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Old 01-27-2013, 10:10 AM   #1
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Ds is still having problems with his blood sugar. He's being admitted again at a major children's hospital out of state & 2 hours from home. I expect we will be there 3-4 days. This will be his 3rd stay there. I'm trying to think of ways to prepare him with our stressing him out. He just turned 3. He also just started a special needs/handicapped preschool program 3 weeks ago.

He has a severe sensory processing disorder. I did speak with the hospital about him having a private room. He becomes aggressive & violent often and especially when his blood sugars are low. He also has severe food allergies & is still on Neocate Jr only.

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Old 01-27-2013, 10:33 AM   #2
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We have mentioned the hospital a little. I'm not sure if I should directly say "hey next weekend, you are being admitted" since I know he will spend the whole week freaking out anytime we try to dress him to leave the house. He had an outpatient appt at a hospital in NYC in Nov and when I said in the car on the ride there "the sign says the hospital is this way", he started to scream. This was also during hurricane Sandy & we were coming from week 2 of no heat, no lights & chaos at home (we live on the Jersey Shore). So things were very stressful at home but just hearing the word hospital made him break down. He's been admitted twice out of state & twice locally, plus countless ER visits.

One of my daughter's friends was inpatient locally last week & we made a point to show ds photos my daughter took when she went to visit. Pictures of the kids smiling standing next to the IV pole, standing with a therapy dog that came to visit & just photos showing hospital things but with the kids standing together smiling.
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Old 01-27-2013, 10:36 PM   #3
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Re: Being admitted again out of state, helping to prepare?

Honestly, I'm not much help. All I can offer is sympathy.

My son screams from the moment a doctor/nurse/medical tech walks into the room until they leave. He also freaks out at the hospital. The little stinker will literally stop screaming the minute we step out of the hospital and smiles. He does have sensory issues but this isn't sensory, it is pure medical phobia.

If it is just sensory maybe getting his OT and the hospital's Child Life specialist together will help you come up with a game plan. If it is fear, I don't know what to tell you because we haven't come up with a solution either. DS is so terrified he will fight through heavy sedatives during testing, we usually have to forgo the test or go for general anesthesia. As for violent, well violence isn't a sign of sensory overload in my kid it is a sign of pain so a dose of Motrin or Tylenol with Codeine will turn him back into a charming kid again.

Sorry he has to go through this. Hopefully, he does better then he did last time.

ETA; I have had bad experiences with the hospital nutrition lab sending up adolescent formula within a decent time frame (most pediatric floors only keep infant formula on hand). You might want to come prepped with 24 hours of formula ready to go and have the admitting doctor write in the doctors orders that they can use the formula you brought until the nutrition lab sends the proper formula up to his floor.

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Old 01-28-2013, 09:15 AM   #4
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Re: Being admitted again out of state, helping to prepare?

I agree with getting child life specialists, they can help so much. When DS had surgery a few weeks ago they came in with books of kids(real pictures taken in their hospital) and I think it helped him a lot. I'd also be very clear when he's admitted that he has sensory issues. Like my DS needs everything explained and to touch it first, so we need a patient nurse who won't get annoyed with that. I would definitely say those things when you are getting admitted. I'm not sure they can do much ahead of time since scheduling changes so much in a hospital but I'd definitely be clear about his needs when they're doing the admit paperwork. Hope everything goes well!
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Old 02-02-2013, 01:47 PM   #5
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Re: Being admitted again out of state, helping to prepare?

Thanks guys! To throw a crappy monkey wrench in all this, he has an ear infection that we were at the drs for this morning. I called the hospital to see if we have to reschedule and they said that tests won't officially start until Monday even though the admission is tomorrow so they are hopeful 48 hrs of antibiotics is enough to help him feel better. They did say if he starts to run a fever or just seems not well, that we will have to reschedule. A lot of planning went into this date, I'm having surgery myself in 3 weeks so rescheduling would have to be months from now, which we don't have, health wise for him, to wait on. I really hope he's feeling better tomorrow for himself and this admit.

I did talk with the admitting nurse on Thursday night. I'm almost thankful that she called when ds was screaming bloody murder and had just hit me in the head hard so she could hear how worked up he gets and how much he can injure someone. It sounded like him having his own room wasn't a done deal and I explained that it was a HUGE safety risk to give him a roommate. I also let her know that he is a safety risk to the staff and everyone needs to be on alert. She said she would call to that floor's nursing staff about his room placement. I'm not trying to be a pain in the butt who just wants her own room. I can't sleep and guarantee that he won't wake up quietly and mess with the other child and harm them to the extent of them needing an ER visit. His bus service with his school started this week and he's been very, very off the wall. He says he really loves the bus but it's change and stressful for him.

I am going to request help from child life. We will certainly need it. Thankfully they are admitting him on Sunday and not starting tests until Monday (they want to watch him as we usually feed him, etc). So they will give him Sunday afternoon into Monday morning to get comfortable (if that's possible).

I hear you on the formula. I have learned, if we are local, I just plan to supply all his Neocate Jr for his entire stay, they never have it. If we are out of state, I bring enough for 2 days just in case. His admission is Sunday so I am expecting that they won't have it ready until mid-day on Monday.
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