Today, I woke up early to travel to New Orleans to see one of my kiddos for work. With Benjamin’s schedule, seeing the three kids I kept through Early Steps is not always easy, but I love working with them and their families, so I do my best. I was approaching Causeway exit (past the area where you are supposed to exit), and I received a frantic call from Mom stating that something was wrong with Benjamin and his vent. I calmly asked Mom to put Benjamin’s nurse on the phone and her only reply was, “Come home now!” I am not a very aggressive driver, but I managed to cross five lanes of traffic with less than 20 feet of forward progression. I turned on the flashers, and started waving my arms. In less than 20 minutes with 8:30 traffic, I made it home. Not fully knowing what to expect, I was relieved to drive up without an ambulance in my driveway. By the time I made it into Benjamin’s room, he looked fantastic, and was smiling. Mom and the nurse, on the other hand, were not.
Apparently, a routine suctioning must have moved a plug. The vent tried to push through the plug, but then stopped pumping air when the pressure reached a higher level. After multiple suction attempts and bagging that did not help his chest rise, his nurse told mom to grab the new trach to change it. While getting the trach, Benjamin started turning blue and became lethargic. Our nurse immediately started mouth to mouth with successful chest rise. This must have moved the plug further along to where Benjamin’s nurse was able to suction it out. With the help of a little oxygen, Benjamin was then able to recover.
As the day went on, Benjamin continued to look great. Later in the afternoon, one of his lungs sounded pretty junky, so we took him in just to be checked out and we left with a good report.
Tonight, Benjamin thought he might want to have a repeat performance. This time, after about fifteen minutes of suctioning and bagging, I was able to suction enough to clear his airways. His lips started to turn blue only for a second, and his sats never dropped too low. All the secretions were sitting right below the trach, so a trach change would not have been helpful. All I can guess is that since Benjamin is starting to swallow more and aspirate less, his secretions in his trach are thicker with less saliva. Positive thoughts!
I have thought a lot about today and what happened, how we handled it, what could we do better, and can I ever get more than five minutes away from Benjamin? It is weird how numb you can get to difficult situations. Don’t get me wrong, in situations like this, I feel sick, nervous, sad, mad, and the list goes on, but these feelings must be put aside to prepare yourself for the next “incident.” While most parents would be sitting in the ER after their child had a “blue episode,” I was on my way to the grocery store to plan for dinner. A friend of mine who also has a child with special needs, said she went home to take a shower after her child had a similar incident in the hospital. It is not that we love our children any less. On the contrary, we love them so much that we have to pull ourselves back together to be ready to handle the next hurdle. God made us all strong women (and men), who can have a moment for ourselves, but then we are able to move on.
On a great note, Benjamin did really well in therapy Monday. After weaning down on the creatine, Friday we completely stop giving it to Benjamin. Since then, it seems that he has started to move more. Since Benjamin’s diagnosis is pretty rare, most things we do for Benjamin are trial-and-error. We also stopped the levocarnatine to see if that is what is making Benjamin a little smelly. In PT Monday, Benjamin grasped a ring on his own and started to bring it up towards his mouth. whoohooo! He would use his little fingers to scrape the floor, trying to find the ring when he dropped it since he can’t move his head to find it. We have also been suspending his arm and leg in an arch made by his OT using ace bandages and PVC pipe to help remove some of the pull from gravity. In sidelying, Benjamin was able to bring his knee towards his chest bending his hip 90 degrees. He is able to play using both hands together, and he is able to activate more toys while the arm is suspended. Benjamin is looking like his old self again.
This afternoon, while waiting on Lennon, I heard a comment that I had heard a hundred times before, but this time it sounded completely different to me. A woman was insinuating to a man that he would prefer his pregnant wife.to have a boy instead of a girl. He stated “no, I just want a healthy baby.” This reminded me of a comment I read written by a mom of a kid with special needs. She stated that for her son, she wished he would have been healthy, but for her, she wouldn’t change a thing. She loved him just the way he was, and he made her who she was today. I completely understand. I feel blessed to have been given such an amazing child. I always wanted a boy, and I feel so lucky to have such an awesome “un-healthy” little boy. He has taught me so much, and has made me appreciate not only every minute I have with him, but also every minute I have with Lennon and Isla. Benjamin has opened my eyes to our world and my faith. For this, I owe him my life, not the wishes that he was someone else. Even after everything Benjamin has been through, he always ends with a smile. You just can’t say that for all children. 🙂
This sums up my day, puts things into perspective, and is a much more light hearted way to end the day…On my way to the grocery today, I stopped to get Benjamin’s nurse a small birthday present. The girl wrapping the gift asked if it was for Christmas. I told her no then mumbled to a friend, “Do you think they have ‘Thank you for saving my child’ paper.” I might need to invest in that. 🙂 Every time you are able to find some humor in a difficult situation, you win.