Extra Info and Tomorrow

There were a few things I forgot to mention with the information overload of Wednesday.

First, Dr. Cotton wants to be more aggressive in figuring out Evie’s ears. The constant drainage is just unacceptable to him and we’re hoping we’ll find a solution. We had always been told it was just a CHARGE issue and that someday, hopefully, she would grow out of it. We’re really excited that maybe there are some other directions to try since it is either uncomfortable or downright painful for Evie all.the.time.  They cleaned out her ears and put in her 4th set of ear tubes and now we’re on antibiotic/steroid ear drops plus an oral antibiotic.  He’s going to take another look tomorrow in the OR and see if there is any progress.

I also forgot to mention some scarring that was discovered below her trach site. We’re not sure if this scarring is just something that happened awhile ago or if it’s something that’s still happening.  The scarring indicates that the tip of the trach has been rubbing against the inside of her trachea and irritating it. They will look again today to see if there is any change. If it is still a problem, we’ll need to go to a custom trach to get a better length. She’s still too tiny for the pediatric size (she’s in the neonatal length still) and it would likely hit right at the point where the trachea splits in two to go down into the lungs, so we’ll have to figure out a custom length. I’d really prefer that not be necessary as it increases the costs of her trach and makes it harder to get them. We already struggle with her trachs being constantly backordered which gives me a nice panic every.single.month that we won’t have enough.  And the few extra trachs I’ve hoarded away will become useless. So basically, if you could pray this is just an old problem so we can stay with her current trach size, that would be great. 🙂

I don’t think I said that Evie’s esophagus looked fine, either.  I was pretty scared that we would find her esophagus inflamed and scarred up from refluxing/vomiting so much, but the GI thought it looked fine. Very good news.  He’s waiting for the results from some biopsies he took, but he may just take her off reflux meds since it appears her vomiting issues are just related to the size of her stomach rather than reflux. We’ll just have to wait and see and probably have a little trial and error in approaching the problem.

So tomorrow is Evie’s surgery to repair her choanal atresia again. It does look like her nose is blocked by just tissue and that the bone itself has not grown back. Evie had 4mm of bone blocking both sides of her nose originally which is pretty severe (Evie doesn’t like to do things halfway in airway issues, I guess).  I had said that they were going to remove part of her septum that divides the nostrils. I asked around on the different Facebook groups I’m a part of it and it sounds like most people saw a huge success once part of that bone was removed.  That is incredibly encouraging.  Even though Evie’s body does love to grow scar tissue, she does seem to eventually accept whatever we’re doing and stop the growth.  We had horrible issues with her trach and gtube sites at the beginning, but after awhile they both calmed down and we had no problems again until just recently (she’s had some issues with her gtube site again, but it’s nowhere near as bad as it was at the beginning).

I don’t really know how tomorrow will go. She’s going to be hurting from the surgery and we’ll have to be doing flushes and drops in her nose which will not be pleasant for anyone.  I’m going to be having flashbacks to her NICU days. Ugh.  As hard as it was to hand over my 12 day old baby to a surgical team, it is WAY harder now that Evie is almost two.  She’s aware. She remembers. Once she was fully awake this past Wednesday and realized where she was and that she was hurting, she went into a full panic, clinging onto me for dear life. It was heartbreaking.  Tomorrow, we won’t be able to just quickly dress her and get out of recovery so she can calm down.  I’m not even sure I’ll be able to hold her at first.  I’m concerned about how much drainage there will be from her nose. Since her stomach is so small, whenever she has drainage, she can’t handle much food at all.  She’ll probably lose a significant amount of weight over the next few days.

Please just pray that it goes better than what we’re expecting.  Sometimes I wonder if we’ve become pessimists over the last two years, but I think we’re just extremely realistic when it comes to Evie. We’re hopeful and we know that she continues to surprise and amaze us, but we also know that she doesn’t just surprise us in good ways.  She’s a unique and complicated little girl, that’s for sure.

A few quick stories of Evie’s awesomeness:  before surgery/scopes on Wednesday Evie was playing on the iPad.  We gave her the stylus (pen) and let her play on a drawing app. Ty showed her ONE TIME how to drag up from the bottom to bring up the color selection and then drag down to put it away again. She’s drawing away and then drags up, picks a new color, drags down, and goes back to drawing! Ty and I just looked at each other, stunned!

Then yesterday, we were just hanging out at the hotel and every time I would pick up the iPad, she would crawl over and sign “share”! hahahaha.  She’s just amazing.

Thank you again for all the prayers and encouragement. It’s wonderful to have such support!


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