Friday, July 31, 2009

Wishing for a break...

That is my prayer for sweet Annabel. She had 3 good weeks after the surgery and for this I am so thankful. She did amazing during the surgery and after the surgery during her recovery she did as well as she could. We were home in the expected amount of time. She had some great nights with good oxygen levels. She has had long periods of time without miralax, without being cath'd, and with less spells of apnea. I do believe the bowel helped to give her more space and less pressure everywhere. The bladder surgery worked but only briefly. She is now on two antibiotics and still not doing good. We are having to cath her sometimes, I am just not willing/or believe this is in her best interest any longer. She has experienced the psuedomonas and e-coli thus far. I am so thankful for our Dr. B(pediatrician) here locally. I feel we no longer have a urologist. He continues to question me when I go there about how do I really know she has a urinary infection. I stayed with her first urologist over 3 1/2 yrs. because I wanted consistency with her care. So I was told that this last urologist who did her dilation was wonderful and a people person. He is truly not a people person and he has the most combative personality I have ever seen. I have been questioning his care and concern for Annabel. The bulk of the urologist are there at Texas Children's and it is so hard to just switch again. Then I look like I am just unstable. It is not fun to not have a specialist when this is what is her big issue right now.

With that said Annabel is just not coming back. She has some flickers of energy and her sweet self shining through. But overall Annabel tires very easy and is just basically weak. It is hard to know if it is the infections, the combination of antibiotics making her tummy unwell, too much therapy (fatiguing her muscles), her spells with the apnea rising back to the levels prior to the surgery. She doesn't care to stand and sitting is not going well either. If she does sit unaided she hangs her head back and eyes roll back in her head. Overall so weak.

We had an appointment with our pediatrician on Wednesday, for supposedly a well check. Some how since we switched she has never had a well check up. I was sharing some of this concern about Annabel and her overall well being. She asked how long she was under anesthetic. I told her 3 1/2 hours. She said that for each hour she basically needs 1 month of recovery. So for Annabel she should have 3 months to recovery and get back to where she possibly was prior to the surgery. Let's just say I waited 3 weeks and dove right into therapy. Yes, then when she was in the hospital I brought her stander because she didn't appear sick enough to be in the hospital just laying around. With all this being said, we are going to back off of PT and expecting her to stand for long periods of time. This is so hard for me because I want to see improvement and feel that we are working towards a goal. Sometimes I wonder if I have really ever accepted the fact that Annabel may not walk. I have to really question am I doing this for me or what is best for her. I know I will love her and cherish her if she never sits, walks talks, etc. But I keep saying I want what is best for her. I am going to try for now to just give her rest, pump her up with some much needed calories, do some stretching and not have her on such a rigorous schedule of running appointment to appointment. At the end of her appointment Annabel needed three immunizations. She had had all of these before so no worries right??? NOT! They gave the shots, she was such a big girl and accept for a brief gasp of air each time she was stuck, not one tear was shed. This baby endures so much! Hello, I think I need to learn from her. We left, the drive home was about 6 minutes. I went around to get her out of the car and she was purple around the mouth and gasping for air. When she seemed to get the air she wretched like she was trying to vomit. I began requesting loudly for help from inside the house to get her in. We hooked her up to pulse ox and her oxygen was low and her heart rate was 190-200. She began to turn red. She was clawing at her neck and both arms were jerking and shaking. It was frightening for all of us. She was struggling in ways that I had not seen. So yes, I PANIC, and call 911! They were here in about 3 min. giving her oxygen and assessing her. I am embarrassed to say that I DIDN'T even think of Benadryl. So after about 20 minutes I looks at the EMS worker and said should I have tried Benadryl. She said well you can if you want to. Why I didn't even realize right away this was probably a shot reaction and think of Benadryl, I don't know. Maybe because she has never even had the slightest reaction to any shots. They waited with me while I gave her the Benadryl. Things began to improve and I just explained that I felt we didn't need to go to the hospital. They couldn't advise me but I felt they agree that it was probably a reaction to the shots and that she was more stable now. Oh by the way, I did try to call the pediatrician first and they had closed and didn't refer me to an answering service (probably if they did, I was so crazy, I didn't hear it).

Anyway, I don't want to sound ungrateful. We were able to have a good vacation and enjoy good family times. Thank you to all who read and check in on Annabel. It is truly your prayers that keep us going. Your friendships are a great source of strength and so treasured.

21 comments:

The VW's said...

I'm sorry that Annabel isn't bouncing back as fast as you'd like! I'm sorry that she is struggling with infections again too! This must be such a disappointment after her doing so well at first!

I would have never thought of Benadryl either. My first reaction would have been 911 too probably! How scary!

