Thursday, April 2, 2009

Long awaited date...

This post may ramble, have typos and may not be totally accurate. For those of you who may not have been following Annabel's blog, we have been awaiting a sleep study for approximately 6 mths. now. When I learned of this back in Nov. I couldn't believe something that was so needed could take so long. I called so many times for cancellations and never any to be had. Since nothing could be done to speed up the date I had basically quit monitoring Annabel just to reduce much of the stress to my sleepless nights. Last week I hooked her up due to her having a bad night or two and knew she was still have low sats in the 40's but just unhooked and prayed that this was just not accurate readings. After all, nothing could be done to speed up the process. Each time I inquired I was told without this sleep study nothing could move further ahead. Their answer was always without this study we can make decision on her treatment.

So the day finally arrives and the hospital calls to confirm will we be there. Duh, of course, nothing could keep us away. They told me what we would need and what to expect. I specifically asked about what and how much i need to bring and we were told we would definitely be going home by 6:30 the next morning. That we would not meet with any doctors or have any reports. Also, that the technicians could not tell us any findings. So after Annabel doing amazingly well and falling asleep so nice after 1 hours of hooking up of wires, probes, belts etc it was done! They woke us at 5:45 to get all the things unhooked, get her dressed and to be told we needed to wait in the waiting room that the doctor would be coming by to tell us what they found. After waiting about an hour, this cute pregnant doctor came in and commented on how cute Annabel was dress so early in the morning. My response was that her class was going to the special needs rodeo today and that we should arrive just in time to be with her class. The. doctors response was exactly "Oh No, you aren't going anywhere, she needs to be admitted and monitored very closely. She said, please promise me you will wait here and go nowhere. Someone will be calling me on my cell phone very soon to be admitted. She said she had not reviewed the reports in full but had receive a call very early concerning Annabel and so she had come right in. Things happened rather quickly, going from an observation room then PCU room. As you can see from the pictures that Annabel looks very good. What is taking place mostly is during the sleeping hours, less during the daytime.
So our first doctor to see on the team was a very sweet, patient doctor from pulmonary. I won't mention names, but she was great at allowing me a gazillion questions and wonderful at her explanations. We knew coming in here that there are basically two types of apneas, obstructive and central. In our minds that obstructive would be the best case scenario. The doctor (pulmonary) told us that she does have both type of apnea. She says the obstructive is very severe and lasting too long. She feels sure this is affecting her heart and will have to do further testing on this. The central apnea is considered moderate in the fact that her periods are not lasting as long as the obstructive. She explained that with the obstructive, that her chest is still moving but something is preventing the air from entering. The central is that the chest is not moving, so this is problem that is not so called fixable(overall).

Some of the things they are doing for the obstructive first is the C-Pap. They did begin her on C-pap tonight and so far she is doing so well. The nurses say this is normally hard for little ones to tolerate but after being told no, not to touch, she fell asleep. She has a harder time getting her pappy in so I just need to be close by to insert pappy rather quickly. A few of the other fixable issues are tonsils being enlarges, adenoids (sp), large tongue, with a few others. The things not so fixable are the small jaw, extremely low muscle tone, very small, floppy airway and a few others. So tonight they have already done one procedure and found that her tonsils are not an issue they are quite small but that her adenoids are of good size and that she has very much edema(swelling) in the nasal area. They called off several other issues that they said we would discuss further tomorrow. The will probably be doing a bronchoscope (sp) to look into her so called trachymalasia(sp). At this point if surgery (i.e adenoids or anything else) requiring sedation is to be required they would rather do the bronchoscope at that time.

I do know this is rambling and if anyone knows anything medically I am sure I am not making too much sense. They pretty much want to get the team of specialist together and then we have a meeting and plan. Two doctors have already told me today that if it was central apnea that we would really have to sit down and come up with a plan as how we were going to progress with Annabel. This talk is not new to me. God has been so unbelievable in Annabel's life and I have the utmost faith that he will continue to be. I just think that we may have a new machine or two around and that she may need some small type of surgeries to help with her airflow.

There are so many out there that are much sicker than Annabel, so as we continue to pray for them, just say a quick thank you that Annabel's long awaited study has arrived and just today we have met some incredible doctors willing to listen and understand Annabel's precious life.


May said...

yes I remember some time ago you talking about a sleep study, I think it was last year! well, at least now you'll get some answers. Annabel is being so cooperative with the study. Vera will be having hers this month as well. Hope it'll be obstructive and not central as well. i can imagine with the beeping machine you basically won't be getting any sleep!

Kim ( said...

Oh Cathy,
that precious sweet girl just melts my heart. She is so so precious! She is such a good baby, such a trooper! She looks so pretty in her sweet little dress. I will be praying for our sweet little friend Annabel and you and I praise God for the sleep study coming through for you.
With much love,

Mrs Redboots (Annabel Smyth) said...

These things always take ages to come around, but now that it has, I hope and pray the doctors will be able to find a way of enabling all of you to get great nights!

Anonymous said...

It is unfortunate that it took so long to get that test but I sure am impressed with how seriously the doctors are taking the results. It is clear that nobody has taken the position, "oh well, its just a tri 18 and they don't live long" so that is a very, very good thing. I commend your doctors.

My feeling (based on no medical education mind you) is that if Annabel did not suffer from newborn apnea it would be unusual if central is an issue now.

The most important thing is that you are all in good hands. It is a blessing that Annabel is not fighting the CPAP machine.

Thank you for the update.

Annie's mom

Brenda said...

Praying for you guys I always do.



Jessica mommy to Alex/ RTS said...

Wow! Im so glad you are passed the waiting on the study.
What a sweet girl going to sleep so well with all that stuff on her. So precious.
Thinking of you, hoping you get all your answers, and decisions made soon!

Laurie in Ca. said...

This was quick Cathy and I am so thankful they got her in. I am praying for all the issues to be dealt with and make things more peaceful for you concerning her sleep. Her pictures are so cute, as always, and she is a true trooper. I am thankful you are finding answers to all the questions you have had. God is faithful and will continue to be. I love you and Annabel and am praying.

Love and Hugs, Laurie

my3sons said...

I'm glad that Annabel is getting the care that she needs. I'm sorry she had to miss the Rodeo though:(
I think she did great to actually sleep with all that "stuff" on. I don't think too many children would be that cooperative! Good girl Annabel!!

Kathy said...

Your team of doctors sound great! You must be so relieved they are finally on the case!

Thank you for taking the time to update us.

Annabel is amazing. To be so sweet and cooperative. It is as if she totally gets that all this "nonsense" is truly to help her feel better. She may have had the best sleep of her life with her Cpap mask on!

Praying for wisdom for Annabel's team of docs and praying for real answers and very effective treatment path.

Love and prayers!

Kelly said...

wow. i'm sorry that you had to wait so long to get this study done! but what a strong girl to be going through all of this with her airways and still make all the amazing improvements she has made! hopefully you will get quick answers now and be able to help annabel get even stronger.

Anonymous said...

i'm so happy ya'll are home and well~ this machine sounds great, i can't believe they came up with a conclusion that quickly! that is awesome~ i will continue to pray for you and sweet Annabel. miss you guys and i hope to see you both soon~
~LaLa (Lauren)