Realizing I have no safety net

A week later Gesina is in the same ER and they can't help us. Gesina kept violently throwing up her 9am time-sensitive meds. When her caregiver called her pediatrician, they wouldn't help her as she is not the mother. When I got out of a meeting I called her neurologist and asked what to do, I was told by the nurse that Gesina MUST have her meds so if she wouldn't take them orally, we must go to the ER and have them given intravenously. This sense of urgency surprised me because in the NICU the heuristic was if she threw up her meds, you didn't redose as you wouldn't know the amount to redose. I had figured that a "missed" dose wouldn't be so traumatic but who am I to argue with the neurology nurse? So at 1pm, I told Trish, her caregiver, to take her to the ER so she can get her meds through an IV. When she gets there, have them call her neurologists office and talk to the on call doctor as this is what the nurse instructed me to do. I then race from work to the ER because they won't help Gesina if I'm not there because Trish isn't her mother.

In the ER, after retelling Gesina's long medical history to at least 3 separate medical personnel (and one was on the phone with my neurologists office), an ER nurse finally came in to try and find a vein for Gesina's IV at 4:30pm. Last week it took a neonatologist, NICU nurses, and an anesthesiologist using a light "saber" vein finder and an ultrasound to find veins to place her IV. That was three different "tries" and numerous sticks to the point where she has bruises on every place you would think to use a needle to find a vein. This poor ER nurse didn't have a chance and after searching her body, didn't seem confident at all. As we held her down, Gesina seemed to know what was coming and was screaming bloody murder. For the first time, I just couldn't take it. Every cell in my body was screaming no and I started to tear up. I stopped the nurse with the needle in his hand and asked him if he had found a vein, he said maybe. I said stop, I'll just give her her meds. Fifteen minutes later I'm holding my miserable child upright to ensure she doesn't throw up the meds I just gave her via syringe. It took another hour to get the discharge papers even though I fixed it and they didn't do anything! Oh, and I got to give her the 9pm dose in a mere four hours later.

I know everyone is just doing their jobs, but this whole experience taught me that I am 100% on my own with this. Neurology suggested I flavor her meds... yeah, I've been doing that. Every suggestion I've been doing or tried. I'm so annoyed that for the second week in a row I'm sent to the ER by neurology when the ER can't help me! I agreed to the ER option yesterday thinking the time-sensitivity of her meds was of utmost importance. In fact, when Trish arrived, the ER receptionist knew who Gesina was and that she was the "baby who wouldn't take her meds". This means neurology called and tried to give the ER a heads up. It is not ERs fault as they have a priority system but Gesina ended up taking her meds 8 hours late. If neurology had appreciated the function of the ER and that Gesina has difficult veins, then they could have calmly advised me to keep trying to give her her meds orally until she keeps them down. I would have done that but instead I'm that crazy mom rushing her child to the ER every week only to have them scratch their head as they wonder what they are supposed to do to help. Grrr. I'm beyond frustrated and worried, what if something happens to me? Who will give Gesina her meds twice a day, every day? Blah.