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Friday, June 12, 2009

The Apnea Study

The 'books' will tell you that for the trisomy 18 babies that make it to birth, 90-95% of them will die before they are 1 year old. The primary causes of death are usually quoted as major heart defects or central apnea. Central apnea is where the brain is not telling the body to breath or the heart to beat while a person is asleep. Many of the doctors think Rebekah's issue is probably central apnea and there will not be an easy solution. We are hoping for a different story. This is what happened the day of and following the sleep study until we had an apnea diagnosis of central versus obstructive apnea.

5/22/09 – DAY 32 and Day 3 in the Hospital

5/22 4:12 pm - PTL! Today has been a great day! The current intervention continues to be extremely successful - we've gone from >300 'incidents' (with at least 10 full blown blue spells) in a 24 hour period to only 6-7 incidents with only 1 short blue spell. What a break! She had her first bottle after 36 hours of not eating and for the first time did not desat during the feeding. The challenge will be duplicating the current process at home since she is using a machine that isn't used in homecare (hi flow nasal canula) and her size is making cpap at home something that might not be doable. We have the sleep study tonight and more studies next Tue. We will be here into Wed unless they think up more studies.

Pretty in pink!

How do I eat with all this stuff on my head?

All ready for the sleep study.

5/23/09 – DAY 33 and Day 4 in the Hospital

5/23 9:40 am - I backed into the pizza delivery guy the other day who decided to street park behind our driveway just as I was backing out of it. Then I dropped my cell phone in the bathtub while giving the boys a bath. ~:-/ But at least I am getting some sleep finally!

5/23 9:50 pm - Update by Michael: We're ending another pretty good day. Our only "real" incident occurred during an experiment with a set up that would be easier to take home, so we're back to the 5 liter flow which seems to still be working well. I realized tonight (with Mark and Amy) that being here alone with Rebekah has helped Susan and me to focus on what she is doing. That focused attention has allowed us to see her obstruction patterns. The challenge is resolving the obstruction issue in a way we can take home. Tonight I am praying for the answer to that question.

The morning after the sleep study, we had to clean all the goop out of her hair. I think it actually took several days and baths to to get it all out!

Rebekah had to get a new IV line today.

My brother and sister-in-law stayed the weekend and brought their dog (and kids). Josiah loves the dog and apparantly the dog crate. He put himself in the crate and shut the door, then acted like a dog.

5/24/09 – DAY 34 and Day 5 in the Hospital

5/24 10:56 am - Update by Michael: Rebekah is eating exceptionally well today (60 cc's from a bottle twice) and she just weighed in at 5lbs 2 oz (3oz more than two days ago). She is back on a positive growth curve. PTL! She had some incidents last night, but they may have been caused by the nasal cannula falling out of her nose. Since it was retaped, we haven't had any problems. Susan and I will be switching places later today. In case your wondering, Rebekah was actually 5lbs. 4 oz., but we took off 2 oz. to account for what she just ate. For me to have the same percent increase in weight as 3 oz to her, I would have to put on 7 lbs.

5/24 7:20 pm - It's amazing what a few night of decent sleep can do for one's spirits! Well that and knowing that I have hundreds of prayer warriors out there and that I am a blessed child of God. :-) Ephesians 3:16 I pray that from his glorious, unlimited resources he will give you mighty inner strength through his Holy Spirit. Rebekah continues her great behavior and progress. We MAY be looking at a trach for a solution, but that answer will come after her Tue & Wed tests and meetings with the doctors. I'm just so happy that her problems are mostly physiological and a solution is in the near future!

Holding my baby girl...

Josiah helping out with the trash back at home. Gotta teach 'em early!

5/25/09 – DAY 35 and Day 6 in the Hospital
5/25 3:40pm - Dr. Gault (the sleep doctor) came in today just to see Rebekah! There are about 900 pages of a report to be reviewed but his preliminary report is... obstructive apnea! (not central which would be her brain function). I know we have to wait for the 'official' report, but this is AWESOME news! So another test will be added to the list and we will probably be here the whole week. But PTL for good news! Rebekah also had problems with desating this morning (her oxygen levels dropping), but it turns out that her nose was full of boogers. Once again - obstructive! Nose was cleaned out way back with a little tube thing and the humidity turned up on her high flow air. So far, no more episodes. And she is still eating great - about 2 ounces per feeding. WTG Rebekah!

Looking pretty for today's visitors!

Aunt Amy and Uncle Mark in the hospital room with Josiah.

Elijah, Isaiah, Josiah and cousin Nick.

Jeremiah and cousin Ben playing on my laptop in the hospital room. Thank goodness for wi-fi!
5/26/09 – DAY 36 and Day 7 in the Hospital

5/26 5:37 pm - The official word is definitely obstructive apnea! In fact, the doctor is pulling Rebekah off her caffeine. The most important test comes Thu - a bronchoscopy where a little camera will be inserted up her nose and down her wind pipe to below her vocal cords. We are so appreciative of all the support we've been receiving. We do still need a little more childcare help this week. Oh, and the doctor said that it is a significant finding that she does NOT have central apnea since she is a trisomy 18 child. Hip Hip Hooray! Your prayers are working and God is good!
Rebekah also had a swallow study today which showed some anomalies. In the swallow study, they mix barium in the formula, sit her up in a special chair, then take an x-ray movie of her swallowing. It's really quite fascinating! Anyway, her bottom jaw is small and her tongue too large for it. Her palate (roof of her mouth) is a little short, so when she swallows, she actually sometimes pushes the food up her nasal passage! This will probably mean she will be prone to sinus infections. She also swallows in a way that each swallow dips down to the vocal folds in the trachea, but doesn't necessarily penetrate it. But that means that she has a higher probability of aspirating and probably micro-aspirates. (Good thing she doesn't know this, because she's been doing a great job eating!) We were able to play around with some different nipples and find one that works best for making her swallows more 'normal'.

Sound asleep after the swallow test and a bath. Doesn't she look like a little rocker girl?

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