April 28, 2011

pre-surgery pictures and update

Here she is patiently waiting for our buzzer to "buzz" so we know when it's our turn. Thankfully, she doesn't know yet that these buzzers are what restaurants use to notify you when your table is ready. That must really be confusing for older kids waiting for surgery - especially since you can't eat.

This was her reaction when we were told that surgery was bumped again. New time - 12:35!

She was so happy and playful all morning. It's amazing (sad actually) that she hadn't eaten since midnight yet she never asked for milk or food before the surgery. I'm glad she was happy and not as hungry as Branden and I were - we were starving!

Looking so very cute

She and I were having so much fun (crazy, I know!) right before she went in for surgery. She was making us laugh so hard. I just love her sense of humor.

Branden snapped a quick picture before we went back into the Operating Room. It's confirmed - I will never go with out bangs!

Thankfully surgery only took about an hour. They were able to go in laparoscopically verses open surgery so this was great news. The first hour in recovery was a bit rough. She was obviously in a lot of pain. However, after 2 doses of morphine she started to seem a bit more comfortable. Finding out that she couldn't have anything by mouth for 24 hours was a bit discouraging but completely understandable. We spent the next several hours in recovery waiting (and waiting) for her room to be ready.

We were finally transferred to the room about 4:15pm. Honestly, it was better down there. We have a roommate of course, but this roommate is only 3 years old and has about 6 family members by his bed at all time. He's been screaming non stop - which I feel bad about except for the fact that Annabelle is exhausted and can't fall asleep because of all the noise, he's getting breathing treatments every 3 hours - around the clock and he gets to eat so the room smells of pizza which is heart breaking for her. I've requested a room change but aren't sure we will get it. Branden is here now thank goodness but he will be leaving soon. Work's a bit crazy for him right now so he needs to go in tomorrow. Lord give me strength!

I will try and post her "post-op" pictures. There are some really cute ones. We are so very thankful that the surgery went well and are hopeful her body will respond to her new "button". I have to admit it's bigger than I expected and I cried when I first saw it. Like anything new it will take a bit of getting used to.

Thank you family and friends, FB friends and my on-line/blogging friends for ALL the love and support today. You sure know how to make a girl feel special :-) We were blessed to get a quick visit earlier from Annabelle's Neurosurgeon , Dr. Javahery, also our good friend Glenn (who works here) and my Dad who brought us dinner. It was nice to see each of you!

That's all for now!

April 27, 2011

Surgery Update

We wanted to let everyone know that Annabelle's surgery scheduled for Thursday, April 28th has been bumped to 12 noon. We will now check in at the hospital at 10 am and hope that the surgeon has stayed on schedule so that Annabelle will have a successful surgery. We are hopeful she will be eating by dinner time. If this is the first you are reading about Annabelle surgery, click HERE to get all of the details.

I thought this picture was funny and spoke volumes to how Annabelle's lack of eating has affected us all. Benjamin (fyi - he's 4) was graciously trying to help feed Annabelle for me. She had already thrown all her noodles off her tray and refused all food I was trying to spoon feed her. She was willing to take a few bites of fruit off the spoon from Benjamin. After about 3 bites she stopped and this was Ben's reaction. He was saying "Come on Annabelle, you neeeeed to eat" It was in this long, drawn out desperate voice. Poor kid, I guess this is what he hears out of my mouth every day. So glad we are taking steps in the right direction.

Thank you all so much for the outpouring of love and support we have received this last 24 hours. All of the comments left here and on FaceBook have just warmed my heart. It really helps more than you know. Okay, I better go because I have lots to do and bags to pack.

April 26, 2011

Focusing on the bigger picture

That is what we are doing right now. I am trying to push away my worries and my fears and only focus on this sweet girl and how much better life should be for her - very soon.

Annabelle will be having surgery # 8 this Thursday, April 28th.
Please pray for her and her doctors, for Branden and I and our boys. Surgery is always so scary and hospital stays are always hard on all of us. It's difficult to be separated and it's lonely there.

For those that aren't aware yet, Annabelle will be getting a Gastrostomy Tube (G-Tube) on Thursday. To read more about G-Tubes click HERE. The short description is that a G-Tube is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow.

