Wednesday, April 15, 2009

Two Doctors and a Baby...


Could this sound like a TV show??? Today brought us two wonderful doctors. Actually, I met the pulmonary dr. yesterday and then today. He was so patient and spent time answer my gazillon questions. Also, the cardiologist spent time with me understanding the heart with diagrams and telling me why all these things are ok for Annabel right now. I use to be a major worrier, but somehow with Annabel I can only worry about what is the here and now. I guess being a senior citizen raising a baby there is only so much room left in this brain for storing information.

Her heart is fine for now. He said her VSD is large BUT because of some tissue that is acting like scar tissue to help lessen the hole the blood passing through is not causing her problems at this time. To make this short, I will mention quickly that all 4 valves are abnormal, heart is large, and aorta enlarged. I have all the numbers and medical terms. In short, Annabel is doing ok concerning her heart. They will watch her closely and monitor her progress. He doesn't believe that any of these oxygen levels are being caused by her heart. I am so thankful that I don't have to be faced with making any decisions that I have prayed I would not have to make.

I had some questions concerning her CPAP that I was able to ask today. Annabel has scarring on her left eye. She sleeps with her eyes open slightly and therefore this caused the drying and the scarring. My concern is that this air blowing right by her eyes all during the night will cause further damage. He verified that this would and we will have to keep her eyes very moist now throughout the day as well as night. Not a big deal but I don't want it to affect her vision. This is one thing that we have hope that she will continue to see well.
The other issue is that she has sinced seemed even gassier(is this a word)? Her tummy fills full of air. Yes, in fact this will cause her to have more gas due to the air being forced in while sleeping. Again, not a life threatening issue we will just have to deal with.
The plan was if all went well and she did good on the CPAP we may go home tomorrow. This meant that she had to tolerate the new level for the CPAP. Last night the level was not good enough and she needed 5 liters of oxygen fairly early in the evening. The doctors this morning wanted to up her level on the CPAP to 8 at bedtime. We could tell when Annabel was getting tired for her nap that her level began to decrease and by the time she was falling asleep she was getting lower than they wanted. So respiratory came and set the level to 8. She was ok for a short nap but I do think the added pressure made her restless.
Annabel decided to roll out the welcome mat for her sister Tara's arrival. She began vomitting and having bloody loose stools. We had been clear of any stools since yesterday around noon. YUCK! She did have a hard time going to sleep due to her tummy troubles but is now asleep.
They have set the CPAP at 8 and with 3 liters of oxygen. This is where we are now and I am going to try to get some sleep. My plans were to let Tara have the night and I sleep somewhere else(here in the hosp) but with Annabel not feeling so well I am going to stay here close by. They key to getting out of this place is that she be successful with the CPAP. I would love to go home tomorrow and sleep in my bed but only if we are going home to as few alarms as can be.

God continues to watch over Annabel. He brings wonderful people into our lives. He took away the doubt about our cardiologist at home by bringing this new cardiology doctor that just happened to know him. I am grateful for the peace that my heart feels concerning this matter.
In light of all Annabel's issue they pale in comparision to what Kathleen is about to face with her baby, Stellan, Jonah and so many others out there that are in desperate need of our prayers.

9 comments:

The VW's said...

Praying that this new CPAP level will work and that you both will be sleeping in your own beds very soon! God Bless You!

Anonymous said...

Cathy,

I love your sense of humor, but WE ARE NOT SENIOR CITZENS. I can not thank you enough for all the updates. I know you are exhausted.
Give her lots of hugs and kisses for me.

Edie

Hilary said...

Cathy,
You and Annabel and well your whole family and in my heart and prayers!!

Kathy said...

How exciting to watch our prayers being answered! Thanks for the update and thanks be to God for so many answers you were looking for!

So grateful that the doctors have been kind and compassionate to you and our sweet Annabel. Very glad they have taken the time to explain Annabel's issues in a way that you truly understand and be able to understand how they impact her at this time.

Hoping she is feeling much better all ready and that you were able to get some sleep. Bless your Tara for being there for you and her sister!

I have to agree with Edie, Cathy we are not senior citizens...yet!

Prayers continue for you all!!!
Kathy

Mrs Redboots (Annabel Smyth) said...

Thank you for keeping us posted; I'm so glad she won't need heart surgery in the immediate future. I hope they'll be able to get the CPAP to a sensible level for her, and enable you all to sleep soundly in your own beds.

May said...

am very glad about the heart issue being understood. do get some sleep...you've had a long week. yes I do hope annabel continues to see well.

Renae said...

I am praying for you so much!! I know that getting the CPAP tweeked is the key. Dawson was on a 6 at first and then started having problems and is now up to a 10. I will also be praying specific for that VSD to close. I know when Dawson's ASD closed and the VSD was still there, he started having trouble with his sats. That is when they had to do the PA Banding on him until he got big enough to have his VSD repaired. What are they telling you about tracheomalacia? I saw that in one of your blogs.

Just know I am praying for you and if you ever need to talk please don't hesitate to call.

Give Annabel hugs from Dawson and tell her that he said to get well soon so that they can meet at the conference.

Talk to you soon,
Renae

Anonymous said...

Dear Cathy,
Please keep the updates coming - Belle is on our minds constantly! We just want to say again what a wonderful job you are doing! We know you do not always post about how hard things really get, so please know that we are all praying for you as much as we are that precious baby! You are a true inspiration Cathy! We love you!
Love,
The Bond Family

Anonymous said...

OK, so I've caught up with you, and finally gotten to read some of this stuff you blogged while I was away. WOW, when you guys do excitement, you always seem to do it BIG!

I had to laugh, because I had the same reaction to the senior citizen comment you made that the others did, so it's where I decided to comment first. You have a crazy sense of humor!

At least I was certain it was you blogging, and not Tara, because sweet Tara would never, ever make such a joke about you!
connie