Wednesday, 17 August 2011


Although I promise not to do this often (as it will go to their heads and I will NEVER get them to do chores again), I have to tell you, I have the nicest family I know. I am always telling our kids how amazing it is that out of all the babies in the universe, God sent us the four who fit in the best with our family. That doesn't happen often, and it's pretty freaking amazing.

Every once in a while, you start taking your kids for granted, and God, or the fates, or karma, decides that it's time to remind you of what's important in life. When Squid was 2 1/2, that happened to us, and I wrote about it at the time to get it out of my system. Today's post is that same chunk of writing. I have left everything basically as I wrote it when it happened, but have changed the names, and edited some of the details now that we have more information.

The Infection
Anybody who knows Squid knows he is a 3 foot ball of unstoppable energy, and because of this, we have had some pretty memorable holidays......

Camping in Drumheller, he tipped his chair over & fell flat out into a patch of stinging nettles, and got to visit the emergency room. And then he spent the rest of the week slumped in a chair, doped up on antihistamines, grinning vacantly at an ice-cream cone...

At Christmas he was playing with Liz, tripped on his pant leg, fell down, and smacked his head on the living room floor hard enough to cause him to have a seizure. So then Daddy got to call 911, Mommy got to ride in an ambulance, Liz went into hysterics, cause she totally blamed herself, and Squid got roughly 53 popsicles once they cleared his neck & spine & took him off the backboard.

And those are just the injuries that were bad enough to really stand out...

This summer takes the cake.

Squid woke up Saturday morning at about 8, complaining his peepee hurt. Seeing as he was just flailing his drumsticks at his drum, we didn’t think too much of it. Took a look, and it was a little reddish. No biggie. So I drove Isaiah to work, and Jason gave Squid a bath, thinking it was mildly dirty- he’s a boy- there’s always dirt SOMEWHERE. By the time I got back, Jason said it looked a little swollen, and maybe we should run him in to the doctor’s. By the time we got THERE, it was turning red, and worrisome enough for the nurse to bump us up to first in line. Before the doctor even came in to the room, we peeked at it again, freaked, left (with only his underwear on- that’s a good indicator) without seeing the doctor, and drove to the Children’s. This was all in about a 2 hour space of time. When we got to the Children’s, they looked at it in the emergency room, and by then it was swollen to almost the size of Jason's’s thumb, and this angry, mottled purple. I actually burst into tears & had to leave the room- I’ve never seen anything so painful looking.

The doctors decided it was some sort of bacterial or fungal infection, and it had been brewing under his (uncircumcised) foreskin for some time without showing symptoms, and now it was raging out of control. They wanted to be sure they could start to knock it down with antibiotics before we went home, so we could expect to stay at LEAST 6 to 12 hours. Jason hates hospitals, and there was no point in both of us being there, so he left & went to go play his 2:00 ball game, and the emergency room doctor gave Squid a shot of antibiotics.

The doctors told me we would be moved upstairs to be admitted, and there was a slight possibility that they would need to put in a catheter, because he hadn’t actually peed since he woke up & they were a little worried that he wouldn’t pee cause of the irritation/swelling. OK. Fair. Ugly procedure, but I understand.

So they moved us upstairs to a room at the farthest end of Unit 3 so he could get some rest & some antibiotics, pee a bit & go home. Might take a day or 2. The nurses came in, and because putting in a catheter is really traumatic anyway, AND he was infected, they needed to kill the pain. So they plug in an IV, give him a shot of morphine and the second dose of antibiotics, and while he was out, they put in the catheter, which took several tries, as the whole thing was so swollen.

Afterwards, they tell me his blood pressure is a little low, but that's normal- they just need to monitor it. If it gets too low, they can take him to the ICU, where they have more sensitive machines. I called Jason, told him we might be here a bit longer than expected.

