August 26, 2010
Not to much new to report on her health. She's feeling ok for the most part. Her belly still seems to bother her but not as much as before. I don't think she's any getting worse, but honestly I don't think she's getting that much better. She seems as good as she did on Sunday night. They did another urinalysis today and may possibly do some other tests tomorrow or Monday. We will see.
I have some other stuff to share about what I have been doing to take back control of this UTI situation but I really need to clean up from dinner and fold a few loads of laundry so my blogging will have to wait for tonight but my THANK YOU could not!!
So much love and support out there - what an amazing thing!!!
Here's a cute little video from Sunday night when Annabelle started feeling better. After being so sick and sleeping so much she wasn't much interested in sleeping at bedtime so she hung out with Branden and I until after 10pm (don't tell her brothers!).
Annabelle has learned a new word.
but of course, she only says it off camera.
August 24, 2010
So, I don't even know what to say or where to start. I am so frustrated, worried, overwhelmed, stressed out, you name it and I felt it today. I know I should say "we've encountered a bump in the road" but honestly, I'm not feeling so encouraged right now. I'm leaning much more to the glass is half empty attitude right now. Maybe with some rest and a day of reflection but for now - pretty empty. I apologize if this comes out long and confusing, but honestly it is.
Since the boys woke at the crack of dawn today I knew I needed to get us all packed up and out of the house and plan for the boys to nap. For the most part the morning was going well until Dr. McCormick, Annabelle's pediatrician called. I could tell right away there was a problem and indeed there was (is). She said we have bad news Nicole (ok, right there, you know I wanted to vomit). She said that the final urinalysis report from Friday morning has come back and it looks as though the strain of bacteria (UTI) Annabelle has actually won't be cleared by Suprax (the medicine she was given a 10 day dose for on Monday). So, I'm thinking ok - bad news, we've lost 4 days of antibiotics and I paid for the prescription. Clearly could be worse. She'll call in a new RX and another co-pay later we will be heading toward kicking this UTI.
Well, she goes on to explain how this bacteria isn't really resistant or sensitive, I can't keep up with all the lingo, but regardless there are only a few options for fighting this bacteria. She goes on to explain that one drug is only given by IV but is quite harsh on the kidneys and in light of her kidney situation she wouldn't recommend that drug. The other drug, Ciprofloxacin is given orally however is not recommended in pediatric patients due to the negative side effects on the child's joints and or surrounding tissue - great. Here's a little blurb about this wonder drug I found on the Internet.
Ciprofloxacin used for Pediatric patients (1 to 17 years of age): Complicated Urinary Tract Infections and Pyelonephritis due to Escherichia coli. NOTE: Although effective in clinical trials, ciprofloxacin is not a drug of first choice in the pediatric population due to an increased incidence of adverse events compared to controls, including events related to joints and/or surrounding tissues. (See WARNINGS, PRECAUTIONS, Pediatric Use, ADVERSE REACTIONS and CLINICAL STUDIES.) Ciprofloxacin, like other quinolones, causes arthropathy and histological changes in weight-bearing joints of juvenile animals resulting in lameness. (See ANIMAL PHARMACOLOGY.)
She then she tells me that a call has been placed to an Infectious Disease Dr. for a recommendation on how to proceed. Great. Of course I am a mess by this time and in typical fashion the kids start to go crazy "needing" my attention because they haven't been getting it. The Dr. says that she will follow up as soon as she hears something.
I get a call about an hour or so later from the Dr. stating that the Infectious Disease Dr. has recommended starting with the Cipro (medicine discussed above) however if she starts to show any signs of increased infection (i.e. fever & vomiting) I need to take her to the ER where she will get an IV antibiotic for a few days and then be sent home with a PICC line. For those not familiar with a PICC line:
A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body and the extremities. And typically the upper arm is the area of choice.
As you can imagine this wasn't the greatest news to get. All the while I am still "trying" to hold it together because I had three kids to take care of. I was actually having this conversation in the parking lot of the community pool where I was taking them to swim today. She then says that the insurance company won't likely cover it (great, again!) because it's not a typical pediatric drug. Thankfully she said she would work on get it pre-approved due to medical necessity. Seriously, I have no idea what we would do without Dr. McCormick. She has been super wonderful with us.
