Drew’s New Port

Well, it’s taken me until just now to 1) mentally recover from the stress that was during Drew’s surgery and 2) have enough time to step away from the boys to document our experience.  Our two days spent before, during and after Drew’s surgery has been, in a word, stressful.  Supporting your nearly-eight-year-old-child through any kind of surgery is stressful, but compound that with a very routine-centric toddler who upsets at changes within the environment and then being confined into small uncomfortable places as a whole family unit is hazardous.

We drove to Nashville Sunday night, the night before the procedure since we had to be at the hospital at 6:00 am and I voted against waking myself and two young kids at 3:00 am to make the three-hour trip there the day of.  Luckily and very generously, Nate’s cousin invited us to stay at her apartment just minutes away from the hospital.  It was an adorable place complete with a small dog and two cats which, of course, were the source of fascination for both boys the entire night.

I don’t really have a lot of memories since I was so focused on minding Holden in this non-child-protected apartment.  Nate’s cousin learned quickly the mistake of leaving glasses with any kind of liquid unsupervised in a room, something that resulted in the white straps of Drew’s braces suddenly becoming stained with red wine.  I may have been so distracted and overwhelmed by the energy within the apartment that I totally didn’t listen to my body and ate too much resulting in a horrendous stomach ache followed by…well, let’s just say a complete evacuation which is awesome when staying in a small apartment with the bathroom the size of a shoebox.

Bedtime routine was even worse.  We had a nice bed and an air mattress, but trying to artfully plan who would be most comfortable and less likely to roll out of each bed proved cumbersome.  Drew started in the bed with me and Holden would be laid down to sleep with Daddy, but my over-analytical-anxious-going-insane-this-is-never-going-to-work mind toyed with varying arrangements which Drew ended up sleeping with Daddy.  I nursed Holden (yeah yeah, he’s 2.5 and I’m not happy about still having to nurse him to sleep, he’s got his own things going on) with the strongest prayer that he’d drift off to sleep, but no prayer was heard as it just never happened so making our stay in this 73-square foot apartment even better was a hysterically crying 2.5 year old.  I’m pretty sure that after all of the spilled drinks, terrorized pets, followed by loud crying, that Nate’s cousin may have reconsidered any notion about having kids of her own.

Except it should say "His side/My side"
Except it should say “His side/My side”

So, I pretty much just laid Holden down next to me and I closed my eyes and just hoped he’d just drift to sleep.  He cried and cried, eventually stopped but then he spent the next hour babbling which was really cute and it was extremely hard to not giggle and play with him, but at this point it was after 11:00 pm so I fought the urge and hoped that my lack of interaction would bore him.  He finally did drift off to sleep sometime after midnight.  Have you ever seen those meme’s on motherhood that seem to exaggerate how little of the adult bed the mom sleeps in when her toddler is in the bed with her?  Well, it’s not an exaggeration.  This 25-pound 30-inch toddler literally had me scooched onto the very side of the bed with so little space that bent knees would hang off of the side.  Needless to say, I didn’t sleep soundly or comfortably for God forbid me waking him up in attempt to get more comfortable myself so yes, I just dealt with it.

Early morning wake up, cold apartment and even colder outside was just really unpleasant.  Drew is unable to eat or drink since midnight so, naturally, Nate and I avoid eating or drinking in front of him so I forego my much needed morning drug, coffee.  We make it into the hospital, get checked in and we’re back in pre-op pretty quickly.

Drew begins to get anxious at this point, but he’s easily assured by nursing staff and us that he won’t get any shots.  After all, we drove three hours to Nashville on Friday to have his blood drawn to test his platelets (procedure due to his syndrome) and they far exceeded required levels so no need for additional bloodwork today.  12553033_1027396253965497_4172475500676208845_nBut, lo and behold, only AFTER several nurses telling him he won’t get any shots, the hematologist requested additional platelet check the day of the surgery.  This was especially infuriating because this made our trip on Friday even more pointless.  We were frustrated being forced to come in the first place on Friday because none of our questions about the surgery could be answered (they were “questions for the surgeons who perform the procedure”) but we took a little solace in the fact that his platelets did require checking (even though we could have done that at home, but that’s neither here nor there).  But, now that they wanted platelets this morning, that made the platelet check on Friday irrelevant and now we had NO reason to have travelled over 300 miles, missing school on Friday, for that appointment.  And, here we are having broken a promise to Drew that he wasn’t to expect any shots.

They ended up getting a finger stick which is less stressful than an IV and what do you know, his platelet count was almost pretty much the same.  *rolling my eyes*  Drew was off to surgery.

We were advised that the procedure would last an hour to an hour-and-a-half.  We waited patiently for updates.  I finally got to go have breakfast and coffee while Nate followed Holden around.  Then we switched places.  Still waiting on updates.  Waiting…waiting…  It’s been an hour and a half and still haven’t heard anything.  Nate briefly mentions his worry but I completely disregard it…I can’t let my mind go there.  It’s fine.  The surgery is so short that they’re wrapping things up now and going to talk to us in a minute.  Two hours in, still nothing.

“Clark family, please come to the desk for an update!”



