“A Special Little Place In Heaven Just For The Person Who Developed Valium & Versed”

I’ve said this many times…..There’s a lot I have learned I wish I had known earlier; the role of pharmaceuticals drugs being one of them. As I’ve written about before, by our 3rd cast Nora was really having a tough time with the entire casting process. She knew as soon as we got to the surgical wing of the hospital what was about to happen and she was scared and terrified and when it came time to have a cast trimmed or removed we went through an even more terrifying process. I’ve also written about the amazing help we found through a child psychologist and play therapy but I haven’t talked yet about drugs we have used that fall into the sedative category.

There is a big taboo around even the justified use of drugs like Valium and Xaxax, probably because they are also drugs that are abused often and have addictive qualities if not taken properly. Then you throw in the idea of prescribing these drugs to children, toddlers even… and people are often quick to judge and question and let fear take over . Heck even I did. When the idea of prescribing Nora a dose of Valium before any cast trimming or removal was brought up, I was initially frightened. Scared I could accidentally over dose her or she could have some crazy side effect, like stopping her breathing. But we were desperate, desperate to take that terrifying fear away from her. So we decided to try it.  It was incredible. It worked amazingly. It did just as her child psychologist said it would. It made her relaxed and just as though she didn’t care much. She still got a little nervous and cried for a brief second or two, but that was it. Since then we’ve learned to take her casts off ourselves so we bypass this entirely now for removal, but cast trimmings are always something we might face with each cast. I’m relieved to know we have this in the back of our medicine cabinet if needed.

Then there’s the drug called Versed. This little number was recommended to us at our third casting when Nora was terrified, crying and hiding in the play room on the surgical floor before her casting. This drug is a bit complicated though. It’s a drug administered only in the hospital before surgeries to relax a child and it also produces amnesia, so when they wake up they won’t remember what all went down beforehand. The downfall is some kids do not react well to this drug when they come out of anesthesia and are erratic. So it was a gamble. Nora was already one of the lucky kids who has an even tougher time than most coming out of anesthesia so the idea of giving her something that might make that part even worse didn’t sound like a gamble we wanted to take. So we sucked it up and dealt with a scared child beforehand who screamed and screamed while we held the mask to her face that made her go to sleep in the OR. It was very hard for Matt and I emotionally but we just did it. You do what you have to do.

It was at our fifth casting when our anesthesiologist recommended it again. This doctor was a straight shooter, former army doctor and very easy going, he told us he thought the chance of her reacting poorly on the other side was low and since we’ve been to this horse and pony show before we know what we are doing and how to handle a rough spell anyway. So we decided to try it.  This was a choice I wish I had made two casts before. I can’t explain how it felt to take my little 21 pounder to the OR and put that mask on her face and she was cool, calm and didn’t have a care in the world. As she laid there sleeping on the surgical table, I let out a huge sigh of relief. It was then the anesthesiologist said “there’s a special little place in heaven just for the person who developed Versed.” I couldn’t agree more.

IMG_5380

So if you are going down this road of casting, surgeries, and difficult procedures and your child is having a tough time and you are too…please ask your doctors about your options. They can make a big difference.

Advertisements

The Child Psychologist, Play Therapy & A Doll Named Scully

Through this blog I’ve had several parents reach out to me specifically about the psychological and emotional toll all of this might have on their little ones who are about to face some of the same things Nora has faced. So clearly now is a good time to share our experiences on this.

By time we got through cast number three, things had changed. In many ways, things had actually become harder, even as we hoped the opposite would be true. When we arrived at the hospital for that third cast, Nora almost immediately started crying and panicking when we were taken back into our pre-op room. Simply put: She remembered. This hadn’t happened before. She was upset and fearful of anyone in blue scrubs or a white coat. We spent as little time as possible in our room and spent as much time as we could in the playroom. Even in that “safe” environment, Nora would hide in the playhouse when she saw any staff come in to talk to us. It was an added stress for all of us that we weren’t expecting. Our nurses told us it was normal, that she was getting to an age where she can remember. We discussed some ‘pre-med’ options for our next cast that we would give her as soon as we got to the hospital to help her relax and, as they said, would make her forget the entire experience afterwards. It sounded like a great idea. However the drawback is some kids come out the other side of anesthesia more or less freaked out and have a tough time coming out of surgery. This doesn’t happen to all kids but some. So it was a gamble and Nora is already a kid who struggles more than most coming out of anesthesia. Things to think about…

