Seven Snippets Sunday - Short and Sweet

 

 

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 Tomorrow morning, at 8:00am, Tennyson gets her casts removed. I can't believe it has already been a month. I can't wait to give her a bath and see her move her legs again. I'm sure it will be uncomfortable for her at first, since she hasn't moved her legs or used her muscles in a month. She has had such an awesome attitude throughout everything she has been through in the last month. I'm really proud of her.

 

---2---

 

 No, I will not be saving her casts as a souvenir. I'm looking forward to never seeing those casts again. Ever.

 

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 On Friday, Tennyson's friends and teachers at school decorated her casts. Pretty darn cute, right?

 

 

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 I can't wait to give back the giant wheelchair and special Hippo car seat tomorrow. I can't wait to not have to load Tenn into a wagon padded with pillows to take her anywhere. I'm looking forward to being able to put pants on her. I'm also looking forward to her getting to go back to school full time, starting physical therapy again, and not having to answer peoples questions about how she "broke both her legs".

 

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My one year blogging Anniversary is in one month!  Giveaways will be announced soon to celebrate the big day! Stay tuned.

 

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Tomorrow I'll be 27 weeks pregnant! One more week until the seventh month and 3rd trimester starts! I don't think I have shared a pregnant picture here on the blog. This was taken on Halloween. I have my gestational diabetes test this week and a growth scan to make sure Baby Girl is growing on schedule.
 

  

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I promise that I'll be blogging more than Sunday Snippets and Pregnancy Updates soon. I know it's been a little slow and lacking substance around here, but hang in there. It's been a crazy month.

Amy

 

tennsense@gmail.com

Seven Snippets Sunday - Surgery Update

 

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I apologize for not posting recently. This past week was a busy one for us. Tennyson had a few rough days at the beginning, but she has been an angel for these last three days. Two weeks down, two to go. We're finally in a good routine, and she's back to sleeping well.

 

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I have been pleasantly surprised at how quickly Tennyson has healed and adjusted to the casts. I had prepared for her to be out of school for at least two weeks, but she started back this past Wednesday. She went for two hours the first day and did well, so she went for four hours on Thursday and Friday. She loved getting out of the house and seeing her teachers and friends. I didn't want her diaper to show, so she got to wear skirts and dresses. She looked SO adorable.

 

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The beanbag has worked out OK. Somehow the bag I put the beans in tore and so we have been leaving a trail of beans wherever we take it. How annoying. We sent Tenn to school with the beanbag chair in the wagon, and while she looks like a little princess being pulled into school, it really isn't supporting her the way she needs it to. We'll have to try something different tomorrow when we take her to school.

This is what she looks like rolling into school (she's out on a walk in this picture, she goes to school in a skirt or a dress).

(the blanket under her knees is to make sure she doesn't have too much pressure on her heels and get pressure sores)

 

---4---

 

Tennyson is completely off her medicines she went home from the hospital on. I anticipate we will need them again once her casts come off, but for now, it's been wonderful to have her sweet personality back. The meds made her so sleepy. Her eyes would roll around and she couldn't stay awake long enough to focus on anything.

 

---5---

 

I have another set of hands in the house! Tennyson's Aunt T moved in this week. I am beyond grateful that she moved across the country to live with us. We are so happy she's here, and Tennyson adores her Aunt T.

 

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Aunt T and Tenny on a walk. She has loved every opportunity to get out of the house.

 

---7---

 

Tenny's cute outfit on her first day back to school. She's not a fan of the camera flash, so her eyes are closed - oh well, still cute!

 

 

Amy

 

tennsense@gmail.com 

Surgery Update - Day Three

We are home!

Tenn slept great last night. Our nurse stayed on top of her pain medicine and it made a huge difference. She fell asleep around 10:30pm and woke up at 8:00am. The night nurse had blond hair, that was pulled back in a ponytail, so I think she thought it was me each time the nurse came in to take vitals. She fell right back to sleep each time.

The doctors came in at 5:30am for rounds (seriously, who functions that early!?), and said she could go home. Her discharge orders were in by 9:00am, but we still had to wait for a special carseat (called a "Hippo" by Britax) to be delivered.

