Ch- ch- ch- changes …

It has been a wild and crazy couple of months for the ICU Family. Last I updated, James was having his third (!) eye surgery and his surgeon thought he had finally saved his right eye and we were chalking one up for the good guys.

Recovering from number 4.  These post-op pics are getting a little old...
Recovering from number 4. These post-op pics are getting a little old…

Well, he didn’t, there was no chalk for anyone, and J was back in the operating room on November 4th.   We are crossing fingers, legs, toes, and eyes (sorry J, not funny) that this last operation did the trick. If not, he’ll have to go back YET AGAIN for the placement of a shunt that will bypass his eye’s ordinary drainage system until he grows a little more and the surgery becomes more straightforward.

Have I mentioned how much congenital glaucoma makes us RAGE about the unfairness of it all? Because it does. In case you were wondering.

Of course, all of this has gotten significantly more complicated to juggle because I started back to work full time in September. I know what you’re thinking: you went back to work? Full time? What are you thinking?

Max was forced to do the dishes FOR me!  Also, for those who knew me in my college days, it appears a love for tank tops, underwear and pulled up socks is, surprisingly, genetic.
Max was forced to do the dishes FOR me! Also, for those who knew me in my college days, it appears a love for tank tops, underwear and pulled up socks is, surprisingly, genetic.

The fact of the matter is, I am just not a good stay at home mom.   I recognize and accept this about myself, and frankly wish I were – it would be so much easier for this gang. I mean, it all starts out well – I’m making elaborate homemade meals, keeping the house tidy, reading the Times and the New Yorker cover to cover when the kids sleep, baking cookies, you name it.

That lasts for about a week. Then things start to slip … invariably resulting in frozen pizzas, piles of random laundry and toys strewn throughout the house, spit up stained yoga pants and unwashed hair, and my greeting ICU Dad at the end of the day with a glare of great suspicion and resentment, accompanied by an accusatory “AND HOW WAS YOUR DAY, DEAR?”

By the end of my maternity leave with Max, ICU Dad was begging me to get back to the office.

I’m sure I don’t have to tell you: the intensity of staying home with J is like staying home with a regular kid, squared. By the time I would finish with his medical needs — feeding tube, medications, nebulizer treatments, oxygen, therapists, doctors ‘appointments – I had nothing left to give either of the boys. Zero.

Only big brother gets those grins.
Only big brother gets those grins.

Remember when I went radio silent in August? I was in a bad, bad place. I knew it was time to go back. There was always going to be a reason to stay home — I had to make the decision to go, and then help my family to deal with it.

So I’m a full time working mom with two kids, one with special needs. And we have a small workforce supporting us to make it happen: an amazing and unflappable nanny for James (now known as “P” for purposes of the blog), two awesome preschools for Max (where he’s learning to speak Mandarin!), night nurses, therapists, cleaning person … the list goes on. I am basically working to support our supporters, and those I don’t support directly I spend hours on the phone with insurance to get covered. But I don’t care. You can’t put a price on sanity, nor on the vast improvement in my relationships with the kids and ICU Dad.

It takes us about 60 minutes to get ready for the park by the time we get all of James' oxygen equipment into the stroller…but totally worth it.
It takes us about 60 minutes to get ready for the park by the time we get all of James’ oxygen equipment into the stroller…but totally worth it.

I’ve again been radio silent. But this time it’s because I’m joyously working full time at a job that it turns out I actually love, supporting all of my boys, buying a new home and selling our condo, taking the kids to the park, cooking big family dinners on Sundays and just generally learning to find the happiness and way forward in our new post-ICU life. J is still struggling to get off oxygen, and we are desperately trying to avoid giving him any one of the “regular” illnesses that fly around in the winter time that mean a day or two at home for you and me, but a life-threatening stay in PICU for J. This is our new normal, but we damn well refuse to let fear and uncertainty control our family.

So you’ll hopefully forgive the absence. I haven’t forgotten about this blog – it was my only tie to sanity and the outside world for many months, and I plan to keep it alive, even if my posts are fewer and farther between than before. If you want to keep reading, thank you. And if not … well, who needs you anyway?! Ain’t nobody got time for negativity in the ICU House.

We’re Home Already

Family Surgery Portrait # ... ugh, let's not count.
Family Surgery Portrait # … ugh, let’s not count.

