My poor easy child medical trauma... Update 5-20

Discussion in 'The Watercooler' started by mom_in_training, May 14, 2007.

  1. mom_in_training

    mom_in_training New Member

    My easy child son that is severely disabled asperated on May 5th. Tomorrow will be 10 days that he has been in the hospital. On the 5th I had fed him and about an hour later he started coughing profusedly and I called 911. His fingernails were turning blue and my exact words to him was OMG you sound like your drowning. He was taken to the local ER and then transferred to the childrens hospital in another county where all of his doctors are so I have been there everyday and just coming home to sleep. I'll tell ya with the price of gas is wiping me out so I have started taking the Metro Link train. I am limited as far as time by taking the train but its well worth it considering the stress of the freeway (Always a parking lot!!) and its allot cheaper then driving. He developed pneumonia mostly in his right lung from asperating but with respitory therapy and antibiotics he is now free from pneumonia. Now the doctors are talking G-Tube for feeding after getting the results from a swallowing study that were not all that. All of this happening to a boy that has enjoyed eating by mouth all of his life. Tomorrow (Tue) they will be doing a ph probe study to see if he has Reflux or Gerd. Its been a crazy week to say the least. On a good note though, I did talk to the Occupational Therapist that assessed my son with the swallowing study and she did say that there is a therapy that can aid in swallowing problems and that he just might be able to eat by mouth again depending on his progress. the new therapy is done with electrodes to build up the muscles in the esophagas. In my sons case his esophagas muscles are weak and this is preventing him from swallowing properly. I just learned of this therapy today and have yet to research it. While all of this is going on my difficult child decided that she just has to go visit her homeless boyfriend and dogs me on Fri and I have not seen her since. She has allot of growing up to do. Strange that she wants to live like a homeless person part time but then have a nice home to come back to at her convenience, Hmmmmm? Not gonna work out as far as I am concerned. She cannot have her cake and eat it too. She definitely needs to learn that life is not all about having and doing things at her convenience especially when she has responsibilities that she needs to be focused on. Shes a joke.....
     
  2. Big Bad Kitty

    Big Bad Kitty lolcat

    Prayers being sent your way. How scary that must have been.

    A therapy for building esophagus muscles? Medicine is amazing.

    Best of luck and big hugs.
     
  3. Wiped Out

    Wiped Out Well-Known Member Staff Member

    How scary-saying a prayer for easy child :angel:
     
  4. mom_in_training

    mom_in_training New Member

    Thanx for the prayers.... Well the ph probe study did not pan out. He wanted absolutely nothing to do with it so they gave up after 3 trys. Tomorrow (Wed) they will be placing a G-Tube and so long as her tolerates it well he should be coming home in the next two days. I'll tell ya though it really bothers me to have the one thing that he truly enjoys taken away from him. (Eating by mouth)He has always ate by mouth (Soft foods) and just smelling food makes him anticipate eating it when he is hungry. I will do everything in my power to get it turned around though with the therapy. In the mean time the G-Tube will have to do so that he is not at risk of asperating again. He will be 20 years old on the 18th and I am hoping that he will be home so that we can get back to normalcy, Yea it will be altered a lil bit by this tube thing but for the most part we usually adapt and move on. Its weird not having him at home because I am so used to taking care of him, Its like I am his arms, His legs, His feeder Lol, his diaper changer. I feel like my left arm is missing lol and don't know what to do with myself. Hes my lil angel :angel: and I want him home.
     
  5. judi

    judi Active Member

    I am so sorry! I would imagine he has been thru speech therapy to learn to swallow as I'm gathering the chin tuck doesn't work? Maybe if he can swallow some consistency of food - he can get a bite in here or there. The g-tube thing is a hassle, but you are so right that it will prevent aspiration and thereby prevent recurring hospitalizations.
     
  6. slsh

    slsh member since 1999

    MIT - I'm *so* sorry you're dealing with- this. Will they be doing a Nissen fundoplication as well, or just placing the g-tube?

    Boo has had a g-tube since 1991 - in his case, it was due to a failure to thrive in spite of massive efforts with- therapy to get oral motor skills up to snuff and the chew, swallow, breathe thing down. We opted not to do the Nissen, which in the long run was probably the best choice for him. He has had a couple of extended episodes of reflux esophagitis but we've been able to manage medically. (Knocking hard on wood) Boo hasn't yet had pneumonia, though we of course are constantly on the look out for aspiration, etc.

    The decision to place the g-tube was probably *the* hardest decision we've ever made - I was a complete wreck and felt like such a failure. Like you, I really didn't want to take away the option of oral feeds, but on the other hand, oral feeds just weren't doing the trick.

    We do continuous feeds using a pump at night. He is able to eat "normally" during the day, though fatigue and lousy motor skills are still a problem, but at least he gets the social benefits of a meal and he does love his pizza and ice cream. I also have to say, when he's been sick the g-tube has really come in handy. Dehydration is always right around the corner with- him and by having the g-tube we can be sure he's getting enough fluids. medication administration is also easy - Boo would never be able to swalling the capsules and pills for his epilepsy, so we just slip it in the g-tube.

