Too Two Toothy

Somebody is fussy today. Maybe it’s because he doesn’t feel well. Or maybe it’s because he is ready to go home. Or MAYBE it’s because his first two teeth are coming in!!!

No stinkin’ WAY.

This just seems wrong to me. Don’t you think a baby should spend an appropriate amount of time at home before teething? I realize you are going on 5 months old, but you still look, feel and act like a newborn. We haven’t even had a chance to take your “newborn” photos yet and it’s now looking like you will have two bottom teeth in them.

My vote is to leave those chompers right where they are for now. We won’t have any use for them for quite a while anyway….

But if you do decide to get on with the tooth cutting, I need to start teaching you how to smile. Cause baby teeth are cutest when they go with a “toothy grin”. Sissy was exactly 5 months when she learned to smile…I could just say “smile!” and she would.  I’ll need to give you a physical cue instead of verbal since you can’t hear.  But don’t let discourage you. She hadn’t had her ptosis surgery yet and couldn’t even see a smile. That makes it pretty difficult to understand the social aspect of it all.  You have decent control over your left eye, so that might give you the advantage on this one.

That would be par for the course…

Mother’s Day 2012

It was on this day last year that we found out I was pregnant with you.  I took the test not because I was expecting it to be positive, but because I figured Mother’s Day would be extra special if I saw those two lines. It was special.  And scary.  I always get the “Oh what have we done we can’t undo this!” feeling whenever I find out I am pregnant…but it fades into joy quickly enough. I shouldn’t have been surprised.  Audrey was our honeymoon baby.  With Liam we took the “let’s see what happens” approach to family planning and he was on his way within days (if not before). And you were the exact same way.

I was really hoping you would be home for Mother’s Day so we could all be together.  Because that didn’t happen, we brought home to you. For the first time in a week all five of us were in the same room.  Sissy napped, Liam watched Super Why, Daddy ate.  Sissy got sick, Liam took a bunch of potty breaks, Daddy ate.  Sissy smiled, Liam knocked over a few things, Daddy ate.  Our usual.  About 5:3o I sent everyone on their way back to the house and have enjoyed cuddling with you ever since. I couldn’t ask for anything more than spending the day with my man and three babies.  (But I wouldn’t say no to a good night’s sleep. {hint hint})

He’s Got Fluid

Here’s the latest my boy.

Your blood pressure fell quite a bit yesterday.  Even though it was high before and now is more in the normal range, it is concerning since your baseline BP is much higher.  That coupled with the bradycardic episodes yesterday compelled the doctors to order a 24 hr EKG.  Results pending.

Still on oxygen—1/4 a liter.  When we wean you down, you desat.

Your rash has spread over most of your trunk.

The biggest new development is that your stomach is distended.  It has been gradually growing, and at this point is quite large.  Size 1 diapers which had plenty of room to spare three days ago are now too tight over the little bowling ball that is your tummy—it even shines from your skin being stretched.  Abdominal X-ray showed nothing yesterday, so today we did an abdominal ultrasound, numerous labs, stool sample, and checked the placement of button.  Placement is good but the ultrasound showed there is a lot of extra fluid in abdomen—probably about 500ccs worth.  GI/liver was called for a consult and they have ordered their own set of labs to determine the cause.  Pretty soon they will begin treatment to slowly get this fluid off over the next 3-5 days.  Thankfully, you seem to be for the most part comfortable.

 

A discharge on Monday was promising.  Tuesday it was presumed.  Wednesday it was probable.  Today it was possible.  Tomorrow it is preposterous.  Even Monday it is provisional.  Seems a bit backwards to me.

Coming into the ER, I told Daddy this would be a long stay, thinking it was electrolytes.  But having our hopes raised for Monday and every day since has been a bit of a roller coaster.  The things that keep popping up are unbelievable.  I don’t know why I am shocked.  This is the way it always goes.  I guess I just don’t realize how many things can go wrong, and mistakenly think we have just about covered it all.  A friend asked how long you have been in the hospital vs home so I added it up: 12.5 weeks in, 4.5 weeks out.  Sheesh.  We were trending in the right direction though. The last stay at home had been the longest yet at 19 days.  Praying that we continue to trend in that direction, and the next time you come home, you stay for a good long while.  Like, forever.