But, never Gatten.  Each time the speaker tone comes on, Nathan and I perk up anticipating it finally being “Gatten” only to slump our shoulders in frustration at the lack of information.  Nearly three hours in, we finally hear, “Gatten!”  Nathan returns and gathers our stuff and tells me they’re calling us into a consult room.

“A consult room? They wouldn’t say anything over the phone?!?”


Deer in headlights.

Now, I was recently comforting a friend who was preparing for her own son’s very first surgery and in my tips for surviving through it, I offered this little tidbit:


But, I completely forgot about my own advice as we hurriedly rushed off with anxiety dripping from our eyes.  Leading up to surgery, we’re all logical and calm but then you’re 7-year-old with congenital heart defects is under anesthesia in a hospital and you completely lose your mind.

But, it was all for naught.  He was fine.  They simply struggled getting the cath into the vein and had to try a few different methods.  He was in recovery and we could see him shortly.

12549102_10154106776229505_1617203858016867510_nUnfortunately, both Nathan and I weren’t allowed to see him together since Holden wasn’t allowed in the PACU so I went back first.  Drew was sleepy, but coherent and not in any continuous pain thanks to pain medicine.  He drank a little cherry icee.  After about thirty minutes, Nathan and I switched places and I returned to the waiting room with Holden.

They were working on discharging Drew and had sent prescriptions for paid meds to the pharmacy downstairs so we were just at the mercy of the pharmacy to leave the hospital.  But, even having waited two hours, the pharmacy needed 30 more minutes much to the shock of the nurses.  Holden’s getting anxious.  I’m getting anxious.  We’re just ready to get out of here.  Finally, we get our medicine.

During the surgery, we bought Holden a new front-facing car seat at the hospital gift shop to replace his rear-facing seat.  We were hopeful he’d enjoy his new view.  But, he apparently didn’t like it as much as we hoped and only about 35 minutes into the three-hour trip home, we heard the much dreaded fussing from Holden.  We were already at our wit’s end with the sudden nearly-stopped traffic jam due to a car accident a few miles up ahead really making Holden’s cries even more annoying.11181803_10154107088379505_6562522783041397843_n

Before long, Holden was hysterical to the point of choking and coughing.  Drew was incessantly asking to turn the movie on the portable DVD player up.  I made numerous attempts to find something for Holden to occupy his attention.  I ended up doing what I most dread doing on a long road trip: sitting in the back seat.  I am inclined to get car sick if I sit in the back so I try to avoid it at all costs.  But, Holden’s crying has reached a peak.  There is so much crap lying around: blankets, pillows, bags, crap crap crap that I don’t have a lot of leg room.  The new car seat takes up a lot of the room shoving me in Drew’s personal space which is, of course, complicated by the fact that his shoulder is sensitive around his incision so I must be careful how I move my elbow lest I bump him.  I’m starving having not had anything to eat since the morning.  I’m overdue for my second cup of coffee which is even more imperative to ensure I, and everybody else, survives this trip home.  I made no attempt to hide my contempt of this ride so naturally Nathan was fuming, but doing a good job being silent and doing his best to just ignore me lest he really flare up my temper.

untitled (2)We stop at the exit-89 gas station, our regular stop, for the cheapest gas and food and drink.  But who didn’t get anything to eat or coffee because her hands were full having to feed Drew his food, who couldn’t himself due to his sore shoulder all while entertaining Holden to keep him calm?   ME!!!  I just didn’t think this trip could get any worse.  Then, we headed west on I-24 and was slammed with the setting sun in my left eye.  Awesome.  Just.  Awesome.

Somehow we all survived.  Once we got home, I drank me the biggest cup of coffee ever, even though it was nearly 7:00 pm and then I left the house, ALONE, and got something to eat at a local pizza place ALONE then went grocery shopping ALONE.

20160120_120503Nathan left for work the next morning, but luckily I had my alone time and a good night’s sleep so it wasn’t as awful as I thought it was going to be.  Drew’s been sore, but his pain level has been decreasing allowing him to once again feed himself and use his arm.  We took his bandage off today, which caused more grief for him than the surgery due to his sensitive skin.  Bandages are always the worst part.  Holden is back in his safe environment so thankfully he has returned to his sweet adorable playful and easy-to-get-to-sleep self.  Holden turns into a terrorist outside the home so the thought of our 6-week stay in a small hotel room in May really escalates my blood pressure to a boiling point.

In addition to all of this, it was mentioned that the catheter sits very close to his heart and during the spiel outlining every nightmarish thing that could go wrong during any surgical procedure, it was mentioned that the catheter might upset the heart.  As if I didn’t already worry enough about Drew’s heart spontaneously stopping (which is an unreasonable fear…I have never been told this is a potential hazard), now I have to worry about that and despite all of my logical thinking, I will worry about it.  And, we have to have the port flushed once a month and I already have enough anxiety anticipating shots for Drew, but now I know he’ll have to have a quick prick to flush it.  Hopefully, they’ll arrange for a home-health nurse to come do it, because I don’t really think I could handle it myself should they decide to provide the training and supplies.

So, please don’t forget to donate and/or share my campaign to raise funds for our trip to Florida in May.  I hope you don’t mind me spending a few dollars on coffee and wine to get me though!

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