We Made The Wall!

We made “The Wall” at the rehab hospital – or at least Cathy and Nicholas did.

This picture was taken during what could be described as a tense moment for Mom (as the picture might indicate):


I can’t tell the story like Cathy can, so I’ll let her do it.
Cathy here.  Much to my dismay, Sam wanted to post this picture so I have no choice but to set the record straight and explain why I look so tense, distressed and and just plain PO’d.  The day is May 20th and I have just come from my 6 week OB/GYN follow up appointment.  Besides being blue because I did not have my baby with me to take to this appointment, being treated like a hand puppet by the Dr. along with the added humilation of being asked how all my “equipment” is working these days, I can assure you I was in a just dandy mood when I arrived at the Rehab hospital.  Lucky for me, I arrived just in time for Nicholas’ 11 a.m. bottle feeding.

Now before I go any further, let me describe the setting I had unwittingly stumbled upon.  Normally “the boy” is in his cozy, quiet room (and I do stress the word quiet), but lucky for me that day as the nurses had decided to set up camp for him in the open play area.  Now I’m sure you’re all thinking what’s the big deal.  Well, my friends, that particular day is the weekly sing along circle time shindig day.  Before I could make a run for the border, I was thrown into a rocking chair, a bottle thrust into my hand along w/Nicholas and cheered on by the therapist to FEED “the boy.”  As I tried to focus on the therapist’s instructions, which were competing with the sing along jamboree session going on just six feet away, out of no where a camera crazed worker snapped some pictures (yes, THE PICTURES) of the boy and me.  Not exactly a Kodak moment, but I was defenseless against her as she so stealthly swept upon us without warning.  At the same time and while still recovering from this excitement, “the circle time ringleader”  too cheerfully asked if I would like to participate in sing along time with the rest of the group.  My expression yelled “Hell No”, while my mouth was not quite in sync replied, “Well, of course I will!”  The next 15 fun filled minutes involved the ring leader waving scarves, jingling bells, and singing to all of us.  Nicholas was even asked what little farm animal he would like to sing about – My flat reply, ” a pig because he sounds like one”  and so the song went – “Nicholas and the little piggies go OINK, OINK, OINK, …”   I can assure you my friends I was in a Twilight Zone moment from which there was no escape.  Nicholas seemed to dig the overstimulation while mama on the other hand was sweating like a boy scout at Michael Jackson’s Neverland Ranch.

So my friends, you now understand the look of distress on my face.  I had seen hell, but fortunately lived to tell the tale….and the the little piggies go Oink, Oink, Oink!

NG is No More!

A big day on the calendar today – the NG tube came out late this afternoon, so Nicholas is now on all bottle feeds.  They’ve added additional feeds through the night (which is when the last of the continuous feeding was being done), and the hope is that he can take some additional volumes later in the evening so he’ll sleep through the night.  He’s gained some weight, too – up to 8 1/2 pounds, which is a pretty good gain from 2 1/2 weeks ago when he weighed in at just over 7 pounds.  He’s also outgrown his first outfit, another good indication he’s growing.  That’s what it’s all about going forward, just growing up – enough to where we can get the trach tube out of him.

He was a little fussy this evening, fighting a little bit of sleep and a little bit of gas.  Good thing he keeps his food down pretty well; our nurse Danita was looking right at him as he let a really big burp fly, and then said “good thing that one wasn’t loaded”.  She would have been wearing it otherwise.

We’ve got another swallow study scheduled for this Friday, to see if he’s still got any aspiration issues.  The last time they did one, there were a few things stacked against him that may have affected his success somewhat.  He’d not been eating much at all from the bottle, the NG was still in and there were a few other things going on.  This time, we’re thinking he’s going to do a little bit better.

We’re also meeting with the equipment provider on Wednesday so we can get acquainted with the boy’s new accessories.  Not that any baby travels light, but this is going to be almost laughable.  As best as I can tell right now, we’re prepared for portable suction, respiratory gear to heat and humidify his breathing air, heart/respiration/oxygenation monitor, ambu bag and probably a variety of other doodads we don’t know about yet.  Tune in tomorrow for that one.

Rumor has it we may be looking at a discharge sometime next week – we’re keeping our fingers crossed.

