Trach Eve

Wednesday night we were told to come in Thursday and have ENT paged. We needed to sign consent for Natalie's tracheostomy and bronchoscopy (sending a camera down to check out her vocal cords and airway). Monday was not a rumor-it was fact.

She is white sheeted for tomorrow. That means she does not have a scheduled time for surgery but will be fit in when they have time. The risk is if there are many emergency cases she can get bumped to a later date. The resident we spoke with said that the surgeon is a big shot, wants Natalie trached ASAP and her tends to get what he wants. I think I will love him.

The resident was very patient and went through every aspect of the surgery and recovery. I have a feeling he works with a lot of apprehensive parents-we may be the most excited people to have their baby trached he's met.

So! Her pre-op blood work is complete, we got through a fever scare on Saturday and things are moving forward. Her neighbor was moved tonight so that Natalie will have one on one nursing during her post-op time. At midnight she will be NPO (nothing by mouth, or in her case ND tube), at 6AM all her meds go to IV and then we wait for the OR to call. I am bringing my laptop to the hospital so we can update people and of course show off her tape free face as quickly as possible. Sigh...since getting a surgical date I can hardly think about her coming back from the OR. Seeing her face after a 5 month wait, just the thought makes me cry.

Backing up to the rest of last week, the nitric when to 1ppm Thursday and she tolerated it beautifully. Saturday morning I came in and they had not rounded yet. When I returned that afternoon with Natalie's Aunt Megan it took me a few minutes to realize the tanks were gone. No more nitric oxide for Ms. Natalie!!!! It was turned off at 1PM, from 2-4PM she was up in her O's but came down on her own. Since then she has been a little higher than normal but not enough to be alarming. I am mostly trying to not think about it and wait to see what happens.



Thursday when I saw the neonatologist he mentioned that he had seen Dr. Lee (GI surgeon) that morning and he wanted to schedule Natalie for 1-2 weeks after her trach. This was news to me. I asked if he knew what surgery he was planning and Dr. D said "Oh! He wants to do the G-tube and fundoplication, we've known that for days. I thought I told you!" Even bigger news to me. I am trying to make peace with the decision. The fundoplication is a much more invasive surgery and has more consequences than just a G-tube. At the same time, it may very well save her by greatly reducing the risk of aspiration. They say it is our best option, so we are going ahead. We meet with Dr. Lee this week to go over the surgery and ask our questions. Well, first I have to research fundoplication a little more so I know what questions to ask. Dr. Lee only operates on Wednesdays so the GI surgery will be next week or the week after, assuming nothing comes up in the meantime.

The other news is that Natalie was finally examined by opthalmology. The poor child. They dilated her pupils and used some sort of forceps to hold her lids open. When I saw her afterward she looked like she was afraid to fall asleep in case they came after her again. She kept looking around the room suspiciously.

So far we know there are problems, but we don't know to what extent they are affecting her vision or what the treatment options are. She has esotropia, meaning her eyes turn inward, and nystagmus, meaning her eyes are shifting back and forth. The good news is that she can track light (but they have to cover one eye at a time) and her optic nerves look healthy. We are now waiting for pediatric opthalmology to examine her and talk with us. The neonatologist gave us his impression but also said he is not that familiar with either of her issues. Now we wait and again try to contain our worries the best we can.

Mostly right now we are anxious for surgery to get here and for Natters to finally be comfortable. She is doing her best to hurry things along. Thursday her nurse (T) was charting just outside her door when Natalie's alarms went off. T went in, saw that Natalie had spit up and it had loosened her tape. Natalie seized the opportunity and was pulling on it with all her might. T grabbed the tube to hold it in place, but she was several feet away from the emergency button and she had closed the door behind her. Poor woman had to hold the tube in just the right position and scream until someone heard.

Then today I was holding Natalie and she was having the hardest time settling in because the ET tube was gagging her. She finally fell asleep and put her hand over her face as if exasperated. The nurse and I said "Oh, how cute!" Then as quick as a flash she had that hand on her tube and was pulling. Sneak attack! The nurses have to retape her about 3 times a day now to prevent extubation and she has a serious mummy face going on. Can't wait to see what she looks like under all that!


Annie is turning 3 soon. Our life is too unpredictable for her usual birthday party so we are celebrating with loved ones as we see them. This weekend was the first of her birthday celebrations. She had a wonderful time, as did we. Thank you to our Kash family for giving her such happy memories!

A spontaneous cupcake picnic