    You're in my thoughts. I hope it goes well. Do keep us updated on the therapy - I've never heard of that. Sending up strong vibes that this will need to just be a temporary fix and that he can get back to total oral feeds without the risk of aspiration.

    *So* glad to hear he's recovered from the pneumonia!!
     
  7. Hound dog

    Hound dog Nana's are Beautiful

    I'm glad there is a therapy to deal with this new development. But sorry you and your son are having to deal with this at this point.

    Have you tried staying at the Ronald Mc Donald house? Do they have room? Sure would save alot on the travel time and gas if they could get you in.

    Hugs
     
  8. Sheila

    Sheila Moderator

    What a nightmare! Prayers he continues recovering.
     
  9. mom_in_training

    mom_in_training New Member

    Hi everyone, Well another day another finding. No G-Tube today. When they went to go do the G-Tube this morning but they discovered that his stomach is not exactly where it should be. My son does have severe scholiosis and was supposed to get Spinal Fusion surgery in Dec of 2006 but after getting a nasty gum infection from dental care he had at a very well known hospital in Ca (Not the hospital that we are at now) the surgery had been postphoned due to the weight loss that ocurred during the infection. The stomach I guess has been pushed upwards due to the contortion of body from the scholiosis. Oh and his stomach is herniated on the upper part as well and the doctors say that that probably ocurred from wretching when he seizes or gets sick. Hmmmmm....

    Sue, They are going to do one more test to confirm that he has reflux (Upper GI) in the morning but do have him scheduled for Friday afternoon (His Birthday Eeeek!!!!) to do the Fundoplication and placement of the G-Tube to include moving his stomach to where it should be. We will know for sure tomorrow about the Fundo actually happening during the surgery though.

    Lisa I have thought about it (Ronald House) but have been going home for the evenings to take care of the pets. I tried sleeping @ the hospital but geeze your lucky to get maybe two hours so I just decided to go home in the evenings knowing that they take great care of him at the hospital. All of his doctors work out of this hospital and have been seeing easy child since he was a little guy.
     
  10. slsh

    slsh member since 1999

    Goodness, MIT... it's always something, isn't it?? I'm keeping you and easy child close in my thoughts. Hope the GI goes smoothly and they can get a game plan together.

    How's easy child holding up with- all this? Boo would be restless beyond words... but on the other hand he does *love* those female nurses. :wink:
     
  11. rejectedmom

    rejectedmom New Member

    So sorry for you difficult child. I hope this rest goes smoothly so you can bring him home. -RM
     
  12. mom_in_training

    mom_in_training New Member

    Upper GI went well and my easy child is going in for surgery Fri afternoon. I'll tell ya this child keeps me on my toes. As far as how he is doing? OMG he is as normal as can be and ready to come home like 4 days ago. I have finally got all of the nurses on the same page. It is Mommy mandated that he go to sleep listening to his classical music and in the morning he listens to Mark and Brian 95.5 KLOS Lol!! Its a rock station and the two djs do allot of funny skits with all kinds of different sound effects. My easy child has been listening to Mark and Brian for years in the morning and he laughs his :censored2: off. The nurses thought he was seizing when he was listening but realized that he was laughing at the radio show. I'll let you all know how everything gos. He is sooooo high spirited and doing well but Fri might be a tough day for him. What a life change for all of us but we will get through it and just focus on getting him the swallowing therapy so that we can get him back to real food by mouth.
     
  13. flutterbee

    flutterbee Guest

    I somehow missed this thread. I wanted to let you know that I'll keep your and your son in my thoughts. He sounds like a great kid. I hope you're able to get some rest in with your hectic schedule.
     
  14. mom_in_training

    mom_in_training New Member

    Well Surgery went well (4 hours long) He is still in the hospital and today they are starting Pedialite to get him geared up for his feeding through the G-Tube. So far so good. I am truly amazed that my easy child is sooooo high spirited considering everything he is going through. Geeze I'm almost afraid that his laughing like this > :rofl: is going to launch the G-Tube. In general after any surgery he would start coming out of the anestesia a basket case but this time no way, And this is like the biggest surgery that hes ever had. Today will be 15 days in the hospital and I can't wait to get him back home so that we can have some normalcy again. This time around though I guess I'll have some nurses assisting for a short period of time to basically train me on how to work with this G-Tube and whatever else. Its all new to me, But I will also be working on his therapy to eventually rid of it too. The fact that he has always enjoyed food and then all of a sudden have it be stopped so abruptly really bothers me, So with the swallowing therapy I am hoping that he does well enough to eventually rid of the feeding tube. Asperating will no longer be an issue for him since they did a Fundoplication (During the fundoplication procedure, the part of the stomach that is closest to the entry of the esophagus (the fundus of the stomach) is gathered, wrapped, and sutured (sewn) around the lower end of the esophagus and the lower esophageal sphincter. (The gathering and suturing of one tissue to another is called plication.) This procedure increases the pressure at the lower end of the esophagus and thereby reduces acid reflux.)

    Well, Off to the hospital.
     
  15. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Keeping you guys in my thoughts. Hope you can get that guy home soon and back where you two will feel more comfortable.

    He sounds like a wonderful easy child.

    Hugs!
     
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