We got through that third casting and made it home, but it was becoming obvious to me — after playing back in my head the responses to all the previous casts — that Nora was just not herself for about a week after each cast. She seemed as though she wasn’t trusting of people, very shy and nervous and as though she was just angrier at times, which was not generally like her at all. Now of course this is also very common in 18 month olds who aren’t going through anything. But how were we to know what was normal and what was a reaction to everything she had been through? We don’t have other kids to compare to.

cast 3I decided to trust my gut and reach out to a child psychologist at Children’s Hospital who works in the rehab medicine department. She specializes in kids who deal with things like long term medical issues, lots of hospital stays and long term recovery. I met with her without Nora the first time. She was wonderful. She explained a lot of basic child psychology things and how a toddlers mind works, etc. She explained that Nora’s reaction was very normal, but that didn’t mean we shouldn’t try to find ways to have her more prepared and help her through it all. She gave this example: Imagine continually waking up next to a fence and on the other side of that fence was a giant, snarling wooly mammoth wanting to eat you. Of course you would be terrified and would scream. That’s a normal reaction. But we can give you tools to help you deal with that encounter better –how to acknowledge there is a fence there to protect you, how you have the ability to move, etc.

So that’s what we did. We got tools. Her first suggestion was to get a play doctor’s kit –preferably with a saw, since a huge part of Nora’s fear was around cast trimming and removal — a larger soft cloth doll, and one of Nora’s old casts.

IMG_5406

We put the cast on Nora’s new doll who we named Scully. Scully, just like Nora, has scoliosis too. We talked to Nora and Scully about getting a new cast and also getting it off. We would tell Scully it was ok to be afraid and that it was a scary process but she’d be ok. We practiced examining her with all the doctors kit stuff, and we used the toy Bosch circular saw — the only loud saw toy I could find –and we practiced taking it on and off. And we celebrated with milkshakes, just like we do with Nora.

scully
At first Nora would say, “No, no!” She clearly didn’t want anything to do with it. It was clear it was a fear of hers. But soon she came around and was eager to ‘go get Scully’ so we could take her cast off and we could play. I really didn’t think any of this would work nor have any effect on an 18 month old. But once again, I was amazed. These kids understand far more than we give them credit for. We continue this play routine often, and it really has helped. Nora is now happy to show you her cast and Scully’s.

playing with scully
When Nora met with the child psychologist again, we did more play therapy with Scully and other toys she had in her office. We also practiced taking Nora back and forth to actual exam rooms and pre-op rooms –other places Nora has a big fear of. Nora was adamant she didn’t want to be in there. She cried and clung to me as best as she could. The doctor practiced examining Scully or putting a cast on or taking it off. After about four or five times of going back into these rooms, Nora relaxed and even became helpful with Scully. It was working! By time we were done, Nora was handling it all so much better.

The psychologist also practiced examining Nora’s cast and tapping on it up and down, shaking it a bit. Trying to somewhat mimic what it would be like when the casting saw would be out. Nora tolerated it but it was clear she didn’t like it at first. I realized at that point that I’ve never patted on her cast, like I would her back. I had always found a way to actually rub or tap her skin for comfort; I’d focus on her head or arms and legs. I always ignored the cast as much as I could. It was then I realized, I too, should tap her cast for comfort, and not to ignore it like we had been doing.

After our sessions with the psychologist and the continued play therapy, we really did notice a difference. It really helped. We got some children’s books too about getting casts, going to the doctor or hospital, etc. These books are some of Nora’s favorites now. She loves to point to the characters’ casts and hers while reading them.  We are still working on a few things, Nora still has a tough time with going to sleep at night for about a week after each cast, but I’m hoping with continued work and learning from others we will begin to find ways to help with this as well.

reading with scullyAny parent concerned about how their child is reacting to their casts, braces, surgeries, etc. –or if they are worried about how that first cast will go and would like some tools to try and help — I hope our experiences will give some ideas.