Prayers will be going out for you and Annabel! HUGS!!!

Jessica mommy to Alex/ RTS said...

Oh Cathy, both of you need a break, rest. I just dont have the words, there are none. What you are doing is hard, and heartbreaking, and all at the same time a place to find such joy.
Keep pushing forward. Im here.

Anonymous said...

Cathy,

I'm so sorry. Your words rip at my heart because they are mine to. Our sweet girls, gifts from our God, what would we ever do without them in our arms and in our hearts? I can't imagine. How I wish for them both that they could walk, could talk, could eat loads and loads of calories. How I wish for them to experience a normal childhood free from pain, from discomfort, from all they endure. I look at them both and know in my heart that our God did amazing work when He created these little ones. Those smiles! That joy! There is non to be compared. I know this to be true.

When I consider that Ash may never do all the things I dream for her to do it steals my breath away and then in those moments I snatch her to my chest and feel her breath on my cheeks and thank God that she is here, that she is ours, that she knows she is loved and that she loves us back. What more can I ask for?

You alone know what is best for sweet Annabel and if time and rest is what she needs then I support you 100%. You will know when it is time to begin pushing her again.

Thinking of you and praying for you tonight my sweet friend. Sincerely, Trish

ANewKindOfPerfect said...

Oh Cathy, that must have been so scary. I wouldn't have thought to do anything other than call 911 either! Please don't feel bad about that.

I hope that she feels better soon. I think we all want the best for our children so we push them really hard. Sometimes we need to give them a break. I hope you and Annabel find ways to enjoy your break. :)

Do you think you will end up doing another urology surgery then? We are scheduled for the Mitrofanoff surgery on Sept 29th.

Colleen said...

Dear Cathy,

You are a great momma. Never forget it.

I wish I could say something more inspiring than this: You know Annabel the best and never let the confusion and chaos of a doctors visit get in the way of your intuition. Never. Not ever.

Were praying for you and for Annabel.

Much love and peace to you all, Colleen

Jill Smith said...

I hate to hear that you are going through so much right now. My prayers are with you and sweet little Annabel.

connie said...

Oh, Cathy. I already told you, I'd never have thought of Benadryl, either. I don't think any parent would have. And I'd have called 911. I just wouldn't have had the strength to actually see her doing better, and decided maybe ER wasn't best. So I'd have been sitting there in the ER, too!!

I'm so glad she is ok in that area, but wish things were going as well as they were right after surgery. I wish I could do things to make life easier for you, too. You are such a great example of a mom who gives everything to help your little one accomplish the most that she is able. I have always admired your persistence. But what a mind boggler, what Dr. B said, that the length of time under anesthesia influences how long she will require to recover. Sounds like you are right, that she needs rest. The positive thing about this is that maybe (?) you will get a small reprieve from the pace you've been keeping up. Without feeling like you "should" do more, right? I like the sound of that for you!!

Love you!

connie said...

Oh, and I loved reading what Trish wrote, about how she is just grateful her girl knows she is loved and can love her family back. We are both also so blessed to be able to say that about ours. That is the point, right? Not being able to walk or eat by mouth or potty or (fill in the blank). We are so blessed to be able to have these cuddly bundles of love.

Lauren Ford said...

my prayer go out to you guys, that God leads you to what exactly Annabel needs, when she needs it. i know it is so hard to make decisions for her fragile little self. luv ya'll and i hope every kink straightens out with time~

Mrs Redboots (Annabel Smyth) said...

Just hugs and prayers for you both.

Of course you want Annabel to be the best she can be - and I am sure that sitting and standing, if not walking, will one day be on her agenda. I saw the picture of her you posted the other day, standing up very happily, even though she was being supported by her uncle or brother. She looked as though she was comfortable doing it!

And she does, obviously, have a bit of language, even if she doesn't speak. I think you're doing a fantastic job with her. It's hardest for you - after all, she doesn't know that she's not quite the same as other little girls. You, sadly, do!

God bless you - you remain in my prayers, as always.

Hilary said...

Oh Annabel!! You are such a treasure..I hope that you are feeling better honey!! You are always in my prayers you and your family.....

Kathy said...

Hi Cathy,

Hope you got my email. Praying that Annabel is regaining her strength and old self a day at a time.

You are the most incredible mother and best advocate that our sweet Princess Annabel could ever hope for! Do not doubt yourself, Cathy. Annabel has done this well because of your love, guidance and knowing how much she is cherished!

As for the medical profession, it will take re-educating so they know all the possibilities for T-18babies. They have always been told they are "incompatible with life", well, maybe years ago but not necessarily true today as Annabel is such a sweet witness to.

