Today I was closer to calling 911 than I have been in awhile. I am still trying to calm myself down typing this. Because of Ty’s immature oral motor skills, he chokes and aspirates easily. Usually when he chokes, he is very good about coughing it up himself. However, I don’t like for other people to feed him because I know how high risk he is for choking and no one wants to have to intervene with that.
About two weeks ago I gave him a popcycle and he choked on the very first bite. It was a pretty bad incident and needed my intervention. (I had some kids over recently and they were eating popcycles on the back porch and I could swear that Ty choked then too on a red one…anyone remember that?)
Anyhow, I stupidly gave him another popcycle today. I guess I assumed that the other incident was random as with other foods. I walked out of the room. Mistake number two. I should know by now to NEVER leave the room when he is eating. Most 2 and a half year olds don’t need someone by their side with every snack but in Ty’s case…….sigh.
Anyhow, I heard him gasping and ran into the kitchen and instanstly started giving him the heimlech. Nothing happened. I continued this and could not get him to breathe. I couldn’t feel a thing in his throat. Jim had just left so I ran for the front door with Ty in my arms to see if Jim was still in the driveway. He wasn’t. Ty still wasn’t breathing and then all of a sudden he went limp. I didn’t know whether to scream outside or call 911 because I was afraid they wouldn’t get there in time – all the while still doing heimlech. I ran with him back to the kitchen and had him upside down beating the poor kids back when he finally took a breathe as I am trying to get to the phone. His right hand curled up into such a tight fist that I had to pry it open. (Another reason why I suspect possible CP – his hands tighten up during concentrated task or apparently stress). I don’t know how long he was without oxygen. It’s so hard to say in those situations. It felt VERY long but was probably around a minute, maybe a tad more. Long enough to begin loosing consciousness. Maybe he wasn’t choking the whole time because nothing ever did come up. Could he have gotten brain freeze and held his breath and wasn’t actually choking? I think he was choking because I heard gasping at first. Heck…I don’t know.
It took awhile for his color to return he was so white. I am still trembly from this. Sometimes I wonder if there is something wrong with Ty’s throat. I notice that he raises his eyebrows when he swallows and since he is so prone to choking/aspirating…is it possible that there is a structural type issue? It could be that he just has immature oral motor skills still but I was reading today about different forms of CP and came across some articles that indicated CP could be a root cause for this as well. It seems though that when cp is affecting the throat, the child has severe CP that is affecting all limbs. I actually do wonder if Ty has CP if it DOES affect all both hands and both feet just in a VERY mild fashion. If that is the case, the throat isn’t out of scope either. Hmmmmmm……
Here is one short paragraph I found interesting on this:
What causes nutritional problems in children with cerebral palsy?
Children with cerebral palsy often have the muscles of their mouth and throat affected by their condition. They may have difficulty speaking or forming words clearly, and/or they may have trouble chewing and swallowing food and liquids. This difficulty can lead to poor nutrition if they are unable to eat sufficient amounts of food to grow at a normal rate. It also may take such children much longer to eat a meal than it would a child without cerebral palsy, thus using up a lot of energy simply to eat. For this reason, many children with cerebral palsy are underweight because their caloric intake does not exceed the amount they are using up during their day’s activities. Spasticity can also result in the use of extra calories, thus making their caloric needs greater than average.
Another problem caused by the oral motor coordination difficulties is aspiration. This means the swallowing of food or liquid into the lungs rather than into the stomach. If this is happening, the child may be coughing and choking during meals, if they have a good gag reflex. However, many children with cerebral palsy lack a strong gag reflex, and therefore may be having silent aspiration; that is, the food is getting to their lungs without a strong gag response. Such a child may have recurrent pneumonia resulting in fever and respiratory difficulties or may be having recurrent episodes of wheezing which are diagnosed as asthma or bronchitis. The best way to evaluate this is a modified barium swallow, by which a speech therapist and a radiologist assess the child’s ability to swallow various kinds of foods and liquids. Barium is mixed into foods of different textures and liquids of different consistencies to see what the child can swallow safely. Following such an evaluation, recommendations may be made to alter the consistency of the food (such as to feed only pureed foods and not thin liquids) in order to prevent further aspiration. If the child is unable to take in enough calories to maintain a healthy weight, or if the child is aspirating everything he or she eats, there will likely be a recommendation for a gastrostomy tube, which is a tube that helps deliver food directly to the stomach, bypassing the mouth and throat.
Ty has had 2 modified barium swallows in the past and both showed him at very high risk for aspiration. So frustrating. I am probably rambling right now but it’s nerves. I needed someone to hold me up when I was done holding Ty. Papa and Sweetie volunteered to come over but I bravely said no:). This child is prematurely aging me.
Of course now, he is back to his happy lil self and wants me to put his Star Wars movie in. Tomorrow I can call on his EEG results. I doubt I will actually talk to the Dr. tomorrow but I am hoping. Miss Erika (his vision therapist) is here now so off I go.
2 responses to “One of those days…”
HUGE sigh… no wonder when I asked how you were you said, “Go read my post…” Oh Doni! Let’s just turn this into a thanksgiving moment – that’s the best way I know how to hug you from a distance.
Thank you Father that in EVERY moment Ty’s life was at risk, you were not sleeping, but you were awake and watching and moving and prompting us to even step in as your hands and feet. Thank you that his precious life is in your hands and that you have chosen to breathe life into him (over and over and over…)! Thank you for the gift of your grace in the bubbly package of Ty and his big brother Tanner. Thank you for keeping your hand on BOTH of them and choosing life. You’ve touched so many hearts with these gifts and we are so thankful.
Thankful that today you made a way for Doni to help Ty. Thank you for protecting him and keeping him safe.
Thank you Father – for so many things. Thank you.
Hi Doni: Wow never a dull moment at the Brinkman house. I am so sorry you have to go through so much. I am so happy Ty is okay. I just want to cry when I read your postings. God Bless you all, and hope he keeps Ty safe.