Tuesday, June 9, 2009

Tuesday, June 9th

Hello to all. This is Chance posting from Olney. I bet it's hard to know where we are. We are not sure ourselves sometimes. Grandma, Cody, and Mom are in Dallas tonight. Joy spent the night with Clay and said it was not very restful. He continued to vomit through the night. The resident doctor was making his rounds this morning and he told Joy they were not overly concerned about the vomiting. I bet he would be concerned if it was him who had been sick since last Saturday morning. Deidra met with the social worker and told her we were not comfortable with what we had been shown with the trach. They allowed her to go into the tank and two of the doctors came in and showed her how to pull it out. Clay panicked with out it and would not breath through his mouth or nose. They replaced the trach and he promptly vomited. All and all quite a learning experience for everyone involved. Dee Dee thinks that the anxiety he has about his trach is causing the vomiting. I think the cause has yet to be determined. They tried to entice him to eat all day so he would not have to have the feed tube placed back in. They were not successful. He has still not had a bowel movement and several people suggested we try a product called Miralax. Grandma is going to see if this would be available tonight. We are having a tough time these last few days and we are hopeful that something will resolve the problems for Clay. Good night to all.

15 comments:

  1. How frustrating! I hope that they can get the vomiting issue resolved soon. Poor little guy! Hang in there. I am sure that you are anxious about bringing him home when they aren't sure what is causing this vomiting!
    We will continue to pray.

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  2. Praying for you guys...answers and healing!

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  3. Hello:

    I hope they let you try the Miralax with Clay. It was recommended by the Nurse practitioner at the Pain Rehab Center for my husband. We were told that pain meds tend to absorb the moisture out and therefore cause constipation. It works fairly quickly and so much better than any stool softeners, etc. We didn't understand why the doctors who prescribe the pain meds don't go ahead and also Rx the Miralax at the same time....but are thankful for the N.P. suggesting it.
    Now it is available over the counter. Our grandson was put on it when he was only two and it works well, yet is mild on a young child.

    I hope that Clay can have some and get the relief he needs.

    Another thought I had, do you think it is possible that he is fearful of "going home"...by that I mean the leaving the safety he has come to know at the hospital setting? I am sure this must be something that the Child Life specialist deal with; however he has been there longer that many patients. If he is just now, say 5 years, (60 months) and 4 of those months have been at Parkland; then 1/15th of his life has been there; compared to someone who is say, 30 years (360 months) 4 months is only 1/90th. A big difference.

    Sorry to be so long, but I have been thinking a lot more often about all of the past few days.

    Praying as always!

    Jeanne'

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  4. So close and yet so far away. I know it must be hard to think about being released and then have all of these nightmares come up. Well, bless your hearts, we love you and continue to pray. I just wish we could all wave the magic wand and make it all better! Sorry!! Praying for a better night and a much better tomorrow. It seems like it has to have something to do with that stinky old trach. Wish they could remove it. I will just keep praying. Love you, Missy

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  5. miralax really works Cheryl has to take it with her pain meds.We are keeping you in our prayers and hopefully Clay will get over the vomitting. God bless you and keep you strong

