Saturday, October 18, 2008

No answers and I am furstrated...

Well her oxygen needs continue to increase. She is on it most all of the time. We do remove her for short periods of time. This post will not be long as I don't feel very positive at all. She sounds like she has a really bad respitory infection, but yet this weeks x-ray said clear, last weeks said asthma, pnemonia or bronchitis. It also mentioned enlarged hear, but this weeks didn't mention it. We had appt. with cardiologist and I had place way too much hope that we would get answers. We got absolutely none, I left very weepy. He says she has developed sleep apnea and also aspiration and that is why the x-ray showed what it showed the week before. The doctors are agreeing to leave her on oxygen, but I am so black and white that I want a reason as to why things are changing so much. As to my knowledge we have never had aspiration, but I knew this was a possiblity. We were told when we were in Dallas, during the evacuation about 4 1/2 weeks ago that she was faily enamic and that we needed to address this when we returned home. I told the dr. but I guess the communication had a glich in it and I asked again this week at his office. He was sending us for x-ray, lab and urinalysis. She has been pale and very tired. When I called for the results it show she had probably UTI(after 5 antibiotics) and that he levels were ok concerning anemia. I was confused! Tonight we had to go get Rochephin shot after the pediatrician close and when the doctor review the labs from the hospital this week they were concerned about her levels indicating anemic. They wanted me to address this with follow-up this week. I am totally confused. They commented that several level were off (abnormal). She had had bleeding several nights when she coughs but it resolves quickly. all of this with no answers! Maybe the most frustrated I have been. I really feel like no one wants to find out why she has this drastic change. She is not eating near the amounts orally that she has always eaten and this does scare me. In March when she totally stopped taking liquids orally, she had been slowly decreasing her amounts for seveal months prior. This seems to be happening with her foods that she eats by spoon.
Please pray that if there are answers we can get them. Also that we will get into a pulmonologist soon. I think if I hear it will take months, I will, lets just say not be happy! I have heard of others having some sort of hypertension in their lungs but Annabel has always seems to be ok.
Know that I am so appreciative of all the prayers and phone calls asking about Annabel and if they can do anything. Oh how I am so blessed with beautiful friends. I truly don't deserve it. I have friends in need from storm, or I need to attend funerals, I forget birthdays, and many more than I am not getting acknowledged.
Monday we will drive to Houston for a VCUG, renal ultrasound and to see her urologist. I normally leave this appointment frustrated also. She is basically living on antibiotics and I worry about when she really needs them and she will be resistant from the continued use for UTI's. Will let you know more and I am really thinking that after this shot tonight tomorrow will be bright and cheerful.

20 comments:

Barb said...

praying big time for your beatiful little girl :o) Barb

Mrs Redboots (Annabel Smyth) said...

Love and prayers for you all.

Ashley said...

Cathy,

I'm so sorry she is struggling. The anemia sounds as though it needs to be addressed. Is her hemoglobin low on her labs? The pale color and lack of energy and the need for oxygen could all be related. When Ash is low on blood she has the exact same symptoms. The blood carries oxygen to the body and if she is anemic this may be part of the problem with her need for increased oxygen support. I don't know if this helps, but I wanted to encourage you to keep pressing them for answers. It sounds as though they are confused. I'm thinking of you girls today and I will pray for some direction and answers. God bless, my friend. Trish

Anonymous said...

If you were not frustrated, then we would all worry about you! Showing the difficulty and the frustration this journey brings is what makes your blog authentic and healing.

You are fighting the good fight, don't give up! Your search for answers will eventually bring you the right one, and your blog may provide someone who finds themselves in a similar situation in the future with a quick answer!

Information is power, and the sharing that all the mothers do on the blogs is such a beautiful thing! Stay strong and honest!

We love you!

The Bond Family

The VW's said...

I'm so sorry that Annabel continues to not feel well and that no answers brings about such frustration! I know that I would feel quite frustruated! Poor Annabel and poor momma! I'll be praying! God Bless You!

Kathy said...

Oh Cathy!

How upsetting. My heart goes out to you and Annabel!!!

I agree with Ashley. Sounds like anemia big time.

