This is an email from a friend of mine......she and her children were in an MVA and her 4yo son has been diagnosed as a quadraplygic....I don't know what to tell her.....need advice to give her.
I'm sorry I haven't posted anything in a few days. Jason's surgery went Great! There was a care conference held on Thursday & that didn't seem to go well. I've never been more upset in my life. I still haven't gotten over everything they've said.
1. They said that Jason's condition Will Not Improve.
(we know they're wrong & my husband said that they're not God So to shut up. We are very optimistic with what the outcome will be) I would also like to note that there is still swelling at the top of Jason's spinal cord & they can't even see what or if there is any damage to the spinal cord. The swelling can be causing the temp. paralysis. The roots to the spinal cord ended right above where Jason's back was broke. The surgons did not want to explore while they had jason open to see if there was any damage. That will more than likely be another time. My point is that they don't even know the extent of the damage Jason has, yet they predict that he will not improve. God will show them wrong.
2. We were told that they weren't going to teach us anything & that when we went to the rehab center we would learn what we needed. The night before the conference our nurse came in & said that we needed to start learning what needed to be done @ 10 that night. Chad told them that we would like more than a 2 hour notice so that we could mentally be ready.
So in the charts they put down that we did not want to have anything to do with Jason's Care & That rose concern in the meeting.
3. Chad & I are a problem for everyone at the hospital. We were promised a care team (having the same nurses) & we were told that none of the nurses like us & that is why we haven't gotten a team. Aparrently, the issue is that we ask too many questions. Although, questions are encouraged, but I guess we have to choose wisely. Chad & I have questioned the care for our child for our knowledge of how things are suppose to be done. When we feel something isn't right we ask for another opinion. This is getting in the way of everyone getting to do their job.
Story:
The night before Jason's surgery our nurse talked us into changing Jason's Trach from an uncuffed Trach to a cuffed trach so the alarms wouldn't go off so often & Jason could get a good night sleep before his big day. We were told that we could change it back when we wanted to. That night when Jason woke up, we couldn't understand or hear him talk. We asked that the trach be changed back & the RT's & nurses threw a fit about doing it. 2.5 hours went by & Jason was frustrated & crying, so we kept asking to get it changed back. No one wanted to do it because they had paperwork to get done so they could go home. We asked again for our son's sake to make him more comfortable. After bringing up blood gas issues & having to talk to other rt's etc.... they stomped their feet in there huffing & puffing & angry voices & got it changed.
Also this week:
The day after surgery, Jason didn't eat or drink anything that day. He started complaining a lot about his tummy hurting around 2pm. The nurse came in & gave him 2 different meds to help with pain & he still complained. They tried to tell us that it was a neurological pain & that he couldn't really tell us where he was hurting. 3:30 & Jason is in & out of it & still in pain. The nurse wants to mask the pain more. I said I really think there's something wrong with him.. he loves to drink water & he's refusing it. She says it's typical after surgery. 6 pm rolls around & Jason is in Pain, I could tell his little tummy was getting bigger but he wasn't eating or drinking, so I didn't know what the cause was. I called the nurse back in. She said she couldn't tell anything & it all looks fine. I told her that it's gotten bigger & she blamed it on gas. Ok.. that's kinda reasonable but you'd think it would have passed by now. I asked for a sonogram machine to be brought in or something so we could see what was going on in his stomach. But NO. It's 8 pm now & Jason is crying it hurts him so bad. I call the new nurse in & She looks at it. She walks out & back in & says," I asked around & they said that it's been like this all day". I asked who she asked, & never got an answer. Nothing is working for Jason right now & it's killing me watching him go through all of this! We asked for the nurse practioner to come in & they're fixing to roll him from his side to his back. The Practioner walks in & Yanks the pillow that was holding him up from under him & our nurse looked at her & said his back is broke & she looked up & said I know!!!! I asked for a sonogram machine or an xray, something again, but they want to do labs first. They poked him I don't know how many times & could never draw blood. They finally did it through his pic line. 8:30- his stomach has gotten SO Big that his pours looked like zits! They bring in an xray machine around 10 & then say oh wow.. his stomach is huge! OMG they took an xray of his chest & stomach & The only thing you could see on there was his tummy!! They immediately put a tube in his nose to drain everything from his tummy & didn't have a chance to hook it up to a suction & it was already squirting out. They got crap all over the bed & my son.
As of now, I'm doing the trach changes, ostomy change & cleanse, In & Out cathitering him, bathing him & anything else that does not require a signature for meds. I would have to learn it anyway, but they didn't want to teach us until these people were coming to audit them the Day before his surgery. Now we write down our questions & let them answer them at their convenience so we're not a burden. I "ALMOST" feel bad for wanting to hold a party for Jason now, I mean I really don' t want to ask too much more of this hospital!
I'm sorry this has been so long. We aren't able to post the video of Jason sitting up just yet, but we will soon. We do have pics that I will attach for you all. I hope everyone is doing well! Please keep Jason in your prayers. He needs them so bad right now. Thank you!!
