Friday, May 24, 2013

2nd Hospital visit in 2 days/ Meeting the new Gastro

So, we went to the doctor Monday morning after Mother's Day, and Dr Wong took one look at Mateo and knew he needed fluids. So she admitted him to the PEDS unit at the hospital. The good thing is we got to bypass the ER and his IV was done by a PEDS nurse, he was only poked once. It was still frustrating since I had to call in sick to work, Mateo had to be poked AGAIN, and he had to sit in the hospital again. I think this should have been taken care of either in the ER or they should have just transferred us to PEDS like I had asked for.
But what do I know?
We spent the day in PEDS, where Mateo got IV fluids and had his labs drawn. His platelets were still low and his electrolytes were low. All the peds doc was worried about was getting him hydrated since we had a GI follow up scheduled for Thursday. We were discharged that evening and Mateo has been doing well since.

That same week, we had Mateo's GI follow up appt with his new Gastro, Dr Linda Muir. Our GI that has been with him since day one is retiring, so we decided to start with a new GI now, and get to know her, let her consult with Dr Terry before her retirement.
The appointment went great. She is a great person, I like her alot. She was personable and friendly. She was super impressed with Mateo and how well he is doing despite having TCHD, Short Bowel and EE. She said his growth is outstanding! I am proud of my boy and all that he has conquered.
Her plan is that she put him on meds for the EE, a steroid. It is to coat his esophagus and help with inflammation. She wants to see us back in 3 months ( around Aug) to check up on him, and at that point we will schedule his next endoscopy to follow up with his EE and see if it's getting better. IF it is getting better, we may be able to reintroduce soy into his diet. This would make life so much easier. Being sugar, dairy and soy free is extremely limiting!! I've had to completely change the way I shop and cook! But it's worth it for my son and his well being!!

Monday, May 13, 2013

Mothers day ER visit

Mothers day morning was typical, well typical for US. I was woke up at 6am because Mateo's bag was leaking. He was a HUGE mess. A huge, smelly mess. And to top if off, he was passing blood AGAIN. I get him in the bath and clean up his room. Realizing it's so early on a SUNDAY, we get in the car and head to the ER.
They got us back fairly quickly even though the bleeding had stopped, but now he was dumping. ( very high, pure liquid ostomy output). A nurse comes in and trys to get an IV started. She tries twice to no avail and calls another nurse. This nurse comes in and immediately looks irriated at Mateo because by this point he is a screaming, crying, sweaty mess. He doesn't feel good and he's not enjoying being poked and prodded. She gives it a whirl and of course ISN'T successful. I tell her I'd like a peds or nicu nurse and she gives it another go. While shes feeling for a vein, she raises her voice, literally yelling at my son saying "you NEED to stop!" She pushes the needle in and then tries to draw blood. It doesn't work and she tells Mateo "it was in, YOU pulled it out. See what YOU did?" Right there I asked her for a different nurse and told her I felt she had lost all patience with my son. She looks at me and in a scarcastic tone tells me, ' don't you worry, you're getting someone else." At this point, I'm FURIOUS and I'm crying. My son is crying. He's been poked 4 times now and still no IV fluids... I'm done. I press the call button and I ask for a supervisor. The Charge nurse comes in and asks me what is wrong. I asked her to be transferred to Peds or I'd like discharge papers. I told her what had happened and she kept insisting that I talk to the doctor. I told her I wasn't waiting and that I could probably make it to Doernbecher ( 2 hours North of here) before the doctor made it to our room. I was adamant on getting peds or we were leaving. She let me know they had already called Peds and a nurse was on her way down.
Sammy, one of our regular peds nurses came and saved the day. She greated Mateo and talked with him, let him know what she was doing step by step. He was still crying, but he was calmer. She got the IV on her first try, which was HIS 5th poke.
We stayed in the ER room while Mateo received a bolus of IV fluids, the charge nurse apologised profusely along with the Dr and another nurse that was assisting. After the fluids, the doctor said Mateo was good enough to go home.
We come home and Mateo is still dumping. He isn't interested in eating. I managed to bribe him with a burger from McDonalds, but that is ALL he has eaten since Saturday. It's now Monday morning. He is drinking and he will snack on pedialyte popsicles, but he is not peeing. He's peed once since Saturday night, and I'm afraid he's still dehydrated.
I called his primary physician and we have an appointment with her here in a couple hours. I am hoping we get him sorted out so he can feel better. He's tired and not himself. He slept from 7pm last night til 6ish this morning.
I am so upset at how the last couple days have gone... Mateo not feeling well, the experience at the ER, and them letting him leave when he's not fully hydrated... Me having to miss work and drive him to the doctor, and we'll probably end up back in the hospital... The only good is that we will bypass the ER this time...
I did call the hospital first thing this mornin and I filed a formal complaint. I don't think that nurse is qualified to be handling children.