Day 2 & 3
If there is one thing that I would never wish on a new parent it is to watch your child on a ventilator. Ruthie just laid there with a tube down her throat and let the machine breathe for her. A feeding tube was in her nose to provide nutrition. My entire role as a new mother seemed null and void. What does a new mom do? Feeds her child, holds her child, changes her diaper. I could do none of that. I could just sit there and pump breastmilk. I dont remember, but my sister says that I would call her in the middle of the night and just recite to her what the monitor stats were. There are two colors on a ventilator monitor. One color shows that the patient took the breath themselves, the other color shows that the machine took the breath for them. I would call and just tell Katie, "Machine, machine, machine, machine, machine, Ruthie, machine, machine, machine, machine,machine, Ruthie, Ruthie, machine, machine...." There was nothing else I could do.
Maddie was down the hall, and Mark stayed with her. She also had a feeding tube, but luckily was not on a ventilator. It took them 3 tries to get her feeding tube placed properly. They would insert it, take her to XRAY to see if it was correct, pull it out and repeat the process. Third time was a charm. She started having a really difficult time regulating her body temperature, which was concerning to them. Since she didnt seem to be progressing like Ruthie, they decided to attempt the spinal tap. They did not get enough spinal fluid from Ruthie's original spinal tap, so they had to get her another one.
The girls were both set up with hour long EEG studies to check out any seizure activities. Maddie passed hers with no seizures, but she was also still on anti-seizure medication. Ruthie's EEG showed that she was having multiple seizures, most of which we couldn't see any physical symptoms of, despite also being anti-seizure medication. They scheduled Ruthie to have an MRI.
Being actually admitted into the hospital also brought along all of the "teams" of doctors, all with different specialties. Since Vanderbilt is a teaching hospital, each team can have any where from 5 to 10 doctors in your tiny little room at a time. We were introduced to their Infectious Disease Team (They had to rule out any types of infectious disease that could have caused fevers. They were also put on quarantine to be safe. Funny story about the time my mom came into the room in head to toe scrubs including a face mask), their neurology team (for the seizures), their endocrinology team (they found low thyroid hormone in one of the blood draws in both of the girls), a respiratory team for Ruthie, and a cardiology team for Maddie and her pre-existing congenital heart defect. More teams were added later. As a side note, these "teams" show up whenever their particular rounds are. So, it can be 2 AM and you wake up to 10 people in your room asking you questions. It can be 7 PM when they decide to show up. Not to mention with so many "teams" coming and going, you just kind of lose track of who is who. Each team requests that you repeat the story to them of how you ended up there. I seriously considered just typing it out to hand to them.
Because you have no idea when doctors are coming, if you are not in the room when they come, you miss your chance to talk to them, get updated or ask them questions. Not to mention Mark and I are trying to cover two different rooms, since our children couldnt be together due to the "infectious disease" concerns. We were so blessed to have family and church family that came to help. You could only have 2 people per room, so we were allowed a total of 4 people back there. Ladies from church would come and just sit in the rooms with the girls so we could go and shower, or go home for a few minutes, or go get something to eat. That way if some doctors came by, there was someone there to get an update. Those people that would sit with the girls were such a blessing to us. For an hour or so, we could get away and get out of the hospital and try to have a little bit of normal.
We still had no answers. They would come in as each test ruled out something it WASNT. It seemed like they were taking blood draws from the girls every time they came in the room. I am surprised the girls had any blood left.
On Tuesday they tried to start weening Ruthie off of her ventilator. They tried to put her on a CPAP, but she would only make it for about an hour before she had to be put back on a ventilator. They tried several of these tests throughout the day. By the end of the day she was only going 20 minutes before having to be put back on the machine. When I went to sleep that night they told me they were going to let her rest and do another test at 4 AM to try to ween her off again.
Maddie was moved out of PICU and into a regular room on the 7th floor. That meant Mark and I were swapping between the 5th floor PICU and the 7th floor main room. Whenever doctors would show up, we would call each other for the other to come up or down.
These three days were actually the quiet before the storm.
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