It's been a while - part 3: Hip Surgery

Yes, we scheduled it, the dreaded hip surgery.

We went to see the Orthopaedist and he said Sadie needs the osteotomy.  That's where they cut her femur and actually remove a chunk to re-angle her hip sockets.  It sounds pretty intense and I'm not looking forward to it.

The doctor said that normally he likes to wait until kids are at least 4 years old before doing this surgery, but that since Sadie is so huge, he doesn't mind doing it on her so young.  So, I guess that crazy hormone rush growth spurt is sorta good...although I'm pretty sure her hips are so bad because of the growth spurt in the first place.

I've talked to a couple of other moms who have been through this surgery with their girls, and the biggest thing I keep hearing is pain management.  Sadie won't be casted or anything, so I won't have to worry about that (thank God), but I have been told that muscle spasms can be pretty harsh.  I had (a different kind) major hip surgery when I was 19 and I remember the doctor had to cut through the nerves to do what needed to be done.  I still have weird nerve sensations on that leg.  For a long time there would be shooting pain as my nerves worked to heal and feeling was coming back.  It was very uncomfortable...and I imagine it'd be something similar that Sadie will experience.

We'll stay in the hospital a few days (hopefully not too many), then it's up to 6 weeks of recovery at home.  Being an online teacher, I really only get 3 weeks off in the summer, those 3 weeks will be spent doing this.  June 24th is the first Monday of my break and we'll be showing up to Phoenix Children's Hospital bright and early that morning!

Pray for us, wish us luck, whatever you can do helps!!

I'm terrified, but I'm trying to be positive and proactive in that I want this to rocket us forward in her physical abilities (like sitting), instead of set us back, like I've heard that it can do.

The Spasticity Clinic - Our Second Visit

If you read my last post about Sadie's latest Ortho appointment, you'd know the drastic news we were given about her hips.  This morning we visited Dr. Kwasnica again (she's the one who recommended the hand splints) and continued the conversation.

I told Dr. Kwasnica what Dr. Segal said (they are colleagues and know one another well) and she was as shocked as I.  However, she later said that he must really mean it to recommend surgery to a child as young as Sadie.  She said that Dr. Segal is usually cautious about recommending drastic measures, so we should probably take him seriously if that's what he's saying about a child as young as Sadie.

We also talked about, in the meantime, trying Botox injections in her adductors and then having her wear a brace.  Dr. Kwasnica agreed that if we have to wait for surgery anyway, we might as well do something in the meantime.  She said it would help us with diaper changing, and it would stretch her tight hamstrings.

But it's not going to prevent surgery.

So we made an appointment in the beginning of November to do Botox.  Then we will be fitted for a brace, that she will probably wear at night, to hold her hips apart and provide prolonged stretching.

And we will probably move to schedule surgery next time we see Dr. Segal.

Update on Sadie's hips-The Orthopaedist again

I'm discouraged.

We visited Dr. Segal today, like we do periodically, to take X-rays of Sadie's hips and discuss the progress of her socket development.  (here's the background about this  And here's the information about our last visit) It wasn't very hopeful.

First, the good news...

Sadie's feet are okay.  She only needs to wear the AFOs (ankle/leg braces) in the stander for now.  Once she starts school she'll probably wear them the whole time she's at school.

Her spine is okay, and her hands are good.  We are going to switch to wearing the hand braces at night, because she wants to use her hands more and more and the hand braces sort of inhibit her.

But her hips are getting progressively worse.

Dr. Segal looked at me gravely and told me that he doesn't think Botox would be enough help, and that snipping her adductors probably wouldn't even be enough at this point.  And he's concerned, because she's only 2.  He's changed his recommendation at this point to major surgery, he called it osteotomy.

Here's an example of what we have going on.  Sadie's hips SHOULD look like the left side.  But instead, they look like the right.  Well, hers isn't dislocated yet, so it's still in the socket, but it's straight like that.

What the surgery would do is cut her femur in 2 places, remove a big chunk and TURN that top part so that it's angled correctly like you see on the left.  Pins would be placed in her bone, no casts, but at least a 6 week recovery (that WOULD set her back some in her physical therapy skills), then pins removed during an outpatient procedure.

Sounds drastic, right?

And then he tells me he is even more concerned because he doesn't like to do this surgery until kids are at least 4.  I told him the earliest we could even CONSIDER something major like this in our lives would be next summer anyway.

