Matt, Kate, Ethan, and I have been together now more or less since Wednesday night. We ended up going to the hospital on Friday morning, Saturday morning, this afternoon, and I plan on taking the kids there tomorrow after Kate's preschool. Matt may stop by sometime during the day tomorrow. What were we thinking when we thought we'd be able to stay away from Anna for days at a time? No matter where we are, she has not been out of our minds or hearts.
We were able to do some "family" things this weekend which involved all four of us riding in the van. That was nice. We were able to eat some meals around our own table with all four of us. That was also nice. We have been able to sleep in our own beds for several nights in a row. That has been nice. However, just because you're sleeping in your own bed doesn't necessarily mean that you're sleeping well. I think maybe it's just hard to sleep well when your child is on a ventilator in the PICU of a children's hospital battling brain cancer.
Speaking of which, Anna is doing as well as can be expected. She is still very safe and relatively comfortable. She doesn't like the tube down her throat, though. But who would? On Saturday evening she started being more and more awake and alert, despite the sedation medication. This is probably due to the fact that a person's body becomes tolerant to different medicines after they have been used for long periods of time. So she was switched to a different sedation medication. That seemed to work for a little while, but they may need to switch her again before Tuesday morning. Additionally, Anna started developing a fever this afternoon. She began a dose of antibiotics and fever reducers right away, but it's just another thing for us to worry about. Plus, she got her first blood transfusion today. We were told this would be coming, but it's yet another thing you're never prepared for as a parent.
Tuesday will be the big day. At that point she will have received her five doses of radiation and chemotherapy and the doctors hope to have some clear indicators of how the cancer is reacting. We're not completely clear on the whole plan yet (it will all be finalized tomorrow during the work day), but after her radiation in the morning, we assume she will be weaned off of the ventilator and, hopefully, extubated. She will also be "awakened" (meaning no more sedation medication) and then we will all just wait and see how she does. Matt and I plan on being at the hospital all day.
On a different note, many people have mentioned to us lately how they appreciate the updates and information on this blog. That's good. Practically speaking, it's easier for us to just have to say things one time, instead of over and over again. We want to be clear, however, that by the time we sit down to write anything, we have usually had a lot of time to process the information. We have had the opportunity to cry, yell, stomp our feet, yell some more, and cry some more. When most of those things are out of our systems (at least for a little while), then we sit down to update everyone else. Besides, I know I've told a few people, but now everyone else can hear it, too. Most of the time, I don't think much about what I'm writing. Especially at the beginning of this journey, I know that God was guiding my hand. Now it's probably therapeutic for me as well.
Time for prayers
Thanksgiving
Please give thanks that we have been able to have a brief break from sleeping at the hospital.
Please thank God that Anna has been able to have three of the best PICU nurses since her time back on the unit.
Please thank God that Matt, Kate, Ethan, and I were able to visit Anna several times this weekend.
Please give thanks for the relative rest that we've had here at home.
Please give thanks that Anna is safe and relatively comfortable.
Requests
Please pray that Anna's fever is nothing serious.
Please pray that the doctors and nurses are able to find that sedation "sweet spot" again so that Anna can be safe and comfortable.
Please pray that the radiation works in a rare way on Anna's rare experience with a rare form of brain cancer.
Please pray for Kate; she's having a harder and harder time, understandably. Please ask God to give us the words and wisdom to help Kate through this journey.
Please pray for Matt and I, for strength and wisdom in the week to come.
Thank you again for all of your support and prayers.
Subscribe to:
Post Comments (Atom)
4 comments:
Even though we all knew you had to express your emotions, it was comforting to see it in print. Thank you for that.
"In Thy Light we see light." Valpo chapel motto.
Thank you so much for allowing us to hear your heart through your blog! My thoughts and prayers are with your family and especially for Anna!
Please give Anna my love!
Yesterday at church our offering meditation struck a chord with me as I was praying for and thinking of your family. "We don't know what will happen in twenty years, or, for that matter next week. We pray for, hope for, and expect good things. We ask for strength and faith needed to face bad things. Whatever happens in our futures, we know that our eternal future is with God in light and life everlasting. We continue to pray for Anna and will certainly do so tomorrow.
Post a Comment