Tuesday, July 27, 2010

July 27: Day +25

This beautiful quilt arrived in the mail as a gift with a matching one for Ali from one of Angelique's high school mates. Thank you, Heidi!

Here are the words:

A quiet day for some,
but not our new nurse,
annoyed by the care
that she had to give,
despite her job title:
INTENSIVE care nurse.

The manager? Off on vacation.
Her cover? The one who paid no attention
to the last time I asked
for a nurse to steer clear,
yet through Bella's door,
recently in walked this dear.

Left with only one option,
the charge nurse umbrella
she came through for me so
with the right nurse for Bella

A seasoned professional
even keeled and cool jets
Please, no more rookies,
just give me the vets

who talk less and do more
with a smile and an ease
that allows us to rest
I beg of you please.

I'm left unto verse
to spend my words freely
For the prose that precedes
today's post is clearly

not enough to persuade
the powers that be
so I turn unto you
please Lord can't they see?

It's not automatic
to care for EB
I know this, you know this
so how about we

stop for a second
take a breath, maybe two
then find your self present
with what there's to do:

Make eye contact,

For my patience is low
and my fury is high
I am not here to teach you
but maybe I'll try

to be more forgiving
patient and nice
if I could be willing
maybe that would suffice

because to wish any different
is fantasy and lore
your here on you "shift"
like it's one big chore

never mind that a life
may hold in the balance
just as long as you get
your break allowance

you'll check all your lines
and empty your bags
but don't touch my daughter
unless you have asked

what works and what doesn't
the right way to treat
a helpless mute child
whose skin is so weak

that fingertips tear,
tape shears right away
she can't tell you how
you have hurt her today

It's left to me,
on this little page
I have to release this
my soi disant rage.

Here are the numbers:

Weight: 12.8
I/O: +236
WBC: 4.0
ANC: 2.6
BILI: 2.1
CSA: 297

Creatinine and BUN are being dialyzed so they are no longer relevant numbers.
BMT docs are not worried currently about WBC and ANC numbers. CSA is back on track. Bili continues to drop which is SUPER.

The goal is to end up at ZERO for I/O's right now as Bella's blood pressure is a little soft and her echocardiogram suggests we might be pulling fluid out of her blood faster than it can infuse back in from the areas it has built up.

Nanny leaves early tomorrow morning, and we say THANK YOU, NANNY for helping out so much these past two weeks.

Docs are overall pleased with where everything is at right now with Bella. Now, if I could just get some headway with the new nurses Bella keeps getting. Now that she is on Prisma, there are only certain nurses that are trained on it, so the applicant pool gets smaller. The more experienced nurses are where it's at. They aren't freaked out by EB. I hate that I am so worn out and it is more from the staff than my daughter's condition, and P.S. she's in CRITICAL condition.

I'm sure many of you have faced this dilemma in your lives at some point. 23 days in an ICU and I have no buffer left. The difference between getting a good nurse for Bella and a bad one makes or breaks the day, and I thought I had my fill of nurse manager conversations. Guess not.

I need some rest. Thanks for listening; it is stormy outside tonight, and apparently it's a little stormy in here as well! Good night.

Ali catching a "daddyfish" with her Barbi fishing pole. Don't ask what kind of bait she used.

Ali decorated cupcakes for us for when we came home from the hospital tonight! Sweetheart!


  1. (sigh)
    Prayers for strength for you...
    Beautiful blankets...wrapping your daughters with all of our love :)

  2. Looks like someone partook in a well deserved, refreshing beverage. Good for you! Cheers!

  3. Jack and Molly's NanaJuly 27, 2010 at 10:16 PM

    I know we ALL want to know about Ali's bait? Seriously...what was it?
    Hope tomorrow you can "hook" yourself (sorry - I couldn't resist) a great, caring, knowledgeable and compassionate nurse. Things will look brighter in the morning; they're always darkest before the dawn.

  4. Love the blankets...too cute!!! So glad the numbers are holding their own and doing well. I'm sorry that it has become such a challenge and yo-yo effect, in finding a great nurse. It's mind boggling that nurses in the PICU, can be so heartless...unreal. Can you find out the schedules of the nurses you really enjoy, so you can go to your 'B' nurses to request when the 'A' nurses are off, before given the cold hearted ones? I know that the scheduling is done in advance, and you have the right to request a nurse you prefer. Praying for Bella today and always.

  5. Tim - I can't even imagine what it is like to be you. Please just try try to understand that the medical staff aren't out to get you. They are truly trying to help you. You seem to be so angry at everyone who tries to get close to your daughter. I understand, but please give them a chance. They truly aren't inconsiderate, or wanting to hurt Bella. Please find some room in your heart for these well intentioned people. You have to acknowledge that they want only the best for Bella and would never knowingly do anything that would hurt her, You are an amazing Dad, but please try to find find room in your heart for all of these dozens of people who are trying to help you and Bella.

  6. Darling blanket. Prayers for your family and the medical staff.

  7. Hi Tim: Beautiful quilt and a beautiful poem for your beautiful Bella. Glad that things are getting a little bit better.
    Extra prayers for GOOD nursing care and nurses that really truly care.
    Anonymous must be a nurse. They don't realize what is involved with an EB child. You aren't angry when someone gets close to your daughter, you are just protecting her. Keep up the great work, protecting your child.
    Hang in there. Love Leah's Nana

  8. Praying hard for nurses who feel their work is a calling, and not just a job. For the staff to feel the kind of love for Bella that we out here in cyberspace feel for her. And for you to know that you are exactly where you need to be for your beautiful baby girl to get well...love and hugs to you all.

  9. Waxing poetic....nice! And that blanket is just darling. Above all, continue doing whatever you need to do to protect Bella. My dad was just in the hospital for 2 weeks, and we never left him alone. Sadly, that is often necessary.Praying - as always.