He is worried that her hips will start dislocating and she'll be in pain.  What do you even say to that?  Nobody wants their child to be in pain, right?  I mean that's basically telling me that if I don't choose to do this surgery I'm basically subjecting my poor child to pain that is unnecessary.

In the meantime, we see Dr. Kwasnica next week and we are going to discuss Botox with her.  I still really feel like if we can loosen those tendons (temporarily) and use that time frame we have when the Botox is effective to stretch and widen those hips, we can maybe at least buy her some time.  I know in the back of my mind that this surgery IS inevitable.

So, that's the story.

It's discouraging.

I'd really appreciate any stories of success from anybody whose child has had this surgery...I hope there are some.

Sadie's new G-button

Monday morning, bright and early, our little family headed to Phoenix Children's Hospital (PCH) for our baby to undergo a Gastrostomy. This is the formal name for G-tube surgery. She's had her NG tube (in her nose) for 10 weeks and it's been a really good thing for her. Just days after getting her NG tube, she stopped screaming all day, started sleeping all day and napping, and was just all-around a happier kid. Plus, in that 10 weeks that she's had it, she's gone from barely 18lbs to over 23lbs!! But there are negatives that came with the NG tube as well...first of all, we had to tape it to her face, so it was unsightly. She was learning to grab it and pull (I think because she got immediate feedback when this happened), so we were having to replace it almost daily. Because it went in through her nose and down the back of her throat, she sneezed a lot, gagged when she ate, and if she threw up, it just made it worse because the tube would come up with all her food! Needless to say, we were ready for the G-tube.

To do the surgery, from what the doctor and nurses told me, they put a tube down her throat with a scope, then they go in through her belly button to inflate her stomach and stretch the skin, a little incision is made (it might be more like a piercing) and the tube is placed. On top of the tube, on the outside of her belly is a little valve called a "button" and underneath, on the inside of her tummy, is a balloon that inflates with water to hold the tube in place. The picture below is what one looks like "uninstalled" so you can get a better idea.

So, we went in early Monday morning, surgery was scheduled for 9:30, we had to check in at 7:30, Sadie had had only clear liquids since 12:30, and NOTHING since about 5:30...and we sat. And we waited. And we waited some more. I think we waited in Pre-Op for an hour and a half. Luckily we had the ipad, so Sadie was able to watch Sesame Street while we waited and that made her happy.

When the doctor finally came in, he asked if we had any questions, he signed a bunch of papers, and he marked on her belly where he thought was good placement and he initialed it to make it official.

The surgery took less than an hour. We walked out of Pre-Op right at 10:00 and were called back to recovery just before 11:00, and we noticed that they tend to wait 10-15 minutes once they've had the patients in recovery before they call the family. When we saw her she was still asleep, we peeked at her belly and were actually surprised at how small the button was. I don't know what Brian was expecting to see, but it was probably similar to what I thought: oozing bandages indicating that she'd be really sore for days. But it wasn't like that at all.


She sort of woke up a couple of times, just opened her eyes and looked around. We kissed her and talked to her and let her know we were there and we love her, and then she'd close her eyes again and go back to sleep. We had to sit there until they had a room for us, which didn't take too long and before we knew it, we were off to the 3rd floor.

I had asked that when we get to our room there be a bed there instead of a crib so that I can sleep with Sadie, but we had been quicker than the guy bringing the bed, so we transferred Sadie to the crib from the surgery bed for the time being. That really woke her up. Then like in 2 minutes the guy brought the bed so we had to switch her again. This time I had to hold her for a little longer while they rearranged things, and I think I irritated her button, because it was bleeding when we put her back down. And then the pain kicked in.

She was so sad. I don't think I've ever seen her in pain like that before. They had to give her Tylenol as a suppository because nothing was aloud in her stomach. She was receiving IV fluids to keep her hydrated and that was it. The Tylenol seemed to work and she slept some more throughout the day.

However, she didn't sleep much during the night. I think part of it was being in a different environment, but a lot of it was the little boy we were sharing a room with. He didn't feel well and screamed all night long. Plus then his machines would beep when he'd get upset. It was annoying and sad and exhausting. But Sadie hardly complained. She was calm and the next morning actually pretty happy.

The nurse told us we could try to feed her orally the next morning, but Sadie's stomach couldn't really handle it, so she threw it all up. Instead we started her on a slow drip through her new tube of just Pedialyte. She did better with that. And from that we graduated up to her regular Pediasure formula. Once she did that okay, they let us go.

