The end of a very long day

Just like today, this  update may be long, but it ends good. ;-)

I'm not really sure where "Yesterday" ended and "Today" started. I guess logically one would say midnight, but somehow it was all just one long day. Since we are really pushing fluids into Axel right now, our schedule completely revolves upon the next time he needs to get to the bathroom, and weather or not he needs to poop. Since getting him to the bathroom is back-breaking work, it's important to get him up and moving on his own as quickly as possible without pushing him too fast. It's a very fine line to dance! Needless to say, sleeping at the hospital isn't really conducive to parental rest when it takes three people to get him to the toilet, and it includes much screaming and yelling.

I wish I had a video of a bathroom run, but I can't do that and be one of the three people it takes to get him there. The halo is only supposed to be about 7 lbs, but since it throws off the center of balance, making the person top heavy, you're also supporting their entire upper body which is FORCING itself forward. So for Axel, that's about 25-30 lbs that we're struggling to move forward yet keep upright while not getting impaled with the pins or posts. Once we get to the bathroom

The next thing I know it was 8:00 in the morning and the surgeon (and his entourage) was with him. I was snoring on the roll-away bed. Lovely. Pretty sure I was drooling too. And you should see my hair when I wake up.

Dr. Samdani is very impressed with how quickly Axel is progressing, and I have to agree. Once that visit was done it was time to get Axel to the toilet...again...only this time he must have listened to what the Dr. said about how well he was doing, and he did GREAT walking to the bathroom. Still with 3 people, but with much less screaming and crying.

That done, we got Axel into his chair and went down to the front lobby to wait for Papa and Angela to come. I wish my battery hadn't died on my camera! I could have shared with you the first belly laugh we've seen since Monday.



Later in the day it was time for PT. Since kids are really top heavy when they get their halos on, they have to re-learn how to stand up straight, and the older the kid the longer this takes. The little kids do it pretty quickly, the big kids try to overcompensate, etc. Anyway, when PT Mark came the first time he brought with him a walker which helped, but Axel was still really pitched forward. Later in the day he brought a reverse walker. WOW! Axel stood right up, nice and tall! He walked the 10 feet to bathroom without any complaint. When we sat him up I was able to get a picture of his fusion incision. His hip incision is kind of underneath the vest and hard to see. (which makes keeping it clean really easy. NOT!)

Angela had spent the entire morning wheeling Axel's smaller wheelchair around and around the 5th floor, and Axel had been up a couple of times and stressed out by various things, so by that time it was 2:00 and everyone was tired. It was time for a family nap! Axel took the bed, Angela took his reclining wheelchair,  I took the roll-away, and Dean found a couch somewhere in an empty playroom. Angela wasn't really excited about taking a nap, but all I had to do was turn on the T.V., turn off the lights, and out she went! LOL We all slept for almost 2 hours!

One of the girls on the floor had a surprise birthday party yesterday. We all went down to have pizza and cake, but Axel was still sleeping so he missed out. But, the party was a pirate theme, and we brought him stuff! Last night Dean, Angela and I all slept at Ronald McDonald house, so this is how we left the pirate last night. LOL Terri, if you're reading, do you see the chain of fiddles you sent him? His favorite is the barrel of monkeys to shake!

Today I'll try to get a video of him walking. He'll be discharged somewhere between tomorrow and Monday. Since Dean and Angela are leaving Sunday, I have to be able to do transfers with him myself.

Sitting Up

Today was a day of changes for Axel. First, our surgeon Dr. Amer Samdani came in to see how Axel was doing. Because we started getting Axel up to pee yesterday afternoon (since he refused to have anything to do with the urinal) that put him slightly ahead of schedule in the recovery process. We'll just have to see if he stays ahead or ends up discharging at about the same time as the other kids.

As you read the rest of this post, know that every.single.step involved much screaming and crying. Some related to pain, and some just about the fact he now gets mad as soon as anyone walks into the room and he anticipates being messed with. He's still living up to the "spider monkey" nickname! Man, can he reach around behind him when you *think* you're holding his arm!!!

