August 24, 2010

Bad to worse to you've got to be kidding me?

Let's just start with this adorable picture of Miss Annabelle because the rest of this post is so NOT cute. This picture was from last Thursday at her PT session. Look how happy she looks. Can you believe that less than 10 hours later she was vomiting and that was the beginning of this latest UTI drama.



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.

22 comments:

  1. Just wanted to let you know that I'm thinking of you and your family. You are a wonderful mother to all of your children and they are so lucky to have you. I hope this latest obstacle passes quickly and without further incident.

    --Kendall

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  2. I am Praying for you and your family nicole.

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  3. Oh Nicole, I'm so sorry you have to go through all this. We are praying for strength, peace and for this new bacteria to be GONE. We love you all so much and I look forward to spending tomorrow with the boys at my house & I will make sure they have a fun day.

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  4. Nicole, my heart aches for you right now. It just hurts. I cannot imagine what you are going through. I know you are scared and hurting and angry. I pray for you right now. i pray for Annabelle, for Brandon and Jack and Ben.
    And that picture of all of you is one of the sweetest things I have ever seen.
    Much love to you and may God grant you a peaceful night.
    Love from,
    Greta

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  5. Oh Nicole, my heart just breaks for you and Annabelle. I wish that I had some magical words like "this is just a slight detour and you will be back on your path soon" to make things feel better, but I don't. Just know that the Gibbs' are praying like crazy for you and your family. Praying that Annabelle will be healed from this UTI and crazy bacteria, that they boys will not be effected by this, and that you and Brandon will find peace in this situation. Much love to you and your family!

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  6. Sweet Nicole - I can't help it I'm crying again. But I hate this kind of crying because it's not he happy tears - it's the "i wish I could take it away or help you or something besides write you" tears. I am so frustrated and sad for you and with you - all I can say is you are STRONG. You are going to get through this the way you always do - even though it's just plain and simply not fair and you shouldn't have too - you are going to be an even more amazing mother because of this - even when you feel like you're losing it. And you are inspiring us and drawing us closer to you by sharing all of this with us. I love sweet Belle - I pray that she grows up to be a strong and loving and honest as her amazing mother - but that she never has to endure the heartbreak and stress that it takes for a mother to watch her child suffer and feel helpless. Just know this sweet momma - you have it harder than Miss Belle right now - not that she likes being sick or anything - but she has no worries - she feels safe in your arms - she trusts and sleeps without fear - and that is a blessing. So if you can find peace in anything - take comfort in the fact that she is okay - blissfully innocent - and that none of this is as scary or exhausting to her as it is for you. Just keep holding her and fighting for her and I have faith that sweeter, better days are ahead of you. Much love - Joanna

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  7. Oh Nicole I don't even know where to begin or what to say other than I'm sorry and this sucks and that we are praying for a solution. You should be upset, sad, mad. You are absorbing the strain and stress, and that's hard! Your kids will surely be compassionate advocates from what they know your endure, especially your boys. As they grow they will understand why you do what you must do. You are showing them what love, care, and concern is.

    I wanted to say that we also couldn't get Rx for cath kits...however after a UTI in Jan that didn't clear up and a *lecture* from uro about being super careful to be clean when cathing (duh-like we aren't all creating a clean environment for cathing) I just bought gloves and a bottle of betadine which I put on baby wipes to wipe and knock on wood she's been uti free (she's also on septra daily to help prevent uti's...).

    Also - not that you have time for this now but maybe in the future: the Home and Community Based Waiver (although each state calls it something different). Basically it waives your income and only considers Annabelle's income to qualify. Friends of ours who have an 8yr old with SB alerted us to this. We have pretty good health ins through Chris, however not everything is fully covered and down the line it's expected we'll be incurring even more costs. The HCBW is used as supplement to insurance you already have for Annabelle. It would cover any costs your insurance doesn't. It also can be used for things like asisstive technology, or upgrades to the home needed for accommodating her needs. We've have been in the application process for about 7 months, but we have a service coordinator who manages and handles just this. We are in the final steps now and hopefully will be all set by the new year. It's my understanding that cathing in particular helps qualify. I've never been one for assistance...but medical expenses can be an enormous strain, and help should go to those who most deserve it.

