Showing posts with label conscious sedation. Show all posts
Showing posts with label conscious sedation. Show all posts

Monday, August 1, 2022

3 Big Events All In One Week

Here it is the first day of August and one thing is certain: last month was a busy one! Both Faith and I had some important appointments, plus she had her 6-month evaluation for her day program. It's so hard to believe she's been there for half a year already.

Faith at the Sock Hop at her day program
 

The Day Program is one of her favorite things in the world. She loves going and I'm so glad they love having her there. She is a bright light and full of joy wherever she goes. She is also full of encouragement, which I believe is one of her God-given gifts! But besides going to her day program and therapy, Faith had some other major events - all of which take place the last week in July!

Big Event #1: Our First Baseball Game

The first was attending our first-ever Bismarck Larks baseball game. We didn't just attend, though. We both got to go on the field where she placed the ball on the mound and then announced into a microphone, "Play Ball!" This opportunity came about through Kids in Motion, where Faith goes to therapy twice a week. They had asked if she wanted to take part and she exclaimed, "Yes!" 

My contact person from the Larks told me I would get 4 free tickets in accessible seating. It ended up working out so that my sister, her husband, and one of their sons (who plays baseball) were going to be coming up from Nebraska so they were able go to the game with us! 

At the ballpark, while making our way to the entrance, I was totally surprised when a Larks fan saw Faith and took off his jersey and gave it to her! I couldn't believe his kindness and generosity! We then found our contact guy, found my sister and her family, and then went onto the field near third base by the team's dugout to get our directions on what to do. 

Faith had to go to the pitcher's mound, deliver the baseball, and then go back to our spot by the dugout while they sang the National Anthem and made team introductions. After that, I had to wheel her back to field. The guy with the microphone explained to her that he was going to count down from 3 and then she was could yell, "Play Ball." She was so excited though, that she didn't wait until the countdown was done! 

Hanging out with the Graffs on the field before the game.

Faith got to put the ball on the mound!

Afterwards, we made our way to our seats. We had never gone to a baseball game together and I honestly didn't think she'd make it through all 9 innings. She totally surprised me by maintaining her enthusiasm until the very end! It helped that the Larks were winning and there was a lot of music, dancing, and cheering. Plus, the Larks mascots came by quite often, giving her a high-five every time.

I have to say I was totally impressed with every aspect of the Larks organization. Not only was the accessible seating in a good spot, but everything was completely accessible. Even the little gift shop had a temporary ramp placed over the door's threshold so I could roll Faith in there. Besides Faith, there was another little girl with special needs who, with the help of her sister, got to make her way around the entire baseball diamond in between innings. I really liked their show of support for the special needs community. 

Having a ball!

Faith loved Merrifeather Lewis!

Faith and Preston in their "22" Larks Jerseys.

Preston getting an autograph.

After the game the entire team stuck around to give autographs. Faith got one autograph while her cousin went all out and had every player autograph the jersey he had tried so hard to win! It was a really fun evening and the weather was perfect at just 78 degrees. Right after the game, we headed home and got ready for the next day.

Big Event #2: Botox Injections at the Hospital 

Despite needing to be at the hospital at 8:30 a.m., Faith wasn't actually in the operating room until 10:30. One part of the delay was getting the right size sling for the lift to transfer her from her chair to the hospital bed. As they were getting her into the sling and then getting her hospital gown on, it was all I could do to jump in and do it for them. I had to remind myself that this was their job! 

Faith has had Botox in the past but it didn't seem to last very long for her. Also, at that time, she wasn't put under for it, so it ended up being a very traumatic experience every time she did it. I just wasn't sure it was worth putting her through all that trauma and then not gaining very much from it. 

Her physical therapist, however, strongly recommended that we try it again to see how she responded. It was her hope that she would be able to tolerate her foot orthotics for longer periods of time. Plus, it would allow them to work more with her legs in order to increase strength and range of motion. I was hoping it would also help her be more comfortable in general.

Faith at Kids In Motion with some of her OT/PT team

Faith with her favorite nurses for her History and Physical the week before her procedure

 The procedure itself took just over an hour. When I went to the recovery I could tell she didn't feel well and asked the nurse if she had thrown up. She said she did a little bit but they were able to suction it out of her mouth. I was a little surprised she got sick, especially considering how well she had done last summer when she went under for her dental work. But I also knew that considering where she was in her monthly cycle, it was normal for her to experience some nausea around this time of the month. 