Here’s a list of key things to get:
Toy doctors kit
Toy saw – the best one I could find that makes a loud noise is this one
• A soft cloth doll or stuffed animal:

  • Use an old cast to put on the doll
  •  Put an ace bandage and duck tape around the doll or stuffed animal
  • You can even have a custom ordered toy with a replicated metha cast. You can order those from Mehta Casted Dolls FanCASTic Friends

• Books:

 

 

Day-to-Day Life in Plaster

We are currently on our fourth cast and boy have we learned a lot by now. Much of it I wish we had known sooner, but isn’t that often how life goes?

Nora adjusted pretty quickly to her first cast. It really wasn’t holding her back from doing anything. In fact, she was developing some serious baby muscles. When we would remove her knit-rite shirt, that’s worn underneath her cast, and she would flex and pull herself almost into a crunch and you could see a six pack muscle outline. I kid you not. Carrying around that extra 2 to 2 1/2 pounds on such a little body is making our baby buff!

Speaking of the shirts, changing these little suckers is not fun nor is it easy but we feel it’s a must with a busy toddler who’s into everything. There was one changing episode where I didn’t think I was going to be able to get a new shirt on. The cast was so tight and it was so hard to dig and squeeze my fingers in between to try and pull it down and into place. After about 20 minutes and a few breaks I finally got it.

We’ve figured out a sponge bath routine that to this day, eight months later, is still a dreaded task. She simply hates just about every aspect of the sponge bath and hair washing. No matter what distractions we have or how many pieces of bribing candy we have on hand, it doesn’t matter she hates the whole thing and screams and cries. She just wants in a big full bathtub. But even though she hates it and fights it, she has, in a way, come to terms with it. As soon as we are done she, all on her own, happily applauds herself and smiles and typically does her happy dance.

Having the cast trimmed or removed is an absolute nightmare. Unfortunately, after four casts we’ve had to have 3 trimmed for various reasons. Being too high under her arms, too low on the hips so she can’t move about normally. The sound of the machine and the way it shakes her entire little body while it’s doing its job is simply terrifying for her. The techs felt so bad one time they went to the hospital gift shop and brought her back a couple of stuffed animals to keep.

We’ve taken her to a closer branch of Children’s hospital just for trimming and removal and it got to the point where she was crying and pleading as soon as we walked into the hospital – she just remembered. Holding your child while they try and cut and tear away at the casting material while she’s crying… No, not crying – screaming, screaming sheer terrified help me screams is just awful. I’ve broke down crying right along with her.

But once she’s settled down after having her casts removed, every time she points to her belly and pats her ribs and has a look of wonder, joy and confusion in her eyes. These casts have become a real part of her and suddenly they aren’t there anymore. It’s almost awe inspiring to witness. With each removal we’ve spent a few minutes afterwards just taking it all in…And that includes endless hugs.

The cast removal appointment is a roller coaster of emotions. I can’t tell you how amazing and incredible it feels to be able to wrap your arms around your baby…Around her body, touch her skin, feel her body expand and contract with each breathe after two months of wrapping your arms around a hard plaster cast. It’s like Christmas morning to me. I can picture it and I can feel it right now as I write this…I long for it and I miss it so incredibly much. It’s one thing I often find myself jealous of. I see parents pick up their little ones and give them a quick hug like or a big huge snuggle. They don’t think twice about it usually, why would they? But I do.

So after a long hug and squeezing session in the doctor’s office our routine is to go get milkshakes on the way home as a reward. In fact, it’s become our routine for just about any doctor visit now. And once we get home its bath time. The excitement on her face when she’s in the tub and realizing she can actually splash and play is infectious. It’s impossible not to grin ear-to-ear.

These breaks from her casts are filled with more baths than you can imagine, almost daily trips to the pool, ooey gooey messy crafts projects, more hugs and snuggles. I’m beyond grateful for these breaks where we have a few days to live life like normal.

milkshake  crafts  pool

 

First Cast – August 14, 2013

This was a hard blog entry to write, resurfacing all the emotions and everything that happened that day is hard for me.  It was the beginning of a major change in our lives.  But while some of this is hard to read, it does end well and I must say we are so very thankful and grateful casting has been an option for us. 

We had to be at the hospital by 6:30am that day.  After getting all checked in we once again found ourselves in a little hospital room, with a little hospital bed, getting Nora dressed into a tiny little hospital gown.  So many nurses, residents, interns, anesthesiologists, physician assistants, casting technicians, and our own surgeon came in and out of that room going over much of the same things over and over.   It was pretty non-stop for a good hour, which was probably good as it didn’t give us time to dwell on things.  When we did have down time while waiting, we spent time in the playroom.  We didn’t even know this existed till we got there, but after all our visits since, it has proven to be a fantastic perk to the Children’s Hospital.  This playroom is full of toys, books, blocks, ride on toys, train sets..you name it.