Hope you two are having a nice, layed back weekend.

Love you girls!!!

Kathy said...

Oops! I did forget to mention the power of prayer! Shame on me!
xo

lost--for--words said...

I am so sorry to hear that little Annabel is having a difficult time... Both of you have been on my mind alot lately. Every day I hope is a good day for her.... Give her some hugs for me, she is such a strong girl!

Anonymous said...

Dear Cathy,

I can feel your exhaustion and your sorrow. It must be so difficult to feel that you are taking a step backward. Especially, it must be difficult if you feel Annabel's spark has sometimes faded.

I wish I could do something or write something that could make it all better. One day at a time....and spark or not, today Annabel is here for your lovely family to love.

I wise professor once told me a story. He said he used to visit a man who lived in an institution every week. He pretty much just laid there. The professor told me that he would hold his hand and sit there for an hour or so. Sometimes the man would squeeze back, just a little.

I took a breath to tell the professor what a wonderful person he was to visit but before I could say that he said, "that man did so much for me." I guess I had not understood until then what I have come to know since.

The special value of our trisomy kids is the fact that we love them no matter what. There are no guarantees of anything ever...whether it is walking or living for another day. But we just do our best and love them everyday.

You and your family do such a perfect job of that Cathy. It is beautiful to watch.

Wish I could be there to give you a big hug in person. Thanks for sharing Annabel and sharing your challenges too. It is all part of it.

Hugs,
Barb

Kim (marygracesummons.blogspot.com) said...

Dear Cathy, I just took a big breath and exhale to read all that you and sweet Annabel are dealing with. I know it must be so tiring. I am glad you know that you have so many people who love you and Annabel and pray daily for you and all of your family. What a scary moment you had - I would have never thought of benadryl either! Annabel is such a trooper. I will pray that you can begin having peace and just wait....I know that must be so hard. I am glad your Dr. gave you the advise of how long recovery might take so you can just relax a little (try anyway:).
I loved the pics of your vacation. You guys look so happy.
I love you and Annabel and will keep praying!!!
Kim

May said...

it sounds like you're having a rough time again with Annabel. I'm beginning to learn that these kids can't take changes well...esp if there are more than one at the same time. Immunizations are so worrisome...you just don't know how they'll take to them. I know what you mean about weakness. It seems like a ceiling, even with Vera. She improves but is still weak overall. sigh...

Anonymous said...

Dear Cathy,
It is so powerless to be able to do nothing for you and sweet Belle!

Please do not feel like it is a reflection on you when you are dissatisfied with a doctor and want to switch. Either this doctor is combatative because he does not want to do any other procedures on a baby he sees as terminal, or he is just a jerk. Either way, he is NOT your man.

You need to find a Dr. B., but who is in that speciality. He or she is out there. After all, Annabel has taught us to believe in miracles, so we look for our miracle doctor. What about the trisomy clinic in Utah? Even a phone consult with the staff there might help....

Also, I bet you are right about all those antibiotics make Belle feel poorly. Your instincts are always correct, just trust yourself, and be really, really good to yourself.

Try to let the next three months be Annabel's "summer vacation" from therapy and busy schedules! Let her be the snuggliest couch potato ever, and just fatten that sweet little body up! The both of you deserve a chance to step off of the "treadmill"!

Hmmm, maybe some matching mother/daughter pajamas are in order...... :)
Lisa :)

Penny said...

Thank you for your sweet comment on my blog. Your little Annabel is a doll! I'm sorry she's not doing well right now.
I read your post from Mother's Day 2008--- I loved what you had to say about each birthmother. So sweet! I admit, I'm a little curious, though. You had 5 grown/almost grown children and still started over! How did you get Annabel--- I mean why did you adopt when yours were already so old? I'm just wondering. I'm 44 and want to adopt a DS child (haven't found one in particular). My husband's not on board with it. He thinks our six girls and six grands are enough and maybe he's right. Why do I still want another child when my youngest grandchild is 5 months old? Why did you want another at your age?

Kelly said...

i am sorry that annabel is still having her UTI issues. we will be sending positive thoughts your way and hoping you find a doctor that is more willing to help. i never would have thought of benedryl in that situation! i would be on the phone in flash! i commend you for thinking of it. tell annabel we hope she rests up and gets back to being herself. give her big squeezes from us.

Wherever HE Leads We'll Go said...

I have been reading your blog for a while, but I am not sure if I have ever commented.

I am so sorry that Annabel is still struggling after the surgery. It breaks my heart that she has already been through so much and cannot seem to get a break.

I pray that the rest and lighter schedule will help her to get back on track and more like her old self again. I am so blessed by Annabel's story and thank you for sharing her through this blog.