So, the first thing we did was remove the bandages on the main surgical site on the back of his neck. The incision is about 4 1/2 inches long, and sure looks sore. OUCH!

Next was to remove the drain from his hip where the bone graft was taken from. This was probably the worst thing of the day. Adults who've had this procedure done say that hip feels like it's been cracked in half. Between the fact they have to move and REmove muscle from the bone in order to get to it, plus they cut a hunk out of it, I can only imagine the pain! Then there is the nerve pain on the skin near the incision. Oh, and pulling the stitch that holds the drain in place. (Renee, the internal portion of Axel's drain was only about 3-4 inches long.)

After that was all removed, a lidacaine patch was placed over the top. This stayed on for 12 hours, then is removed for 12 but maintains it's effect. Another will be applied tomorrow morning. The purpose of the patch is more localized pain relief, allowing him a *slightly* easier time walking.

Next came pin care. Lovely. Cleaning the pins. They're not supposed to hurt, but there is definetly pressure. Axel's crying was much more pissed off than anything else during this fun stuff. Oh, and it was two nurses-in-training learning to do this so they got a lesson in "turning off" your emotions when doing difficult stuff like that.

We also ditched the oxygen he's been getting when he sleeps, and disconnected his I.V. narcotics, switching him to oral morphine instead.

So that was all done by about 10:00 this morning, and with all that screaming and crying he was ready for a NAP. So was I. :-)

At 1:00 PT came in. I can tell you that Axel does NOT like Mark, because Mark makes him do stuff. Like stand on an incredibly sore hip. But today was better than yesterday, and with three people holding him we were able to get him to the toilet to pee. (last night we were just using the camode by the bedside.) One discovery I made: My back is a MESS! Yesterday, the first time we moved him, I realized my back cannot handle bending over him, supporting him. That and in the airport in Minneapolis I managed to do something to my repaired wrist, and it's still not back to normal. So we've been trying to have staff do all the lifting, but I'm a control freak and sometimes it's just easier to do things myself than try to explain it to someone. I know this is bad, and I'm trying to just give it up so that my back is in good shape for when he is discharged and I'm on my own.

After the field trip to the toilet, Mark brought a special treat: A wheelchair! Axel was able to see this place he's spent the past several days, and even got to go to the giant playroom with Dean and Angela.
He stayed in the chair for about 2 hours, dozing off and on before we brought him back to his room for a much needed nap. Just like getting into the chair, getting out includes the same screaming and crying. Oh, and when he's standing and having to "walk" (because it is so not a "walk" at this point.) even though that hip is killing him he's able to stomp that foot in anger! I think I've mentioned his foot stomp before. It usually annoys me, but in this circumstance it kind of cracks me up because we can see his spunk coming back.

Axel did get one surprise tonight. Dean, Angela and I went back to Ronald McDonald house for a few hours so I could get a good nap (slept like a ROCK for two hours!) and dinner, haircut for Dean from a visiting salon, etc. When we came back to the hospital at 7:30 Axel had eaten dinner and was back in his wheelchair, sitting at the nurses station. But he didn't look very happy and wasn't smiling. I went to the room and took out something I'd been saving for a moment just like this. When he needs a favorite something from home.

You know those Signing Time videos? Axel not only watches them obsessively, but he LOVES the little booklets that come inside each dvd case! He has collected them, and at home keeps them all in a nice neat stack which he carries around the house with him. He ADORES these things! So, when I brought them out from behind my back his face lit up for the first time since Monday. OH HE WAS SO HAPPY!!!!!! He kissed the picture of Rachel, made the nurses look at the booklets, etc. He fell asleep tonight holding them. I don't know what we're going to do if these things ever fall apart.

Here's a picture of Axel having a very awake moment in the chair. I had just given him his Signing Time booklets. He was sound asleep again a few minutes later.

