So on Thursday Molly continued to have problems with her blood gases which lead to lots of manual bagging and suctioning. Eventually it was clear she could not stay on the oscillator and the Docs had no choice but to move her onto a conventional vent. This was a huge step in the right direction but it was much earlier than planed, something that circumstances dictated and the doctors were not sure if her lungs were ready for. It would put her at high risk for a lung leak which would be fatal. By the grace of God and in true Molly fashion she surprised everyone by moving onto the vent at much lower pressures than anticipated and continued to improve her blood gases. Molly was also able to come off the paralitic that she had to be on while on the oscillator. So for the first time in ten days she was able to move her limbs and breath a bit on her own with the machine. This in itself has created a problem because Molly will often fight against the vent leading to much fine tuning of sedation meds. Friday was a pretty encouraging day we felt like we were on track to more stable ground but we realize at any moment things can change and do.
This morning Molly suffered from a bronchial spasm where her lungs contracted so tight air could not get in or out, she was once again manually bagged and given treatments to help relax the muscles. No one is sure what caused the episode, it could have been that she was to awake and panicked while breathing against the vent, it also could have been an allergic reaction to a drug as her face also swelled up to an uncomfortable noticeable state. Molly had a fever for the first time in days and that along with her blood work this morning also showed a big jump that would indicate infection so it could have been caused by another infectious process.
The idea that she may have another infection or that they removed something that was helping treat her current lung infection is a huge worry. Some of the drugs that were just removed are now back in place for extra coverage. Until today Molly’s blood work has been looking good with nearly everything in normal range so this feels like another obstacle to overcome. We feel like whenever we make progress something else arises, but the fact that Molly is on the conventional vent while just 12 days ago they could not even get her on it and we were blessed to be able to get her on the oscillator at that point, really is huge progress all be it slow and extremely stressful.
The other kids have been enjoying a YMCA camp that keeps them busy during the day and Sara is at the hospital with Molly usually colouring pictures in her room and keeping the volunteers busy when she can find them. The kids are very patient and understanding. They are very concern for Molly and are egaer for her to wake up. We continue to pray for Molly’s miracle, for her lungs to heal, for her to overcome this infection and for continued 100% donor 2 chimerisms. Thank you for your support for spreading the word and for your prayers. Go molly go!
