Tuesday, April 14, 2009

Behind bars again...


I have been struggling to make this post for well over a week now. When I made the post about a week ago after the sleep study and some of the early findings I was confused. When you read this you see I am still confused over a week later. I have put off making a post directly related to any of these finding but I am going to attempt to write some of what has been discovered. I am not medical and I do struggle to put everything together with much understanding. So if I make a mistake you can feel free to correct me or just hope that eventually it will all be explained in its entirety.
Our appt. with urology went great! Her urologist is very willing and thinks we have exhausted all other methods of helping Annabel with her neurogenic bladder.
Early we did the prophylactic doses of the antibiotic beginning prior to 1 year. We did that until she continued to have multiple breakthrough UTI infections while on the meds. She was in Grade V reflux (bladder back into the kidney) on both sides so her doctor agreed to perform the surgery. This was a success and at this point is not back in reflux. Her bladder now is neurogenic(lazy) and works almost not at all. Then we moved to the cathing and have been doing this for 1 1/2 yrs. About 1 year ago we introduced an antibiotic solution into her bladder with another cathing procedure after her morning cathing and evening cathing. Annabel showed that she could be potty trained and did very well with this. It was found that Annabel couldn't empty her bladder and was still holding the urine so we still had to cath after each potty episode to remove the leftover urine. But I do believe that it is good for other Trisomy parents to know that it maybe possible that our babies can be successfully potty trained if they don't have other UTI issues. She is back to having the infections close together and some before the dose of antibiotic is done. Annabel runs a high risk of becoming resistant to being on so many antibiotics. This has been a problem about a year ago and our new pedi is very conscious of this. The procedure that we discussed with the urologist yesterday (he had mentioned about 3 years ago) is what I have prayed about and have felt lately that this is what Annabel may need. The urologist thought we were at this point also yesterday. I will talk with her new pediatrician at home and make sure she is in agreement with this.
She will have to be sedated and with the new heart and lung issues she will have to be totally cleared before we can move forward.

As far as the sleep study went, she was found to have severe sleep apnea. She as about 2/3 more obstructive vs. central. Her numbers are very high, anywhere from 45-98 epidsodes an hour. This includes both central and obstructive. It is found she desates into the 60's during much of the night. Last week when she was placed on the CPAP she did so well that after only one night we were allowed to go home. She did perfect for 7 nights with no alarms. Friday morning she woke alarming with high heart rates. This was unusual for Annabel and it continues off and on most of the day Friday. We saw the pedi on call at home and she didn't have any other symptoms. We were told to go home and monitor. The next two nights she continued to desate on the CPAP and at times during the day her heart rate seemed much higher than normal. On Easter Sunday she alarmed most of the day and night, so much that I had to keep turning it low. She was placed on oxygen during the afternoon on Sunday and this helped. We were told to called pulmonary on Monday morning and so we did. He gave us the option of going home one more night or being admitted into Texas Children's that day. We still needed to see the urology and then my twin daughters where playing their regional tennis tournament today in Plano. So we opted at that point to see the urologist then head to Plano and monitor Annabel one more night. We could always come back through Houston after the tournament and drop us off to be admitted. I really struggled with this and what was best for Annabel, while heaping on the guilt that I could not be everywhere to everyone at the same time. Tara strongly encouraged me that she would take the twins to Plano and I should stay here. That way everyone would be taken care of and it was what was best. I dreaded going through the ER to be admitted because of the time it would take and exposure to all the germs for Annabel. As I was still struggling upon being admitted, I was brought back immediately and things moved so quickly. Annabel began having much diarrhea, coughing episodes and running a temperature. God quickly took care of my guilt and I had peace that I knew we should be here. Well we knew she must have a tummy bug then and the xray came back with pneumonia in her left lung. Maybe the explanation for the desats while on CPAP.

All was ok until around 3:45a.m. when she began to have many desats while on the CPAP. They had to call respiratory 3 times for more oxygen to be added with the CPAP. After about 5:15 things settled down and she is still sleeping.

Now concerning her heart. As I have mentioned before we were told at birth she had a VSD and bicuspal aortic valve. They were insignificant, the hole was almost gone and that she could live a long time if not for the trisomy with these heart issues. This was by our pedi cardiologist at home whose care she has been under since birth.
After the Echo here in Houston last Friday, other things are being discussed, with the drs. not directly with me. I have been told some of these following things but not with great understanding. That she has several valve issues(4), a LARGE VSD (told this was almost closed recently), an enlarged heart(significantly), a dilated aorta, mentioned a leaky heart and a few others that I will try to get together after meeting with cardiology. It was also said that if she is not found to be a surgical candidate or if surgery is delayed??? Ok, this is where I am totally confused. For four years, I was under the impression that our heart issues were almost taken care of and insignificant. With our pedi cardiologist at home, I also had a very caring friend go to these early appt. with me and who heard the same thing. My mind cannot help but go back to the fact that did the pedi cardiologist just decide this is all I needed to know. Each time Annabel was admitted at home, we were told first thing her heart was enlarged, cardiologist would come in right away and tell me, I told you her heart is ok, she has lived much longer than expected. The Ms. negative Cathy is struggling with the thought that why is he deciding if her life has been lived long enough. The Ms. positive Cathy is telling myself that I am sure his machines are just outdated and that Houston's are just more progressive.