Tomorrow proves to be another big day. He'll be getting his vest and halo adjusted so it's straight. They have to wait to do it when he's able to stand up straight, bearing equal wait on both hips. For those who asked, no he cannot bathe with the halo & vest on. The vest does NOT come off except in extreme emergency....like choking....The purpose of the halo/vest is to keep the bone graft 100% still so it can graft together and heal, and the halo is held in place by the vest, which is fitted to the body.

Kiss the Bear

Yesterday (Tuesday) Axel had just a few minutes where he was feeling semi good. It seems a long time ago already! Anyway, he was loving on his Bobo bear.


Right now I'm waiting for Dean and Angela to come to the hospital with clean clothes for me so I can get a shower. I expect him to get worse today since he's going to get up and moving with PT today, get his vest and halo adjusted, drain tube out of his hip, bandages removed from his neck and changed on his hip and other things he really wants nothing to do with!

How About Some Humor?

There are only a few situations in life where you can't find any humor at all, and I'm all about finding it even in the worst of them.

1) Axel has fantastic range of motion, even in the hip the graft was taken from. Yep, he can kick a nurse who's way up by his head square in the chest.

2) Axel can be in the middle of a mad, crying, painful rage, and still manage to say, "Signing Time" to make us forget what we're doing.

3) Axel is intentionally waiting for me to get right in his face to cough. What a sweetheart.

4) Axel grabbed a male nurse in the crotch while getting moved to the toilet.

5) Axel just peed a HUGE amount. More than he normally pees in a 24 hour period. He let out an audible "Aaaaahhhhhhh" when he was done.

6) A male nurse and I were just discussing the fact they cannot tuck Axel's hands under the blankets because it takes away his communication. The nurse proceeded to tell me how his good friend works at the area school for the blind and signs all the time. I'll let you process that one for a minute.

Not funny but VERY sweet, as we were getting ready to move him this last time, I was leaning over Axel's head to move some tubing. He was mad and screaming because he was anticipating being moved when he suddenly gave me a GIANT pucker, wanting me to kiss him. Poor baby!

Just in case

Just in case you wanted to know, (Ann!) Axel just peed 540 whatever-the-unit-of-measurement-is!!!!! It's a major event to get him up to pee, and in four hours we'll be doing it again.

A Very Rough Day

The morning started out pretty good. Axel was "de-intensified" (had his arterial line, catheter, one of his IV's and oxygen cannula removed) and he was moved back down to a regular room.

About 3:00 he was complaining and pushing on his belly. They scanned him and found 400+ mls of urine in there (about double what his capacity should be.). He was wearing a pull-up, but you know...he's TEN and not gonna pee in it. We tried a urinal, and that got him making his noise he reserves for the most annoying situations. Although he wasn't due to start moving until tomorrow, we decided to try getting him to the toilet tonight. That took four people. Lots of crying and screaming because the hip where the graft was taken was very painful! Got him to the toilet but he just couldn't settle down. Finally we gave up, put him back to bed (more screaming) and used a catheter to empty his bladder, removing 475 mls of urine. Poor baby.

Two hours later he was distended again. We scanned him and he already measured 200+ mls. That's what happens when the kid is doing great with drinking! So we brought him to the bathroom again, and this time he WENT on his own, which was a huge accomplishment. But when we stood him up (four of us crammed into the TINY bathroom area!) his belly was still distended. We scanned him while he stood there and he was still at 200. UGH! We sat him back down and I sat in the bathroom with him balancing him for about 1/2 hr. Still nothing. We finally gave up. We'll try again in just a little bit but if he doesn't go, we'll have to cath him since his bladder is so distended, which makes his pain management difficult.

Moving him to the bathroom right now is a huge ordeal, and my back does not like it one bit. Once he gets his IV out it will require one less person, and once he understands that he has to stand up straight (and not KICK those helping him) it will be even easier. I'm sure Axel feels like me, that life would be great if he (and I) could just blink and these next few days would be over.