Then they routinely check his pulse (little high), temperature (little high, but he has an infection, so ok) and check his blood pressure again & it’s registering as a pretty low 85 over 30. Seems the electronic cuff isn’t working. Happens all the time with these damn things. So they flick it, try again, and his blood pressure is reading 79 over 26. So they go grab a manual one, and do it that way. While she does it, the doctor, who is getting concerned, checks his heart rate, which is now 170 beats a minute. WHAT???? And his temperature has shot up from 38 to 40. In five minutes? That doesn’t happen, does it? So they put the oxygen prongs in his nose, and then the doctor gets his blood pressure reading, which is not wrong- it’s 70 over 20. And what the heck- the kid’s unconscious!

At which point I get nudged out of the way, a nurse yanks out the oxygen prongs, and slaps on a face mask. Someone calls a few people and 2 nurses come in with a portable XRay machine & take pictures of his chest, at which point I am somehow standing in the hallway, not understanding where I am or what’s going on. Someone says they need to start a second IV line, and then proceeds to poke holes in both his hands and his other elbow, as apparently his veins are buried under miles of baby fat. They finally get one in & I say “Gee- he’s sure been poked a lot today” or something equally stupid, and they check him again & the doctor says, not even hearing me “Get me whatever cc’s of Epinephrine”, and I thought- Epi? Is that Epi? Is that the ‘amp of Epi’ they always ask for on ER before the patient crashes???? And then they flip my kid onto his side, jab a huge needle into his thigh & the nurse says to the doctor- I’ve called the PICU and they are getting a room ready- do you want me to call a porter to take him down & the doctor says “No- we have no time- we’ll move him now” (WHAT!?!?!?!?!?!?!?!) And we all rush into the hallway, get on the elevator, and go (up or down- I can’t remember where) to the Pediatric Intensive Care Unit, where the doctor, after having started him on a constant drip of epinephrine, tells me that “Either 1) he has had a severe anaphylactic allergy to either a) Ancef, the antibiotic, or b) morphine, or 2) the infection has gotten into his blood stream and he has c) septicemia or d) toxic shock syndrome, all FOUR of which look exactly the same until you get blood cultures back. We can’t treat his fever, cause we need to know what’s causing it, and we can’t treat the infection in case it’s the antibiotics causing this, and we can’t give him steroids for an allergic reaction cause if it’s toxic shock, that will cause problems. We have sent off blood work to test his liver & kidney are still functioning & we are getting the chest XRays developed right now. We need to make sure his system doesn’t start shutting down. And did no one ever tell you he has a heart murmur? (Oh, God- I can't take in any more information.) And I look at him, and he is so swollen his eyes are just slits and his skin is shiny & tight and he is bright red and sweating and RADIATING heat, and so very still that it finally sank in. He just isn’t that still. Ever.

And then she says ‘He’s a very sick little boy- we’ll take it hour by hour’. I honestly felt like I was in an ER episode where someone brings in their kid for a bruised toe and all of a sudden this chain reaction occurs & the kid dies. And then I thought “Oh, my God- that’s what she’s trying to explain to me- we’re that family and my kid might DIE and he hasn’t even eaten breakfast yet”. Mom & B., who had just popped in to visit cause Jason told them Squid needed antibiotics & mom wanted to bring me a book to read while I waited, got to the unit 3 room about 5 minutes after we left it, (and panicked when all they found was an empty room and a bunch of needle wrappers, I might add) and one of the nurses took them down to the PICU and they heard what the doctor was saying, which was good, because I didn’t absorb it because the whole time she spoke to me someone inside my head was yelling “FOR GOD’S SAKE, HE BANGED HIS PEEPEE WITH A DRUM STICK- WHAT’S WRONG WITH YOU PEOPLE????????????????????????????????????” and mom had to re-tell me most of what she said.

So I went to the phone, and called Jason, who had only just gotten home again and explained to him exactly what the doctor had said, because maybe I didn’t understand & I was over-reacting, and if a cooler head listened to her words, maybe I would realize it was all ok. And he listened & very quietly said he was coming, and hung up and got there like 10 minutes later, so I knew it was not ok & I was NOT overreacting. When he got there, the doctor came in & said she had gotten the blood cultures, etc, back, and it looked like we were dealing with anaphylaxis, not TSS or sepsis, so that was good, but we may need to put him on a ventilator if his breathing gets any worse, and if his blood pressure drops any lower they will have to open up his wrist & place a gauge INSIDE the artery, because the blood pressure monitors can only pick up so low a pressure.