The Boy is Eating Well

Nicholas is doing his part to get himself home without the NG tube.  They bumped up his feeding again:

  • He’s now at 65cc per feed.
  • He’s got a 6th feed at 11 PM.
  • His continuous feeds are only going overnight – from midnight to 5 AM (I think)

They want to get him to 70cc at each feeding (almost there), so he’s really doing very well.

He’s also been on a pretty decent schedule, which we’re hoping continues when he gets home.  We keep hearing he does pretty well during the night, and he’s getting better at just entertaining himself and looking around during the day.  He gets moved into a common playroom, so he can get some visual stimulation (his room is pretty far from stimulating).  It’s also a little easier for the nursing staff to get to him.  It’s amazing what a different boy he is now versus a two weeks ago.  Between being able to bottle feed (and get that “full” feeling) and being narcotic-free for two and a half weeks, he’s much quieter, much more content, and really a pretty good little guy.

We have found there are two things that do make him pretty mean – gas pains and dirty diapers.  He really, really doesn’t like either of them.  That rice cereal is pretty potent stuff – the boy’s burps and farts make Dad proud, but the nuclear poop we can do without.  This stuff might even make Oscar flinch – remember, this was the dog that introduced himself to Nicholas by shoving his nose straight into the bottom of his diaper.

I also wanted to thank everyone who’s been leaving notes on the site – they’ve been a lot of fun for us to read.  And to “our favorite PICU nurses” who left a note – you’ve got a deal.  Visiting will be just fine; not that we don’t appreciate your skills, as you have no idea how much we appreciate them, but we’d rather make it social call.  Don’t think you’ve heard the last from us.  By the way, tell “Preggo” we expect to see a picture when it happens.

Also – we’ve posted some new pictures – be sure to check the photo links.

Getting Better

Wow – two entries in one day.  But today was a good day, so we don’t mind doing it.

A couple of good things happened:

  • They increased his bottle feeding volume again to 50cc 5x daily (he was at 40cc, and they bumped him to 5x just yesterday).
  • They’re starting to decrease his continuous feeding through the NG tube.

These are hopefully a few steps closer to losing the NG tube (which he managed to pull out – again – last night).

Cathy also got checked off on doing a one-person trach tube change this evening, and it went pretty well.  It’s among our various “requirements” before he can leave the hospital that we are able to successfully complete.  The next change is mine, and that should put us pretty close to being checked off completely.  Again, another step toward getting the boy home.

Yes, I call him the boy.  It’s a good thing he’s cute, one of his few saving graces right now.

Slowly But Surely

There was some progress for Nicholas this week – they’ve increased his bottle intake, in terms of both volume and frequency, and they’ve started to reduce the amount of food he’s getting from the NG tube.  He’s also gaining some weight.  Good strides, just not as fast as we would like.  But we keep telling each other “his schedule”, so that helps us get through the days.  The days are usually pretty long for us anymore – for me at least, I try to get some work done during the day and head to rehab in the late afternoon, putting me home anywhere between 9:30 and midnight.  Cathy usually goes there in the mid-to-late morning, and we come home at the same time.  We’re ready to be done with the current routine and get him home.

The stroller ride earlier this week was interesting, at least as it was reported to me. Apparently, the boy was not too keen on being blinded by the sunlight and was just generally fussy through most of it, but by the end was handling it pretty well.  It was also an experience to see just how much baggage is required when he travels – and it’s a lot. Portable suction, ambu bag, extra trach collars, suction catheters and probably a few other things that I’m forgetting.  Good thing we drive trucks.

Rehab Update

Not much change, other than the boy is picking up a few new names:

  • Drama King (“King” for short)
  • Needy
  • Clingy
  • Spoiled Rotten

I think they’re trying to tell us that he really likes to be held, and he’s not afraid to voice his opinion on the topic.  Other than that, he’s doing pretty well.  Looks like we’ll be there for a while yet, probably another couple of weeks.  While we’re disappointed in the duration, the reasoning behind it makes it a little easier to digest.  They want to work on getting him off of the NG tube and feeding only from the bottle – which we’re all in favor of.  So that’s our next big hurdle to clear, so we’re working whatever they tell us to work on that may help in that regard.

Cathy’s taking the stroller with her tomorrow (at the suggestion of the staff), so it looks like mom and the boy will get a little bit of outside time – which will be a nice treat for both of them.