Man, do eye surgeries take a while.  J went into the operating room at 9:15am, and they didn’t wheel him out until after 12:30pm.  All for one eye!

Despite the length, James did remarkably well.  Because he makes doctors very nervous, they sent him straight to PICU for recovery.  But just an hour later, he was sleeping peacefully and back to the same oxygen support he required going into the OR.  In PICU speak, he returned to his baseline and since beds are scarce there at the moment, we got evicted early enough to beat rush hour traffic home.

I must admit, while I get twitchy walking into that PICU, the number of nurses, doctors and staff stopping by to visit, offer hugs and exclaim over and over again how big J has gotten felt good.  (15 lbs 6 oz people!  We are approaching the “normal” growth curve!) No one wants to be in PICU, but at least when we have to be, we’re in a place that is safe and welcoming to J, and to us.

But the best news of the day is that his surgeon thinks the procedure worked.  Whatever vision may remain in his right eye, today’s surgery likely saved it.  Chalk one up for the good guys.

ICU Dad on the case.
ICU Dad on the case.
Snuggles.
Post-anaesthesia snuggles.

Radio Silence

Yeah, yeah, yeah.  I know.  It’s been a while.

Look, I hear you.  I was posting on the reg, and then suddenly nothing for more than a month.  If I was reading this blog, I would be pissed.

Here’s the deal: the last 6 weeks have pretty much sucked.  It is really easy to share uplifting, James-is-challenged-but-ultimately-prevails type stories.  They make me feel good to write, and they make you feel good to read…everybody wins!

But the fact of the matter, as difficult as it is to talk about (and for me to admit to myself), is that medical fragility and chronic illness is not some kind of “fight” that we “win”.  James is home, but he’s still a very sick baby.

We had almost a month and a half of calm after Blythedale, where James was off oxygen and seemed to really be making strides.  But three weeks ago he broke out in an alarming rash known as petechiae, resulting in a terrified drive to the ER where, after a very uncomfortable night of observation (and my first time sleeping in a hospital crib) we were sent home with antibiotics and the diagnosis of a rare type of urinary tract infection that was likely hospital-acquired.  If you’re paying attention, you’ll know this kept me awake many nights afterwards: since J doesn’t get fevers and hadn’t been in the hospital since July 22, he may have been suffering without us knowing for weeks before discovery.

This was followed by yet another panicked drive to the ER 3 days later when J presented me with a diaper full of what we thought was blood.  We were re-admitted for a night to the bone marrow transplant floor, since bleeding + petechiae can be early HLH symptoms.  (Spoiler alert: not HLH.  The “bloody” poop was actually red-colored poop which is a rare side effect of the antibiotics he was on for his UTI).  However, on this visit he also swabbed positive for rhinovirus — you know, the common cold to the rest of the world, but a serious illness to James that has landed him back on oxygen 24/7.

So … yeah.  J has been miserable, we’re not sleeping, and this week was Max’s first week back at preschool.  All my energy is directed at the kids, poor old neglected ICU Dad (when I have a minute) … and not here.  My bad.

Tomorrow morning J heads into his third (THIRD) eye surgery.  We are running out of options for his right eye, which has still not responded to the previous surgeries as his left eye did (another piece of delightful news from the past six weeks).  I’m heading off to get my sh*t together and put on my damn game face for tomorrow morning.  Didn’t I have some kind of bootstrap picture from earlier in the summer?

Meh, F that.  Ain’t nobody got time for amusing graphics right now.  I’ll post tomorrow when J comes out of the OR.  Assume a properly posed portrait to follow, as is our tradition.  Fingers crossed he gets to go home by tomorrow night…and that he’s not in too much pain.

Oh, my poor dumpling.  When will you catch a break?

My “Typical” Boy

Since he was very young, Max has had this endearing but monumentally awkward habit: he goes in for the group hug at every opportunity.

Hey there, little bro
Hey there, little bro

To be clear, while we are definitely a snuggly and cuddly type of family, the classic “group hug” was not exactly an ordinary occurrence in our household. So I really have no idea where he got this from. But boy, does he go for it with gusto.