A few hours later I got yet another call stating that the Infectious Disease Dr. had read the results from the urinalysis that was taken on Saturday night at the ER and since it appears that Annabelle is (somehow) responding to the antibiotic shots and the Suprax it is recommended that she stay on that and only go to the next level of drug (i.e. Cipro or the IV drug) if she starts to have increased symptoms or the urinalysis at the end of the 14 day treatment shows that the bacteria is still present - huh, big sigh, this is good news, sort of, right? It buys a bit of time for her to try and recover without using the more damaging medicines.
So, once I again I am "trying" to hold together and the fact is I wasn't - I am not. I've been crying, I am tired and I'm scared for our daughter. I was a mess - I couldn't even pull anything together for dinner, the boys and I were bickering all afternoon and no they wouldn't nap. It was a rough afternoon.
A bit later I got another call from the Dr. wanting to remind me how very important it is to have very strict hand washing procedures when I change and catheterize Annabelle. Of course we are always careful and she wasn't implying that we weren't but wanted to stress it in light of this new bacteria that has never been present before and is apparently quite dangerous.
SO HERE'S THE KICKER - HERE'S WHAT SENT ME OVER THE EDGE of an already rough day. I write the nurse (very nice lady) at the Spina Bifida clinic to ask if I could please arrange to have gloves sent in my next catheter order (which I knew was shipping tomorrow). She manages the order, so to speak because the RX comes from the Urologist and she coordinates. Side note: I asked for gloves on day one and she said NO - not necessary, huh? Not necessary? Well, now after 2 UTI's in the first month of cathing and some new crazy bacteria I figured the doc could write gloves on the damn prescription (yep, I'm getting mad all over again just writing this out). It's very frustrating to be told no for things that I truly believe are necessary are I'm paying for! We are NOT on any government assistance - we pay for our medical care and our medical supplies (no disrespect if you are - my point is why do you really care if I want a bit of extra protection that I will be paying for). So when I ask for gloves and am told they are a not necessary by the nurse managing her care it's very frustrating that in less than 20 day's of our new routine Annabelle ends up in the ER 3 times. Maybe the stupid gloves would have helped - who know, maybe not. Okay, so back to the e-mail. I shoot off the e-mail and in less than 5 minutes she calls me. We start off having a very nice conversation. As I said, she is a good lady and I am thankful for her friendship and the kindness she has shown our family this last year. She goes on to say "I think you are right, gloves are probably warranted under these circumstances. You know Nicole, we may want to get a whole closed cathing kit with Betadine, etc." This is when I loose it - lets rewind 1 month when I was placing my first cathing order I asked for 90% straight caths and 10% closed caths to be used when I was out with the kids, etc. I explained having 3 kids I could not be expected to be home every 4 hours and if I was out I should take extra precautions, etc... You would have thought I asked for the moon by the reaction I got. "Oh, no Nicole, that's not necessary. Just wash our hands or use anti-bacterial" We don't write RX's for cath kits - that's just not done, etc." I was really uncomfortable with this and pushed back, once again reminding her that it was me who would be paying the higher cost and that I was ok with it". Nope, didn't get the RX. Needless to say I have only cathed out once all month - I feel like a prisoner to this house and our cathing schedule. So, now after my daughter has some crazy strong bacteria it seems prudent - sorry that did not go over well with me at all. Yes, there was some raised voices and some strong concerns on my part expressed. The conversation ended well. She was very kind and listened and empathized with all that I had to say. So then 3 hours later I get a huge shipment of these CRAZY looking and CRAZY expensive catheters. I guess the ones we use now our share of cost is around $2 and these new one the share of cost is $7 - per catheter. We cath 5 times per day!!! I actually didn't care for these new ones at all and have asked to discuss different options tomorrow. We did however, lay her on that paper pad and cleaned her with the Betadine antiseptic - while my sweet little princess is just watching all the craziness around her. I hope she never has to experience the stress that we do now. I pray that life will not be this hard for her -will you please pray for her with me?
So, as the night was winding down and I started to nurse and rock her to sleep she started to act a bit funny. She was visibly uncomfortable and then she threw up big. What does this mean, I don't know. Either the medicine really isn't working and the infection is getting worse, maybe she ate too much dinner - I don't know. I do know that I am struggling, in so many ways. I know my boys are struggling watching me so sad and overwhelmed and preoccupied. I know tomorrow is a new day, but sadly today was supposed to be that new day - that day where she started feeling better - that on the road to recovery day. It was not.