It took her a while to fully wake up. They kept her there a little longer just because of her nausea plus her blood pressure was a little low. Finally, though she was able to go back to her room. Things looked promising when she ate some graham crackers and drank some juice. After checking her vitals three more times, they said she could get discharged. This time there was just one nurse and she was pretty busy so I said I could get her dressed. 

We got home around 2 in the afternoon. I tried to do a very watered down feeding at a slow rate to see how she did. She immediately became nauseous again. She told me she wanted to get out of her chair and sit with me on her bed. 

I think part of the issue was that she was feeling sore where they had done the four injections. I tried to talk her into laying down with me, but she refused, most likely because her tummy was upset. So we sat on the bed together for over an hour. I just sat in the most comfortable position I could and rocked her in my arms. She even fell asleep for about 10 minutes. 

She eventually seemed better and wanted to sit back in her chair. I gave her water through her tube and had her drink some juice from a straw. Later that evening, she asked for a feeding and I knew she was past the worst of it. Before going to bed, she asked if she was going to her day program tomorrow, and I told her she could. The doctor had told her she could back into her normal routine the next day. 

After sleeping for 10 hours, I was surprised when she woke up and didn't want to go to her day program. She said, "I just don't want to chance it." I knew she was afraid she was going to throw up again so I told her if she's not up to it then she could stay home. We just laid low all day and didn't do too much because the next day we had a very special dinner to attend.

Big Event #3: Grandpa and Grandma's Belated Anniversary Dinner 

My parent's 50th Wedding Anniversary was actually on June 3rd, which was just 2 days after my dad had partial knee replacement surgery.  Thankfully, he did very well with the surgery but it meant he would need to spend a majority of the summer doing physical therapy and recovering. 

My sisters and I thought maybe we could do something at the end of summer or in the fall. But it turned out that most of the family would be here the last weekend in July so we figured we should try to do something then. We kept it a secret until just a few days prior. They were both very surprised and appreciated the effort we had put forth. 


Grandma and Grandpa celebrating 50 years of marriage!

 
Many family members were able to celebrate with them.

Faith with Grandma, Grandpa, and some of her cousins.

Both of us had such a nice time!

Some of Faith's favorite girls in the world!

And her uncle, too, of course!

Faith and Grace (our amazing waitress who is also Grandma's favorite barista!

Faith's goals for the evening were to deliver Grandma and Grandpa's gift and get as many hugs from her cousins, aunts, and uncles as possible (see video below). As an added bonus, her Auntie Dawn gave her some monster cookies she had made just for her.

After all of that activity, she was still ready for church the next day. Shortly after getting home from her church, her aunt and cousins stopped over to say goodbye on their way back to South Dakota. And finally, our busy week had come to a close. I think we're both ready to get back to our regular routine and not have anymore major events for a while!

We hope everyone has a great rest of the summer!


Saturday, January 19, 2013

Faith's Mom's Blog Top 12 of 2012

I thought it would be interesting to see what blog posts in 2012 had the most views. I was a little surprised by the post that was visited the most. I was also very proud that the guest post written by my father-in-law made the top 12, in fact it almost made number one!

I had a big surge of views during the month of December. In fact, four of the posts I put up that month ended up getting more page views than the posts I had written at the beginning and middle of 2012. I wrote 42 posts during 2012 and here are Faith's Mom's Blog top 12 of 2012:

Number 12 - Good News About Faith's Hips publish date: 2-25-12
It's Saturday morning and after a busy, somewhat stressful work week, I can finally take a moment to enjoy a nice cup of coffee while doing some writing. Sitting here, I am reflecting on the wonderful news we received on Wednesday. Faith's left hip has not pulled out any further from its socket! Read More

Number 11 - Conscious Sedation - A New Experience for Our Brave Girl publish date: 1-6-12
I am so very proud of both Rob and Faith. I only wish I could have been there with them. Today was a new experience as Faith's medical providers used conscious sedation while administering her botox shots. Read More

Number 10 - A 40th Wedding Anniversary publish date 6-17-12
On June 3rd of this year, my parents celebrated their 40th wedding anniversary. It wasn't until this past weekend, however, that they were able to celebrate the momentous occasion with their five kids, eight grandchildren and a few of their siblings as well. Read More

Number 9 - My Ten Favorite Christmas Songs publish date 12-23-12 
Christmas music has been playing now for about a month or so but honestly, I think it could play all year long as far as I'm concerned. I love the beautiful lyrics about the baby born in a manger; some of them written hundreds of years ago. While the traditional ones about Jesus are my favorite, there are a few Christmas songs that I really have fun listening to - and singing along with! Read More

