized.  The IV nurse told me this was a very thready vein, and since it's on the foot (even though he has very limited movement in his leg) it's more likely to infiltrate.  Also, he was very overhydrated so that leans towards it too.  But this morning, it looks the same as last night. 

left foot has IV with gauze to protect his skin, right is the bands, pulse ox and gauze to protect his skin

8am the Pulmonologist came in.  We discussed the overall picture with him. They follow him monthly anyway and it made me feel very comfortable that they deal with the complex kids like him all the time.  They are the best pulmonary team around we're told.  He was happy with how he was maintaining.  Nothing really to discuss.  I had a few small questions for him ... things I was wondering about and he cleared them up for me.  There's a team of 2 docs ... one is very quick and matter of fact (the one that's been coming) and this one who is laid back and you can ask questions of so I'd been holding my questions until he was the one making rounds.  Manny is due for his monthly RSV shots (scheduled for Thursday) so they will just do it here.  One less appointment for me!

With his fever, his heart is spiking pretty good this morning. Alarms every few minutes (and they upped the tolerance for the alarm to sound!)  And his mucus must be extra thick this morning as he keeps desatting.  Then he'll cough pretty good and it goes right back up.  He might need oxygen support soon if this keeps up.  And he woke up retching this morning.  So we're not sure the trigger.  I personally wonder if he is swallowing some of the mucus and it irritates his tummy.  And the rest that he doesn't swallow goes to his lungs (he aspirates).  It can be absorbed by the body but it still can caus problems.  So thankful to be here where he has instant access to the right meds. It's preventing him from going down faster. 

On the agenda today?  To see if he is still stable enough (with all the new things in the night) to do the surgery AND to see if the tubing is in.  If yes to both, they will schedule the procedure for Wed or Thur.  NORMALLY, this is a no big deal outpatient procedure.  There are no new cuts on the outside of his body.  Just basically the button will look different.  And then of course the inside they go down the throat and reroute the tubing to bypass the stomach.  BUT ... due to his other current conditions on top of his already weakened body, they are being very careful.  (I like that.) 

Not liking our nurse today.  Most are great.  She is  ... uh ... not.  Orders say the nurse is to add the milk, start and stop the formula, flush, etc.  They are being very specific about when and how it is done.  She knows that.  She turned off the formula and then an hour later, she's supposed to turn it back on.  Well ... my brain is mush and I'm on "hospital time" where it's a time warp.  40 minutes late she came to check and then fussed at me for not starting it or not alerting her it was late.  Uh ... hon, that's not my job. 

She has a nurse student following her around.  I think she's just trying to look tough.  A funny thing is she told the student nurse "Any time you walk into a room, you MUST fill the fluids and reset to 2 hours. No matter what."  I noticed that this time when she was fussing at me about the milk, she forgot to reset the fluids.  (And it had like 20 minutes left on it.) Normally, I would say something to one of the other nurses but not her.  Sure enough, the bell sounded. 

20 minutes and several pages later (not from me but from people in my room such as housekeeping and the tech) a different nurse had to cover for her (my favorite nurse from yesterday actually). Oh, and on the way out this nice nurse said, "Did you eat yet?"  to which I responded, "You DO know me well.  Thanks for the reminder." 

1pm the tech helped me give Manny a bath ... and he needed it! He smells so much better now. And since he has been fever free for 4 hours now, he got ... ... PANTS.  Sure they're purple.  But he is happy to have pjs on again. 

2pm, the nurse from interventional radiology said they have an opening, they have the tubing so they could do his procedure today at 5pm!  She only wanted to do it though if no anesthesia.  She said it's not painful, just feels weird.  And they often do it that way.  (Seems scary to me but what do I know?)

I started praying.  Lord, I don't know if they should do it today or not.  I don't know if he needs sedation or not.  Speak to them. 

5 minutes later, the GI doc came in and said the plan was to go today.  Great.  And no sedation.  THEN .. she rethought about it and said since he is changing sizes (from a 14 to 16) that it WOULD hurt and that he needed to be sedated or it could over stress his heart. 

3pm I'm sitting here waiting for the final decision.