Thanks to Max, I’ve now been involved in all kinds of group hugs: with ICU Dad (easy), Max’s grandparents (another easy one), our nanny (slightly strange, but okay), the dad of the little girl with whom Max shares said nanny (does a shoulder pat work, Max? No? A hug? right then), Max’s favorite preschool teacher (umm …), the super in our building  (I had to draw the line at that one)…

Despite the rather hilariously awkward situations I’ve found myself in thanks to this habit, I’m so, so thankful for it. Max is the most inclusive person I’ve ever met. In fact, when you tell him that there’s something to get excited about, his first reaction is “Let’s do it all together!! Mommy and Daddy and Uncle S and Auntie H and Neenee and Papa and S…” (we normally have to cut him off at that point or we’d never get anything done).

I wondered how Max would react when J came home. He had only ever known his little brother as an abstract concept, someone that Mommy and Daddy had to leave him to be with, and who he saw every few weeks in a hospital.

The day after J arrived, I was getting ready to take Max to camp, and strapped J into the baby carrier.

“Mommy, why you putting James in there?”

“Because, buddy, we can’t just leave him alone while I bring you to camp.”

“I want to go in the carrier, Mommy.  Let’s leave James at home.”

“Max, you haven’t been in the carrier in a year.  How about you walk right beside me and hold my hand, and then we can go all together.”

I had said the magic words.  “Okay, Mommy, good idea.  All together.”

Drive-by kisses
Drive-by kisses

That was it.  Now the “all together” list still starts with Mommy and Daddy, but James is a solid third.  Max accepted him into our family without question. He helps with J’s bath, he pats him when he cries, he kisses his hands and feet when he walks by his chair, he gives J his monster truck to play with… not sure how much James appreciates said monster truck being driven over his face, but we’re working on it.

Since becoming a “special needs” parent, I’ve heard many people refer to their non-special needs kid(s) as “typicals” or “neurotypicals”.  This grates on me to no end.  Max is the farthest thing from typical.  He’s special.  Extraordinary.  In fact, a statistics lesson: if your brother is one in a billion, then you, as his sibling, are also one in a billion.  At least.

The best coffee shop date a girl could ask for
The best coffee shop date a girl could ask for.

My love for Max, my responsibility and duty to him, did not change when J came roaring into this world.  If anything, I see Max in a whole new light after enduring J’s nightmare ordeal: having a healthy child is an absolute bloody incredible blessing that you should be thankful for every day of your life.  Every milestone Max hits, every day he sleepily crawls into our bed to snuggle in the morning, every hug, every “why?”, every race to the park down the sidewalk is something to be celebrated — I know, now, that these moments are as miraculous as they are ordinary.

Today we had a party for Max’s birthday.  I’ve been planning it for weeks; I wanted him to have a day “all together” with our family and friends that was just about him and his special place in our world.  No matter how much we tried to shield him from it all, and despite his nearly constantly sunny disposition, Max was affected by everything that happened this year.  How do I know?  When I asked him what kind of special cake he wanted for his party last month, he excitedly jumped up and down and yelled “a hospital ambulance cake, Mommy.”  Errr…we settled on a construction theme instead.

Max is our treasure, our sanity, our everything.  Happy birthday to my beautiful, miraculous, other-one-in-a-billion boy.

 

Finally, Something to Celebrate

This week will mark a full month home with James. (If you are pointing out in your head that he technically had to spend one night in PICU after his surgery last week … don’t be an a**hole).

This is what texts used to be like between ICU Dad and I in January and February:

photo 1

You see, at that point we really only knew James by his numbers: oxygen saturation (anything above 90 is acceptable), heart rate, respiration rate, blood pressure, ventilator settings. That continued for a long, long time. James’ numbers told us everything — if he was in pain (high heart rate or blood pressure), if he was starting to work too hard to breathe (respiratory rate), or if he was about to go into respiratory failure and need an emergency re-intubation (i.e. the day after he was extubated and sent to the bone marrow transplant floor, only to have his sats drop into the sixties and race back to PICU with the rapid response team to get the breathing tube back in.  That only happened once, but damn it was scary.)

Now? Our texts go something like this:

photo 2

Because I finally have a baby to care for at home, on top of a very energetic preschooler! I don’t have time for this sh*t.

It’s been a busy, stressful, exhausting and wonderful month at home.  I’ve shared some of it already, but we’ve had a lot going on in the background.

Recovering.  No complaining if you have seen this picture before ... I like it.
Recovering. No complaining if you have seen this picture before … I like it.

