I pray… I pray that the tracheostomy tube will be out, and Vince can breathe through his nose and mouth. I pray that he’ll be able to sit on his own. I pray… 
I pray that he learns to speak. I pray that he is able to stand and learn to walk. I pray that he is able to eat alone. I pray… I pray that we will be able to buy him a wheelchair with which he’ll be able to get around, and not just in the house. I pray that there may be a community in September that will accept him and he can learn from them. I pray… I pray that my legs, my arms, my lower back may not hurt, so I can lift him. I pray that at night I am able to hear his whiffle when I need to get up to turn him or suction secretion. I pray that we have a safe journey when we get into the car and I don’t need to suction every minute while driving. I pray…
“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7
I have a university degree in economics, but now I just participated in a 5-year course in a subject called “This is how life works!”, both in theory and in practice. God was my teacher, and the qualification that is stated in the imaginary leather-bound diploma says: Prayer warrior.
I remember, we had been living in France for two years because of Vince’s treatment, when the following happened: it was a winter night, Vince and I were having dinner. I was giving him the food in a monotonous pace while he was watching his favorite story. We had a rhythm: one spoonful of food, one sip of water, one suctioning, one spoonful of food, one sip of water, one suctioning. Apart from the sounds of the story on TV I noticed a deep, rumbling sound coming from the trach. I started getting anxious; I knew this was going to be a bigger mucus plug which just started moving towards the tube of the trach. The rhythm was interrupted, because after a spoonful of food came several suctionings, then the sip of water, then several suctionings again. I started moving the suction catheter in every direction, so I could catch the edge of the mucus plug, and then I could pull it out in one piece. Then the sound became louder and deeper; the events started accelerating. Vince was gasping. There was no air going in or out. I still tried to suction, but to no avail. I grabbed him out of the high chair, laid him on the couch, and with shaking hands I took out the trach changing kit, while I was saying ’Our father who art in heaven’ out loud. I did not walk with God consciously at that time yet, but I knew that humanly I had no chance. I was alone in the apartment, and in the whole building there were only two other families, a French and an Italian one. Neither of them spoke English. By the time I would have called the physiotherapist or would have put Vince in the car to get to the hospital, it would have been late. I never ever had to change the trach at home before. I was never taught how to do it, because when it had to be changed due to hygienic reasons, we always went to the hospital, and the doctors did it.
I said a prayer out loud, my hands were shaking, Vince’s eyes were crying for help. I cut the band holding the trach, and I pulled it out. A whole lot of secretion came from the stoma. I suctioned it, so there would be room for the new tube to go in, and I inserted a sterile one. Vince’s look calmed down, he was signaling with his eyes: everything’s okay Mom! I fastened the trach with the band, but I could barely thread the cord through the whole, because I only registered then what had happened, and my hands were shaking like crazy. I gave thanks to God for His help, and I hugged Vince with tears in my eyes.
This happened three years ago. I don’t understand why I wasn’t looking for God’s company after that. I read a lot of books; I loved the new age stories dealing with the spiritual world, or teachers’ various summaries. I only picked up the Bible about a year ago, and this is when I started praying consciously, because God saved my little boy again in an emergency situation. This was when I arrived to my final year at the ‘Prayer Warrior University.’ Since then God has given a lot of certainties to us, and no day passes by without talking, Jesus and me. We do the trach changes together as well. It usually needs to be done on a weekly basis, but if Vince is sick, I do it even after two days, so the bacteria won’t grow. I pray every time before I take it out, I ask for His protection. I pray…
“Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.” James 5:13-16
Technical information: it was life that taught me how to change a trach. We have been to hospitals in Italy, France and Germany, and there when a child gets a tracheostomy tube after birth, the parents are only allowed to take him/her home, when they can safely change the trach on their own. If you have someone around you who has a trach, it could be useful for you to learn how to do it. I made a video, you can watch it here:
https://en.anyaujratoltve.hu/tracheostomy-tube-cleaning-and-replacement/
