Friday, we had pre-op: just a quick visit with Dr. Paley and vitals with the downstairs team.   It was a much shorter day than last time since they decided to do any blood work on Tuesday, the day of surgery.

Drew has been in a great place after his left-leg surgery.  During the day, he was only taking one to two doses of pain medication with minimal discomfort.  The nights were a different story.  He would wake in discomfort two or three times a night needing pain medicine or to replace his ice pack.

During the days he was almost back to normal with the exception of not being about to walk or even roll.  We even got him out of the apartment for a few activities.  Friday evening, I took Drew to see Angry Birds and ate pizza at his favorite street locale.  Over the weekend, we walked to the local park and occupied our time by launching these new toy helicopter darts Daddy found at the toy store.   Sunday, we took the boys to the Florida Science and Aquarium. 

Drew was doing so well and thriving that it was really disheartening to think about starting over from the beginning on Tuesday when we’d go in for the same surgery on the right.  Just when things were looking up, we were being knocked down again.  Monday, the day before surgery, I started to panic about how exponentially more difficult things would become with the loss of Drew’s right leg.  Taking Drew to the bathroom was extremely taxing having to lift 63-pounds complicated by the fact that his left leg is not flexible and even MORE complicated by the fact that it was still somewhat sensitive.  I thought about suddenly have two legs stuck straight out, unable to bend, and how much harder it would be to lift him up and down.   He’s able to use his right leg to assist us in dressing and undressing him by pushing up to lift his bottom, but he’d soon lose that ability.

I suppose we’ll figure it out just like we did losing flexibility and function of his left.  That’s not to say things won’t be hard though.

Finally, on Tuesday, we reported to the hospital at 9 am where they immediately began blood work.  We were VERY shocked to have learned his platelets are once again low.  We were shocked to find they were low before his last surgery because his platelets have been very stable for two years even reaching very near normal levels which is uncommon with TAR.  So, imagine our surprise to find that they were once again low, even lower than they were two weeks ago when we were surprised.  His count was 57,000 (normal would be 150K or more).  He hasn’t had that low of a number since he was six months old!  So, he had to have yet another platelet transfusion before surgery.  So weird to be back in this boat again!

I guess because of the sudden need for a transfusion, it delayed going back to the OR because it was almost 2:00 pm when the finally retrieved him.  We were told that this surgery would likely be longer than his 5-hour surgery last time, but it ended up being about the same. He did well and Dr. Paley was pleased with his two straight legs.

So, he’s been in the hospital now for his second day (one night).  Day one was pretty good with pain that was well-managed.  He did  have to have an actual blood transfusion due to low hemoglobin apparently from a lot of blood loss during surgery.  Drew was happy and pleasant.  Daddy had a scheduled flight out of Orlando back home in preparation for him to return to work shortly so while I drove him 2.5 hours to Orlando (flights were cheaper through a specific airline that only flies into Orlando), Nathan’s mom (my beloved mother-in-law) stayed with Drew in the hospital.

I relieved “Yaya” of her duty this morning and today hasn’t been that wonderful.  First, I get a very frustrating report from Yaya who explained that the staff came in for vitals every hour during the night.  Now, getting vitals the standard every four hours is aggravating with the one to two disruptions of sleep, so when she said they did it every hour, I was infuriated and it wasn’t even me having to experience it.  It’s like the hospital couldn’t give a f&^k if you or the patient gets any sleep at all as if sleep has no healing effects at all.  Just f$#k ’em!  I need to know what you’re oxygen level is a every moment of the damn night.  And, do they look at the pulseometer for their pulse and oxygen level that is currently attached to his finger and reported on the monitor?  NO!! They fuss with his toe trying to attach an alternate pulseometer.  WT actual F?!?  EVERY HOUR!!!  Just as soon as they’d get back to sleep, here they’d come again, an hour later, to wake him back up for oxygen level and blood pressure.   Oh, he’s finally asleep and having some pain-free sleep?  Oh hell no! Wake that boy up!  And they don’t even test that often during the day so they intentionally wait until the patient is finally comfortable and at peace long enough to sleep and that’s the best time, in their eyes, to take their vitals.  I will be speaking with someone here about that.  I’m just venting here first with hopes that I can retain my anger and filter my foul language.  I’m not trying to get kicked out and banned from this hospital. LOL!

Today was the day I had been dreading: moving him from the bed to the wheelchair for the first time. And, it was awful.  Drew was instantly upset and hysterical.  His pain isn’t as well-managed as day one and is more frequently requiring pain medicine.  He’s in constant discomfort, but taking the maximum pain medicine allowed.  As PT moved things around to get his wheelchair set up for transfer, Drew sobbed and reached for me and he loudly pleaded, “Mom! Please make them stop!  Please don’t let them do this to me!  I can’t do it.  Please….PLEASE!  Stop them…it’s going to hurt! Please make them stop!”  I just stand by his side, silent.  Helpless.  I know no amount of encouragement or words of comfort will help relieve his anxiety.  There’s no reasoning with him when he’s like this.  So, I do nothing but look at him with his streaming tears and hold his hand.  I can understand the need to move, but I can’t make him see it and I don’t make them stop.  I fail Drew.  I fail at saving him when he begs for it.   Words cannot describe the despair in my heart.

Last surgery, it took about a week after surgery to be in that aforementioned good place so I’m counting down the days until we can once again see a smiling face.

No real transition here…so sorry for the screeching halt and abrupt turn….

The floor has been full of new nursing students who come and practice doing vitals (probably an explanation for the too frequent checks – overeager nursing students) and doing nice things for us.  One was in adjusting Drew’s pillows and seemed to have a pretty good rapport with Drew and was asking me questions about what he’s going through.  She seemed to empathize with our situation and she seem to really be affected by Drew’s discomfort.  She asked, “How do you do it?  How are you able to stay so strong?”  I didn’t have a good answer immediately.  I wasn’t sure.  How DO I just keep hanging in there?  Why haven’t I had a breakdown?  I suppose it’s because I’ve been through this, at Drew’s side, so many times that I know that it gets better.  I know that today is bad, but tomorrow will be a shade better.  I know a week from now, he’ll be fine.  I know that being upset and anxious doesn’t change anything.  I know that Drew is weak and looks to me and feeds off of my anxiety level and evaluates my reactions to determine how bad something is.

Just within the last two days, Drew has had two blood transfusions and though I was shocked at being back in that boat, I shrugged it off and barely blink an eye as I watch the donated blood drip through the line.  But, I recall Drew’s very first platelet transfusion when he was a week old.  He was a little 6 pound baby and I was new to this TAR thing.  I watched as the nurses felt around his foot and carefully inserted the IV to administer the transfusion.  Drew cried hysterically on the bed, not in my arms, and I thought it was the worst thing ever: to be reliant on blood transfusion for survival.  I just thought my world was over watching my poor poor baby laying there crying as I cried hysterically to the point of not being able to breathe being tortured by wanting to hold and comfort my baby.  I did not handle it so well.

But, now, 18 or 19 surgeries later, I only barely tear up as they take him down the hall outside of my view.  I mean, its tough on the inside.  I’m sad and hope for success, but this is so routine for us that, honestly, sometimes it feels like I’m just putting him on the bus to go to school for the day.  Sometimes I wonder if it’s OK to feel this way.  I’ve heard other moms comment that “It never gets any easier.”  And, I’m like, “well…I thought it kind of did”.   I know Drew is going to be OK.  Not that I diminish the risk of surgery or the therapy that comes afterwards, but I know that in the long run, he’ll be fine.  I just have to be patient!