Tenn was really annoyed by anyone and everyone who came into our room today. To be honest, so was I. We were both ready to get out of there.

The carseat came, and then we were upgraded to an even bigger wheelchair so the carseat could fit in it. Awesome. I wish I would have taken a picture of them wheeling her out. However, it didn't seem appropriate to take a picture of her crying, and I wanted to get the heck out of there.

I had anticipated leaving in the afternoon right after my doctors appointment, but then they handed me her discharge orders - with paper prescriptions for pain medicine.

{short backstory} - Last week, I called her doctors office to get her pain medicines filled ahead of time so I would have them when we went home. The nurse assured me we would be sent home with them. This has never happened. Ever. We have never been given meds to go home with. We always get scripts to take to our pharmacy after she gets home from a hospital stay. I guess it was too good to be true. I should have asked about this yesterday, so our pharmacy could have had the meds in stock for us. Lesson learned. Oh well.

I called our pharmacy to see if they had them in stock, but of course, they didn't. So I had to go have them filled at the hospital pharmacy. We didn't leave the hospital until 6pm.

Tenn was exhausted and slept the entire car ride home. She woke up when we pulled in the driveway. I said, "We're home!", and she gave me a big smile.

Amy

tennsense@gmail.com

Surgery Update - Day Two

Overall, today went far better than I had prepared for. Tennyson slept very well last night in between nurses coming in to check vitals. Around 2am her nurse let me know she had a fever. I was surprised because she has been getting antibiotics in her I.V., but the doctors who did rounds this morning (at 5:30am!) weren't concerned about it and said it was normal.

She was downright giggly this morning when she woke up. I can only attribute it to the dose of pain medicine she received around 6:00am. She also got some Tylenol, which brought her temperature down quickly.

I had to leave her around 9:00am to go to my ultrasound downstairs in the Women's Hospital. It was a quick appointment and I was able to get back within 45 minutes. As the morning went on, she became more irritable, which was what I expected. She cries every time the nurses come in.

After each dose of pain medicine, she took a good nap. When she slept, I slept. So, we both got three good long naps in today.

She was fitted for a wheelchair rental that will go home with us. They brought an adult sized wheelchair. I asked them to bring a pediatric wheelchair, but it was too small. So for now, she gets a big wheelchair. We might be able to use a wagon once we get her home.

I'm still trying to arrange for a car seat that will be able to accommodate her lovely new casts. Hopefully, we can go home tomorrow afternoon. I think she'll be more comfortable and we'll be able to figure out a good routine for her.

They handed out balloons today and I couldn't help but laugh at what her balloon said on it.

Amy

tennsense@gmail.com

Surgery Update - Day One

Well, today was surgery day for Tenny. The past few days have all merged into one really long day for me. We came up to Chapel Hill last night since we knew she'd be one of the first ones to go today. After we checked into our hotel we went out to dinner together and I had such a fun time with her. I tried to soak it all in, knowing I might not see her happy for quite a long time.

I could barely sleep last night, worrying that I would sleep in and miss the surgery altogether (even though I set up a wake up call and set an alarm). We woke up around 5:45am and Tenn was already cranky. I don't blame her. It's no fun to get up when it's still dark outside.

We arrived at the hospital and checked her in. They sent us up to surgery and we only waited for a few minutes before they called her back to start getting her prepped. I talked to the anesthesiologist, the resident anesthesiologist, the nurse who would be with her, her doctor that would be performing the surgery, and his two residents. After that, they took her vitals, did a weight check and she was ready to go. They asked if I wanted to take her back. I've done that one other time, and knew we would both do better if they just took her. I watched them walk her back and she was so brave, she didn't even cry, but I'm sure she was scared.

The surgery took about 2 hours, so I went and ate breakfast and then sat in the waiting room until they came to tell me she was done. People have some crazy conversations in hospital waiting rooms. I was happy to see her doctor when he came in. He wasn't smiling and I instantly started to panic. I think he could tell and he told me right away it went great and she was doing fine. He said she had minimal bleeding, but to prepare myself for how wide her legs were casted.

