I was really excited about going to the NICU yesterday for the developmental follow up and about seeing everyone. Michael finally got to see ‘mommy’ Karen again since he left the NICU 2 months ago. That was the highlight of the day.
The rest of the day was a huge disappointment for me. Our appointment was at 1.30 pm and we were put in a waiting room with other kids (something I have been trying to avoid since he was discharged, due to the risk of RSV). One of the kids had a cold and was coughing all the time (his mom took him into the NICU to see the nurses. Can you believe that? I think this is selfish and very irresponsible!).
I tried to wait outside the waiting room, but it took forever!! At 3.15 pm we finally got to see the psychologist for 10 minutes. She did her evaluation and one of the things she said was that he doesn’t respond to the bell. What?!! Really?!? Maybe because he suffered hearing loss?
Then we had to wait again before we got to see the therapist, also for about 10 minutes. We had been there over 3 hours at that time and Michael was exhausted. The result of the therapist was that Michael does not know how to lift up his head. Excuse me!! Michael knows really well how to lift up his head, but after being stuck in a waiting room for 3 hours with a sick kid (and none of the other kids received any RSV shots) he was too tired to lift up his head. Surprise!! So now we had to wait for dr. Adams to summarize what those two therapists told me and I had to wait again!! Dr. Adams decided to see the patient that had her appointment at 2 pm and only showed up at 3 pm, before Michael. At that point I left.
I tried to wait outside the waiting room, but it took forever!! At 3.15 pm we finally got to see the psychologist for 10 minutes. She did her evaluation and one of the things she said was that he doesn’t respond to the bell. What?!! Really?!? Maybe because he suffered hearing loss?
Then we had to wait again before we got to see the therapist, also for about 10 minutes. We had been there over 3 hours at that time and Michael was exhausted. The result of the therapist was that Michael does not know how to lift up his head. Excuse me!! Michael knows really well how to lift up his head, but after being stuck in a waiting room for 3 hours with a sick kid (and none of the other kids received any RSV shots) he was too tired to lift up his head. Surprise!! So now we had to wait for dr. Adams to summarize what those two therapists told me and I had to wait again!! Dr. Adams decided to see the patient that had her appointment at 2 pm and only showed up at 3 pm, before Michael. At that point I left.
I jeopardized my baby all day long and frankly they wasted my time. Michael was worn out and has been coughing and sleeping every since!!! I don’t see any added value in their developmental program as we already see Early Intervention and they have been great! The only reason I waited so long was because we were supposed to have the Apnea follow up with dr. Z.
On my way out I walked into dr. Z. He was not aware of this appointment. I guess they confirmed with me, but not with him. So, all in all very disappointing!!!
6 comments:
Hi Nathali,
It is me Leslie. Your son is gorgeous and getting so big. I am so happy that he is doing well. Don't worry Early Intervention is great. Jeremiah went through this program and he is doing great. Take good care of yourself and your beautiful family. I just wanted to let you know I always read Michael's blog. He looks wonderful.
Take care and many blessings,
Leslie-- from Royal Caribbean
That is so absurd. I'm glad you left. You're right you see EI, and if you only get 10 minutes with the therapists then forget it...why even go back? You know what Michael can do and what he is working on. You should write a letter of complaint. I'm sure you are very angry, and rightfully so. I hope Michael didn't catch a cold.
Dear Nathali,
As the paternal grandfather of Jordan, another micro-preemie, I delight in the fact that even though you are keeping Michael's journal, you find time to lend encouragement to my son's family. Thanks for helping lighten the load and providing more hope and insight for us.
HOw frustrating. I know waiting with a baby/toddler is crazy. Our last Gi appt. was at 11:20 finally saw the Doctor 12:20 but for a good 1/2 to 45 mins. then waited another 30 + to see the nutritionist, still had to eat lunch get James to nap and get ready for work. These docs boy whats wrong with them. Tracy
Hi Nathali,
That sounds so frustrating!! It sounds like they are much better at the inpatient care rather than the outpatient care there.
I know with my niece there are still times when she is exhausted and has to "perform" on demand for one therapist or another - often it is according to their schedule. Inevitably, on those days, my niece won't not do what they want and she looks as if she was making less progress than she is! Ugh!
I'm sure that it does feel like a big waste of time. What is wonderful is that you are are doing a fabulous job as Michael's advocate!!
Hang in there - Michael looks great and he sounds happy!
Love, Mary
Thanks for your prayers for Sammy. WE will be praying for Michael too that he doesn;t get sick, and that you don't have to wait that long ever again! That happened to us once. After waiting for 3hrs the dr's assistant came in and said "Oh sorry the doctor went home!!!" WE were furious.
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