ER Visit

It’s 7am and I haven’t slept since the night before last. As many of you probably know from following Wendy on Facebook, she’s been sick and running a fever for the past 2 days. After trying to go to sleep last night she woke up crying and hurting pretty severely. I cuddled her and tried to keep her as content as possible. Around midnight she vomited on me and her, so I went to change her clothes. As I was changing her, I noticed her chest was swollen, her pulse was well over 200, and her breathing was labored. It was like she was holding her breath for a moment in between each breath. I told Zed immediately I was taking her to the ER. I would rather be safe than sorry and I knew I’d never sleep while being worried about her. Zed had taken his sleeping medication and was kind of out of it, so I called my mom. (Also, Zed isn’t the best at handling stressful situations, especially when it comes to Wendy.)

We arrived at Athens Regional around 1am. The lady who took our name as we went in was being crappy and absolutely not worried about us because she was talking to co-worker about ordering shoes online. She obviously wasn’t paying attention when we said Wen was having problems breathing. So we got someone else’s attention and said we needed to see a doctor, now. They took us straight back.

We met with the doctor and he said, after examining Wendy, that her throat was red and her chest sounded congested in the front, which could be causing her chest to be swelling. She was also still running a fever of 101. He said he wanted to do blood work, chest and abdomen X-rays (to make sure her intestines weren’t twisted since she was born with intestinal malrotation), a urinalysis, and flu test. Her blood work, flu test, and urinalysis all came back fine (we are still waiting for one blood test to come back, it takes 24-48 hours). Her chest X-ray wasn’t terrible and her abdomen X-ray showed she was still constipated and gassy. We did a breathing treatment and they gave her Tylenol. She was diagnosed with a viral syndrome and upper respiratory infection. Since both of those are caused by viruses there is nothing we can do, except wait it out because antibiotics won’t kill a virus. We have to follow up with her pediatrician tomorrow.

Wendy is now sleeping. I’m hoping I will be able to fall asleep shortly. I have a feeling Wendy and I will be doing a lot of laying around and napping today.

2 Appointments In 1 Day

Today I had to take Wendy to two appointments, luckily only in Athens and my mom went with me to help. Her first appointment was to check her kidney reflux to see if we needed to continue giving her Bactrim daily and to see if we needed another follow up with a urologist. As you may or may not know, Wendy was born with right grade 1 VUR (vesicoureteral reflux) and mild left hydronephrosis. VUR is when urine back flows into the kidneys and hydronephrosis is swelling of the kidneys. The days after she was born, when they were checking all her major organs, a renal ultrasound showed mild hydronephrosis on her left kidney. Three weeks later a VCUG showed the grade 1 reflux on her right kidney. Because of that, she was put on amoxicillin daily for UTI prophylaxis. We were scheduled to follow up with urology after she was discharged from the hospital. When we met with urology, she was 3 months old, and they performed another renal ultrasound. That ultrasound showed the hydronephrosis was no longer present but Wendy still needed antibiotics for the VUR. They switched her to Bactrim since that’s more suited for children over 3 months and she’s been on it since then. Grade 1 reflux is usually something kids grow out of, so today we went to have her kidneys checked.

Today they did a VCUG (voiding cysto-urethrogram).  We had to strip Wendy down and put her in a hospital gown, then a nurse cleaned her bottom with iodine. Then, they inserted a catheter while a technician and myself held her down. The catheter was used to put a contrast dye in Wendy’s bladder. Once Wendy’s bladder was filled, the technician began taking x-rays. We had to hold her down until she urinated and emptied her bladder. As she was going potty, the contrast showed whether or not her urine was backing up into her kidneys or not. After her bladder was empty the catheter was removed and we were able to go home. About 2 hours later (when we were just leaving therapy), Miss Ivy called from Dr. Martin’s office to say Wen’s kidneys looked great and no more Bactrim was needed.

