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Saturday, June 13, 2009

Bronchoscopy & Results

5/27 - DAY 37 and Day 8 in the Hospital

5/27 2:18 pm - Great, great day today. Rebekah has gone over 24 hours without a major incident! Woo hoo! I'll be at the hospital through the night and tomorrow. I'm bored if anyone wants to stop by. PICU room 5617.

5/27 11:18 pm - This is the first day in over 5 weeks that I have allowed myself the luxury of not staring at an apnea or sat (oxygen) monitor every waking minute of the day. In fact, except for feedings, I have only occassionally glanced at the monitor. Never take for granted your healthy 'normal' children. Thank God for every 'normal' behavior you are blessed with, cherish even crying, temper tantrums, and over zealous speech.

Beautiful little Rebekah

5/28 - DAY 38 and Day 9 in the Hospital

5/28 2:30 pm PTL - we got the results from the bronchoscopy and it is ALL upper 'floppy' airway issues. Everything below the vocal cords looked well formed and very clear - this is great because it means that she does not appear to be aspirating when she eats and it makes a trach an option for her (which is probably what we will end up doing). They are sure that a trach will solve her apnea issues, but they are not sure how it will affect feeding. She does have some anatomical variations that complicate the feedings/breathing too. Please pray for wisdom on what we need to do and that God will continue to bless Rebekah and, if we go the trach route, keep everything else working like it already is. The trach is what they would recommend for 'normal’ children with the same floppy airway issues. It can be reversed as she gets bigger if she grows out of the problem. Although it has complications associated with it, it is a much better long term solution then a constant high pressure airflow that could cause future lung problems. The only down side is that we probably won't be able to get it scheduled before Tue and the recovery time is at least a week. :-( Guess its more hospital food...

5/28 11 pm - Stay here long enough in the hospital and you get to ‘move on up.’ There are two coveted rooms on the PICU floor – corner suites, if you will. One resident just moved out, so we are moving on up! We are now in the PICU room 5616. We have an extra chair, a more comfy bed, and a toilet that cannot be seen from the door. Our last room was square with one whole glass wall facing the PICU hallway and desk. It was exactly like being in a fishbowl! We are still close to the nurse station and main desk, but have a much smaller viewing area into our room from the hallway. I am so happy to have a little more privacy!

Getting set up for the bronchoscopy. I had to step outside during the procedure, but curiosity got the better of me and I went back in to watch it on the screen. It was quite interesting (but heart breaking to hear Rebekah screaming her head off). As the scope penetrates the vocal folds, you no longer hear the crying, just the rush of "mad" air coming out.

For the medically geeky, here is a copy of the bronchoscopy video.

5/29 - DAY 39 and Day 10 in the Hospital

Can you believe it, I actually did not report an update this day! Or take a picture. I have NO idea what I was doing this day.

5/30 - DAY 40 and Day 11 in the Hospital

5/30 4 pm – Looks like we are on the Monday 'wait list' for the tracheostomy. We'll find out sometime Monday morning what time it will occur. We will be in the hospital probably 2 more weeks after the surgery (barring complications) because it needs time to heal, we need to reestablish her swallowing with the trach, and we need to learn how to care for it. Please be in prayer that this will not mess up her eating and that there will be no further complications and this will resolve all of the apnea issues. If all goes well, this will give us mobility again and help us to be a family once again doing things together and taking her places with us. The high flow air scenario just wasn't going to work long term or be portable for us. Our greatest risk right now is that the trach will increase her probability of aspirating and result in having to tube feed her. We are praying that God will allow her to continue eating by mouth, which she is so awesomely doing right now! Since we’ve been in the hospital, her average feeding has increased from 1.5 ounces to over 2 ounces per feed, and we’ve even had some 3 ounce feedings!

The conclusion from Rebekah’s sleep study is that she is experiencing all obstructive apnea. The doctor’s recommendation was to stop her caffeine as we move forward. However, it is not with 100% accuracy that we can say she does not have any central apnea. It could be that the obstructive apnea is so bad that it is masking central apnea, or that her caffeine actually is taking care of the central apnea. But while we are in the hospital, we are experimenting to see if she can come off of it. Rebekah has been off her caffeine for several days now. She has been having a few oxygen desaturation issues with bradycardia (low heart rate) yesterday and today, but it is hard to tell if that is a factor because of the caffeine working its way out of her system or that the high flow nasal cannula just isn’t 100% effective (which we already know) or some other unknown factor. I’m somewhat on pins and needles today just wondering what will happen as it completely works its way out of her system. But this is something we can easily start her back up on if we need to.

Rebekah is thought to have laryngotracheomalacia (floppy airways) but a second opinion said that her throat looked pretty good but was collapsing because of a blockage further up that was causing extreme negative pressure on her airway - most likely that blockage is her tongue. She has micrognathia (very small lower jaw) but a normal tongue, so the tongue falls back and blocks her airway. If she were older, there are a few different surgeries we could consider that would resolve the problem. However, for various reasons, they are not an option for a 1 month old. So this other doctor is also making a recommendation for a trach. On the positive side, this is a good sign that we could have the trach removed in the future and, if she grows normally (which is not expected in a t-18 child), she might even outgrow the source of the problem and not need any further surgery except to close up the trach hole.

During her swallow study, it was shown that because of Rebekah’s small lower jaw, large tongue, and some other minor anomalies, she has a higher risk factor for aspirating when she eats. When she swallows, what she swallows actually penetrates the vocal folds (this is not normal), but does not actually go down her trachea. We know from chest x-rays, the bronchoscopy, and the swallow study that she definitely is not aspirating when eating (but remains at risk). However, with the tracheostomy, the pressure in her trachea is going to be different and we may or may not create a problem with her current swallow pattern. After she recovers, we will need to do an additional swallow study and see what happens. We are praying that her body will correctly compensate and this will not be a risk. We are so in awe of what God has done so far for Rebekah – compared to what I read about t-18 children, it is amazing that she is feeding so well by mouth, and eating enough to not just maintain but grow at a healthy rate. It would be somewhat devastating to go from being able to completely feed her by mouth to getting a g-tube (a feeding tube surgically placed directly into the stomach) to feed her. But this is a risk worth taking when we consider current quality of life for her and for our family.

Out of all of the things that should be wrong with Rebekah, to have a trach possibly be the only thing she really needs right now is, well, a miracle! Time will only tell, but if the trach does not cause a feeding issue and completely solves the apnea issue, this will hopefully buy us much precious quality time with our sweet daughter that would not be otherwise possible. We are so looking forward to being together again as a family – and actually being able to take Rebekah places with us! We have been praying that this summer can be a summer in which we create some beautiful family moments.

Everyone making themselves at home in the PICU.

Mommy feeding Rebekah dinner.

Life must go on outside of the hospital! Michael took Elijah and his brothers to his cubscout graduation picnic. He was a 'Wolf' (2nd grade) and is now a 'Bear' (3rd grade).

Michael with Josiah and Isaiah at the picnic. (Susan was stuck in the hospital.)

5/31 - DAY 41 and Day 12 in the Hospital
Also a day I didn't report anything on facebook! The boys came to visit again and took turns holding Rebekah.
"Ewwww, Rebekah's diaper stinks!" (A friend noted that Rebekah looks like she is actually laughing at Isaiah.)

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