Anyone who has spent time with us knows that Annabelle eats and drinks very little. We have been working on it and some days are better than others but sadly most days she just doesn't have any interest in food or drink. Thank goodness she is still willing to nurse twice a day. She is almost 21 months old (wow!) and is weighing barely 17lbs. She's a little peanut. But more than the lack of growing or failure to thrive as they call it, her doctors are all pretty confident that her lack of eating and lack of hydration is directly effecting her sever constipation and chronic UTI's. The hope is that with the placement of the G-Tube we will be able to ensure that she is getting the proper nutrition and hydration she needs to get her bowls working better to decrease the constipation and to flush her urine better so she stops getting these darn UTI's. It seems like it's sort of a vicious cycle - she doesn't eat because she's constipated, yet she gets constipated because she doesn't eat or drink - ugh! I am very hopeful that this supplemental feeding will help to resolve or greatly minimize these problems we have been having for so long.

Just to clarify a few things that you might be wondering -

1. She will continue to eat normally during the day. Her G-tube feedings will be administered overnight while she sleeps. She will continue to work with her Occupational Therapist (OT) to develop better eating and drinking skills.

2. She will NOT have a long tube coming out of her belly. She will be skipping the tube and getting whats referred to as a "button" right away. The "button" is a device that is flatter and lies against the skin of the abdomen. The button can be opened for feedings and closed in between feedings or medications.

3. This is NOT a permanent solution to Annabelle's eating problems. It is intended to be a temporary solution to help get her to where she needs to be nutritionally while she continues to learn to be a better eater. Once the doctor decides that Annabelle is able to take in enough nutrition by mouth, the button will be removed. Removal takes only minutes and is usually done in the office by the doctor or nurse. Once the button is out, a small hole will remain. It should be kept clean and covered with gauze until it closes on its own. In some cases, surgery is necessary to close the hole. Either way, the scar that remains will be small.

So that's it in a nutshell. Am I scared? Yep, really scared but I know in my heart it's the right thing to do. I am confident that she will soon start to realize the benefits of a full, happy belly. But, like the 7 times before, it won't be easy handing her over for surgery. I've been lucky in the past to be able to hold her in the operating room until the gas takes effect to help minimize her fears. I don't know if "lucky" is really the right word - it's actually one of the most difficult things I've ever done, but I wouldn't have it any other way. I can only imagine how scared my sweet girl is. She's smart and I know she remembers but I will be there with her holding her tight.

We will check in at the hospital at 6 am on Thursday and the surgery is scheduled for 7:30 am. I am hopeful we will be released on Saturday but if not then Sunday. I will post updates as I am able. I am unsure what we are looking at for recovery time. I welcome all positive (sorry, I can't deal with negative right now) G-tube stories anyone has to share.

Please hold us in your hearts this week. We need your prayers. As always, thank you for loving and supporting us. Our lives are even more blessed because you are all a part of it.

April 25, 2011

Catching up on Cuteness!

  • Because I am tired of seeing my frustrating A-Med posts every time I look at Annabelle's sweet blog.
  • Because I am not ready to deal with everything else that is going on with Annabelle right now.
  • Because who can resist an adorable little girl on skates!

These pictures were from April 11th.
More updates on the latest and greatest to come soon.

April 5, 2011

A-Med Health Care's Response to my letter

A couple of people have asked how Charles, our Customer Service Manager at A-Med responded to my letter. I am happy to report that he did not wait to contact me. He called first thing (8:01 am to be exact) on Monday morning and was ready to discuss my very valid concerns.

He assured me that he did not not know of the recall on 3/18 when he and I spoke specifically about my dissatisfaction with the Triad's providine Iodine pads. The reality is that he should have known, but I have no reason to believe that he did know at that time if he is saying that he didn't.

He is stating that the company became aware of the March 15th recall on Monday, March 28th and that they "immediately" aka 4 days later on Thursday, March 31st wrote, by snail mail, to their customers to tell them to "immediately" stop using this potentially dangerous product.

I explained to him that I DO NOT believe that someone at some level in his organization was not aware of this very serious recall.

I explained to him that companies have an obligation to know what is going on with their products - especially products that are used in such an intimate way.

I explained that even someone like myself who is not very technologically savvy can create a very basic google search on the the words "Triad medical" and was able to get a significant amount of news information on this company.

I let me him know he was welcome to believe that no one knew if it made him feel better but I just wasn't going to be naive.

