Dear Family and Friends,
Julia is scheduled to come home today. It was determined that Julia had a viral pneumonia (lung infection) that was coming on when she was readmitted to the hospital. The day after she was admitted she developed a fever and her x-rays showed that she indeed had some infection brewing in her lungs. She has been fever-free for several days now and her lungs are looking better. This, however, does not mean in any way that she is “better.” It is our desire for her to have some time at home before she gets really sick and has to go back to the hospital for her final days (we really don’t want her to die at home.) We are feeling grateful that we may get some of this time with her. The night she was admitted, she did not look good and the doctors were uncertain how she would even do over night. She is such a fighter!!! She is small but mighty! (I wish I could include an audio recording of her loud cry! You can hear it at the other end of the CVICU unit!) It is very difficult to know how much time we have with her. That is the challenge of working with babies and kids. They can be so unpredictable. Their bodies are in the process of growing and not breaking down like adults. So children can beat the odds in ways that can baffle the doctors and us. The hard part for me is knowing how to pace myself. I feel like I am running a sprint with the chance that it could turn into a marathon at any point. And because it could be sprint and not a marathon, I do not want to ease up on my pacing so that I don’t lose the race (and miss out on time with Julia)… but then again, I can’t sustain at a sprinter’s pace if I indeed will be running much longer than I expected. It is emotionally exhausting. I think having her home will be good… but I am also scared, too. The hospital is a controlled environment with droves of experts surrounding Julia all day watching her every minute. We will not be going home without support, however. I can call the hospital at ANY time day or night and get a hold of a cardiologist on call. And we will also be signing up with a hospice care organization starting on Monday. Julia will be fed continuously with the pump like before and will most likely need oxygen support when she is home. The doctors here at Lucile Packard have been beyond wonderful. They have been so supportive of giving her the best medical care they can in combination with finding a plan that works best with our family in mind. They have involved us in their thought processes. They have been there to hug and cry with us. I feel like I have made meaningful connections with several of the doctors here. They love Julia. I have been so thankful for that.
I will keep you all posted as I can and as I have more to share. Until then, please check the blog because I will be posting there more often than sending out email updates. I have been trying to take lots of pictures and post them.
Thank you for continuing to walk with us and pray with us. I have been so surprised by the peace I have in my heart. It is certainly a peace that is beyond my understanding and can only be from God because you all have been praying. Please don’t stop. Please pray that Julia can be comfortable and peaceful. She is still working hard to breathe and can get very agitated from time to time which is really hard to watch. We will have medications to give her to help her stay comfortable as well. Please pray that we will get some quality time with Julia at home, especially for Mattie.
Much love to you all,
Val, Bob, Mattie, and Julia.
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