While in the playroom, the anesthesiologist came in to talk to us a bit more, explaining that Nora would not only be put under general anesthesia but that she would be intubated.  The tube down the throat just like you see on doctor shows dramas and movies.  The need to intubate is basically because they twist, turn and apply a ton of pressure on her little body to get her spine corrected as best they can and into a plaster cast so with all that pressure and twisting they need to really protect her breathing.  However, she would be put under, at first, with gas and Matt and I would go into the OR with her and hold her while that happened.

first cast at hospital

When it was time to get started, Matt and I put on our hospital issued blue scrubs jumpsuit and caps to go into the OR.  The tree of us took a few funny photos together just to try and lighten the mood. The nurses came to get us and we gave her our fancy duck tape with pink flying pigs to be used on Nora’s cast and then we carried her down the long hallways to the OR.  The last time I had been in an OR was when she was born just 14 months before.  I was scared then too but this was so different.  It was a large room, so white, so sterile, and so many people in blue scrubs in there, way more than when I had a c-section.  We walked over to the operating table and to the right of it was the casting table.  My first thought when seeing this table was, it looked like a mid-evil torture device.  I had visions of her being tied to this thing and being pulled in every direction. Which frankly, is what they do.  I quickly had to turn away. I couldn’t look at it any more.  My heart was already racing, I was terrified and so many people were trying to talk to me and explain things.  Again.

casting table

I sat down holding Nora as the anesthesia team came over and placed the oxygen mask on her face.  Nora instinctually fought the mask and the gas.  She fought it hard.  Crying, screaming, pleading, trying to pry the mask off.  It was awful and it took at least a minute, which is a long time for something like this. But eventually her body became weak and heavy and she was asleep but there was still this faint crying, weeping sound I had never heard from her before, emitting from her tiny body.  It’s a sound and a sight that is ingrained in my brain and I will never forget.  My eyes well up just thinking about it and writing about it.

We laid her down on the table and the team told us to give her a kiss and tell her we love her and will see her soon.  I didn’t want to leave, I didn’t want to stop caressing her face and kissing her forehead.  I didn’t want to be doing any of this.  As the nurse took Matt and me out of the room there were tears streaming down both of our faces.  That experience was so difficult, so scarey, so many unknowns.  As the nurse walked us back to our room she comforted us and said, it’s very hard to see them fight so much and go to sleep, she assured us that part was harder for us than her.  She hugged me and told me she would take care of my baby.

When we got back to our little hospital room, Matt and I both cried more and just hugged each other till we were ready to take those goofy jumpsuits off and head to the waiting room.  I sat in that waiting room numb and nervous.  I had my rosary wrapped tightly in my hands and I just prayed… and prayed and then I facebooked.  Yep, facebook.  I had to kill the time somehow and find a little escape.  I was grateful for all the funny posts and stories I saw that morning.

Finally, our surgeon came out to tell us it well; they were just finishing up and taping her cast.  He went over a few details and said the anesthesiologist  would be out to talk to us soon.  We waited another 45 minutes or more till we were able to go see Nora.  When they walked us back to the recovery room, she was in the arms of a nurse, she was unhappy, she was crying and this cast looked ginormous.   As he handed her to me, I couldn’t believe how heavy she was, how thick the cast was, how stiff it was.  It was Plaster is much heavier than fiberglass be grateful  fiberglass casts for broken arms and legs my friends.  I was somehow delusional beforehand to just how stiff a body cast would be.  She was so upset and so confused and I didn’t know how to comfort her.  Her body couldn’t wrap itself around me in a big embrace; I couldn’t rub her back to comfort her like I normally would.  I hadn’t thought about this and suddenly I didn’t know what to do.  I was scared; I didn’t know how I was going to be able to handle this as our new normal.  Panic started to hit me and I had to give her to Matt to hold and try to calm her. Nothing was working to calm her, understandably.

first cast at hospital - matt

We had a whole team of nurses and doctors coming to check on us and try and help get Nora settled.  She was unhappy with everything, including the IV in her hand.  She was constantly trying to pull it off.  The nurses finally said her vitals were ok and they could remove the IV and we moved back into her hospital room.  She wasn’t happy there either.  She wanted juice, then she didn’t want juice, she wanted popsicles, then she didn’t.  We found walking the halls was the best we thing we could do to keep her calm.  Matt and I took turns carrying her around.  She was heavy.