Still at Rehab, but making progress

We’re still at the rehab hospital, but making progress.  Nicholas is starting to develop a routine, which is a pretty good thing in my opinion.  He gets cranky at about 4:30 PM, and that lasts until about 6:30 or 7:00.  Once he levels off, he’s a pretty happy guy.  He’s been going down for the evening between 8:00 and 9:00, and the nurses have been telling us he sleeps pretty well.  We’ve been going home at night, so that we can try to get some rest.  Some nights are better than others, but it still beats trying to stay at the rehab.  It’s not really feasible to stay there anyway.

Mom and Dad have made some progress too – we did our first two-person trach change on Friday evening.  To be honest, it was a lot scarier thinking about it than actually doing it.  It ended up being not that big of a deal.  I took the old one out, Cathy put the new one in, and it took all of about 15 seconds to do it.  The hardest part is getting the velcro collar fastened behind his neck, rather than changing the tube.  We’ve also been working on our other “check-off” items (CPR, suctioning, medications, etc), and that is going pretty well.

This week continues our work on his swallow (and other various exercises).  It’s frustrating as hell not being able to feed him as much as he wants through the bottle, but the thought of having him go back to the PICU with aspiration pneumonia (which would be the result of letting him chug his meals) helps keep that frustration in check.  That would be starting over, and I am not very anxious to do that.  So until he’s ready, he gets 4 bottle feeds a day, and the rest of his nutrition is going through the continuous feed/NG tube.  He is gaining some weight (finally) – he had the beginnings of chubby cheeks, which is actually a first.

So we continue the daily grind, with the daily hope that we are one step closer to being home.

Nicholas Update – 5/20

Hello all –

Things are progressing along, albeit at a very gradual pace.  We’re still at the rehab hospital, working on a few things that we need to get him home.  Nicholas is actually progressing pretty nicely, all things considered.  Our first week at rehab offered a few challenges, in addition to getting used to new surroundings.  He was really edgy and irritable the first 3-4 days there, which looks like it was attributable to detoxing from all of the narcotic sedatives he had while in the PICU.  That appears to have now left his system, and he’s a bit easier to deal with now.

We did our second swallow study Thursday afternoon.  It was originally scheduled for next Monday, but his bottle feeds were going well enough in the doctor’s opinion to see if we could increase his bottle feeding a little sooner than planned.  While it wasn’t a rousing success, it did show some pretty good improvement from last week – enough to increase his bottle feed volume.  They’re calling him a silent aspirator – meaning there’s still a little bit of weakness in his throat (the pharynx, to be more precise) that causes his formula to kind of stick and back up into his windpipe every now and again.  The silent part is that when he does this, there are no visible signs that it’s happening by either looking at  him or looking at the monitors to which he’s attached.  That’s why the do the studies.  While it’s still a little bit of a problem, it’s no showstopper.  Nothing to get too worried about, and we can manage it by thickening his formula and pacing his eating.  He’s still got the NG tube to make up the difference for now, but we’re hoping that he continues to make progress so that can come out.

Our first trach change will probably sometime Friday (they need to be changed every week), which is probably the one thing we really haven’t done for ourselves yet.  We’re getting pretty good at dealing with equipment, suctioning him when he needs it, administering medications and doing the daily care & maintenance of his trach tube.  It’s not that difficult, just scary as hell the first time you do it.  It’s now pretty much second nature to both of us, we’re getting better.

We’re still looking at another week or so before they’ll cut us loose.  While all of this is wearing on us a little bit (many of you have pointed out the times when I send these updates), we are seeing progress.  Things are moving forward.  Not quickly, but at least forward – which we’ll take any day over the “wait and see” days that usually preceded a big setback of some sort we had in the PICU.  Unfortunately, our measuring stick is based on when we go home, which tends to make us focus on what’s not happening versus the progress we’ve made (and we really have made a lot of progress).  We’re a little tired and strung out, but we’re holding up ok.  Working on trying to sleep, but neither one of us is haveing tremendous success in that department.  We’re ready to be done with all of this stuff and be home, and we’ll get there – but on Nicholas’ schedule.  As someone pointed out to me, “typical Bridegroom kid, doing things on his own agenda”.  We have no idea where he gets that strong will and determination from…

We know you’re all out there, and trust me – all of those offers for help have not been forgotten.  Many of you may be regretting your offers here shortly, especially the food-related ones.  We’ll let you know when we’re ready.  Like I’ve said before, it’s immensely comforting to us knowing we’ve got that big safety net of friends and family to fall back on when we need it.  And we will.