This post is not a total summary that probably makes much sense. I know now she is sleeping peacefully with good oxygen levels, no fever and a beating heart. She has had four good, happy years and I know that God is taking great care of her.
Please don't judge my medical expertise on this writing. I am one that tends not to question until I really have to make room in my mind and deal with it. So probably the next few post will be just ramblings and phrases that I am being told but not necessarily the final diagnosis or outcome. I do know that we(Annabel) is totally in Gods hands, and that Annabel has a very aggressive caring pediatrician back home who follows closely, and that here in Houston she is getting state of the art care. For this I am totally grateful.

18 comments:

Laurie in Ca. said...

Oh Cathy,

I am so sorry to know that you have been carrying all of this in your heart and mind for the past week. I am praying for you my sweet friend to find peace and answers in all of this. Praying for our sweet Annabel too as answers are found for her. Let me know if I can help you in any way, even if it is just to vent privately in an email. I am here for you and praying God continues to hold you and Annabel gently but firmly in His grip. I love you Cathy and you don't have to KNOW the medical stuff, YOU KNOW YOUR GIRL!!

Love and Many Hugs, Laurie

my3sons said...

Cathy,
Please know that I continue to pray for sweet Annabel. I'm so sorry that both of you are going through this. I agree that all is in Gods hands. Katie

Mummy Pauline said...

Cathy,

Thanks for the update.
Hugs & kisses to Annabel.Take care.

Penny said...

Oh Cathy............. I st and reread your post several times. It seems that you are struglling, as any parent would with the logic and medical community. It is impossible to brave these journeys when your guides(the drs) don't seem to see value in life. I know this territory might not be what they see daily BUT why don't they see Annabel as the miracle that she is??
Praying for answers and a clear voice from God on Annabel's behalf. Praying that she is treated with the speed to help her get well.
Praying for you........ for peace and understanding. You are Annabel's Mom and advocate, you know her better than anyone else.
hugs from Ohio.........

The VW's said...

Praying for you and sweet Annabel! I hope that you get the answers that you need and that Annabel's pneumonia clears up soon! God Bless you and Annabel!

Anonymous said...

Thinking of you girls this morning and praying for answers for your sweet Annabel. If I can do anything, if you need anything at all, please do not hesitate to contact me. We love you guys. Sincerely, Trish

Kelly said...

it's definitely awful when you feel like the doctors are holding back the information you need! we will be keeping annabel in our thoughts and hoping that you finally get the answers you need. the little princesses need to be healthy so we can have our annual reunion this summer!

Anonymous said...

You are such an Angel to keep us all posted and updated. Thank you for the news. Know that prayers are going out constantly.

Edie

Hilary said...

Just wanted you to know that I am think about both of you and praying hard... :) Love always!!

Gripping Mercy and Grace said...

Oh sweet friend, my heart yearns to be there with you and help out however I could. Medical stuff, facts and acronyms, hospital lingo is all so hard to remember and figure out! I will be praying for a clear sharp mind and that you get the much needed answers that you need! Little miss is in good hands, I know you know this. Know I am thinking of you both and hugging you close!!!!!

May said...

It's strange isn't it that her heart was ok and suddenly there are so many issues. How about getting a second opinion? Hoping you'll get a more definite understanding of her heart issues.

Mrs Redboots (Annabel Smyth) said...

Thank you for the update; I'm sorry you are so confused about what is going on inside Annabel - it must be so alarming and difficult for you.

I do hope and pray the doctors can address these issues and prolong Annabel's quality of life for as long as possible - she is such a happy little thing, judging by the photos you post.

Still praying for "my namesake".

Alyssa's Mom said...

Cathy,

Thanks for keeping us in the loop your paving the path for us who are following close behind on this Trisomy journey. We are learning from you and with you. I'm saddened to learn that Annabel and you are dealing with all this conflicting/confusing information; trying to process it while keeping healthy...much wisdom is needed and I will pray that you will be graced with wisdom. As you indicated God is sovereign...just call upon Him for direction.

Proverbs 16:3-4 Commit to the Lord whatever you do, and your plans will succeed. (4)The Lord works out everything for His own ends~
Trish (Alyssa's Mom)

Anonymous said...

My heart goes out to you with all of these concerns Cathy. The suspicion that maybe things weren't done appropriately is such a tragedy. Like you say, you do have some great docs that you completely trust and that is what is important right now.

Yesterday was our human rights hearing for Annie's(trisomy 13)very concerning medical care at a World Class Children's Hospital.

We had two big TV stations and a newspaper there.

update on www.anniefarlow.com

Please keep us updated on sweet Annabel.

Barb

ANewKindOfPerfect said...

Cathy, I am so sorry to hear all of this that has been placed on your shoulders this week. Please know that Anabel is in our prayers.

I'm wondering if the urology procedure you're considering is a vesicostomy? We've been told that's a possibility in our Peanut's future as well.

(((hugs)))

Katie said...

I have been thinking about Annabel all day and hoping that she is feeling comfortable and that you are getting some rest.

Anonymous said...

Thanks so much for keeping us posted! we are praying for you all~ take care and know that i'm thinking about you both each moment~
~LaLa (Lauren)

Lauren Ford said...

I finally figured this thing out! yea for me! you get my name and a pic!lol