We also had her first appointment with a feeding therapist today. (Now do you see why I had to have my mom go? It would have been too exhausting to do all of that alone because Wendy is a handful and a half, HAHA!) Not much happened with feeding therapy. The therapist just wants us to work on desensitizing the back of Wendy’s mouth since she mainly chews with the front and said we should try to give pureed food a little more texture, which I already do because Wendy does better with thicker consistencies. We go back Monday for another therapy session and then next Wednesday is her well check appointment with the pediatrician. We’re going to try to get Wendy an Infinity pump so she can wear it in a backpack so she won’t be so constricted and limited in her movements.

Wendy’s really been doing pretty great. She’s loving the Gerber Puffs and Crunchies and she’s getting better at using her sippy cup. Hopefully things will continue progressing in a positive manner. 

Prayer for Others.

I may have unintentionally sparked a bit of controversy on my personal Facebook page. My post was:
I know many of my facebook friends "like" Tripp Halstead's page and pray daily for him. I'd just like to remind everyone that there are many, many sick/disabled kids that need prayer too. I've met many families facing difficult struggles through Wendy's support page and I would love to get more prayers for them because they don't have hundreds of thousands of followers, and they haven't been on the news. So I say tonight when you say your prayer for Tripp, pray for those less known children who are also facing difficult challenges and struggles of their own. And of course, I ask for continued prayers for my sweet, precious Wendy.


 

I want to start by saying, I in no way meant anything negative toward Tripp or his family. Team Boom all the way! I also did not mean that I wanted Wendy to have that kind of exposure via news/facebook/whatever, however I do not mind sharing Wendy’s story with anyone who is curious. I have no shame in talking about it and I feel the more people that are informed about Wendy, the more accepted she will be because she has disabilities and will never be what society considers “normal” so I want her and others to understand being different is okay.


Now to address the part people may have misconstrued. I definitely did not mean that Tripp and his experience should not be shared with the world. It is a miraculous story and I believe it’s nice that people know about him. What I was saying, is that there are other children out there that are just as sick, have beaten just as many odds, or are experiencing an extraordinary life with disabilities and they all need your prayer too! It doesn’t matter that you do not know their name or that you’re not following them on Facebook or that you haven’t seen their story on the news; still pray!

Modified Barium Swallow Study

This past Monday, Wendy had her second swallow study. The first was done at Vanderbilt when she was around 5 months old and could not be completed because she did not take enough liquids. Wendy had the study done because she has dysphagia, difficult with swallowing. The two main things noted in her study were pharyngeal residue after swallowing and laryngeal penetration of thin liquids.

Pharyngeal residue means that when she swallows, she doesn’t swallow all of the food and there is residue left in the back of her throat. Because of this, we have to feed Wendy small bites, very slowly. We also have to make sure her mouth is empty before feeding her another bite. Sometimes we will have to give her an empty spoon to make her think she’s getting another bite of food so she will swallow again and clear the back of her throat.

The other thing mentioned, laryngeal penetration, was described to us as the liquids playing peekaboo with her windpipe. When Wendy swallows liquids, more than 50% of the time, a little liquid would go into her trachea and come back out. She is not aspirating, but laryngeal penetration can be a predictor for aspiration and puts her at higher risk, so it’s just something we have to be careful of. Again, we have to give small, slow sips.

All in all, Wendy passed her study and these big words make it sound much worse than it is. Wendy has been cleared for feeding therapy and her rehab potential is “good with continued intervention”, so eventually (hopefully) she will not be feeding tube dependent. This is a very big and exciting step for Wendy and our family. We are hoping for continued good news and success!

Playing Catch-Up

I have not been updating as much as I used to, so I wanted to do a quick blog to let everyone know what’s going on with Wendy and what we will be up to in the following weeks.


If you follow us on Facebook, you’ll probably already know that Wendy got sick with a cold 3 weeks ago. That made us have to postpone her swallow study, which will now be done this coming Monday, April 8.