Luckily, they didn’t have to do either of these things, and through late Saturday night and Sunday morning he got better & better, and by late Sunday night the nightmare was over.

So from about 3 pm. Saturday till about 9 p.m. on Sunday, our baby was clinging to life in the PICU at the Children’s, getting pumped full of epinephrine and Benadryl and methyl prednisone & hydrocortisone & solumedrol & 11 other drugs (no shit- 11 others- I made them write everything down before we left, cause I want to be able to explain to future doctors exactly what happened). They moved us back upstairs on Sunday night. Later that night, they tried a new antibiotic and we did it all over again, except this time, they knew to watch him- his new room was right beside the nurse's station, they had the ‘emergency drugs’ by his bed, and a medical person was in attendance the whole time, so it never got very far at all.

By Monday afternoon, he was in good enough shape to be taken off most of the drugs he was on (he was already off the epinephrine drip- that was a condition before leaving the PICU), and by evening, he was eating and drinking on his own and being rude to the nursing staff (He started by yelling ‘GO AWAY’ at anyone who entered the room, and when I told him to stop cause he was being mean, he settled on yelling ‘BYE BYE’ whenever anyone with a stethoscope or a needle came near him). By Tuesday morning, he was able to have the catheter removed, and the IV came out Wednesday morning & we came home at about 2 that day.

They figured we’d have to stay till Thursday, but he was doing so well, they let us go on Wednesday. Now, however, he will sleep in our bedroom forever, and I will be examining him every 83 seconds for signs of impending doom.

There is still some confusion still about whether he reacted to the morphine, the antibiotics, or everything, which will be solved when he undergoes his allergy tests, but until then (end of August), he is not to have ANY medication, especially antibiotics, unless it is in a hospital setting. He also has an appointment next Wednesday with the Infectious Diseases guy at Children’s, because this guy is their antibiotic expert, and he wants to make sure Squid is still not reacting to this obscure antibiotic they finally had to use to treat him. And, for the now-comparatively-unimportant-as-it-is-not-currently-killing-him infection, he is on antibiotics for the next 6 days, and has a follow up appointment with the urology clinic in 4 weeks, at which point they will schedule an urgent circumcision, because now that he has gotten this infection, it is very likely to recur if he stays uncircumcised.

(Every time you have an anaphylactic reaction to something, it keeps getting more severe with every exposure. So until they figured out what it was he was allergic to (we know now it was the morphine)  I had  EpiPens in the diaper bag and at the day home, and all over the house, in case he came in contact with whatever it was.)

These pictures were taken in the PICU at the Children’s after it was all over and I felt like it wasn’t morbid to take a picture. Note the IV’s in both elbows, blood pressure cuff, oxygen tubes, chest monitor leads & the catheter coming from the diaper. What you can’t see are the needle holes in both thighs, both feet, and both arms. And of course, the infection that started it all.

So I joke, cause that is how I cope with things, but for 2 entire long, agonizing days, we thought that when we left the hospital, we’d be leaving alone. Jason brought Isaiah and Liz to the PICU on Sunday morning, just in case. We didn’t tell them that, of course, but they figured it out pretty quick. I kept trying to figure out how to explain to people that it was just an infection, but he was dead anyway. Whenever he was awake he kept screaming for mommy & daddy to make them stop poking him & hurting him & we couldn’t do it for him. Every time he needed something, he got screwed, and it broke my heart.

But we left on Wednesday, 5 days later than they originally thought, but a day earlier than hoped for, and he ran out the hospital doors and yelled bye-bye & blew kisses at everyone we passed in the hallways & we played in the park before we left there for good. So I figure I probably won’t win the lottery anytime soon, cause our luck's been used up, and I’m perfectly fine with that.