    Keeping all of you in our prayers - the Keicher family

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  8. Hugs to you Nichole, you are a fighter and a warrior for your 3 sweet children. Keep up the good work. God only gives you what you can handle and you are doing super. Tomorrow or today is a new day :-) Thank you for sharing. Cindy Fojo

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  9. Oh Nicole - I'm so glad you take to your blog to keep us all informed and so you can get our your (extremely valid) frustrations. I am in awe of what you do on a daily basis and I hope that you get a break from the bad news and problems for a bit today.
    HUGS and Love!
    Miranda

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  10. So sorry to hear you're struggling right now. I will send extra prayers and good wishes your way. I know it doesn't always feel this way, but you're an amazing mom and all your kids are so lucky to have you!

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  11. I don't have anything to say to make this better, because it just sucks. But I'm saying a heartfelt prayer for annabelles healing and your peace right now.

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  12. Nicole, you and Annabelle and your sweet family are in our thoughts and prayers. We love you guys! It's so tough, these are hard times and it's even harder when the Mama Bear has to come out. I feel like when we are already super stressed and then have to fight for our child, it just takes every last bit of energy left. I wish it were easier to just get the BEST care for these little ones and not have to fight SO hard!
    Please know we are here for you and praying for a better week. Lots of love!

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  13. I just wanted to add that you and your sweet family are in my thoughts and prayers. I am also going to add you to our church prayer list. This has been such a trial for you, and I am so very sorry. Please let me know if you need anything at all. I'm not far away and I'll be there in a hurry. :) love you!!!!
    Karen Orr

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  14. Oh Nicole...

    I am so very sorry you are going through this. I have no words to take it away, and no promises for a better tomorrow...but I have a heart that is aching right with you,I have prayers for healing of mind, body, and spirit, and hope that only good things will come of this...and that you and your beautiful family will be stronger and closer because you've come through this together. Much love, and continued prayers...

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  15. Sending you, Annabelle and family all good and positive thoughts and prayers! Just know you are not alone, hope you'll see that smiling face really, really soon!

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  16. Hi Nicole, thank you for posting this and letting us know what is going on. I think you are more than reasonable in asking for the different caths for her and hope that you find some other ones that will work better for you guys. I will be praying for you all and Annabelle especially. much love friend.

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  17. I love you Nicole. Thank you for sharing your thoughts/fears/worries/frustrations! We're all hear for you...listening and keeping you in our hearts.
    I hope each new day brings you strength and guidance.
    xo

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  18. I am so sorry Annabelle and your family are going through this. Sounds awful and frustrating. Many prayers coming your way.

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  19. Praying for you and your entire family. I am so sorry you are feeling so puny, Annabelle. Hope you are back to your spunky self very, very soon!

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  20. That sounds horrible! I'm so sorry you and Annabelle are having to deal with all of that! We've been really blessed in the UTI department, even though we are cathing. Probably helps we've done it since day 1, so she's used to all of the bacteria. However, Isabella did have surgery on both feet this week, so it's always something, huh?

    Have you tried probiotics with Annabelle? They are highly recommended for the bladder and bowels and are safe for children. I'm sure you could find something that would help at Henry's or Mother's Market as well, these just happen to be the brand we sell and are familiar with. You would just use part of the packet, and not the whole thing.
    http://www.amway.com/Shop/Product/Product.aspx/NUTRILITE--INTESTIFLORA-7-?itemno=AA0114

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  21. Hi Nicole,
    I've been thinking about you these last couple weeks and prayed that you would have some uneventful days. I'm catching up on your entries and am sending a huge hug your way and many prayers. I feel your frustration and anger and helplessness. Please call anytime you feel like venting or just want someone to listen. I'm here for you and wish I could be down there more. Somehow these crazy days turn into routine days and with God's strength we will make it through. All my love to Annabelle, Jack and Benjamin. We love you all and will call soon. Love, Colleen

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