Brinley Noel: Progress and the Fallout

Today was a mixed bag. When I first arrived at the hospital I was told that Brin had some more significant desats last night. Great....the speech therapist walked in shortly after that, so I didn't get a chance to really think or process much. The therapist showed me some of the things she is working on with Brinley and was excited about the progress she was making. Long story short, during the session, Brinley swallowed (she doesn't do this much)- hooray! Then she crashed. Her oxygen saturation level was in the teens. We had to put her on 100% oxygen for a couple of minutes and she did bounce back. Speech, her nurse and I were all talking about the seemingly direct correlation between the swallow and desat. When the doctors came through during rounds we relayed what had happened. They decided to raise her rate from 12 to 20 in hopes that it would "catch" any future episodes sooner and therefore keep them from being so extreme. They also called ENT to see if they could come check out her mechanics (how she physically swallows) and see if that was indeed the problem. ENT was able to come in pretty quickly. He used a scope to look into her trachea and that looked excellent. Our nurse "M" and I relayed the morning's events to him and asked that he look higher up, so he put the scope down her nose and found a pool of saliva just sitting in the back of her mouth. Apparently she can hold about 10mls of fluid back there. The thought is that when she swallows one of these large amounts of fluid, she aspirates (it goes into her lungs) and then desats. It would be like taking a drink and having it go down the wrong tube. You and I just cough for a while, but she doesn't have that reflex yet, so it is hard to breath. If you recall during her swallow test it was determined that when she swallows fluids go out her nose and mouth as well as down her esophagus and trachea. So, at this point there is not much we can do beside proactively suction her mouth more frequently to avoid the saliva pooling and have oxygen nearby to help her recover quickly. Eventually they will do stages of oral surgery, but they want to give her some time to grow and see if any of these issues lessen or resolve on their own.

My sister in law asked me last night if we were nervous, or excited to bring Brinley home. I compared it to climbing a mountain. We are excited, but we need to do a lot of work and preparation, both physical and mental before we're there. We are at base camp 1. We go up, acclimate to the surroundings then head back for a while. Some day we will be stable at base camp 2 and try for 3 and some day we will get her home, have these reconstructive surgeries and prayerfully have a happy, healthy, "normal" little girl!

I have to say we are getting a little more tired. More easily irritated. The lack of sleep, sickness, crazy schedule and emotional roller coaster are catching up a bit. We still very much need your prayers for our whole family. Pray that Peter and I have time to connect, even a little bit, without pressure of having to get something done. We are SO very thankful for all of the support that we have received. Cleaning, lawn mowing, cooking, childcare, sewing, etc. It's just not over yet. We're in this thing for the long haul and are feeling a need for a little breath of air somehow.

Today our nurse "M" gave us the doll that she made for the big sisters. It is officially the "Brinley doll." The girls love it and so do we. Not many people get this spoiled by their nurses, let me tell you! Brin is so very loved and cared for by a lot of the staff and it gives Peter and I an extra measure of comfort to see. We are blessed. Without further ado here is our trached, mic-key buttoned baby doll (complete with an extra outfit, slippers, suction, kangaroo pouch, O2 sensor, blood pressure cuff, hospital band.....she's got the works, just like our Brinley!)