Number 8 - Faith's Fun Week at School publish date 11-30-12
At least once a year, Faith's school has a fun week where there is a theme each day on how to dress. When Rob was getting Faith ready in the mornings, he really didn't put too much effort into making sure Faith was dressed according to the theme of the day. I used to love having these fun weeks at school and I loved getting Faith ready each day this week. Read More

Number 7 - Merry Christmas from Faith's Mom's Blog publish date 12-25-12
This is a slideshow I put together using Smilebox. It includes several photos I took throughout the month of December, of our family and around Bismarck. View the Slideshow

Number 6 - Christmas Festivities Galore publish date 12-10-12
This season is known as the most wonderful time of the year and probably the busiest time of the year as well. Along with starting Christmas shopping, putting up our tree and thinking about getting our Christmas cards ready, we have taken part in some great Christmas events. Read More

Number 5 - Give the Gift of a Wheelchair publish date 12-16-12
As with most kids in this country who have a physical impairment, our daughter has access to one of the most basic necessities of a handicapped child - a wheelchair. But for those disabled children in third-world or communist countries, many children with cerebral palsy or similar disabilities cannot so easily attain a a much-needed chair that offers the simple gift of mobility. Read More

Number 4 - The Baclofen Pump Decision publish date 7-13-12
Even though Faith's x-rays have shown that her hips are stable and have not come any further out of her sockets (especially her left hip), we decided to move forward with getting the baclofen pump. We felt this was the right ecision and that Faith would benefit if the pump helped to decrease her tone. Read More

Number 3 - Having A Blast Playing Wheelchair Soccer publish date 3-25-12
I guess after Saturday's wheelchair soccer game in which Faith took part, I could easily see myself as a wheelchair soccer mom. She had such a blast and with the help of a soccer player from the University of Mary, she made some great plays and even scored some goals! Read More

Number 2 - Grandparents From a Distance publish date 8-2-12
Cari, our daughter-in-law, has asked me to write up an article for her blog. Not being a blog-writer myself, this has been something of a new experience for me. I do trust that your reading of this will be worth your while. Read More

Number 1 - Goodbye to Our Special Tomato publish date 6-1-12
Today we said goodbye to our Special Tomato adaptive car seat. And special it was. It helped Faith stay safe and secure in our Hyundai driving her back and forth to therapy appointments, shopping excursions and many other activities. It also helped us through our time of not being able to afford an accessible van. Read More

Friday, January 6, 2012

Conscious Sedation - A New Experience for Our Brave Girl

I am so very proud of both Rob and Faith. I only wish I could have been there with them. Today was a new experience as Faith's medical providers used conscious sedation while administering her botox shots.

I was pretty bummed that I couldn't be there. January marks our busiest month at work so taking time off is limited. I already have to take time off on Monday for an appointment. So there I was this morning at work wanting to be with Faith and praying that all would go well.

Rob and Faith had to be at the hospital at 8:30. Faith's pediatrician was there, along with a few other of Faith's favorite medical providers. She was especially happy to see PBS playing on the television. Seeing something familiar helped to keep her calm.

Rob and I have struggled in the past wondering if conscious sedation was the right thing to do for Faith. It just didn't seem like giving her sedation drugs every time she got botox was very good for her. In the past during her botox injections, I would have to hold her down while they gave her the five shots in the back of her legs. It seemed to take forever and she screamed through the whole ordeal but when it was over she was fine.

For this round, Faith's doctors talked us into using conscious sedation. They said it was better for her, not just because it was painless but because Faith wouldn't have as vivid of a memory of the event.They also told us, she would not be completely put under like she had been with her feeding tube surgery and her phenol block.She had a really tough time after those procedures because the anesthetics really upset her tummy and we ended up having to stay at the hospital longer than anticipated.

Needless to say, today's event went much better than we could have possibly imagined. Faith didn't cry once - not even when they tried to put the iv in one hand then when that didn't work put it in the other. After giving her the sedation medication, Faith was very relaxed but not completely asleep. Rob was right there by her side praying for her the whole time. And before they knew it, they were back home.

I was a little stunned when I checked my e-mail on my lunch break and Rob said everything went really well and that Faith didn't even cry. I had to call on my 2:00 break just to make sure everything was still okay. Faith was happy and excited for me to come home so she could tell me about her adventure at the hospital. When I did get home, she said, "Mommy I was a really big girl at the hospital today." She has lots of stickers to prove it!

Here are a few new pics of our brave girl:

New jammies!

Faith getting ready for bed