ooohh Serena Bean...

Hi all. I am going to get to the whole private thing, but I'm waiting until the weekend when I have more time.
As for the past 2 days...they haven't been too fun.
Serena's bronchoscopy did not go as I'd hoped.
We got there at 6 am and she had been NPO since 10pm the previous night. There were 2 emergencies so she didn't get in and put under until 9:30. She dealt with it well, I just felt bad that she was probably hungry.
I waited the first hour and was surprised when no one called the room to tell me to go see her in post-op. I waited another hour figuring I shouldn't be too pesky. I then realized I didn't care if I was pesky, it had been 2 hours and I wanted to know if she was okay. Come to find out post-op had called up to pediatrics, but the secretary didn't bother to call my room to tell me she was done. I didn't find this out until I got downstairs. But before I could even do that, I walked all the way down to the elevators only to find one was stuck and not working which caused the other elevators not to open. So I walked back and they told me to go back again and someone from security would manually bring the elevator up to get me. ugh.
I get downstairs and a nurse is holding my sleeping baby. That should have been me for the past 40 minutes! I was livid. So when I get there they tell me she will be going straight to the PICU at Mass General and stay the night?!?
What happened? Apparently she had an "episode" during the bronch while intubated. It was described as an asthma attack or bronchospasm. They had to give her magnesium and a breathing treatment while intubated. The attending residents who came to check on her later in the night said "You really gave us a scare down there Serena. You know it's bad when the pulmonologist is grabbing through his bag of tricks looking for things we've never even thought of..." That was hard to hear. Anyway, they had thought she needed the PICU, but when I was there she was nice and pink, alseep, and was satting decent at 4 liters of O2 via blowby. When the team came over to see her, they were surprised at how good she looked...all pink and satting well, and listened to her and she wasn't wheezing. They said in the surgery she was so tight and clamped down...like a true asthma attack. So they allowed us to stay overnight in the step down unit at MEEI, and we did not have to go to the PICU.
The findings of the bronch were that she has severe tracheomalacia and severe right bronchiomalacia. The ENT said her narrowing was better, and not concerning. There is basically no treatment for her tracheomalacia and bronchiomalacia expect time and growth. They did not mention the need for a trach but where very concerned she has asthma, although it is not diagnosed in children as young as her. She obviously has reactive airway disease and this is why when she gets an upper respiratory infection she has such difficulty with wheezing and keeping her saturations up.
The good news she is not normally a wheezy kid. She doesn't have difficulty unless she is sick. Even at baseline however, she still needs a very small amount of O2 while asleep because she does drop her sats into the 80s even when not sick without O2 while asleep. One Dr. at MEEI thought she might be silently refluxing. I think it is due more to her floppy airway, but we will start her on Prevacid and go back in 2 weeks to get the results from the pH probe. EJ will be seen at this time as well to start him on Prevacid since he clearly refluxes.
So we spent the night and she did ok, but was affected by the anesthesia and had one sleeping episode where her sats would not come up. At 3/4 of a liter and 2 liters, her sats were exactly the same. The nurse didn't know what to do (why did we have to spend the night?) so she asked me to wake her up. Her sats were better, and she slept through the night on 1.5 liters and did well.
They scoped her today while awake to look at her vocal cord, and there does appear to be some movement, whereas back when we first saw the ENT last year there was no movement. He said we will do another barrium swallow, check to see if she is still aspirating, and if need be he would talk about the possibility of doing something. If not, he doesn't treat paralyzed vocal cords until the child is older.
After this, we were able to come home, and her O2 needs are back down. She is on 1/2 liter now while asleep, which is good considering everything she's been through in the past 48 hours.
The ENT recommended doing a sleep study, but after I spoke to our pulmonologist we both came to the same conclusion. There is obstruction (probably from the complex airway issues) and she needs a small amount of O2 while asleep. When she's sick that need goes up, so there is nothing we can really gain from a sleep study.
I am praying that with time her floppy airway will improve and she will not develop severe asthma. This is a hope, but probably not going to be our reality. Unfortunately, I think that she will have breathing issues that will be significant and I've prepared myself for many winter months of isolation. Thankfully no one around us smokes, and there are not pets at our home or our parent's homes. We will try and reduce the triggers, and hopefully never have to experience the scary episode she had in surgery yesterday.
Thankfully my baby girl is doing fine now. She is sleeping peacefully and was very playful and happy to see her brother earlier.

In very exciting Edwin news, he is drastically improving gross motor wise. He is getting on his hands and knees more and more, keeping his hands open while belly crawling, and really showed off for PT today. He is even beginning to pull to stand! I put him in his crib last week to make a phone call and when I walked in to check on him he was standing up in his crib! Now mind you it was on the infant level since my guy is not even correctly crawling, I thought pulling to stand was a long way off. Of course I freaked when I saw him standing there because technically if he wasn't holding on so tight he could have fallen forward out of it! Needless to say it is now down a level, and he is still working on the pulling to stand in the crib, and today pulled up on his little Sesame Street play toy that have been in many of our pictures. He doesn't do it completely typical since he gets to up on his knees, reaches up with his hand, pulls his other hand up, and then with his upper body strength pulls his bottom half up. He doesn't do one leg at a time like most children, but he'll get to it. He is so proud of himself when he does it, and although he is wobbily on his feet and needs to get more abdominal strength, he is really doing wonderfully.
I almost caught it on video but the Dr called and I missed it. I'll get that on camera soon. I am very pleased with how far he's come, and although there is still more work to be done, I am a lot more calm about his development. I feel like everyone's efforts are paying off and he is really thriving in this area.
Serena is really getting to be a smarty pants. She is working on stacking very small blocks, is waving "bye bye", and is mimicking play. She is curious, bold, and even a little bratty sometimes. :) She is really a handful, and for that I am so grateful!

So now that I gave an update I need to sleep. That bed/chair I had to sleep on last night was painful and I can't wait to have a good nights rest in my own house with my two Edwins and my Serena.
I'll be sending out the email invites soon!