This past weekend was our first opportunity to be together as a family of five. Since flu season has passed, they allowed us to bring Samantha and Joshua up to see Alli. Samantha came for her first visit on Friday afternoon. She spent some time with the child life specialist before coming in to see Alli. The child life specialists are people on staff to help explain procedures to patients and to help siblings understand what is happening to their family member. Samantha enjoys spending time with her.
Saturday I brought both children to the hospital. The nurses loved seeing Josh and Samantha occupied herself listening to people's hearts with a stethoscope and playing with Alli. They watched a couple of Wee Sing movies together. There were several endearing moments when Samantha would put her hand on Alli's arm or leg to comfort her. She did a great job and asks to come back often.
Unfortunately we missed a family wedding in Chicago over the weekend. A big congratulations to Rob and Liz. From what I understand it was a fun weekend! I was both happy and sad to see the pictures of my cousins and siblings together. Happy that they were together and having a wonderful time; sad that I was missing out on the fun. These opportunities are few and far between given that we all live in different states and are in various stages of building our families.
Today I am here with Alli. Right now she is resting comfortably with a warm weighted blanket. She has been having some extended periods of alertness and has been exploring with her hands quite a bit. We love to see her awake and moving around. The tests results from last week have all come back. We were hoping that one of them would yield something that could explain why she hasn't been able to handle her previous extubations and would be easily fixed. As I mentioned, her bronchoscopy revealed that her lungs were heavily reliant on the support provided by the ventilator to stay open. Her pH probe revealed that she has a mild amount of reflux that is within normal limits. Reflux can irritate the lungs and cause inflammation. We can rule this out as contributing to the problem based on the results of the study. Her MRI shows that she did suffer additional brain damage as a result of the subdural hematoma. I am meeting with her neurologist on Friday to better understand the findings from the MRI and the potential impact on her future development and seizure activity. The heart cath revealed that her function is actually better than what they thought. They didn't need to perform a balloon angioplasty or put in stents to open up any of the arteries. So, good news becomes bad news. Ordinarily we would be thrilled that all of these tests came back the way they did (with the exception of the MRI, of course), but all of these positive results mean that the problem is solely with her lungs and her strength to keep them open on her own. This week they are planning to extubate Alli again. The process of weaning has been slow and deliberate to give her the opportunity to strengthen her lungs as much as possible. The tube will likely come out toward the end of the week. Please pray that everything goes smoothly for her.
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