In the Weeds

Everything went really well with the surgery last week.  The doctor knew he was going to take out Aleck’s adenoids but wasn’t sure if he was going to remove the tonsils until Aleck was already under anesthesia.  Before surgery I decided to make the case that those tonsils should go no matter what.  With my history of chronic sickness when I was a kid, why not get it all done in one fell swoop.  Well, there was no need to make my case at all.  Aleck’s tonsils were so large they were pushing on the back of his throat, poor little guy.  The surgery itself was only 45 minutes but he was away from us for about an hour and a half, and it’s the longest 90 minutes ever.  I can’t help but panic a bit every time.  There is this hideous voice in my head asking the “what if” question over and over again.  What if he had a bad reaction to the anesthesia (even though it’s his fourth time with it), what if the bleeding was out of control, what if something happens to my little man?  Then with all my might I push those voices as far out of my head as possible and head to the gift shop to look for some stupid stuff to occupy my mind, like magnets, mugs, and dancing stuffed animals.

The nerves actually start the night before, and I looked at Craig and asked, “Are we crazy that we scheduled this surgery on the one year anniversary of putting Sadie to sleep?”  My brain told me that we probably should have pushed the surgery, but my gut told me that everything was going to be fine and that the sooner we got him through this the sooner he could be on the road to recovery.  Even though we were scheduling everything for this absolutely horror of an anniversary, what we did a year ago for our sweet girl was the most humane unselfish thing we’ve probably ever done.  And as much as we miss her every single day of our lives, there isn’t a moment where I question our decision.  I regret having to make that decision and wish she was still with us every day especially since Aleck is now just crazy about dogs, so crazy that he’s going to say “dog” before he says “mama”, he’s very close.

Meeting Aleck in the recovery room was the easiest recovery room experience we’ve ever had.  It only took a few minutes to get him calm and comfortable in my lap and we just sat relaxing and sucking on our pacifier while we waited for his doctor to come and talk to us.  What was sort of funny is that the anesthesiologist tried to tell me that having his tonsils and adenoids out would be harder than any type of ortho surgery…clearly this man didn’t have to spend 30 hours trying to get Aleck calm after his hip surgery in August.  Yuck.  Basically in every way this was much easier than hip surgery, especially since I could pick him up right away and make him feel soothed in my arms.  When we got back to the room he mostly slept, watched some tv, and we read him books.  An absolute cake walk by comparison.  And all we would have to do the next morning is get a few ounces of liquid in him and we’d be home free.

Home free was a pipe dream.  We were told from the beginning that we’d be going home the next day, but no one warned me that it could be the next day, or it could be five days later.  If someone had even mentioned to me the possibility of this taking up to five days to get enough liquid and food in him so we could take him home, I would have known right away that we’d be in for five days.  That’s Aleck’s MO, that’s how he operates.  He takes longer, he hurts more intensely, he resists recovery, he fusses more, and he’s technically developmentally behind, and kids who are developmentally behind often take up to 5 days before they can go home.  And since he already has a ton of eating issues, wouldn’t have a sore throat make him come to standstill?  I mean, if I had even thought about it for a second it would have been clear that we’d be in for the long haul if I knew that this long haul even existed. But no one told us that recovery in the hospital before discharge could take that long so we weren’t prepared.  Not physically, not emotionally, and not mentally for such a long stay during what should have been a quick trip.  On Thursday I felt like I was failing once again as I tried over and over to get fluids into Aleck.  We went for walks, we played in the infant play room, we rolled, we played, we read, we did it all to no avail.  By the end of the day I had had it.  We were stuck in an outpatient room which is the size of a cubicle, I had “slept” on a pull out lounge chair that left me feeling like someone had pounded on my body with a rubber mallet all night long, it made my accommodations at the RIC seem like the Ritz Carlton.  At 5pm they finally moved us to the inpatient floor which was so much better, but we still had this idea that we’d be leaving any minute.  Maybe after breakfast, maybe after lunch, let’s try cutting off the IV to make him thirsty, back to the playroom, back to the cafeteria, switching up the pain meds, Popsicles, ice cream, pudding, jello, apple sauce, apple juice, water, water bottles, his bottles, his sippy cup, yogurt, gogurt, Italian Ice, we threw everything at him but no go.