I waited a few more minutes and was called back to the recovery area. She actually sounded good. She's usually really hoarse from the breathing tube, but not this time. They called me back because she was holding her breath a lot while crying. I could hear her even before I saw her. They couldn't tell if she was in pain, scared, or mad. I was guessing it was a combination of all three. It's hard to for me to figure out exactly what her cries mean when she's waking up from anesthesia. She was definitely holding her breath a lot so I attributed it to pain. They tried quite a few pain meds and she was still crying and holding her breath, so she had to have the oxygen mask on. I think this made her even more mad. She was covered in blankets so I didn't see her casts right away

I even bought cute socks and slippers....oh well

She stayed in recovery for over three hours. She cried for most of that time, but soon I was able to comfort her and she slept a little. I peeked at her casts and was surprised at how far apart her legs were. I also hadn't anticipated her feet would be included.

She took a second nap after they moved her up to her private room and I took the opportunity to go grab our bags from the car and get something to eat. They started her on pedialite, but she threw up. I was able to clean her up and put a shirt on her.

I was a little nervous earlier this evening because she started to have spasms that looked similar to her myoclonic seizures. I wasn't sure if these were the muscle spasms we were warned about, or if she was actually having seizures. I asked the nurse to call her doctor to come tell me what he thought. He was certain they were only muscle spasms, but increased her valium to help calm them.

Thank goodness for Kipper the Dog

I anticipate a pretty sleepless night, but know tomorrow will be better. She's still pretty upset when she is awake, but they are giving her pain medicine around the clock.

Amy

tennsense@gmail.com

19 Days and Counting (until Surgery)

On Monday, Tennyson had an appointment with her Orthopedist. He has been following Tennyon for about a year and a half and he sees her every 6 months or so. He mostly monitors her hips and spine. Kids and adults with CP often have trouble with their hips. This can mostly be attributed to the fact that they don't bear weight normally, as well as muscle tone issues.

When we arrived at the appointment they took her back to get an x-ray of her hips. This was the first time I couldn't go with her since I'm pregnant. We waited and waited and waited. Two hours later, we finally got to see the doctor. The x-rays weren't good. He had brought in her x-rays from last March to give me a visual on how bad her hips have gotten, just in these last few months.

Her hips are not fully in the sockets. In fact, they are nearly dislocated. Each hip is about 70% out of the socket. There are a few reasons for this:

1. Tennyson does not bear weight on her legs. Typically, as a child learns to stand and walk, the ball of the joint "carves out" the hip socket and fits snugly inside of it.

2. Her muscles are very tight. Both her adductor muscles and her hamstring muscles are restricting the hip from being able to move fully into the hip socket.

Your adductor muscles are located on the inside of your upper thigh (where you groin is).

If your adductor muscles are tight, it can pull your legs together (and thus your hips away from the socket) and it can cause "scissoring", or criss crossing of the legs.

She needs to have surgery to correct the problem. It's been scheduled for October 16th.

She will have bilateral adductor release and bilateral hamstring lengthening surgery. I'm not going to lie, I'm not happy that she has to go through this surgery. She's pretty young to have this surgery. It's a soft tissue surgery. So no bones will be involved. The hope is that once these muscles are cut and "released" the hip will be able to move fully into the socket. Her doctor said that 65% of kids who have this surgery won't have to have the bone surgery later on and this solves the problem.

That's not even the crappy part!

She has to be in full leg casts for 3 weeks following the surgery! Followed by an additional 3 weeks of removable braces. She'll look something like this (although I anticipate her legs will be stretched much farther apart in a "V" shape):

 

She'll have enough room for me to put a diaper on her. I haven't yet figured out how I'm going to dress her. I think I might have to cut pants and shorts and put snaps on them so they can fit over the bar. And then there's Halloween - I'm going to have to get really creative with her costume this year.

 

She'll be in the hospital for about 3 nights. I've read that it can be a painful surgery, followed by muscle spasms. I pray she will recover quickly and with as little pain as possible. The doctor said she should be able to return to school after about a week.

 

I'm still mentally preparing for this next "adventure". If you are a parent who has gone through this surgery with your child, I'd love to hear from you!

 

Amy

 

tennsense@gmail.com