Bumps in the road

Now that we are in the recovery stage, visits from friends and family have become extremely helpful in motivating her to get up and move around. I can't figure out why, but living with just your mom for four months is not every teenage girl's dream! During the week we keep ourselves busy with appointments at the hospital and excursions around town. When the weekends come, we tend to be more homebodies as she still needs to be extra cautious around crowds with her compromised immune system. After a visit from her uncle/godfather one weekend, last weekend a couple of friends made the 8 hour trip down for 2 days full of laughter, the zoo, pizza, games and more laughter. We walked the zoo for over 2 hours, 2 days in a row, and she kept up the entire time, with only a few breaks here and there. Her appetite continues to improve and we have decreased her nighttime feedings to only 3x per week. Eliminating the feedings I believe has also helped to stabilize her blood sugars more. She is learning the names and doses of her 20+ daily meds, swallowing over 55+ pills and giving 8 insulin injections daily. Her lung function is stable between 55-65%, and may or may not improve only time will tell. However, even 55% is night and day compared to the 25% she was at. This past week she needed to have her blood drawn five days in a row, versus the typical 2x a week. One of the levels they closely monitor fluctuated from low (beginning sign of rejection) to high (signs of possible kidney failure), both of which are critical. Ensuring that she drinks at least 2 liters a day is essential, and even that almost wasn't enough as she barely avoided needing to be admitting for IV fluids this weekend. Please say some extra prayers as this is a big week for us. Monday she will have a few scans done to determine if her blood flow improved from surgery when only 30% of the blood was flowing through the left side versus 50%. If the same they will need to do a cath procedure where they go in with a camera and look at where they connected the new lungs to see if there is a blockage or narrowing. If there is a balloon will be used to open the airway and a 'stint' placed to keep it open. If needed this procedure will take place on Tuesday while she is in the operation room getting her 2 month bronchoscopy done. At that time they will also be putting an NG tube down her nose into her stomach. The tube will help monitor the amount of acid reflux that is happening. This is a standard procedure at the 2 month bronch. She does suffer from acid reflux, and the results could mean another surgery for her (insert prayer here). Some days still seem so overwhelming, especially when her numbers are all over the place, but I am reminded that these bumps in the road mean we actually have a road to be traveling on and for that I will be forever greatful.


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