We Wait

Yesterday you made great improvement. You weaned yourself off O2 by working the prongs of the cannula out of your nose. Every time I pushed them in, you popped them out. Eventually I gave up and the RT just turned it off. You went back on full feeds, tolerating them like a champ. Once your belly was full, your disposition was pleasant. Things were looking up.

This morning I come in ready to get the discharge ball rolling. We have a few hiccups, naturally. Your last dose of IV meds is needed at 1:00. The 48 hr culture is due back at 2:00. The doctor wants us to go home with oxygen actually in the car, so that needs to be delivered. And your button (which I have always found to be a trouble-maker) shows us just how bad to the bone it can be. We push meds in, and it pushes them back out like it ain’t no thang. Pedi surg is called to take a look at that naughty button. We wait.

A few hours later pedi surg comes and confirms what I’ve been saying all along–we’ve got a leaker. The first plan of attack is a new button, same size. I’m at lunch, otherwise I would tell them no way, try again. Coulda, shoulda, woulda. I get back from lunch, roll my eyes with the nurses and go with you downstairs to check placement in imaging. Placement is right but of course it still leaks. Back in your room, we wait.

All of a sudden you desat to the eighties. I watch, reposition, watch some more. When I notice your heart rate plummet and the coloring around your eyes change, I find the nurse in the hall. She watches, repositions, watches some more. What choice is there but to pull out the O2 and call the doctor? With the oxygen you come up to 100.

Our nurse checks your vitals. No temp, bp fine, lungs sound good, glucose 73. Not too shabby for being NPO a few hours. Your blanket was pulled back and at the same time we muttered, “A rash.” All along the left side of your body. Freaking grrrrr. Allergic reaction to contrast? Home is not out of the question–we are after all leaving with oxygen. We wait.

A couple hours later we decide to turn off oxygen again to see what happens. Within about 5 minutes you slowly drop back down to mid-eighties. Oxygen goes back on. We wait.

At 4:30 pedi surg makes an appearance. They plan to remove button, insert a Foley and let the stoma close a bit. Bad news: this will take 24 hrs. Good news: we can stay here or we can go home and return tomorrow. The choice is ours. I’ll confer with Daddy and let them know. But first I ask, “Do they make a 1.0? I just think the button is too long.” She checks for herself, agrees, and orders a 1.0 to try before we go the Foley route. We wait.

PA comes in next. We stay here tonight. The choice is not ours. The desat combined with brady (low heart rate) is too concerning. “Tomorrow” they say. We wait. We do not hold our breaths. You especially.

You Who

Children don’t let moms blog drunk. Or at least, the exhausted equivalent of drunk. Next time take the iPhone away from me.

I realize, on closer inspection of my last post, that I didn’t use a single pronoun. Are you wondering WHO has pneumonia? You. That’s who.

Just straight up bacterial pneumonia is what we are thinking. Strep, staph, or some other nasty booger along those lines. I felt confident coming to the ER that this would be another case of electrolytes out of whack. But all labs look normal other than WBC. Great news for us. If we can get off oxygen (nose cannula for now), kick the fever and tolerate full feeds, we can go home. That is at least two days out, but I’m hopeful this won’t be as long as our previous stays.

Seems like you aren’t quite as hardy as your sis. We’ve never taken her to the hospital for plain ol’ sickness. In the (not yet) three weeks since you have been home, you haven’t been many places. Childcare at church twice, story time at the library once, and that’s about it. You were either exposed to something the rest of the family wasn’t, or you are just super susceptible (try saying that just one time fast) to these sorts of things. Bumm. Er. Makes me nervous to take you places and that does not bode well for this mama. I’m getting antsy just thinking about going into lockdown mode. Shudder.

Your ptosis surgery is on May 18. Our prayer now is that you get this gunk completely out of your system ASAP–at least by….oh, let’s say this Thursday. Otherwise surgery will be rescheduled and I am beyond ready to get those eyes open. Lefty is doing amazing–that eye can get so big and really focus! But poor little Pancho is struggling to peek. We want him to see! “Pancho needs your prayers, it’s true. But save a few for Lefty too.” I digress.