So relieved you are on her side and I know you will do your very best to make sure that this puzzle gets figured out - and quickly!
You may need to get very demanding and make some strong comments in order to get in to see the specialists you need.

What about contacting that doctor that you know and love so much that really advocates for special children like Annabel? Maybe he can give you some direction.
There are variables you are working with but it seemed to all start with the storm's damage so I think the air quality must very much affect Annabel's little lungs.

Know many, many prayers have, are and will be lifted for you and your wonderful family. Prayer for wisdom, medical answers and prompt, correct medical treatment. Strength for you and restored health for Annabel!
We need to see that beautiful smile on her face that is soooooo
contagious!

Love you girls!
Kathy

Chrissy said...

You all continue to be on my heart, in my thoughts and many prayers will be lifted up on Annabel's behalf.

Cathy said...

Just a quick post to say thank you for visiting Annabel's blog and your prayers. Some of you I don't know and you have no email address so I cannot personally thank you. Know that your thoughts and prayers are always appreciated even though I may not be able to respond.

Cathy said...

P.S. Also I appreciate all suggestions. I have called the specialist and the only way they will make appts. is if Pediatrician calls them. Also I will question more this Monday about the anemia.

Kenzie said...

Cathy-
I'm so sorry for the lack of answers, the obvious and understandable frustration, and what appears to be a nonchalant attitude about all that is going on. This worries me so much... but I have to remember, as we both know full well, this is in the Lord's hands. I completely think that someone should be able to provide a certain amount of clarity and come up with a plan-of-action so you know where you are heading... but again as we know, that often doesn't mean it will happen.

Please know that there are SO MANY praying for you guys, praying for sweet, adorable Annabel and for her healing.

So much love and prayer... and if there IS anything I can do from a bed here in Houston, please let me know :)

Love you!
Kenzie

Laurie said...

Cathy,

I am so sorry for this frustration on Annabels behalf. I am frustrated for you and will be praying for some solid answers here. Asking the Lord to keep her safe and for you to have peace in your heart. This is such a hard road you travel, but I know you do it with the love of a mothers heart. I know He holds her in His hands and pray that He keeps her safe and heals this problem. I love you Cathy and I will keep praying my friend.

Laurie in Ca.

Kelly said...

i am so sorry that you are not getting any answers from the docs. we'll be praying for lil annabel and hoping she starts getting better soon.

Connie said...

I hope the Rocephin has kicked in and that she's doing much better today.

May said...

cathy, i share your frustration at dealing with the doctors. you are right in getting the feeling that no one really wants to find out what's really up with her. i pray for her fighting spirit to get her through and that she'll come off the oxygen soon.

Hilary said...

Annabel you poor thing!! i am praying that you get back to your sweet ole self soon!! I can only imagine how worried your sweet Momma is!! Praying!!

Jenna said...

We will be praying for answers and healing

Kathy said...

Praying, praying, praying!
Hoping improvements are all ready being seen!
Love,
Kathy

Anonymous said...

Does Annabell still have her tonsils? Your snoring comment and the clear chest xray made me think about that. The other thing I wonder is if the back of her airway is getting kind of "floppy" so she doesn't breath well. An ENT may be helpful if you can't see the pulmonologist soon. I wish I had great answers for you Kathy, but I will definitely pray like crazy!

Love, Dr Brown

Tamara said...

Cathy, I was so hopeful that things would be better upon returning here. I am so sorry for your frustrating on going battle. Please know friend that I am praying for you outside this ring of fire that encompasses you.

I know you know that as you stand tested and tried you shall not be burned, our Father is there, right by your side. He knows and will direct your path to get the answers you seek. It's hard when is seems we keep hitting those dead ends, but perservere, do not grow weary, daily lay the battle at His feet and draw your strength from Him before each appointment.

I was just reading the book by Dr. Sues "Oh the places you'll go" to my boys and its true we will indeed walk all kinds of paths in our life... But out Lord and Savior has already walked them before us and is with us and waiting for us at the end of each turn!

My heart is with you, please give my sweet angel a hug and many kisses for me.

I am praying for strength, steadfastness and peace for these next few turns down this pathway.

Tam

ANewKindOfPerfect said...

Oh Cathy, your frustration and worry is so clear in this post. I hope and pray that Annabel feels better and you get some answers soon.