And this is why................

I'm going to BLOW!!!! I'm trying to hold it together as I know Danny needs to be inpatient to figure out what is causing him all these issues, but can this system get their shit together. This is a reoccurring issue when we are here with miscommunication and screw ups ...... then they wonder why I am the way I am. I've come with ALL the info written out in black and white for them as to everything needed for Danny and his routines, but things still get messed up. How much easier can I make if for Them.? This is why I try everything in my power to STAY home. Sometimes i truly wonder if they listen to me and are really trying to make him better? As some of this mistakes could potentially make him Very Very sick. We've been here less then 24 hours and here's the run down of everything that has gone wrong so far - Some of these are very minimual but things that have been repeatedly stated here 1. Lost paperwork 2 hrs into ER stay 2. X-ray came in to do X-rays in the ER and it was for a different patient. 3. They still have heaters set up to the vent set up for him 4. At admission RT was in here but didn't suction him out when it was evident he needed it. 5. His rectal probe was taped down on his leg with - yeap you guessed it the tape he is allergic too 6. I find it funny at 10pm the nurse found out I never signed a consent form to be here, lol 7. I specifically stated when they asked for allergies that he's allergic to Tobramycin and needs Tobi for his nebs and guess what was brought up? I'm so glad we found that out before it was given 8. After waiting 30 mins for his prn meds, during a seizure (as it got over looked and didn't get added to the med sheet right away) we opted to give the diastat as it was taking too long. Just before we gave the diastat the prn med came up so we were able to give the Clonezepam. About 10 mins later the Dr comes in to apologize as pharmacy just called her stating the syringe labeled Clonezepam was mislabeled and we gave him Clonidine. Which is another med he has severe sensitivity too. Guess that's why his seizure didn't react to the med and we had to give him Diastat. :( So the added Clonidine and diastat isn't going to help with his already severe sedation,but what is done is done and we'll just have to Watch him closely. I hope this doesn't set him back anymore. There is an incident report being written up over the mislabeled Clonezepam. Ok my vent is Done time to move on....... On the Danny front Over night he remained stable - not any worse but not any better either. In true Danny form everyone here is clueless to as why his body is responding like this. Is it an virus, infection, seizures, meds??? ......right now all options are on the table These are the issue at hand for Danny - severe sedation - hypoventilation - thick/ yellow secretions - right lower atelectesis - HIGH CO2 levels (68) - LOW platelets (65,000) - LOW BP (61/42) - low temps (91 F) - petechia n brusing - urine retention - seizures - severe drooling We've increased Puff's rate to 12 from 6 in hopes to help him blow off some of the co2. Over the nite he did drop down to 59 so I think that's working. They've increased his breathing treatments even more, but I haven't seen any improvement as of yet. They are really stumped with the low platelets whether it's an infection issue or if his body isn't producing or is destroying. Its Still a mystery :(. The low BP was tried to be "fixed" with a bolus of fluids, but it backfired and it dropped further 89/36 his temps started dropping again and his body is looking "fluffy" so I'm sure he's started to 3rd space :(. Right now they are doing an EEG to see if his seizures have gone status or if theres any change in the activity which could be a reason as to some of this issues. We are really no further ahead yet, but things ARE getting ruled out. Go figure no easy fix for Danny :(. Thanks for checking on and praying for my Lil Man!!