I then proceeded to explain that in the small chance that no one in his company knew about that the recall until 13 days AFTER it was issued by the FDA than his company truly had some issues and should expect to see further challenges and misses down the road. I also let him know that I was unsure if I could continue giving his company my business going forward.

He assured me that he took my concerns very seriously and that he had already forwarded my e-mail to both his boss - the Chief Operating Officer and to the Vice President of Legal Affairs. I was very pleased to hear this as I plan to be that squeaky wheel. I do not intend to let them forget that they are dealing with people's lives - not just product and paperwork. I want them to forever think of Annabelle and people just like her anytime a recall happens so that they think hard about how their process of notification is handled.

The reality is that notifying us 18+ days (depending on where you live) AFTER a health related recall is issued is UNACCEPTABLE!!! I told Charles that even the PTA knows how to do a recorded message to let us know about an important announcement. In this day of technology it is my strong belief that A-Med should have sent out an automated call instructing patients to immediately stop using the product. The call should have directed us to a detailed letter on their website. They should have also sent out follow up e-mails (which they do every month for reorders) and then hard copy notifications. Honestly, I could care less to have gotten it by snail mail but if they wanted to or legally had to then that would be a wise last way of notifying the customers. I do not feel in any way that this was too much to ask. By the way they took 28 days to notify us in January of the recall on the Triad Lubricant packets.

So when Charles and I were ending our conversation on Monday morning he said "I will get those replacements kits shipped right out to you tomorrow". I thought to myself - um, excuse me, I don't think so! I reminded him that his office is 25 minutes from my house and that they would need to be delivered by end of day today (Monday). He agreed and they were delivered at 6:30 pm by a very nice driver in a PT Cruiser ~ that's California for you.

I am pleased to share that I received a call from The COO this afternoon. Unfortunately, I missed his call and was unable to return his call until after business hours. I look forward to speaking with him sometime tomorrow between PT, OT, Speech, preschool pick up, kindergarten pick up and T-ball - I WILL make it happen!! I will also make my concerns heard and understood because if I don't who will?

I thought it would be nice to close this serious post with a few pictures of my sweetie girl. She is one of 3 reasons I fight as hard as I do!

April 1, 2011

My not so nice letter to A-Med Heath Care - our catheter kit supplier

I am just livid to find out today that yet another recall of Annabelle's catheter supplies has happened. A few months back it was the lubricating jelly. Now it It's the providine iodine pads. These products have both been contaminated with potentially deadly bacteria. These are products that are used ON or IN our daughter 6 times a day EVERY DAY!!

It's Friday night and after searching the internet for over an hour to learn more about this latest recall, I just couldn't take it any more. I am FURIOUS - both with the manufacturer and with our supplier who in my opinion did not inform us in a timely manner. I am feeling so vulnerable because we need these products to help keep Annabelle healthy yet these products are deemed unsafe. How can I honestly ever trust that they are safe. I am so mad right now. Below is the not so nice letter I wrote to our customer service manager at A-Med Health care.


I am extremely upset and it is imperative that we speak as soon as possible on Monday morning. I received your letter today, however it appears that the FDA recalled the Providine iodine prep pads on March 15th and it was all over the news by March 18th. Here's just a few of MANY links discussing this extremely disturbing news.


If you recall, you and I spoke on on March 18th at 11:36 am (according to my phone records) specifically about my dissatisfaction with this exact product. I even directly asked you if other complaints had been made about the quality of this product. Of course, at this time I HAD NO IDEA that it was being recalled due to contamination with a potentially deadly bacteria. I am OUTRAGED that you did not bring this to my attention. It is hard for me to believe that you were unaware of this recall during our conversation, but in the event that you weren't I am CONFIDENT that you knew within the next 24 hours. My question to you is why you did not call or e-mail me, your customer to tell me to immediately stop using this dangerous product. You are my Customer Service Manager. What kind of customer service is that?


I am so completely disgusted with your company and the lack of professionalism and the disrespect you have shown for our daughters health and for our family.

I have approximately 200 kits (I will confirm the correct # in the morning) in my possession which need to be replaced immediately with a QUALITY, STERILE products. I am truly at a loss for words about this situation and I assure you that rarely happens. Your letter states "A-Med Heath Care takes your health and safety very seriously" but that statement is seriously hard to believe at this point.

Please do not wait to contact me as we need to make arrangements to handle this situation on Monday.

Nicole Summers