What a crazy month it has been! We went into the hospital for what we thought would be a simple g-tube and nissan operation on June 16th. Little did we know...
Cooper headed into surgery around 11:00, several hours later we were told they couldn't find a vein and would be putting a central line in. Another several hours later, when we thought the surgery would be finished we were told that they FINALLY got the line in. He has some slightly enlarged organs that made the operation a little more complicated but the surgery was termed a success and we headed up to the PCCU at Spectrum Health.
All seemed to be going well until the next day. Cooper was having difficulty breathing. After a day spent with various breathing treatments and medications his body was not able to get rid of the Co2 gases. Darrel was at the hospital and they told him to stick around in case they needed to do an emergency tracheostomy. Needless to say we were pretty scared, how did a simple operation lead to this? Around midnight they decided to put him back on a ventilator. He was sedated and on the ventilator for 4 days. He just looked awful, but he was such a little fighter. After they took him off the vent he did great!
Several days later he had a Larynoscopy w/ dilation. The findings were his airway was damaged from the reflux and it was extremely swollen with scarring. This combined with the breathing tube used during surgery made his airway swell up and close off. The day following the larynoscopy he started having breathing problems again, it took about 4 days for him to recover.
He has been having feeding issues since the surgery and only tolerates less than half the amount he was fed before. He is on a continuous feeding pump at night and gets 4 feedings during the day. The daytime feedings are uncomfortable for him and he cries after being fed. His stomach will slowly stretch out to tolerate more food comfortably.
18 days later we were able to welcome Cooper back home. We were so happy to have our family back together and get some sense of normalcy back, So often when Cooper was in the hospital even though Leila knew he wasn't home, she would still come downstairs in the morning, go to his bassinet and ask, "where's Coop?" We all just wanted him home.
After this experience I feel like I have so much to learn. I was so naive to think this would go so smoothly. We are just newbies in this whole medical journey. It's one step forward two steps back, expect the unexpected and a number of other cliches. One thing I knew but was driven home during this visit is, appreciate what you have it might be gone in literally a breath. Keep your eye on what is really important.
Since this visit Cooper has had another Larynoscopy w/ dilation and removal of tissue growth. He was in the hospital overnight and home the next day, breathing great. He will have another at the end of August.
He had an MRI on his brain during the stay and his tumor has shown some changes. Cooper will have another MRI in Sept. The neurologist is thinking he will either biopsy the tumor or drain the cyst (tumor). So we are gearing up for the fall.
He missed his visit with Dr. Capone and we have rescheduled for the beginning of August.
Did I say it has been a crazy month? :) Thanks for everyones meals, support and prayers. We are so lucky to have all of you on this journey with us. We truly believe that while we were meant to have Cooper and God entrusted him to us, that you were meant to be part of the ride. God not only has a plan for us but a plan for you.
God Bless
Kalani
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