News and Thanks

First, BOTH Axel and I got a good night sleep last night! WOOT WOOT! I didn't hear a sound out of Axel after about midnight, and even that was just for a couple of minutes. His nurse kept him loaded up on meds, and watching his monitors closely for signs of agitation before he even woke up. (changes in heart rate, blood pressure, etc.) Axel easily becomes hypothermic even on a good day, so his body temp is running a little on the low side, but otherwise he's doing just great. I've had a shower and everything already so I'm ready to start the day. (ok, well those who know me also know that by 10:00 a.m. I'm going to be contemplating a morning nap. LOL)

Dean and Angela stayed at Ronald McDonald house last night. I skyped with them around 8:00, and Angela got to see Axel for just a second. Dean said she was in bed all of four minutes before he heard her snoring. Hopefully Dean got a good night sleep too, because we're switching kids this morning and he'll be on Axel duty.

Today will be a difficult day as we start bringing Axel's pain meds down a bit, then tonight or tomorrow we'll move him out of PICU and back down to his regular room. Ok, I am off to find a toothbrush!

The set up

Here are a couple of pictures of Axel's room in the PICU. Most of the machines should be gone by tomorrow afternoon.

We got to see our boy!

Warning the pictures are not pretty. Poor baby is tellling us "I uh ooooo" (I love you) and signing the sweetest OK when we tell him to close his eyes and rest. He is in FULL restraints since our little spider monkey managed to kick a nurse right in the chest eventhough she was way up by his head! He has great aim thanks to years of having to use his feet as his only defense.

Out of surgery!

Axel is out of surgery and in intensive care. We're just waiting to go back to see him. We hear he has opened his eyes already!

Surgeon update

Axel's surgeon was just in to talk to us. The dangerous part of surgery is done! Now they need to close him up, clean him up, then put the vest portion of the brace on. That whole process takes around 2 hours. So probably 2 1/2 to 3 hours before we will see him.

A HUGE thank you

I cannot thank my friend Colleen enough for picking up Angela from the hospital this morning, and keeping her occupied for the day so that we could focus on Axel. You deserve a GIANT hug!!!!

Halo is on

The halo is now on and they're just making the first incision. That is the end of showers or baths until the halo comes off several months from now.

On another note, there is no internet access in the 7th floor.waiting room so we're headed back down to Axel's 5th floor room to hang out. And...there are twobeds in there.  ;-)

And he's out!

They took Axel into the OR about 5 minutes ago. He was hillarious on the happy juice! Laughing so hard he could barely breath. LOL

The surgeon did decide, after watching Axels stretch armstrong impersonations that the halo is an absolute necessity so no more questions about that!

This is the very last picture of Axel's head without scars. We sure love our little spider monkey!

On thier way up

OR team is on their way up to get Axel.

Shhhhhhh

Axel is in bed for the night. Not sleeping yet though. They put his I.V. line in around 6:30 tonight, and now at 10:30 they were hooking up the I.V. bag for the first time, so he's a little worried about what that machine is all about, and the line going to his hand that he was pissed off about to begin with.

My friend Tink and her daughter Anna came to visit us at the hospital. Tink is my twin from another mother, but we were never knew each other until we met three years ago. (Check out my "Epic Journey" posts!) Anyway, they brought us some AWESOME bread and Bruschetta (which I have not touched yet, but I know I will be getting into tomorrow!) and eight different flavors of ice cream for Axel to dig into. It was a welcome treat, and always refreshing to get together with her. I don't have to explain anything about myself to her because she is my twin. Oh, and Tink, just so you know, Axel is now blowing raspberries on everyone! ROFL

Dean is staying at the hospital tonight and Angela and I have come back to the RMDH to sleep. PLEASE PRAY that we don't have cab issues in the morning! When Axel and I were here in Feb, we waited 90 minutes for a cab after being told "10-15 minutes". Today we called at 10:30 a.m. to order a cab for 12:30. It came at 1:15.  Now I have a request in for a cab at 5:30 a.m. so we can be to the hospital by 6:00...in time for them to take him to surgery around 6:30. PLEASE PRAY OUR CAB IS ON TIME!!!! I'll be getting up at 4:00 a.m. to call again just to make sure.