By Saturday it became very clear that this would be a case of slow and steady winning the race.  He certainly wasn’t going to turn around overnight.  I couldn’t imagine that he’d wake up, look at me, grab that bottle out of my hand and down the whole thing in a few minutes.  Nothing has ever been this easy for us.  Getting food and drink into Aleck has been an uphill battle since he was born, why would post surgery be any different?  Especially a procedure that left him with a painfully sore throat.  So then it became a matter of did we want slow and steady in this unfamiliar stressful environment or did we want to try to make him comfortable and happy at home?  Nurses coming at him day and night, taking his vitals, shoving pain medication down his throat(he screamed bloody murder every time), suctioning the mucus out of his nose, shoving Afrin up his nose, flipping him over in the middle of the night to do all of this and then shoving a pacifier in his mouth, that’s enough stress to make anyone not want to eat. Aleck had the tail end of a cold going into the procedure but woke up with a face full of snot unlike one I’ve ever seen and he’s still a snotty mess 6 days later.  So on top of it all he still can’t breathe through his nose, the original problem that brought us to the ENT in the first place.  It was the perfect storm.

As Craig and I felt we could no longer keep our cool during this hurricane, throwing stuffed animals at each other’s faces in fits of rage, we decided something had to change.  Unless someone was coming by with a magic wand to grant Aleck an insatiable appetite, none of the suggestions we were getting were big enough or drastic enough to make any difference.  On Friday night I ordered Aleck some chicken pot pie, trying to offer him something that smelled good, was a fun texture, and creamy, turned out to be a home run.  He ate more of that than he’d eaten in days and took about an ounce of water and apple juice.  It still wasn’t enough to go home but it was enough to give us peace of mind, at least for the night.  By 1pm on Saturday, right before his second nap and after my second failed attempt at getting enough food or liquid in my sweet boy, I had the nurse page our ENT resident.  Luckily he’s the same resident we’d been working with since we went in to get Aleck scoped two weeks ago, or luckily he hadn’t f-ed up so far.  I suggested that taking him home just might be what he needs to continue to recover, pointing out how stressful it was for everyone at the hospital.  The big thing every feeding specialist has told me is that a baby with eating problems will eat even less if they are stressed out, and since they can sense your stress, well, we had to get out of there.  The resident said this would be my call.  We could always come back to the hospital if we needed to but it might be worth a shot.

So, we stressed about all of it for another two hours in which Aleck and I both took a nap.  During the early evening my mom showed up and kicked us out of the hospital while she occupied Aleck.  We headed to the perfect location for two parents who’s child won’t eat, Ghiradelli, for an ice cream sundae.  Over warm peanut butter and hot fudge decadence we decided that we had to leave the hospital.  We had to take the chance he’d do better at home and if we spent one more day in that hospital Craig and I might have left some pretty ugly marks on each other.  Plus, if I could sleep at home Saturday and Sunday night, I’d hopefully have enough energy to tackle Aleck alone on Monday.  We’d have a day to unwind at home, all of us, and we could provide Aleck with the routine and the atmosphere he needed to succeed.  By 7pm we were home.  Craig put Aleck in his high chair, he ate half a container of baby food turkey with sweet potatoes and went right to sleep.  We fell into the couch with a huge sigh of relief, we already knew that we made the best decision.

