Hello to all! What a stormy night and morning we had here in Dallas. Hope all of you in this area made it through the storms okay. Clay finally had a bowel movement this morning, but he's still vomiting. We had asked about Miralax, but he cannot keep anything down so this was not given. Some have asked if it there could be damage to his vagus nerve and the attending doctor said that there is no damage to this nerve. As a matter of fact, there is (and was) NO internal damage caused from the fire. His potassium numbers were low, so they are giving this through his IV. They are also giving him Reglan and Amitriptyline.
A team from Children's Hospital will come get Clay at 9:15 in the morning. They are going to do a G.I. test. I will follow them over and will be able to be in the room with him. I changed Clay's trach tube ties today after his bath. With a doctor by my side, we take his trach tube out for a few minutes each day. He gets so anxious and stressed when he realizes that his trach tube is out. He cries and motions for us to put it back in and then vomits. We have done this for the past three days, so that I get used to changing it when we are at home. Also, the doctor wants to show Clay that he CAN breathe without it. He can breathe through his mouth and nose if he will stay calm. The attending doctor visited with me about this issue yesterday. Clay has become so accustomed to his trach tube (4 months) and he thinks that he cannot breathe without it. I have come to see and understand that his anxiety is not caused by having the trach tube in. He becomes anxious when his trach tube is taken out or when it is plugged with secretions.
Clay walked with his Physical therapist today and spent about 15 min. in the playroom. He had to have two feed tubes put in this afternoon. The nurse pushed the first one through his nostril and then had to pull it out after the x-ray revealed that it was curled in his stomach. A second one was then put in. Clay has gagged and vomited more frequently since. Also, he began to cough more secretions through his trach tube. He has not had many secretions, so we do not know why this has caused more. I feel for him and wish I could take it away.
We will see what the test shows in the morning. Thanks again for all your help and encouragement.
A verse of one of our hymns has been on my mind the past few days: "He leads us and by faith we follow with hearts united to His will; His heart will plan His hand deliver and show to us He's leading still..."
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We continue to keep you all in our thoughts, hearts and prayers. Hope each day gets better and he can gain some strength. He is bound to be so weak after so much vomiting. Our hearts ache for little Clay, and the rest of the family. B&E
ReplyDeleteI am so sorry...there are not words for what you are having to go through. We will continue to pray.
ReplyDeleteThinking of you all so very much. We hope to see you soon. Love, Susie
ReplyDeleteJennifer said it... there just are no words. So sorry! Loving you through prayer and praying you through to tomorrow! Love, Missy
ReplyDeleteOur thoughts and prayers have been and will continue to be with Clay and each of the rest of you. However, please know that through reading your posts each night and hearing your thoughts and fears shared with each of us; your faith has helped me grow stronger in my belief of God, in his goodness, and the extreme importance of unfailing trust in him. Don't worry about all the rest. He is in control and knows the plan. Please don't waiver in your faith no matter how hard your paths seem to be. Juda and Jerry
ReplyDeleteI don't know if this would work or not, but since he really dreads trach changing, have you thought about giving him some little new toy right before you change his trach. If you gave him something first off when you go to change the trach, perhaps it would distract him a little. Also perhaps, instead of dreading that so much, there would be something positive associated with that time that he might kind of look forward to. Also if he had something to hold in his hand and was trying to look at that he was new to him, then he would be less conscious of what was occurring and perhaps less noticeable of the difference in feeling in his throat with the trach out. Sounds like the doctors are getting closer to finding something that works though. Hopefully tomorrow will bring progress and good tests results. Praying for you all. God Bless.
ReplyDeleteI've been wanting to comment for weeks, but haven't been able to get our account to work. We sure think of y'all every single day and hope thoughts help you, though it seems a very feeble help.
ReplyDeleteWe work w/G'ma Joy every year at G'town, so brings you a little closer in heart.
Give Clay a hug for us.
Steve & Donna (Austin area)
Our dear friends, Want to say hello tonight and give you all a huge hug. There was a worker here the other day and she was a nurse before going into the work. She was wondering if Clays trak presses on his gag reflex to cause vomiting? It sounds like anxiety is playing a part in it also. That stuff can do strange things. I know because I had it. Hope that this passes soon and you are out of the hospital. Love you lots and lots. Stan and Helen
ReplyDeleteChance and DeeDee and family We have learned from past experiences that God will allow things in our life for His Glory and our Good. It is so hard to see the good in any of this at times,but God never makes a mistake and He will continue to see your family thru it. Our prayers are will all of you and I know that Jesus shines BIG in all of your lives. God bless and miracles to all of you.
ReplyDeleteBen, Carolyn, Jerry, Cristina and Kee children.
oh my.........I am so very sorry. You are going thru so much.......all of you. You are very much in my heart and thoughts
ReplyDeletelots of love, Linda Block, Susie's Mom
Thinking of you tonight and praying for you and Clay constantly!
ReplyDeleteJeanne' and Gary
Yes, as the song says, He is leading still. This is the best encouragement for sure. I like the possibility of a new toy to distract him. Love and prayers again tonight as always, Carolyn
ReplyDeleteNo words.....but sending love, megahugs and I am praying for all of you!
ReplyDeleteRena
We send Big Heart Hugs, too, and hope that today's tests reveal some answers! With care....
ReplyDeleteMan guys, we are so sorry to hear about Clay not feeling well. We pray that they can figure something our and he will get to go home soon. Thinking and praying for you all.
ReplyDeleteLove the Middleton Family
I was wondering the same thing that Stan and Helen suggested. Could his trach be pressing on his gag reflex? bless his sweet heart, we are wishing so much that this vomiting would end. sending healing prayers....
ReplyDeletethe southerlands
Chance and Dee Dee, reference my trach change/distraction plan, I received most of my Ganz shipments and the motor freight truck is supposed to bring 2 pallets total 18 boxes of Gund products to the store either Tues or next Weds. I'm thinking that there has to a few little somethings among all that stuff, that would make little Clay want to get his trach changed as opposed to dreading it. Who knows, he may end out wanting to get his trach taken out all the time. I figure that after a week or two of sheer bribery and lots of prayer, he will realize that he is fine with the trach out and then you can downgrade the rewards to candy and hugs. We should be unpacking everything Weds, so if either one of you is up here or wants to send someone to help pick out stuff that he might want, just call me or Randy and we will meet you over in Graham at the store. I could just send you some stuff, but I might not pick out the things that he would want most. God Bless
ReplyDeleteSo sorry for all you all are going through-----we keep all in our thoughts & prayers. Love & hugs!
ReplyDeleteWayne & Chris
We keep thinking of you all, hoping you aren't too discouraged by this past week. We hope the GI test will help. Poor Clay - he's been through more than most kids ever will. I love that hymns are so often on your hearts...strengthening and keeping you through these days. We finally got in the area and were hoping to see you but we all have colds...so will steer clear! Sending care and thoughts and hoping today was a better day for Clay. ~Morgan and Michelle
ReplyDelete