    A friend in NC

  10. Just a footnote that I may forget by tonight. In the ICU, you have a nurse in your room 24x7 that you are paired with. The room is 10' by 10'. So, the impact that the nurse has on the room is far greater than in a typical room where you may not see your nurse for an hour or two depending on level of care. When that nurse is working a 12 hour shift and has a bad attitude, (sorry, Anonymous, there are bad apples out there... I have plenty of great staff here that I love and am sad to see leave when they rotate off), it makes those 12 hours ETERNALLY TEDIOUS and you feel like it's you... till a nurse with a good attitude walks in and the weight of the room INSTANTLY changes. Then you realize it's NOT you after all.

  11. Tim
    Reading your post and your other posts about the difficulties with the attitude of professional caregivers of some nurses and doctors you have encountered, I pray that these folks were not always this way but had entered the medical profession with a desire to help heal the sick and injured, bringing them comfort. I pray that those who are working with you and treating Bella find again the passion that brought them to medicine in the first place and that they may find the balance in their lives, summoning the strength and energy to rededicate themselves to caring for the sick. From that passion and the belief, I pray they will remember that their jobs are not just jobs, but professions of service, and they will help Bella follow a path of healing and recovery.

  12. What a beautiful blanket! The poem was well written and heartfelt. I pray that you get a good nurse tonite!

  13. Ang here....I feel the need to further clarify about the nursing staff. We have had and do continue to have some WONDERFUL nurses who have been real advocates for Bella. For them we are truly grateful. What concerns me is watching some staff get flustered and then practically knock over equipment because of the level of frustration they were not able to get under control. It is not intentional at all. But even a non-EB child can be injured under these circumstances. In the ICU cooler heads must prevail. If my child gets hurt due to an error, it doesn't really matter that it is unintentional. The result is the same. So, we as parents can have a certain level of patience w/ a nurse having a hard day up until we see it start to effect Bella's care.

  14. Hi Tim,
    I can hear and feel the pain and frustration in your written words, it makes me sad, tears flowing, i am so sorry you feel this way. Please know that you have so many people, so many strangers thinking of you all each and everyday. Please take the power of each one of these individuals, let the love and prayers lift you in spirit anf bring you peace this morning. You and your family are not alone. We are here for you, next to you, present in Bella's journey. It's like the verizon wireless commercial, when the cell phone user looks back he has a large army working behind him. Well, we all are Bella's large army! Signed up, stationed and ready for battle! You, Ang and Ali are doing amazing, Bella is so lucky to have you all as her family. And we are so lucky that you have shared your sweet daughter Bella with all of us. I thank you. In regards to the medical staff and the posting from Anonymous above, You owe NO ONE an apology for your actions and words. Please remember never to feel one ounce of guilt in regards to this matter. Of course you are grateful for all the treatment Bella is receiving and God knows this. You are just a dedicated father, who is scared for his daughter's life. I cannot relate, but will pray with all of me for this feeling to pass. For Bella's long journey to be looked back upon as a small hiccup in her life. I know that she is going to get through this. And with you sharing each day, that feeling in me grows stronger each day. I have been sharing your story and I know your family has been added to a prayer group in South County.

    Dear Lord,
    We thank You, we praise You and we rejoice today. Thank you for the beautiful sunrise this morning, thank you for the Ringgold's and their dedication to battling EB. Their strong sense of friends, family and faith has reached so many. God, I know you are there with Bella at this time. Please Lord touch her sweet hand, let her feel the thousands of prayers and fill her body with this love. Help her to recover and her skin to heal. Lord we ask this of you. We thank you and praise you dear God.

  15. An absolutely beautiful blanket and an amazing, personal gift.

    As to the nursing staff; Tim is not angry when some gets close to Bella, he is protective. Protective not only as any parent would be but through experiences he learned that make it a necessity.

    While we know that no one would knowingly do anything to hurt Bella, it is the NOT knowing that is the problem. I was raised in the "hills" where everything has a saying with it, the first thing that came to my mind was the one that says "the road to Hell is paved with the best of intentions". While sounding a little harsh it simply means the best of intentions are worthless if they cause harm.

    I am sure the PICU nursing staff is well qualified in their field but equally sure that most have not worked with EB children. I am sure that Tim and Angie have more knowledge about EB than many of the staff and 100% sure they know more about Bella's needs.

    If the staff will apply their skills with Tim and Angie's guidance then Bella will receive the best of care and that is all any parent could ask for .... and any grandparent.

    Bella's grandpa Rodger

  16. Hi Tim. Sorry it's been so long since I last commented, please know that I pray for Bella and check in every night. I am truly sorry that things have not been plain sailing through this (it was never going to be) But I truly believe that Bella will get better from here on out, and I'm praying for it constantly. (Also, I dont know how much of a risk it is, but I pray every time for no GVHD because that would be awful)

    In regards to the conversation above, I totally understand your frustrations. It's not just Bella that the nursing staff have made 'mistakes' with, so your anger is completely justified. You're not imagining it, mistakes have been made with Daylon too (I follow his blog also). So you are so right to be protecting Bella from that!!

    (also, I know you say you are not there to teach, but how much did you know about EB before you had Bella? Nurses aren't superhuman. Unfortunatly, you and Ang are two out of very few people in the world that know what EB truly is, textbooks dont substitute real-life situations. Have you thought about having lists of 'dos and don'ts' by Bellas bed?)


  17. The poem format was brilliant, it must be hard to recount all of your days events every day, especially since each day seems to be so action packed. Thanks for the wonderful updates, we pray that Bella will heal and new healthy cells will flourish.

  18. Tim, I'm so glad the girls got their blankets. May they feel the love and prayers that come with them. XOXOXO