Feb. 17th, 2009

It’s almost been a week since we’ve been home. Wow, that was a long week. To sum it all up. Children’s in Chicago has employed some of the worst doctors I have seen. Danielle started to get increasingly worse in the hospital. She started having more and more seizures, vomiting and total body spasms. The first night home was terrible. When she wasn’t having a full body spasm she was seizing and when she wasn’t doing either of those things she was throwing up. Thank God I had a RN (thanks ANN) that first night home because Danielle was so miserable. She didn’t sleep for at least 48 hours because of the pain and discomfort she was experiencing. The night I got home I emailed the doctor up in MN explaining what was happening. She called the next morning and immediately discontinued 2 of the 3 antibiotics that Children’s put her on. Apparently those two meds are known to excaberate the underlying neurological disease, which happened. She also increased her pain and seizure meds. The concept of the antibiotics is to help heal the pneumotosis while giving the gut time to rest. I think the docs went over kill on the antibiotics. The docs at Children’s even spoke w/MN and they were told that we weren’t all that concerned about Danielle’s health but more her comfort so not to expect to “cure her”. They didn’t take MN’s advice and as the result Danielle suffered needlessly for 4 days. The good news is that she rebounded very well once those 2 meds got out of her system. She is back to baseline. The nurse called the doctor that ordered all these antibiotics and told him what had taken place….his response “Oh”. LOL! The comedy of errors continues with Children’s. We are suppose to go back on the 25th for an x-ray to check her gut. Our nurse today called to make sure the appointment was scheduled and when she did so she found out that the doctor wrote the order for an x-ray of her pelvis and knee instead of her abdomin. LOL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What in the world is going on there? Clearly he had the wrong patient in mind but if she, the nurse, didn’t check today it would have cost us hours in delay on the day of the x-ray because they would have needed to get ahold of the doctor to correct the script. We all know how that goes. I realize that doctors don’t know everything…however someone needs to tell them that because they almost killed Danielle. I feel one positive thing that can come of Danielle’s dx can be a learning experince for everyone involved. It would be nice if all doctors realize they are undereducated in this disease and just try to learn something from her rather than continue to think they know all. Geez!!!!

Yesterday was a blood draw day. It took the entire 8 hour shift to figure out where to take the blood, what color viles, get the correct adaptive syringes and drive it to the lab. Once I got there we had one wrong color vile so back home I went (another 45 minutes drive) to get 1 vile of blood and back to the lab. All of this by the way had to be done before late afternoon as the pharmacy that makes the TPN needed to have results for shipment by Weds.

The nights that I’ve had LPN’s I’ve been having to get up for 45 minutes to infuse the antibiotic (one left) then go back to sleep. Those nights feel as if I don’t really sleep. A flash back to a year ago. But my nurses have taken pity on me and one of them is willing to work a night shift for me then in the morning go to her regular job!!!!! (Thank you ANN!!!!) About 2 or 3 more nights of me getting up then the rest of the schedule for the antibiotic the RN’s will take care of.

This whole PICC line thing is pretty easy. It just seemed overwhelming the first couple of days but now things have calmed down. I have made new friends w/the supply company. Because I don’t know what in the world every little piece is called and my explaination on things is pretty vague at this point, they are all laughing at me. Nothing works the way it’s suppose to so I have to end up compensating and it’s all a comedy of errors.

Thanks for checking in on Danielle today!!!!

With love,
Megan