Our homecoming following Laurens 2nd surgery was actually quite smooth. We took our time checking out and even spent an extra night at the Ronald MacDonald House with her just to make sure. Lauren was comfortable, consolable, tolerating feeds and meds just fine, and smiling a LOT. She only cried once on the ride home. Day one at home was good, but still a little overwhelming. Our new medication schedule required us to give meds every 2-4 hours around the clock, and keeping up with filling her feed bag for continuous feeds around the clock, plus me trying to pump is a huge challenge. Needless to say, neither of us got much sleep. One thing that Lauren came home with was a little bit of raspy breathing and what seemed like congestion. We were told this was common after intubation, and especially because Lauren had a little swelling during the last surgery. When the congestion got bad, we would attempt to use a bulb syringe, with no luck. Our friend Joanna brought over a different kind of suction device, but we also had no luck with that. There were a few times that Lauren would appear to stop breathing or hold her breath and then gasp for air as if to catch up. By Tuesday afternoon Lauren seemed to be working a little too hard to breathe, so we took her to the pediatrician. From there, we were sent to the Pediatric ER in Columbus, because what we thought was congestion was actually airway swelling. Our Pediatrician made the necessary calls to arrange transport while we took Lauren to the ER to get and IV, a little oxygen support and a steroid to help encourage her airway to stay open. Upon arriving at the CHOA emergency room, Lauren received more steroids and an epinephrine breathing treatment, both of which she seemed to respond to well. She was then transferred to the Cardiac step-down unit for monitoring while they tried to figure out the cause of the increased swelling and difficulty breathing. The rest of the night into Wednesday was pretty rough. Lauren was hungry, stressed and in a lot of pain from her reflux. She went from being able to sleep for 20 minutes at a time, and declining to having screaming fits every 5 minutes. We couldnt get her heart rate down below 180 for hours and her breathing was getting difficult again. Dr. Sacks came to assess the situation and determined that Lauren was looking pretty sick and it was time to head to the CICU for stabilization. The following 24 hours consisted of xrays, lots of bloodwork, more steroids, sedation meds, and meds that would help her heart function without having to work so hard. The ENT team came and did a scope of her throat. They found a LOT of imflammation that was clearly due to reflux, which is extremely frustrating and heartbreaking considering she just recently had surgery to fix this issue. The surgeon felt she was a good candidate for a newer, less invasive procedure that he has had good success with in the past, but it unfortunately did nothing for Lauren. Another thing that the ENT team discovered was that she has laryngomalacia, which has contributed to her reflux and her difficulty breathing. In most babies, this is something that gets better with time and they can essentially grow out of it. Lauren, being heterotaxy and a heart baby, is one of those rare cases where intervention is necessary. Go to chop.edu/service/airway-disorders/conditions-we-treat/laryngomalacia.html to learn more about this. With all of these findings, the ENT team, GI team and Cardiac team came to consensus that in order for Lauren to be able to eat, grow, and maintain a quality of life that promotes good overall development, she would need to have surgery again. Being a shunt-dependent baby, this decision was not made lightly, so we realize that we are in a position of choosing the lesser of the two evils. It is scary, but necessary. Her surgery will take place under strict cardiac anesthesia protocols. General surgery will first do a fundoplication (the more invasive procedure that they wanted to do before, but had done the other one instead), she will get a G-tube (through which she will recieve food and medications until she can have more extensive heart repair surgery, and then the ENT team will do some work on the tissue above her vocal cords to help open up her airway a little more. In the meantime, she is resting in the CICU. She has recieved a blood transfusion because there were so many labs taken between both ERs and upon arrival here that her counts were low. Theu have also been constantly adjusting her meds to keep her lung pressures, body profusion, lactates and hydration balanced. It is a very intricate dance of intervention that I am far from fully understanding, but what is most important is that they are keeping her comfortable. Surgery was originally planned for Friday, but they were not able to coordinate all of the necessary team members, so we are now waiting until Monday. The good part about waiting is that she can now receive TPN, which is a form of IV nutrition consisting of fats, protiens, carbs and other nutrients that she would normally get through eating. This will help her to gain strength and get more rest before her surgery. This is a very stressful time for us right now, but we have many, many doctors and nurses working very hard in Laurens best interest. Please pray for our Little Ranger, that she will remain strong through surgery and recovery, and that everything will go as smoothly as possible.
Posted on: Fri, 26 Sep 2014 21:56:04 +0000
Trending Topics
Recently Viewed Topics
© 2015