Feel free to e-mail.  Like I said before – we do read all of them (which is very theraputic for both of us).  I’ve asked a friend of mine to help me assemble kind of a “diary” web site for all of this stuff, so in the future you won’t have to rely on these reports – you can go to the site.  It’s actually going to serve another purpose – it’ll give Cathy and I a place to put some of this information, so we can bundle it up and give it to the boy someday.  Once it’s up, I’ll send the link.

As always, our thanks to everyone for their thoughts,prayers and support.  More news in a few days.

Nicholas Update – 5/15

Hello all –

Things are progressing along – actually at a quicker clip than we were anticipating.  Good steps, but they require some adjustment.

The first trach tube change did happen on Friday, along with the swallow study (both a few days earlier than we thought).  The change went well, and the swallow study went pretty well.  Still a few swallowing issues they’re keeping an eye on at this point, but nothing that indicates that he’s going to have major swallowing issues going forward (as is the case with many other TEF patients).  We have started to bottle feed him again on a limited basis, so we’re heading down a good path that will hopefully liberate him from his NJ tube shortly.

Based on Friday’s results, they sprung us unexpectedly from the PICU late Friday afternoon and transferred us to a Pediatric Rehabilitation Center.  This is a good thing, since we’re no longer in the ICU, and it’s the next step to getting home.  The disappointing part is that we’ll be at the rehab center for probably two weeks before they’ll let us bring the boy home.  We’ve got a lot of learning to do – tracheostomy changes and maintenance, CPR, breathing treatments, meds – and learning how to use the new equipment we’ll be getting.  It’s pretty overwhelming right now, but we’re starting to digest things a little better.  The expectation they’ve given us is a couple of weeks – we hope it’s shorter, but that’s what were working with at the moment.  Everything is subject to change at a moments notice (as we keep finding out) so we’ll see how it goes.

NIcholas is doing pretty well – progressing as well as we could expect at this point.  This will be a big week (or two) for us, as we’ll see all of the therapists and doctors a little more (as opposed to on the weekend).  And lots of learning for us.  With that in mind, and considering our new surroundings, we are asking that people not drop in for surprise visits.  Please don’t take this the wrong way, but the facility where we’re at now is simply not conducive to visitors.  The room gets pretty cramped with Cathy, me, Nicholas and a nurse.  It’s also a very hands-on facility for the parents, so we’re actually pretty busy when we’re there anyway.  There will be opportunities to visit when we get home and get settled – it gives us all something to look forward to down the road.  In the mean time, email is probably your best bet.  Like I said before – we do read all of them (which is very theraputic for both of us), but we may not respond right away.

As always, our thanks to everyone for their thoughts,prayers and support.  More news in a few days.

Nicholas Update – 5/12

Hello all –

We’re finally taking some steps forward (for a change) .  They took Nicholas off the ventilator Tuesday at 4:00PM (about 18 hours sooner than we expected), and he’s doing great.  He’s on a very small bit of oxygen (21% – room air by PICU standards), which is no big deal.  The oxygen line he’s got now is more for warming and humidity than anything else, since his normal warming/humidifying mechanisms are bypassed right now.  He’s no longer on any intravenous medications (those stopped yesterday), so the only tube in him right now is the NJ tube for feeding.

There’s a good possibility that they will do the first trach tube change on Friday (a few days earlier than we thought).  A few days after that, we will do a swallow study to make sure that he’s able to swallow well (so he doesn’t aspirate into his lungs – again) and to double check the repair to his esophagus.  Once we get past that, we’ll start to bottle feed him again.

Not sure when we’ll be home yet.  Once we leave the PICU, we’ll either go to a regular floor in the hospital or to pediatric rehab.  The rehab is a definite stop on this journey, as this is where Cathy and I (and a few select others) will learn what we need to maintain his airway.  Cathy’s already getting a short course in the hospital; the nurses helped her suction out his trach tube yesterday afternoon, which she did with no problems.

He’s breathing much, much easier, his color is great, and he’s acting a little more like himself.  It’s nice to see his face again (which was covered with tape), and his expressions – he did his little “piranah” movement the other night toward the pacifier, something that he’s always done.  It was at that point that I realized that everything is going to be ok.  It’s just going to take a little bit of time.

As always, our thanks to everyone for their thoughts,prayers and support.  I don’t have that “reference page” built just yet (sorry – been busy), but I will.  More news in a day or two.