Saturday, February 17, 2007

Back to square 1...

This was a nightmare...

Drew and I left early (crack of dawn rooster early) Thursday morning to go to LA for Aspen's hip casting procedure. Thanks to lovely traffic on the 101- it became a 5 1/2 hour trip. We get to the hospital and wait. And wait. And wait some more. FINALLY, we are sent for xrays, then wait again. Then, we are assigned a room....with 3 other families....who do not speak any English.

Did I mention we have yet to see a nurse, or our doctor?
Quick bits of info - I am not in the medical field BUT, I have a mother who was in Peds at Hopkins for 20+ years. I was the annoying mother in the NICU that asked 1 million questions, and took notes every single day. I have seen the insides of enough hospitals in my life from my father heart attacks / lung cancer to know when something doesn't feel right- go with your gut.
Finally a nurse comes in to get info on Aspen. I explained that she went 10 weeks in-utero without amniotic fluid, her NICU history (apnea, bradychardia, anemia, PDA. low birth weight, etc) and advise her that she has CLD / BPD. The nurse looks at me (the nurse who is employed in a pediatric hospital) and asks "What is that?" I calmly explain it is chronic lung disease / bronchopulmonary dysplasia. She then goes over the surgery orders for the closed (positioning only) or open reduction (metal plates & screws to keep hip in place). WHAT? GET THE DOCTOR NOW!

The nurse leaves- I'm in tears. Drew is ready to take Aspen and run. So we sit and wait for the doctor. We are there for a closed reduction / casting only, and now they throw open reduction at us?

So we continue to wait. The whole time, not 1 nurse comes in to check on us, or the other 3 families in the room. Finally the anesthesiologist walks in. She starts asking about Aspen's lung issues and recent illness (she had brocholitis 2 weeks ago) then explains that she will need to be INTUBATED during the procedure which will be done under general anesthesia.


Drew is now po'd beyond repair, we still have not seen the doctor, and I explain to the anesthesiologist my concerns and that I am not comfortable with the risks. I also mention that we are under the impression it is a closed reduction only and why are they now mentioning open reduction?

She leaves the room. Drew and I are ready to escape when she comes back in and CANCELS the surgery because she is concerned about lingering effects of the brocholitis. Irony at it's best.

Thank goodness- now we do not have to jump out the window with Aspen and sneak to the car.

Finally the doctor comes in and explains that when he does the procedure, if he knew at that time an open reduction would be the choice, he would just go ahead and do it. Then he mentions he would only do one hip at a time. Which means twice as long in a cast. He tells us to reschedule for 1 month (yeah right). We then wait again to be discharged which took another hour 1/2, then drive back to Las Vegas.

1. If you think that I am going to take my child to a hospital with a nursing staff that never checks on patients and has no clue about preemie issues- forget it.
2. I will not allow Aspen to go through this procedure twice. I want both done at the same time, and I know it can be done that way since the original Ortho we saw said he does both.
3. Security sucks in this hospital.
4. Is it really necessary to put 4 families in 1 room?
5. Parental accomodations are terrible. One parent must stay at all times, yet there is no food available on weekends. We were not even confortable leaving to the room to use the restroom since no one checks on the kids and NO ONE in the room spoke ENGLISH!

So I am making an appointment with ANOTHER doctor locally to hopefully be able to have this done in Vegas. Thankfully my insurance is widely accepted, and I can even go out of state as long as the doctor is a provider for BC/BS. I only chose this hospital because of its othro reputation. I wish I had known about these other issues upfront. I put alot of emphasis on the nursing staff because in my opinion, you spend waaaay more time with the nurses than the doctor, and I must have a certain comfort level. When the trio was in the NICU, I hated 3 out of 4 of the Neonatologists, but I loved the nursing staff. They were attentive, caring and respectful. And since they spend hours with the kids, that is very important. They don't just round and leave like the 3 amigos did.

So we shall see...stay tuned.


The Grubbs said...

Joselle, That is AWFUL! I am glad an opportunity arose where you had the chance to see what they are REALLY like beforehand, instead of even closer to the surgery. I hope someone locally can do better for you!

Michele S said...

Thank GOD you are so informed and research this stuff and are an advocate for YOUR CHILD. And THANK GOD you speak ENGLISH! That tends to help too! I sure hope you can do it here. If not, perhaps Phoenix at the Mayo Clinic? Anywhere but THERE!