J is recovering very well from the surgeries last week.  There were a few very sad days when he was in a lot of pain and we were all crying, but we made it through them and he’s comfortable again.

Max decided he was ready to be potty trained right after J came home.  He was basically like “Guys, I know we’ve been busy the last 6 months, but this is really getting a little ridiculous.”  Okay, actually he was like “Mommy, I’ll just wear underwear to camp today.”  And I was like “Oh.  Okay, then (?)”  (As an aside, finally having a potty trained kid is the BEST).

We’ve started looking for a new house, because one month into this apartment with two children … NFW.  I know what you’re thinking: what kind of lunatic would want to attempt a move after the year we’ve had?  The answer:  these lunatics!

James has now been through all of his early intervention evaluations, and we’re waiting for the meeting with the EI program to determine the extent of services James will receive. The evaluations could be viewed as profoundly depressing.  But I accept James for whatever he may be, so I’m focusing on what he needs, not what he lacks. (I will continue to repeat that to myself until it’s true 100% of the time.)  I’ve started preparing a package to advocate for the maximum resources for James, and I’m definitely going to have my lawyer hat on that day.

As an aside, a tip for any readers who are the parents of complex kids themselves: J’s medical history is REALLY complicated. I got sick of explaining it to every Dr. Tom, Dick and Harry who sees him. So I made up a medical resume for him, with headings like “Hospitalizations”, “Surgeries”, “Diagnoses”, “Current Medications” etc. I update it every time there is a new development, and just keep a few printed out in my file for J. Pretty much everyone is shocked when I hand it to them, but it makes life so much easier for me (isn’t that the most important thing?) and James (oh yeah, also him).

Oh, and did I mention the most amazing one from just today?  James laughed for the first time. HE LAUGHED.

Obviously, I cried. But not nearly as hysterically as when he first smiled. J’s not the only one recovering after this month, I suppose.

He’s Okay

His lungs are still not perfect, so he had a little trouble getting his breathing back after the breathing tube came out … which means one more night in the PICU for observation.

Our usual pre-op family portrait.  The other families waiting give us major side eyes when they see us do this.  Yet another reason we NEVER wait in the family waiting room.
Our usual pre-op family portrait. The other families waiting give us major side eyes when they see us do this. Yet another reason we NEVER wait in the family waiting room.

When we wheeled off the elevator into our old 9th floor PICU stomping grounds, there were hugs all around with our favorite nurses and docs.  Surprisingly, ICU Dad and I both twitched when we heard the once very familiar sounds of the ventilator alarms.  Which made me happy — it’s nice that we’re not used to them any more.

Before this surgery, I pulled some ICU Mom sh*t like no other.  The general peds surgeon responsible for his case was being harassed by about 20 people throughout the hospital for weeks before this day.

My theory is this:  I don’t want to cause J any suffering or pain above what is absolutely necessary for his treatment.  So when we have to do a surgery, which we did today, we make sure EVERYTHING that needs to get done is done all at once.

The hernia surgery and jaw appliance removal would normally not be combined.  But J doesn’t need any extra intubations & time under general anesthetic, so I asked the surgeons talk to one another and figure it out.  And they did.

I mentioned that he was going in for surgery to his ophthalmologist at our follow up last week; he got added to James’ doctor list for today so that he could conduct a proper post-op exam of J’s eyes.

When the Broviac came out (wahoo!), the downside is we lost our only reliable access to James’ blood.  Now, every needle in that child will feel like a personal failure to me.  So last week, I emailed his HLH doctor and his immunologist and made sure that all necessary bloodwork was taken from the Broviac before it was removed (we haven’t officially seen the immunologist yet, but kids with Kabuki are known to have immune system issues and I correctly guessed that he would want blood for his initial assessment of J).

Hi Guys! I'm sleepy.  Where are w….oh, you have GOT to be kidding me.
Hi Guys! I’m sleepy. Where are w….oh, you have GOT to be kidding me.

This is what people mean when they say you have to advocate for your child, I suppose.  Anticipating needs as best you can based on doctors and PubMed and Google, acting like a quarterback for all of the specialists, and pestering until they listen and respond.

Luckily, J is at a hospital where the docs are completely receptive to my annoying nagging (ICU Dad, you could learn something…).  In fact, normally I get a pat on the back for asking questions and making these kinds of multi-specialist plans.  They understand that with a kid like James, there are about 20 doctors with some responsibility for him, but none who really see the big picture.  It’s my job to connect them all.