We were home by 5:15 and Sadie and I were really glad to be here. While Daddy made dinner, we took a bath and washed the hospital stink off. We decided to have Sadie sleep with us because we didn't know how much maintenance she'd be in the night if she was in pain, or if her tummy didn't tolerate her night feed. Sadie and I went to bed around 8:00 and we both slept hard. I got up around 6:00, but it's 7:30 now and she's still sleeping. I'm really glad we didn't have to even give her Tylenol in the night or anything. She was awesome. And now begins our life as a tubie.

PS. that pretty thing around her tube is one of my homemade G-tube pads. It's to keep the gunk off and keep her skin dry, and it's MUCH prettier than gauze! You can learn more about them or how to order some at the top of the page by clicking on the different tabs.

Prayers for surgery

Sadie's G-tube surgery is tomorrow morning at 9:30. I am so excited that this is our last day with the NG tube. Yet, at the same time, it's a little scary that they'll be cutting my baby. I know it's a standard procedure and this doctor has done, like a million of these surgeries...but there are always risks.

So, please pray for Sadie that she would be safe and that the surgeon and his team would be guided by wisdom and have clear minds while operating on my child. Please also pray for Brian and I that we would be able to deal with Sadie once she comes out of the anesthesia. Sadie also doesn't deal well with pain, so I'm a little concerned with how the next week will go. And to add to that, school starts for me on Wednesday. Just pray pray pray.

Here's a cute picture of Sadie's belly...after tomorrow it'll never look like this again. (but doesn't it look so fat and healthy?)

Sadie's first Surgical Consult

Sadie and I had an appointment yesterday to see a surgeon about placing a G-tube. This would mean surgery to cut a hole in the lining of Sadie's stomach and placing a tube there for her to be fed through. It would replace the tube that is currently in her nose. Our reasons for wanting this so quickly are threefold:

1. Upon getting this tube, the results have been so immediate and so positive that we know continuing to feed her this way (while continuing to slowly learn to eat orally) is the best thing for all of us.

2. We have accidentally ripped the tube out of her nose and off of her face more than twice in the 3 weeks she's had it. Also, she has learned to find it and pull on it, which only makes her mad, but she isn't coordinated enough to figure out how to open her hand and let go!! It's kind of funny, and kind of sad.

3. By using a G-tube, as opposed to the NG tube we have now, we can start to blend real foods and give her those instead of just the Pediasure formula we are limited to now. The reason for this is that the G-tube will be larger in diameter and allow for thicker consistencies to be passed through.

Dr. Notrica was very nice and had a lot of positive things to say about Sadie. After a quick examination of her, he exclaimed that she looked "well taken care of." I chuckled and told him that's like what you say about an old car that you're looking to buy! He laughed and told me that they see a lot of children who come in and are dirty or rashy and you can tell their parents just don't take good care of them. He told me that it is obvious that Sadie is well-loved. He also went on to say that she is very pretty, which I always love hearing.

Dr. Notrica didn't seem to think it was a problem to get Sadie scheduled for surgery before we leave to go to Eugene. But, when we went to the scheduling desk, I was told we have to wait for insurance to give approval before we can schedule. Most of the time I am so thankful for insurance, but they are really teaching me patience!! So, now we wait for the call to say it's been approved, let's get her on the schedule!

Here is a video about the Mic-Key button like Sadie will be getting. The first part of this video is very good and shows exactly how it works. After that, you can stop watching.

I also think this mom does a really good job explaining and showing everything.

NG follow up

We saw Dr. Wendy yesterday to follow up on Sadie's NG tube placement. I love that we have such an awesome pediatrician because not ONCE did we see a G.I. doctor in the hospital, and our follow up isn't until July 13...almost 2 months after Sadie's admission (May 22). But our pediatrician, who is super busy and I couldn't schedule an appointment with, squeezed us in at 8:30 in the morning on a Monday.

She was pleased with everything I had to report. And Sadie weighs 20lbs 7oz!!! I told Dr. Wendy that Brian and I had discussed it and we feel like since this tube has been such a positive thing for Sadie that we should start talking about a G-tube. We feel like this is going to take more than a couple of months before Sadie will be able to eat enough to sustain her own growth, and rather than prolong the misery of throwing up her tube and having to re-insert it, or risk the danger of ripping it out everytime we pick her up or move her somewhere, we'd like to just have the surgery to place the G-tube. I am also very interested in getting Sadie nutrition from real foods, and not just pediasure, and to do that she needs the G-tube. Dr. Wendy said she completely agrees and she'll push the referral through right away.

We have a surgical consult scheduled for Friday morning of this week.

I will keep you posted as I have more information.