As I sit and write this and watch her sleeping on the video monitor I know all I can do is wait and pray that tomorrow is a better day for all of the Summers Family. If by chance anyone made it this far in the post I will leave you with this picture from Sunday night. Sunday was the last night and really the only night of our weekend because Annabelle had been so sick. She was finally feeling better and we wanted to spend a little time together outdoors because it was so hot. We went on a family walk together - it was really nice. If you read our other blog you will understand the significance of this picture. It's kind of silly but also very special (to me) at the same time.
We were all together - as it should be.
**no time to reread and correct spelling errors. I have dishes, laundry and lunches to pack.
August 22, 2010
Yep, we landed ourselves in the ER again!! This was so not what I had planned for this weekend. I do love spending time with my girl but goodness not like this. My heart was breaking as I walked out the door tonight. I really did not want to be gone when the boys woke. The last words I said to Benjamin before he went to sleep was that I loved him and that I promised to play with him in the morning. I know he was missing me big time today since I was taking care of Annabelle non-stop.
So after another full day of lethargy and then a significant decrease in her urine output Annabelle's pediatrician thought it was best that she get over to the ER for some IV fluids. I was a little nervous about going without our typical "call ahead service" from her neurosurgeon so I politely asked the on call pediatrician if she would be kind enough to call and let them know I was coming. She kind of laughed - like you have to be kidding me, but said "I doubt it will matter but I'll try for you". Well, thankfully she has more pull than she thought because we got the express treatment and were ushered back to a room within a few minutes of arriving.
It's 12:30 am right now and we've been here for about 3 hours. They did a urinalysis and some blood work and have determined that she actually is responding to antibiotic shots she got yesterday and today because her while blood cell count is significantly lower and a few other things he rattled off were looking significantly better. It did show that she was slightly dehydrated so they are gong to continue with the IV fluids, give another shot of antibiotics and then let us go home - yeah!!! I can't wait to go home and get some sleep. Thankfully she's sleeping right now while the IV fluids are going in. It's sad, but I'm getting pretty good at pulling together her hospital bag - notice she has her own blanket and her little lovey. It makes it so much easier for her to fall asleep. Although she is still super sleepy she does seem a bit more alert and not as uncomfortable. If all goes as planned we should be checking out around 2am - my fingers are crossed.
I can't believe it's already Sunday. The weekend flew by in an instant. Here's hoping for some major improvements tomorrow so that we can hopefully in a nice family day together. Good night friends - thanks for checking in on us.
August 21, 2010
They discussed hospitalizing her this morning because she hadn't responded to the medicine but they decided to give me another 8 hours at home to nurse and show good urine output when cathing before doing that. I was very thankful of course. It's very difficult to be away from the boys when she is hospitalized. They really have a lot asked of them when Annabelle is sick. Calling in babysitters (aka grandparents) at the last minute and watching their mommy get way to stressed out isn't the best for little people. I know they will be fine and certainly they are very lucky to have grandparents that are willing to come at the drop of a hat to be with them. It's just hard when we have family plans or I have an idea of what I want to do with or for them and then it all goes out the window because I have to take Belle to the Dr.'s or God forbid the hospital - it's just hard to balance sometimes is all I'm saying :-)
They are having her go back again tomorrow morning (Sunday) for another shot of antibiotics. Lets hope this next 24 hours shows some real improvements. She is also scheduled to have an upper GI on Monday morning to check for some digestive and swallowing issues shes been having. I am hopeful nothing will interfere with that since these are had to get appointments.
Thanks everyone for walking this journey with us. Thank you for taking the time to read this and thank you to those that comment or send notes. You can't even imagine how much those help. Your words are the sunshine on some of my toughest days. What a blessing you are all!
Some pictures to lighten up this downer of a post. Here she is with the two people that love her more than anything in this world!
yes, I took this one of us and it's not very good - oh well :-)
But this next one is super cute!
Look at that daddy's girl. She's saying Happy Birthday Daddy!
I read this last night and it really hit home for me so I wanted to share it.
Well, here is an explanation.