Dean...I know you're reading...sleep well sweetheart, and give my boy an extra bunch of kisses from me and Angela. See you in the morning! LOVE YOU!

The little prince

The prince is enjoying his last meal. The cafeteria food leaves much to be desired here. The nurses say its much better during the week.
Check in to the hospital was smooth. Our only problem has been the cabs. We ordered a cab at 10:30 a.m. for 12:30, and it didn't come until 1:00. I called them again to order a 5:30 a.m cab for tomorrow morning. Dean is staying overnight with Axel so Angela and I need to be back here by 6:00 at the latest.( its only about 2 miles away.) They'll be taking him for surgery around 6:30-6:45 so our cab better be on time! If you remember back in Feb. We waited 90 minutes for a cab.

Headed to the hospital.

I forget that I have been throught this with Angela more times than I care to count, so it caught me off guard a bit to find Dean near tears as we waited for the cab that would take us to the hospital. I'll be fine until tomorrow but Dean could use your prayers.

Dean posted to his blog today for the first time since December. I know he'd love to hear from you.

Twitter and Such

I have a remote blogging app on my blog, but apparently it doesn't like to work. If you look on my left sidebar you'll see a twitter widget that DOES work so I can get updates there. Otherwise I'm praying there is wifi in the surgical waiting room tomorrow!

We're Here!

Other than an interesting landing --the kind where the plane is almost ready to touch down and it suddenly pulls up to a steep incline then makes a sharp-banked turn--the flight was uneventful. Oh, well and Dean kind of left me in security with four bags, two kids and one wheelchair, but we're all good. ;-) (he didn't know than when a security agent is rushing him along he can say, "You'll have to wait, I'm helping my wife and kids get all their clothing of, electronics out of bags, and everything sent through the scanner!" Next time sweetie.

Our flight landed at 2:00, and we waited to be last off the plane since they would be brining Axel's wheelchair from the planes belly anyway. So we finally get to the jetway and wait...and wait...and wait some more for the chair. Finally we decided that Dean and Angela would head to baggage claim and Axel and I would catch up to them.

So Axel and I waited.....and waited...and waited some more. There was another guy on the plane who was waiting for his electric wheelchair which wasn't showing up either. Finally the flight crew was making phone calls, and a guy brought us an airport wheelchair. "No. Where is OUR wheelchair? Can't miss it, since it's covered with American flags."

Hmmmm

After a good 20 minutes they realized that both our and the other guy's chair had been sent to baggage claim by mistake, so we waited for them to bring them back to us then made the loooooooooong walk to find Dean and Angela. Can I just say, I am *so* glad we bought this chair for Axel? It is a life-saver during long walks through airports, and will be completely necessary after his surgery.

My friend Colleen picked us up and brought us to Ronald McDonald House. (Front & Erie street for anyone who's wondering.) By the time we got settled and everything it was 5:00 so we decided to head to the room for a little rest. (don't say "nap" to Angela!) Angela and I both slept, Axel rested playing with my hand, and Dean watched TV.

At 6:00 we went down to dinner, then got a surprise for the kids. There is a great game room here pool table, ping pong, air hockey, fooseball...you name it. Angela loves airhockey and we knew Axel would here so we showed them the table. The played for about an hour and thoroughly enjoyed it!

While they were playing Dean and I chatted with a young couple who just had their first baby two months ago via in-vitro fertilization.  He was born with a tracheal-esophageal fistula along with amniotic banding syndrome, and just had a gtube put in not too long ago. They'll be bringing their baby home for the first time next week, and are quite nervous about the whole gtube thing. I remember that feeling SO WELL! I was able to give them a few ideas about how to deal with the tube to keep it safe (he still has the foley in and won't git a mic-key for a  month or more.) and just give them some general assurance that the tube really will be no big deal once they're used to it, and that when they get home they can finally get on with learning all about living with a new baby...their firstborn...and loving on him without the interference of hospital staff!

We finally brought the kids back to the room about 9:00, had baths and got the two of them...and myself...tucked into bed. ;-)

Today is a big day.