Yesterday, she had her post op appointment with her surgeon. Dr. Wulkan said she is healing well. The incision looks great. Her rectum is soft inside (which is a very good thing) but that we could continue to dilate her once a day/every other day, just to help keep it soft so she continues passing stool easily. Wendy is having between 2-4 bowel movements a day, which indicates that she will be able to control her bowels, so she should be able to potty train and not constantly have an output of stool (like her colostomy, she could not control when she went). He also said her yeast infection/diaper rash doesn’t look that bad; he said he’d seen much worse in kids who had imperforate anuses and that we should continue what we’re doing and her skin will eventually toughen up. We go back in 3 months for another check up. We will continue to see Dr. Wulkan until she is ready to potty train, then we will go to the colorectal clinic at CHOA where they will manage her until she is older. Here’s a link for the clinic to give a little more info about what they do- http://www.choa.org/Childrens-Hospital-Services/Pediatric-Surgery-Georgia/Specialties/General-Surgery/Colorectal-Clinic. As far as the little bit of granulation tissue and redness around her g tube, he said it’s nothing to worry about and doesn’t seem to be bothering her so as of now, it’s not an issue to be concerned with.


Another exciting thing is the Elberton Civic Center has been booked for June 1 for the Warriors for Wendy pageant. The proceeds will be donated to the Ronald McDonald House, so we are very excited about it and super thankful to Shining Moments Pageant Productions for hosting! Here’s a link for the event page on Facebook Warriors for Wendy Pageant, Facebook as well as a link for paperwork Entry Form. Here is all the info for the pageant as well Pageant Info.  Even if you don’t have a child/teenager to enter in the pageant, you can still attend or purchase a t-shirt. Donations are also welcome. If you have any questions about t-shirts or donations, you can email me at wendys.mom7.10@gmail.com and I will be happy to help. Last year, in Wendy’s honor, we raised almost $2,000 for March of Dimes. This year we wanted to give back to RMHC because it’s an amazing organization that helps so many families, including ours. We have been blessed to have insurance and have been able to pay for Wendy’s medical treatments, medications, hospital stays, supplies, etc so since there are so many people who have offered to do fundraisers for us, we decided we wanted to give back to those who truly need it instead.  So thank you to everyone who has bought a shirt and supported us. (Also, I still have Wendy’s Warrior bracelets for sale 1/$3, 2/$5 plus $2 shipping if needed, if anyone wants one.)

Sign Time.

Wendy is almost 18 months old now and still very nonverbal. She can make simple one syllable sounds, like “pa”, “da”, “ma”, etc. however, she can’t really communicate with us. We decided to work on baby signing. Surprisingly, the first thing she picked up was “eat” even though she doesn’t eat herself (at least not by mouth). We’ve been feeding her a bit by mouth, in practice for her swallow study because impractical for us to think she’ll just get to the study and know how to eat without working on it beforehand, and she has learned that raising her hand to her mouth means “eat”.  Today we tried carrots mixed with a little oatmeal (she tends to do better with a thicker consistency) but she gagged quite a bit, so we will try again later. Her swallow study was moved until April 8 since she’s been sick (and still is) with a cold, so her nose is stuffy and she’s having more difficulty swallowing.


I know I haven’t been updating the blog as much as I used to but for simple things, it’s easier to just post a quick status on Facebook. I will try to get back to writing more because I really want to keep this blog going.

Warrior for Wendy Shirts

Warrior for Wendy shirts available! 

$20 each. (Add $5 for shipping)

Sizes; 

baby’s onesies NB-18M 

children's (2-4, 6-8, 10-12, 14-16) 

adult’s (S,M,L,XL,2XL,3XL,4XL,5XL)

How to order and pay:

Payments can be mailed to:

1037 Bakers Ferry Rd

Elberton, GA 30635

PayPal as gift to:

wendys.mom7.10@gmail.com

Or taken to my mom at Capell Automotive in Elberton.

Please leave a note with your size and name (and address if you are not local).