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  6. From my experience at being in the hospital, I've learned that most of the things that they do to you will totally ruin whatever gastrointestinal regularity that you used to have. Also usually, they will have to bring in an actually Gastroenterologist and probably have several tests run(none of which are fun) and then if nothing comes back, they will tell him to take Miralax or some other fiber laxative. If they try to give him Metamucil instead, don't let them because that stuff is nasty. Insist on the Miralax if you can get it. Even if Clay were having bowel movements, his bowel can get sluggish and it can cause a lot of gas pressure and pain. If things can't move out the right end quickly enough, they will come out wherever they can. I've found that Dulcolax seems to act more like a laxative. Miralax helps a lot with distention and upper gastrointestinal pain for me personally. Miralax doesn't make you sick or anything and it doesn't ruin the taste of the whatever liquid that you take it in. You can't even tell that you have taken it, but if you have to take pain meds, you can really tell when you haven't taken it. Just an f.y.i. anytime that Clay is having surgery, have the doctor prescribe him Dulcolax as his routine orders because it sometimes almost takes divine intervention to get any other type doctor to prescribe you a gastro med without a gastro consult and the miserable testing that goes with it. If he takes Miralax routinely on his next admit, then the doctor will usually write it into his admit orders, but if not, you are kind of out of luck sometimes. Also the longer that you have dealt with the hospital situation, you might find that you may just happen to bring your own meds of suppositories, Miralax, and Tums with you just in case that it is okay to take those meds but no one has a doctors order to give it to Clay. Miralax is not a prescription med, they sell it at any drugstore, if you don't succeed in getting an actual doctors order for it, just happen to have it with you the next time the doctors come in for rounds and ask them if he can take it. If they say yes, then you are good to go but ask them to write it into his chart that they said that it was okay for him to take it. If you keep some type of warmth on his stomach, he should pass gass and it will help relax the intestinal muscles and perhaps speed a bowel movement. The warmth of your bare hand on his stomach will probably be enough to relieve some distention if you just kind of hold it there for awhile. If his tummy feels like a balloon, then he is probably full of gas. Some folks that work at the hospital have never been sick themselves. They know what illness does to folks, but they don't know what it feels like. Keep bugging them until they give him something to make him comfortable(not just sedated). Sedating him actually will slow down the process even more. He has been through enough. The longer it takes for him to have a bowel movement, the more it can hurt when he finally does. If his bowel gets impacted, then that really hurts. If he gets really sick and nothing else works and they won't give him anything, see if you can get a nurse to bring him a cup of strong coffee and see if you can doctor it up enough with sugar or a little milk to get him to drink it. Unless he really likes coffee, it will probably make him vomit but maybe if he can keep some of it down, it will move things along. Sometimes caffiene can help speed things along. They always have coffee at the hospital. I hope Clay finds comfort soon. I'm praying for you all. God Bless.

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  7. I'm sorry that I am posting so long, but one last thing. If Clay has a bowel movement and it hurts really bad or it won't come out, have him rock back and forth instead of doing a lot of pushing. I hope that you all get sleep tonight. I'm praying for you.

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  9. Chance, I couldn't agree more with your comment about if the doctor had been sick since Saturday he would be more concerned!! Couldn't you slip something in his coffee??? (Just kidding!) I worked for a pathologist a few years ago who always took his dictation of hemorrhoids pretty lightly until he had a hemorrhoidectomy himself and then he would say a little prayer over each one before he dictated the report!!!

    We are standing by you in our hearts!

    Love, Rena

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  10. What an Emotional RollerCoaster!!!!
    We WISH you ALL the BEST!!LOL M&B

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  11. Praying today brings an answer to his problem! We love that little guy without ever seeing or meeting him. Hugs and hugs to Clay and family.

    Royce and Sue Kesselring
    Ashland, IL

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  12. We've been reading and not posting for several days now and I have to say, I appreciate so much what pomuffin and Missy have to contribute. They enlighten us. We also are praying for medical answers and solutions. Clay has been through so much for such a little guy. We pray for comfort for him and his family. Keep the faith guys and may God give you strength! Love to you all, Dawn & Pam

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  13. Thanks SO much for your blogs,--I search for them every night. Just wanted to ask if the Doctors have tried Adavan. My nurse-neice said it helps control anxiety and nausea. You are in my thoughts and prayers continually. Joanne Stone

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  14. Hopefully, they will let him have the Miralax. My daughter age 7 has had to take it and it is very easy on the system...doesn't cause diarrhea or cramping and it gets "the job" done! Poor guy. We will continue to pray for all of you.

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  15. Hello, it seems since they changed his trach to the smaller one he has been vomiting.

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