At home things aren’t anywhere near back to normal.  Aleck has definitely developed some kind of distrust of both Craig and I, along with anyone else that walks into the house.  When Craig came home tonight Aleck was sitting in his high chair just screaming at me.  It wasn’t time for pain meds, I tried offering him all kinds of food and drink, he didn’t want his puzzle, blowing bubbles didn’t seem to help, picking him up didn’t stop the crying, putting him back down didn’t stop the crying.  Finally I had Craig sit where I had been sitting and I moved to the other side of the counter where Aleck could still see me.  Immediately he stopped crying.  Craig was able to coax some milk and more food into his system and Aleck looked at me for approval with every sip and every bite.  Then Craig took Aleck to get ready for his bath, Aleck started to wail again at the top of his lungs.  Since we’ve been home he screams every time we put him on his changing table, whether we are changing diapers, putting his shoes on for a nap, or simply putting him in pjs.  Craig brought the crying Aleck into the bathroom where he continued to cry while I filled up the tub.  So we put him in the tub, Aleck usually loves bathtime, hoping that would calm him down.  But he wouldn’t calm down until I sat next to Craig while he was giving Aleck his bath.  Then I had to hold Aleck so Craig could put his pj’s on since he was screaming while lying down on the changing table.  At one moment Aleck will  only be happy if he sits on me, then if he sits in front of me with my legs around him, then he’s OK sitting next to me, then he’s OK sitting on the floor watching a Baby Einstein DVD so I can duck into the bathroom.  Thank you Christina for all of your Baby Einstein DVDS, they are baby hypno devices and we needed all of them today.  At some point Aleck’s mood digresses again and I have to start the whole process over again, on my lap, in my lap, in front of me, next to me, and then I can go make him a bottle, pour him apple juice, get him a snack, etc.  By the time Craig walked in the door tonight I was completely fried.  I felt like such a cliche sitting in front of my crying baby, both this morning and this evening, asking questions out loud I know I can’t get the answer to, “Are you hungry, are you cold, are you hot, does something hurt, are you thirsty, are you tired, why can’t you talk yet, oh I wish you could talk!”  I check the clock, nope not time for pain meds, so that’s not going to be the answer, and it would be so much easier if he could just answer.

He’s eating better though it varies from meal to meal.  He ate a huge lunch today but didn’t eat breakfast and barely touched dinner, though he did drink some milk.  I’m still offering him bottles at his regular times, but I’m only offering him two ounces and I’m lucky if he drinks half of that.  My nutritionist was here today and he’s lost a pound since before the surgery, ugh.  But she wants me to keep going with my program.  I should keep offering him his bottles, even if he refuses, and hope that he gradually takes more and more and more as his throat is feeling better.  In many ways this simple procedure has proven to be more of an undertaking and harder on us than the hip surgery.  We certainly weren’t prepared for the road to recovery, and the price tag of this surgery will be almost as high as it was with hip surgery as we were in the hospital for almost the same number of days.  But here we don’t get any help from any government programs so we are on the hook for our deductible and whatever else our insurance company won’t cover for this procedure and subsequent recovery.  Not to mention the parking, meals, and other costs of living that come with living at a hospital.  I’m going to look into the charity and financial aid programs at Children’s and hopefully we can get some help with the constant pile up of hospital and doctor bills.  Maybe a little relief through the programs already set up at the hospital.  What we really need is relief from watching our little baby in pain because I know that none of us are ready for another hospital stay in our future and right now I don’t think our little family could survive one.  Hopefully this will do the trick and give us the respite we so desperately need.

6 Replies to “In the Weeds”

  1. Wow, you guys are such champs. I am amazed by your strength, endurance, and love. Here’s hoping that once the soreness from the surgery wears off, his eating and drinking will improve and it will turn out that a lot of the problem was the adenoids and the tonsils. Either way, I’m pulling for you and cheering you on. Love you guys!

  2. Don’t kill me for suggesting this 🙂 It took me a long time to finally do it, & ASK. I was shocked at how many people came out of the wood work to help. It really helped me & can help you guys too. The worst that can happen, is someone will say no. Ya know? When you get a chance go here:

    You guys are amazing!!!!! So glad you keep us posted.
    Thinking about u, & sending hugs & positive/healing vibes.

  3. Yes, can you guys set up some kind of fund? I would happily give what we can and I am sure many people would feel the same way!

  4. Mr Aleck does like to get things done at his own pace. You have to admire his strength. And I equally admire his parents’ strength. Every time I read your blog, I can’t believe what you all endure. You are an inspiration to me. Love you.

  5. If only I could do more than just give you DVDs! I wish I had more money to hire a sitter and come help you. I wish we lived closer so that I could be at the ready any time you need a hand, a shoulder, or a much needed friend with a bottle of wine and box of chocolate. I wish for so much for you, Craig, and Aleck, mostly I wish you all a little peace. I will try harder to get to you, but always know I love you and think of you all the time. XO

  6. We love you Christina and know that you are in our hearts and we are always in yours. Once we achieve anything close to normalcy around here we can start planning times to see each other. I think just a month or so and we might actually get there, fingers crossed. Those DVDs are life saving and we’ll enjoy chocolate and wine together soon. oxo

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