The Surgery
So I know it took me months to post (we've been CRAZY busy), but Squid had his surgery Thursday before last. When the doctor said 'He may be uncomfortable for a few days', he was obviously in some sort of liquor-fueled daze....

He couldn't eat the day of the surgery, so he woke up at 6 a.m., as per usual, and went without food till 3:15, which was surgery time- it wasn't as bad as we thought it would be- we just stayed really busy.
His surgery was actually very quick- in & out in 45 minutes, just 18 stitches to close the circumcision, and then the removal of the scar tissue from the infection (sort of like a vegetable peeler on a baby carrot- not cool.), and then 3 hours waiting to make sure he wasn't going to react oddly to the anaesthetic. The anesthesiologist mentioned (about 5 minutes before surgery) that Fentanyl might work as a pain reliever, and if we wanted to try it, we could do a supervised trial run in the hospital after the surgery, but she didn't know if we wanted to complicate the day at all, and just in case he reacted to that too, maybe the surgery was enough to deal with. After our morphine-induced downhill spiral in July, I was more than happy to agree with her. Little did I know...

Squid was a bit groggy when he woke up, and we took him home from the hospital a little before 7 p.m. He seemed tender, but not in too much pain, so we thought it was all good. We hadn't realized that the anaesthetic hadn't worn off yet. Which it did, at 9:42 p.m. Seriously- I kid you not- it was like flipping off a light switch- we watched his eyes shoot open & the screaming started. It didn't actually stop again till the following Tuesday. No joke. He screamed non-stop, except for when he passed out in exhaustion every few hours for a while right after we gave him his Tylenol, which was as often as we possibly could.

B. & D. got married on the Saturday right after his surgery, and instead of all of us attending like we planned, Liz & I went to the wedding alone. It was BEAUTIFUL, and Jason & Isaiah were so sad they missed it, but we had to have 2 people with Squid so that there was always someone there to relieve the other person when  the screaming got too bad.

Also- they don't tell you till AFTER the surgery that the bandage has to be removed on the 2nd day. Not by a professional. By you. They recommend soaking it in warm water, then gently peeling it off. This leaves the impression that the bandage will come off relatively easily. This is a BIG FAT LIE!!!! What actually happens is that you soak the bandage, and try to take it off (they don't tell you it's a clingy bandage, and that it's now glued shut with blood), and nothing happens except that you cause excruciating pain to your poor 2 year old. Jason was so upset- he had to hold Squid down while I tried to pull off the bandage without making him any more hysterical than he already was. Part of the problem was that there was also the weeping from the outside of his poor little unit from removing the scar tissue. He was actually screaming so hard that we were worried he was going to have a heart attack or something- he was bright purple, his eyes bulging out of his skull, screaming at the highest pitch I have ever heard him scream at. We finally decided that being gentle was making things worse, and opted for the 'yanking a bandaid' approach. It ended the agony, but I still can't talk about it.

Eventually the pain wore off, and and in about 5 or so days he was walking again, and in about a week and a half he was back at the dayhome. The swelling took till the end of October to completely go down, and the bruising lasted till early November. It took till Christmas to potty train him again, and till January for him to allow us to pull his underwear down for him when he gets dressed, or to wash him anywhere near that spot in the bath.

Now we're back to normal, and my sincere hope is that by this time next year he will have completely forgotten this whole agonizing ordeal- I figure it's likely- he's still young.

A friend asked me the other day if the whole drama made me rethink my stance on circumcision, and would I circumcise him at birth if we could do it all over again. I gotta tell ya- as much as I would have loved to save my baby all the heartache and pain, and as awful as it was, I still do not believe that if we ever had another boy, I would circumcise him.

I have a hard time believing that a newborn doesn't experience the kind of pain that Squid experienced during the process. A newborn simply doesn't have the capacity to express it to the outside world the way he did. I could never knowingly inflict that kind of horror on my child by choice. I actually think I am probably MORE against circumcision that I was before.

Anyway, all's well that ends well, but I think it will be a while before he stops asking if his peepee is going to hurt tomorrow...

So let's all take a moment and be grateful for our kids today, because you may not have a tomorrow to do it in.