More updates from Lynette over the last week on little Olive...
Get us out of here!
Get us out of here!
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. great.
So I showed the doctor that the catheter was coming out and pointed out the moisture. All the residents came over to look (7 of them) 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, and Olive screamed through the whole thing as her hair was being pulled out by the crazy amount of tape they had put on her head. 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. The doctors went home and lots of new residents came on shift...who are usually confused and learning things for the first time. The nurses that were on tonight were also not the best ones of the group. Both things leaving me nervous.
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 anytime we wanted. 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 anytime 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. It took everything in me not to tell her what I really thought of her. Probably for the best.
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.
another day...
Olive did well overnight last night. Today after arriving at the hospital the head nurse asked us to talk to her in her office. She said she that last night she heard about last night's incidence with the nurse being rude and wanted to apologize. Apparently this isn't the first time this nurse has been aggressive with parents in the NICU, as well as other nurses on staff. She told me that she communicated with all the nurses that we are able to visit from 8 am to 8 pm, and that the nurse will be written up for her impolite behavior.
Around noon our doctor from the private hospital came to visit along with the two nurses who were going to travel back to the States with us last week. They asked how things were going and when they found out about all of the issues we have had with trying to remove fluid from Olive's head they were unpleasantly surprised. They suggested we talk directly with the head neurosurgeon about these issues.
We originally moved Olive to this hospital because the doctors at the private hospital spoke very highly of the neurosurgeon here. However, he has been either out of the country for the last month or too busy to be involved in Olive's case and sends his team instead of coming himself. We are not willing for Olive to continue to be an experiment for the residents to learn on, especially with procedures that will may affect her brain and long-term outcome. Since arriving here we have had her first drain cause meningitis, two poorly done lumbar punctures where only 6 ml of fluid was removed, and another poorly placed drain with major mistakes made when removing it. Something MUST change if we are going to stay here.
All this to say, tomorrow we have a meeting set up with the head neurosurgeon to talk about what the plan will be to continue removing fluid from Olive's head, and to request him to be the one to do these procedures rather than passing them off to his students. If this meeting doesn't go well, we will consider moving her back to a private hospital, even though the cost is 10 times greater.
This evening after visiting hours ended, we went with one of the NICU nurses to see Christmas lights downtown Bangkok in celebration of the king of Thailand. We had a really nice evening out together.
Sleep is beckoning me...
Hoping for a change.
Yesterday we met with the neurosurgeon and his team. We shared all of our frustrations with Olives' care so far, and our concern with her remaining here without a better plan in place.
Before leaving after the meeting he tapped Olive's head and removed 20 ml of fluid.
Apparently our neonatologist had training in the States before, and she has agreed to do tapping every two days to remove fluid. This seems to be a good option, better than having residents without much experience doing it, or waiting for the neurosurgeons to come who are extremely busy.
Tomorrow the neonatologist is going to do another tap. Rusty and I have agreed to give this hospital another 3-4 days and see how things go after having our meeting with the neurosurgeon and see if things improve. They are saying that if the protein continues to decrease in her CSF (cerebral spinal fluid), and she reaches 2 kg (4.4 lbs) then they would go ahead with the VP shunt surgery.
If after a few days we are still not feeling comfortable with the care we will most likely move her back to the private hospital.
over and out.
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