Saturday, June 11, 2011

Shriner's Hospital and GI doctor visits

Yesterday we spent from 8am until 430pm including drive time bouncing around Tampa to doctor appointments.

We got to Shriner's at 9am. We seen a nurse practitioner. Jacob was 1st sent to x-ray. When the nurse came back in the room she said his spine was nice and strait still. His hips still look good and are in place where they should be. They fitted him for AFOs for his legs. They are going to be ready on July 8th. We are also getting an abduction pillow for his hips when they fit his AFOs. They talked to us about wheel chairs. We opted not to get one through them just yet. We have plans with his physical therapist for this..which reminds me I don't think I mentioned his equipment order with his physical therapist. My insurance apparently will cover up to a million dollars (this includes medical bills) with no co-pay and they cover 100%. Not sure how much they will approve...also medicaid (assuming it still work when it is ordered) will help pay for anything they might now pay for. So we will soon to have a stander on order, a feeder seat for him to sit, possibly a gait trainer, a bath seat, and his wheel chair. That is a crap load of money and equipment well over $10,000 so his insurance probably won't cover it all at one time. So he has a loaner the most important for me is the wheel chair and for him to have his own feeder seat. The gait trainer is the last thing I will have her order since he won't walk in it anyway...I really just want him to have this for the future. I met a mom at hyperbaric who said her son stood in his for 5 years before he started moving it across the room. Jacob has a follow-up in 6 months with the nurse practitioner. Oh and she referred him to see a geneticist for his "abnormal facial features" and large skin tag on his ear. They earliest appointment is at the end of August.

I am totally considering changing GI doctors. Basically they will do nothing for him regarding his vomiting except a g-j-tube. When I told them the doctors in Orlando automatically will do a nissen with a g-tube they acted like it was unheard of. They continue to tell me the g-j-tube is done before a nissen. On the other hand I hate to put him though that pain, but I am so tired of constantly worrying about when, if, or where he will vomit next. I am really scared he is really going hurt his lungs one day. Not sure if the erythromycin is working so great anymore...Jacob is starting to vomit again and he is starting to stay congested all the time again. Right now we have made it 2 1/2 days without vomiting. I really need to sleep and pray on this. That God guide me in the right direction for him. Jack is totally against the nissen too.

I went and seen my friend Karen and her son Patrick at Arnold Palmer today. Her son had a nissen and g-tube placed on Thursday..or was it Friday...anyways he is doing well now after an initial very bad time in recovery. I worry how Jacob will handle having a major abdominal surgery. Today was the 1st time I went and visited anyone at APH/WPH since Logan died. I been in the lobby a few times but never beyond that since then. This is a little story I wrote on facebook earlier. This happened while checking in to go see them:

Patrick sees a Physiatrist . I believe this is the same thing as a physical medicine doctor. Jacob has an appointment with a physical medicine doctor in Tampa in late July...but Karen told the MD she goes to about Jacob. She was interested in seeing him. She deals solely with spasticity. She comes highly recommended by Karen, so I think I will make an appointment with this lady instead of the Dr. in Tampa. I was told the Orlando doctor could get me in within a week or two. She is new so it is easier to get in to see her.

I decided I need to make a folder just for Jacob with all his doctors, names, phone numbers, medications, appointments, hospitalizations etc. This I will be working on next week.

One last thing. We have a new home health care agency we are trying to get care through .She needs all the stuff listed above so I guess it will give me more motivation to get it done. She feels if we can paint a better picture about how medically frail he is that they may stop denying us.

So here was an ackward moment..luckily my brain does not process things very fast or it would have been worse. I go visit Karen and Patrick at Arnold Palmer today. They have the people that check you in an take your picture at the desk before you go to patients rooms. I walked up to the counter and the lady that was th...ere totally recognized me and rememebered my name. I remember her because she had been pregnant, delivered a baby and came back to work all in the time Logan was in the NICU. I started to tell her my name and she was already pulling me name and picture are still in the computer from my very last time at WPH (Arnold Palmer for Children and Winnie Palmer where Logan was in the NICU are attached together) almost a 1 1/2 years ago. She thought that my son was the patient. She thought I was going to see Logan. I explained to her I was going to see a friend and her son. She says "How is the baby?" Me not realizing who she was talking about, "Oh they are great." Her, "That's good atleast he is not admited to the hospital anymore." That is when I realized who she was talking about. She had no clue that the last time I walked out the doors of WPH, I was not taking my 6 month 12 day old child home with me. It really did not totally hit me until I got to Patrick's room. Sadly I feel good that she was accidently mislead and that in that lady's mind all is well. Hmm just thought that was weird the lady would remember me from almost 1 1/2 years ago. Had a nice visit with Karen and Patrick.


  1. Joseph had a nissen and skipped tubing all together. I am not sure if that was the best decision because Joseph is small for his size and still has a hard time feeding but without having a feeding tube he has been forced to learn to eat by mouth. I am not sure what might be better but getting the nissen, for Joseph at least, literally saved his life. I know it is painful and not something you want to deal with but if the vomiting stopped it might be something to think about.

    Michelle (Facebook friend)

  2. We are also in the throes of the vomiting. Our ped GI refused to do the Nissen with the G-tube because he didn't think she needed it. She is now vomiting almost all of her feeds and has such extreme oral aversion that she barely eats by now at all, due to that reflux. Our surgeon said that the qualifications for the Nissen are failure to thrive or pneumonia. However, my baby is having difficulty with her gross motor skills due to the constant reflux, not to mention that she has stopped orally eating now. (This week it is down to almost nothing). I guess the Nissens used to be really common but not as much anymore.

    We were sent to a geneticist because of skin tags on the ear and dermoid cysts on the eye. It was nothing. (After a month of worrying). He said that it was just abnormal but nothing to worry about.

    I'm sorry about your hospital experience. That must have been so hard.