Rough and frustrating day.
This morning after we arrived to the hospital we were told we needed to leave the NICU while the neurosurgeon tapped Olive's head. Midway through the procedure the neonatologist came out to tell us that the neurosurgeon had changed his mind and decided to put in a temporary drain that would stay in for seven days. She told us the procedure was almost finished, and we started asking many questions. For one, why was he doing a different procedure than he had discussed with us yesterday without talking to us first? Especially because we had talked with him yesterday about our concerns with placing a temporary drain when Olive still has lingering signs of her infection (her WBC count and protein aren't yet back to normal since her meningitis). We were told by a neonatologist we trust from the States that this is not an ideal procedure given her current labs.
After he finished the procedure he came and talked to us. He said that the research shows the same rate of infection between intermittent tapping and a temporary drain...not what we have heard from other sources.
Throughout the day Olive's oxygen level wasn't as well as normal so they decided to increase her oxygen. She also had an increased heart rate with no signs of infection so they thought she was having pain from the procedure...things that didn't happen with the drain the last three times.
The doctors and nurses told me they would like to keep her in the incubator for the afternoon so that she could rest. I was feeling pretty frustrated as to why she couldn't rest in my arms so I asked the head doctor again and she said it would be ok to hold her. After holding her her oxygen saturation went up on its own and we could take her off of the oxygen they were giving her.
They had put tape all over her head to keep this drain in place and some of it was coming off and I could see the catheter from the drain was starting to come out. The neurosurgeon had tried to secure it with the nipple off a bottle and that was filled with moisture from Olive sweating. Warm and moist...a perfect breeding ground for bacteria.
So I showed the doctor that the catheter was coming out and pointed out the moisture. All the residents came over to look and after calling the neurosurgeon they decided to remove the drain later tonight to prevent infection. They decided to take out an additional 20 ml before removing it. In the morning they had only removed 5 ml...which I am still confused at why they would remove such a little amount.
The resident came to remove the drain. After the resident started draining the fluid, we noticed the tape on her head getting wet...not a good sign. By the time everything was finished and we were cleaning up the tech came to test the CSF fluid and pointed out that there were 53 ml of fluid in the container. That means that instead of draining the 20 ml of fluid as planned, somehow she didn't notice it continuing to drain and she ended up draining about 48 ml of fluid in a two minute period.
Earlier today they told me the max they can drain is 10 ml/kg every four hours. That would mean 17 ml of fluid every four hours. Clearly you can see this wasn't ideal. The doctor tried to play it cool and I was nervously looking at Olive. Her fontanel was extremely sunk in after everything was over. The resident then told the neonatologist what had happened and the neurosurgeon. They said the biggest things they worry about it dehydration, low blood pressure, and electrolyte imbalances. I have also been told before that they cannot remove the fluid too quickly or it can have serious implications on the brain.
I didn't want to put Olive back in her isolette tonight.
Then one of the younger nurses came over and said in Thai, "Mother, you can hold her for ten more minutes and then you need to go home so that we nurses can work." So the nurses can work? Am I really bothering you that much by sitting here and holding Olive as she sleeps in my arms? Ten minutes later she returned to give me a lecture about visiting Olive too much and getting in the nurses way. I told her that I didn't understand, because the head nurse gave us the ok to visit her outside of the normal visiting hours. I said that it didn't seem to bother anyone but her. She said it would be better if we came less like the other parents and that our daughter's situation is better than the other babies in the room.
I wanted to tell her that I didn't want to be here. That Olive was supposed to go back to the States last week, but she got meningitis from her drain and couldn't leave. I wanted to tell her that in the NICU in America that the parents can visit 24 hours and research proves the benefits of it.
Let's just say that by the end of our conversation I was in tears and walking home.
Who knows what tomorrow will bring...but I am praying lots of prayers that Olive will be o.k. tonight despite the circumstances of today.
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