A daughter is telling her mother how everything is going wrong. She's failing algebra, her boyfriend broke up with her and her best friend is moving away.
Meanwhile, her mother is baking a cake. She asks her daughter if she would like a snack. The daughter says, "Absolutely Mom! I love your cake!"
"Here, have some cooking oil," her mother offers.
"Yuck" says the daughter.
"How about a couple of raw eggs?"
"Would you like some flour then? Or maybe some baking soda?"
"Mom, those are all yucky!"
To which the mother replies: "Yes, all those things seem bad all by themselves. But when they are put together in the right way, they make a wonderfully delicious cake!”
We're making cake fellow moms. With every doctors appointment, therapy session, consultation. Every time we strap on those braces, run a catheter, give meds., do a breathing treatment. We are combining all the ingredients to make ourselves the most wonderful cake of all. Keep doing what you do, friends. Keep smiling, keep fighting, keep loving.
August 20, 2010
Annabelle was supposed to be casted/fitted for her first pair of AFO's today but we had to cancel because she was so sick. For those not in the SB world, an Ankle Foot Orthosis (AFO) is a short leg brace. Usually made of lightweight plastic that is worn inside the shoe. An AFO helps with better positioning of the feet and ankles.
I honestly have lost count what number UTI this is. I guess it really doesn't matter. She has had way too many. It just baffles me how quickly it happens and how sick she gets. The kids and I had a good morning swimming yesterday and she seemed fine for the most part. She was a bit extra sleepy and irritable in the later afternoon and evening but that's to be expected from a little who rarely naps all day. So honestly, I thought nothing of it.
When Branden and I went in to cath her at midnight we noticed that she had thrown up in her bed and that she had a fever. As I was cathing her and Branden was changing her crib sheets she started vomiting (big) all over her face. It was so scary because she was lying down on her back and I was so afraid she was going to choke. She was up until about 4 am throwing up and dry heaving. Thank goodness for Branden - he is amazing in these situations - me, not so much. Especially when I am so tired. He held her upright in the bed for hours and then laid her down in the pack in play that is still in our room. It's funny how I have been asking him to put this in the garage for at least a month since she sleeps in her own room now but it just never happened. Now I am very thankful it wasn't put away so she had a place close to us to sleep.
When she woke she was very lethargic and still had a fever. This lasted throughout the morning so I knew I needed to call the Dr. Thankfully they got us in at 2:30 and they decided to give her a shot of antibiotics because she was so out of it and wasn't keeping anything down. She has to go back in tomorrow for a follow up and possibly another shot. We didn't see much change in her behavior tonight but are hoping she will start feeling better soon.
Although, I am excited she is going to get her AFO's to help her start learning to stand I have to admit I have had some serious anxiety about it over the last few weeks. This is real and it's a big step for me. I'm not sure I am ready to answer people's questions i.e - "what's wrong with her" (I can't stand this one!) or watch their eyes stare at her precious little legs. I know it's natural for people to wonder and be curious and I understand that, but it doesn't make it any easier for me as her mom who wants to protect her from all the hurts in the world. This world that judges us so much on our outside appearances. Please know when I say "people" I am referring to strangers not the people I see all the time that love us and know Annabelle's history. PLEASE don't feel put off or like you can't ask me questions, etc. because that is NOT at all what I am saying. I'm talking about the people in the grocery store, that 10 year old kid at the park or that "one" mom who can't stop sharing all the amazing things her child is doing while not realizing I would love it if Annabelle did half those things. It's those people I don't feel like explaining anything to - at least right now. I know this will change, it always does. As soon as I get more and more comfortable with something you know I start to open up more and then you won't be able to shut me up.
So now I have to reschedule that appointment to get her fitted but are hopeful to make it happen soon. Annabelle really is doing awesome now that she have PT twice a week. Both her therapist and I really have seen some great improvements over the last two weeks and I can't wait to see how her legs continue to strengthen once she has those braces on.
Since we all know the best part of a blog is the pictures - here you go! These were taken during her PT session on Monday, August 9th. What a ham she is. I don't even have to say cheese or smile - she just smiles when the camera comes out of the bag. I LOVE HER!!
Did you notice that Emi isn't holding her in these pictures? She is getting SO strong!
August 14, 2010
Sometimes I get comments from people and I'd like to thank them or respond back but I am not always able to because I don't now their e-mail address, they don't have a blog or they don't leave a name. Then I'm left wondering if I will ever connect again.
