6:19 am-Please Pray: Her sodium rose to 151. Her fever is now 102.8. They put her back on the Vasso Pressin hormone at around midnight and we watched it do it a quick turn around. Too quick, because we are now down to 142, a 5 point descent since last hour. These fast descents are what have caused her last two seizures. They just ordered the Vasso Pressin stopped completely in hopes it will stop descending. The frustrating thing, is that I wanted to start increasing her fluids about an hour and a half earlier than they let us in hopes of slowing down the sodium rise to begin with, hoping we could prevent the use of Vasso Pressin altogether. I asked several times if we could do that, they said no. Then an hour later we were in crisis, starting back on Vasso Pressin to hurry up and get the number down. Then I called the NP in and asked if we could stop the Vasso Pressin since her numbers dropped 2 and 3 points per hour right away. She said no. Now we are in crisis, stopping the VP so she won’t swing down anymore so rapidly and be thrown into seizure. They asked me if I was a nurse because I knew the name of all of her medications and gave my input about what I thought needed to happen. It surprised me that they would not expect me to know the details of her case after being in the ICU with her for ten days. It does not help that we had an all new-to-us team of people tonight that had not seen Phoebe and were pretty unfamiliar with the moment by moment flux of her situation.
Phoebe has been hallucinating and is taxed by the fast flux in her sodium numbers. Her little body is just trying to keep up with it all. I really feel like it could have been managed with water only, had they let me give it to her earlier on to dilute the salt..but I know I can’t spend time being resentful. Phoebe just really needs your prayers this morning. Please pray for the Vasso Pressin to wear off quickly, for her sodium number to stay in a healthy range and not drop so quick as to throw her into a seizure. Thank you for standing with us.
6:45 am-145: Now at 145 after stopping the Vasso Pressin. This is THE number we would love to camp out on, so we want it STAY PUT! The NP just answered all of my questions very patiently and I appreciate that. Being the Mama is tough in these moments because my instinct tells me one thing, and their charts tell them another, and we have to meet somewhere in the middle. Praying for 145 to stick around for a while.
8:30 am-Sometimes, Momma Just Knows: The neurosurgeon just stopped by to visit and then met with the ICU team outside our door where I heard him reprimand them for putting her on the Vasso Pressin too soon and tell them that it should have been controlled with fluids instead. I won’t lie, it did feel nice to know that I was correct in my estimations. I talked with the new NP after that discussion and told him my frustrations with our situation last night and he assured me that he would get to know her case very well. So, the latest sodium level was 147 and I am giving her water in small increments to hopefully stabilize her. The neurosurgeon also said we could wash her hair! This is exciting, because Phoebe has the worst case of “bad hair day” you have ever seen. Her hair looks more like a nest. Keep praying for SODIUM STABILITY! Thank you!
12:24 pm-So Far So Good!: I am very pleased with how things are going today. They are allowing Phoebe to have any fluids and food she desires, so I am balancing out the salty vs. water dense foods and alternating between Gatorade and water. Her latest sodium level is 141, so she is moving up and down in the 140’s and doing great. She is alert, content, and even took a nap with Aimee Krol (my dear friend) for about 30 minutes.
If she continues on like this, it means that her body is finally regulating the sodium on it’s own and that we will most likely go home with a simple dietary plan rather than 2ce a day shots for Phoebe. I am feeling so hopeful with her progress today and praying this is IT! But then there is the part of me that knows better than to think we’ve solved all the issues. One hurdle at a time like Dr. Weprin said. That is what we will do. Today is it sodium, tomorrow it will be receiving the pathology report.
Today my good friends Aimee and Stephanie, and my mother in law will be with Phoebe for a couple of hours so Nathan and I can go to lunch. It seems we have hardly seen each other the last 11 days because we are trading shifts with our kids and often with other visitors. We have had people we have never even met, stopping by just to offer their support and that has been so neat. We have met many of your friends and family members who have just popped in and that has been so encouraging. Thank you all for sharing Phoebe’s story with your friends and loved ones. It amazes me to look at that visitor # at the top of this page each day.Praying for a good rest of the day and that those sodium levels will stay right where they are!
10:02 pm-Pathology: She has cancer. An aggressive cancerous tumor called AT/RT. It is very rare and there is a 50% survival rate with an 18 month long chemo regimen. They will do a minor surgery to put in a port for her to receive chemo treatments through before we leave the hospital and then she will have 12 very hard weeks of hard-hitting chemo. He warned us to be prepared. We just got this news tonight. The Oncology team will meet with us tomorrow to explain the details. We were not expecting this. At all. I will have more thoughts, and words to share with you all once this has sunk in. Right now I feel numb, and exhausted, and like I am living in a strange dream that is not my own life. Please pray for our sweet girl…and our dear boys as we look at what the next several months of our lives together will look like. One moment at a time..hanging on to Him.