Today we checked about 5 things off of James’ list.  *Knock on wood* J should be done with surgeries until next year.

I totally just jinxed us by writing that.

Jinx double jinx.  That works, right?

Thank you for all the lovely messages from all over today.  We read and appreciated every single one.

Here we go again

James is going in for surgery tomorrow afternoon.  To remove the appliance in his jaw that was placed back in April to open his airway, to correct his inguinal hernia, and to remove his Broviac.

I will selfishly be overjoyed to have that damned Broviac out of him.  It’s a “permanent IV” that allows for painless blood draws and administration of IV medication.  In other words, no needles.  These were great things for a chronically ill child that was getting stuck with needles repeatedly in the PICU.

But in reality, it’s scary.  It’s an external line directly into his blood stream.  Which means you have to keep that bad boy crazy clean or your child can get a systemic infection.  And potentially be sent straight back to the PICU.

Errrryday I'm flushin'...
Errrryday I’m flushin’…

Every day, I flush the Broviac line with heparin and replace its external cap in a sterile procedure.  Every week, or any time it gets wet or James spits up on it or just becomes otherwise manky, I change the sterile dressing that covers the site.  These are tasks for nurses, normally.  So to take J home, I had to train and be certified on all of them.

It all seemed pretty straightforward when the nurses at the rehab hospital taught me.  Basic set of steps, respect the sterile field.  I got this sh*t.

However, in our apartment it’s not quite so simple.  A sterile dressing change goes something like this:

(1) Put on mask, ask Max to please play iPad in the other room for 2 minutes.
(2) Carefully open the sterile dressing change packet.  Tear the current dressing off of J’s little chest while he screams.  Curse the manufacturer that thinks Krazy Glue is an appropriate adhesive for a medical dressing attached to human skin.
(3) Shush J in a comforting way as he screams his head off, but DON’T TOUCH HIM BECAUSE YOU HAVE STERILE GLOVES ON.
(4) Remind Max he needs to stay in the other room for just a few more minutes and that you love him so much.  DON’T TOUCH HIM (see above).
(5)  Clean the site of the Broviac and the line itself for 90 Mississippis.  DON’T F*CKING TOUCH IT ANYWHERE ELSE OR YOUR BABY WILL DIE OF A TERRIBLE INFECTION.
(6)  Ask Max to please just stand a few more steps away if he absolutely needs to play iPad right beside you.  Also tell him you love him so much.
(7) Carefully place a sterile biopatch over the site, then wrap the line around it.  DON’T TOUCH HIS SKIN OR … see (3) and (5) above.
(8)  Tell James you love him so much and you’re so sorry for the 90th time.  DON’T TOUCH … okay, you get the point.
(9)  Pull the sterile dressing out of the package and peel off the backing.  Yell FUckDGE at the top of your lungs when you get it messed up and stuck to your gloves and itself because oh yeah Max is sitting right beside you watching a creepy adult woman demonstrate children’s toys on YouTube on the iPad (Seriously, what is up with those people?  If you are a full grown adult demonstrating a $3.99 Lightning McQueen pull back toy car on YouTube, I strongly encourage you to seek a new hobby.  Soon.  Before I call the police.)
(10)  Put another sterile dressing out of the package and damn well get it right this time.

James' Broviac.  With the Mom seal of approval.
James’ Broviac. With the Mom seal of approval.

(11)  Label the clean dressing with the date and “MOM” in all caps.  Because normally nurses put only their initials, but I am a badass mom and now part time nurse and I want anyone looking at that perfect dressing to know that James’ mom keeps her sterile field, and her sh*t, tight.
(12)  Rip off the sterile gloves and mask and grab James in time to flip him over before he spits up because he’s so distraught over the dressing change.  Tell him you love him and you’re so sorry for the 200th time.

Go ahead and repeat approximately 3x per week.

Yessiree, good bye and GOOD F*CKING RIDDANCE Broviac.  Thank you for saving James from all the needles.  But, you’re a bastard and I hate you and I can’t wait until you are out of J’s chest forever.

Also I love you my sweet J bug.  I’m so, so happy that you don’t have to go through the Broviac-related torture any longer.  We will be waiting for you in recovery, little man.

Please send love and prayers for him tomorrow if you have any to spare.