So, this is my best attempt at contacting a few of those people :-)
Liz - thanks for your recent comment. How is your little guy doing? I don't see your blog anymore and just was hoping that all is going well for you guys.
Shelly Lynn - Thank you for considering making a pillow case for the kids at the hospital. Do you live local?
Anonymous - thank you for your very nice comments. You sad that you found me by googling Dr. Javaheri? I love that you saw Ben's picture at the museum. I'm guessing you live local? How old is your daughter? I'd love to connect sometime. Thank you again for the beautiful God will make a way poem video.
Well, I hope you guys see this and are able to respond. Feel free to comment again or e-mail me directly at: firstname.lastname@example.org
August 13, 2010
Annabelle's legs are getting so strong and she kicks and kicks and all the time - we love it. For those that remember, this is the little girl that did not move her legs at all in the hospital after she was born. It is very exciting to see how her body is changing and developing and how all her hard work at physical therapy is paying off.
YAY FOR ANNABELLE!!
August 11, 2010
It was a birthday gift from her very first friend, Emily and her family. Emily has Spina Bifida, like Annabelle, and her mommy and I became friends right before Emily was born. Emily is 2 months older than Annabelle and just as cute as can be! I'd link you to her blog but they have gone private. I am SO thankful it wasn't private last year because that is how we connected.
Check out this adorable tutu! You know my girlie girl loved it.
She was dancing!
She also got the book "Where Is Baby's Birthday Cake" by Karen Katz
Thank you Keicher Family for your thoughtfulness and for helping to make Annabelle's birthday special! I truly hope our girls get the opportunity to meet one day and to build a supportive friendship like you and I have.
Okay, so I just stole this adorable picture of Emily off their blog (sorry Liz) so you could see how adorable Emily is but also to let you know that this is the face that is motivating her mother to run in the upcoming NYC Marathon in November. 26.2 miles - all in support of the Spina Bifida Association!
If you are able PLEASE help them Conquer Spina Bifida by making a donation to the Spina Bifida Association in Honor of Emily Keicher.
To donate online please visit this page and select "Send a Tribute Gift", and follow the steps to donate!! Please note, you MUST select "In Honor" and put in "EMILY KEICHER" for the donation to be counted towards our team. And by sending an acknowledgment to "Elizabeth Keicher" at email@example.com, I will receive an email blast that you donated.
Click HERE to read more specifics on other options on how to make a donation to the very worthy cause.
1 Very Special Kid
On Sunday, November 7th, Elizabeth Keicher will embark on a 26.2 marathon to honor her daughter, Emily, by running the NYC marathon.
Emily was born June 1, 2009 with Spina Bifida, detected while Chris and Liz were 18 weeks pregnant. Spina Bifida is the most frequently occurring permanently disabling birth defect in this country. More children have Spina Bifida than have muscular dystrophy and cystic fibrosis combined. Every day, about eight babies born in the
SBA is the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those who are touched by this challenging birth defect.
August 6, 2010
I asked Jack to make sure she didn't fall over. It was so precious the way he sat next to her and made sure she was ok. Having a big brother seems so awesome!
She was so happy all day!
August 4, 2010
I just stumbled upon this tonight and thought it was to wonderful not to share.
Project Eli is a video documentary that will be distributed to ob/gyns, pregnancy crisis centers, hospitals, and other organizations throughout the state of Arkansas to help give families, who are expecting a child with Spina Bifida, hope, encouragement and advice from other families who have been in their shoes.
To learn more about Project Eli click HERE
Click HERE to link to the McGinley Family blog
So many of us have commented that if only parents who received a Spina Bifida diagnosis could just meet our children their pregnancy would be so much less scary. I am so glad someone is finally doing something about it. Too bad it's only for Arkansas. Any film makers out there want to do one with California Families?
August 2, 2010
August 1, 2010
We love Stacie and are so grateful for all of her hard work with Annabelle these past 9 months. As you can see they created a special bond.
Here is a picture from one of Annabelle's first few sessions with Staice. Wow - what a difference. There is no question that many of Annabelle's accomplishments have come from having such a dedicated and loving therapist.
THANK YOU STACIE! WE WILL MISS YOU!