We still had to get an x-ray.  They wanted to see just how much correction they were able to get with her in the cast.  After a good hour or more we made our way to radiology.  Forcing her to stand in a position she didn’t want to for her x-ray just upset her even more.  It was becoming clear at this point she didn’t want to see anyone in scrubs. We soon learned that before her cast was on her curve was at 58 degrees, in the cast they were able to correct it to about 37 degrees.  This was great news.

Nora x-ray - first cast 2
(look at that correction in the cast!)

As we made our way back to her room, she was still so unhappy and I noticed her left arm and hand seemed red and slightly puffy.  The nurses took a look and didn’t know why.  They called to have a resident come down and look.  Of course that took awhile and I was starting to get nervous.  We also noticed at this time the cast seemed too high under her arms and she couldn’t put her arms down very well.  They told us we would need to trim her cast.  They also said that first casts can be tricky and trimming isn’t uncommon.  They finally determined her hand was ok but it was time to trim this cast.

She was very leery of anyone coming near her, she didn’t trust anyone.  And now there were five doctors and nurses in our room ready to trim this cast.  This became the worst part of the day. By far the worst and the hardest part of the day.  We laid her down on the bed, she’s screaming.  The cast trimming and removal machine was turned on.  Anyone who’s ever had a cast taken off knows it’s loud.  The entire team and Matt and I are holding her down…pinning her down while they cut the thick plaster cast and the padding around it under her arms.  It was taking an eternity and my sweet baby is screaming terrified, “help me!” screams.  I was losing it.  I looked at Matt, scared, mad, angry and terrified myself.

While holding her down and trying to soothe and reassure my baby while simutaneously trying to help the team cut and tear away at casting material, I started thinking of a scene from the movie Terms of Endearment.  It’s a scene where Shirley McClain’s daughter is in the hospital in dire pain waiting for her pain shot that she has to wait till 10:00 for. It’s finally 10:00 time but the staff isn’t bringing it to her, Shirley’s character asks nicely several times and no one’s bringing the shot.  Soon she’s running the halls screaming “Give my daughter her shot!”  Here’s the clip from that scene  http://youtu.be/plqzeUB9B-w

I felt just like that.  I wanted to scream, “Stop! Enough is enough!” I was fighting it so hard.  Looking back and knowing what I know now, I wish I had said stop and figured out a new strategy.   When it was over Nora was exhausted, exhausted from all of it.  She collapsed in Matt’s arms, so happy to have her dad comfort her.  We were all exhausted.  Thankfully, we got to leave about an hour after that.

car seat image

We were happy to be home, but we were very nervous.  Nervous on how to handle all this, what to expect from her and how to adjust, she was still sleepy from anesthesia and the trauma of it all.  We all laid down to take a nap together, but I couldn’t sleep.

Shortly after her nap she wanted to walk around and do the things she had before but she was a bit uneasy on her feet and was still adjusting to the weight and position of her torso. She had a couple spills, but soon figured it out.  But she wanted to be left alone much of that afternoon.  It was as if she didn’t trust anyone. Who could blame her.  That, too, was very hard for me. Not to be able to comfort your child when they need it the most.   There were so many tears that day.

That night she slept in our bed with us.  It was a restless night and we soon realized how cuddling with our child had changed not to mention sleeping with her too.  Getting hit or bumped with that cast hurts.

The next day, Nora was back to being Nora.  It was amazing!  She was laughing, bouncing around, adjusting to her new hardware.  And we were adjusting as well to all the new challenges we faced.  It’s really true, kids are very resilient and adapt so much better than we adults would.  It was incredible to see how quickly all-in-all she adjusted.

unnamed

This video below was taken about 4 days after she got her cast, for anyone out there worried about how their little one will adjust and handle having a cast on, you have to see this video.  This will make you smile, laugh and feel some reassurance that your little one will be ok. This, in part, makes it all worthwhile.  http://youtu.be/ueeOTdRFt2o