Playing with his tongue
Bella protecting Nicholas
Bella protecting Nicholas
More ER time
There is a toilet in the ER room
Huge crib in children's hospital
Nicholas had a pediatrician appointment yesterday. She said she is very pleased with his growth and development. He is 11 lb. 15oz and 21.25 inches long. It was really amazing to see how well he was doing at home. He has been very vocal and awake and is moving a lot more than when he was in the NICU. He also discovered his tongue and mouth. He likes to still his tongue out all the time and is starting to put his hands in his mouth. He does seem to favor his right side. That is probably because his brain bleed is effecting his left side. We are doing his physical therapy everyday and the special needs coordinator at the pediatrician's office is going to call her contact at Baby Net, the early intervention program, to get his at home therapy rolling.
His pediatrician noticed that his soft spot was bulging so she sent us to the children's hospital ER to have him looked at. That is when the circus began. We were in the ER for over 8 hours. They took x-rays and a CT of his head. Then we had to wait for the on call neurosurgeon to get out of surgery to read the films. He determined that his shunt was not working and called the pediatric neurosurgeon to schedule surgery for today. They tapped into the shunt and removed 30ml of fluid. That got his soft spot and the swelling on the tubing part back down. Then we had to wait forever for a bed at the children's hospital.
When we got up there it was horrible. The nurse didn't even seem to know what Hydrocephalus was and had to ask me like 5 times what ROP is. Nicholas isn't the first preemie to come in there so that just blew my mind. Then she said that his labs from the blood taken in the ER were really off and that he might have to go to the PICU. They decided to draw more blood and retest them. To do this they had to take him to an exam room across the hall. They disconnected his oxygen and then the tech fiddled around with blankets, while he was off oxygen, before she took him to the exam room. While they were in the exam room I heard someone yell for the tech to get a pulse ox. She didn't even know what it was. I pointed to it and she said "no, they want something else." Then someone came in and told me he had turned blue and they didn't have a working pulse ox, to see his blood oxygen saturation and heart rate, in the room. I was so pissed by this time and felt that I knew more than the staff.
Nicholas couldn't eat past midnight so I was going to feed him once more before then. The nurse told me not to feed him because of the vomiting. I asked what vomiting, did he vomit when they were taking blood. She said no, the vomit when you first came up here. That was spit up. I was feeding him in the ER, for the 3rd time, when we had to move upstairs so he wasn't burped. I really wonder what she calls actual vomit because what he did was nothing.
I hadn't pumped in like 10 hours so they did bring me a breast pump. While I was trying to pump they opened the door and I said I was pumping. Their response was well I need to get in there and didn't even give me time to cover up. They just needed to get more blood. Nicholas was so covered in gauze and tape when he came back he looked like he had been through a war. Then I tried pumping some more and got walked in on again so I gave up.
We have heard nothing but good things about our children's hospital so this was really upsetting. I felt like I wish I never brought him there but we have no where else to go. We also have to stay with him 24/7 because he is in a regular patient room and they aren't constantly watching him. We did complain to the nurse manager and charge nurse. We had a much better staff today.
He went into surgery this afternoon and it went really well. They neurosurgeon said he had already out grown his VA shunt. That is the problem when they have to put the tubing in the heart- there is no room for extra tubing for when they grow. He also decided to repair part of the mechanism in his brain just so we don't have to go through another revision any time soon. He was also able to put the tubing in his abdomen so he has a VP shunt now. This one should last a lot longer.
Nicholas is spending the night in the PICU. He is still on the ventilator and they want to wean him off of it slowly. His head has a bandage so we can't see that. He also has an inch long cut on his right side like midway between his nipple line and belly button. He is really sedated and on pain meds but should be off that tomorrow. They are estimating about 4 days in the hospital. The PICU is a lot better than the regular children's hospital. He is in his own room but the front is all windows and the nurses sit at the windows so they can see him. We are going to try to get some rest tonight before we have to camp out at the children's hospital for a few days. Please pray for a fast recovery for Nicholas.