Your fever is coming down and you are snoozing hard. So grateful for that. I, on the other hand, haven’t gotten any rest, just a second wind. Your room has finally quieted down enough for me to seriously entertain the idea of a nap. Of course now that I’ve said that something is guaranteed to start beeping….

Pneumonia

Oh Lukey. Short version is all I have energy for.

Went to ER last night at 1:00am for breathing problems. (So technically morning but I say night cause I never went to bed.) With oxygen, sats are 100% Without they dip as low as 60′s and hang in the 70′s. WBC 74 thou. Underarm temp normal, rectal temp 102.4. Chem 10 good. Abdominal X-ray clear, chest X-ray not. Bacterial pneumonia is the current diagnosis. (What tha????)

My eyes are literally crossing. More details later.

Medicated

Your first week home could be summed up in one word. MEDICATIONS.

There. Are. A. LOT.

Seventeen to be precise.  When we came home from the hospital, your schedule called for a med almost every hour of the day.  I don’t even know what to say about that, other than NO. But it’s not a matter of simply rearranging the schedule. Some are for emergency only, some are once a day, some multiple times.  Some are injections, some are tablets, most are oral.  There are a few that can’t be given together. A couple upset your tummy, and we don’t want those to be first or last of the day. And we want to avoid waking up to give meds at all costs.  Good thing your daddy is a whiz at Excel.   We contemplated, concentrated, and speculated.  We formulated, consolidated, and manipulated.  We reevaluated, debated, and accommodated. We vacillated between frustrated and exhilarated but remained dedicated.  We may have nearly hyperventilated, but it culminated in a schedule for you to be medicated. With nothing left to do (haha), we congratulated, celebrated, and appreciated.  I have not exaggerated or overstated that this was complicated. (Ok, that little game is terminated. [I hope you aren’t too irritated.])

A schedule had been created (I promise that one was unintentional) and now we only give you meds 10 times a day with a 7 hour break at night. Glory!  This snazzy spreadsheet that provides the schedule by time or by medication.  As we continue to adjust meds (this is a trial and error sort of thing–the one above is already outdated) we can change one sheet and it automatically corrects the other.

The next problem was getting all the scripts filled.  Before we were discharged late Monday, I called the pharmacy to make sure we could get our hands on all of them that evening.  No problem they said.  But when I arrived at nearly 8pm that night, two had been overlooked.  Two that dealt with your sodium level…you know, the little thing that sent us to the ER three weeks ago.  Both were not in stock and needed to be ordered.

Med 1) Tuesday the shipment never even left the warehouse in San Antonio—not our pharmacy’s fault but frustrating nonetheless.  Wednesday the pharmacist saw a discrepancy between the strength the doctor wrote for and the strength on the bottle. Thursday we confirmed that the doctor transposed the numbers and I finally picked up the medication.

Med 2) Tuesday I ordered a couple meds for Audrey which caused this one to be overlooked again. The pharmacist on the evening shift had never made it before and thought it best to save it for the Wednesday pharmacist.  Wednesday we discovered this med can only be ordered as an injection.  Called doctor.  Thursday heard back that we can order it as an injection, but give it orally, or in your case, by g-tube.  Ordered medication Thursday, received it Friday.

That entire week I could sense your electrolytes becoming unbalance as we waited.  But this week we have everything we need and we are getting into the routine.  It looks a little something like this…

One day's meds. Just kidding.

Our sophisticated storage system.

This is a week of the meds we are able to prepare in advance. Tablets, creams, drops, injections (even though given orally) excluded.

Happiness in a bucket.

It occured to Daddy and I to ask for the empty syringes at the hospital after each medication.  The nurses usually just throw them out…those little guys are plastic gold!   Seriously, I get a bit giddy when I pull out these buckets.  I wish we had all 12 weeks worth because these, believe it or not, will be whittled down to nothing after a few months of heavy use.  Still, its not worth going back to the hospital for more syringes.  For that reason I am delaying labs as long as possible so that your medications have a chance to kick in and balance everything out again.