Thursday, November 6, 2014

Ready for Home

Elizabeth has continued to make progress. She is still on 1-2 liters of oxygen to maintain her levels, but thats been normal for her when she gets sick. She finished her last dose of IV antibiotics today and also weaned off the methadone and ativan. So now her biggest issue is that her anti-rejection medication levels are low, one is so low its almost as though her body is not absorbing it. Her med doses have been changed multiple times throughout the past week to try and get her levels back in check. Before this illness she had pretty much maintained her levels with no real changes to the doses. Of course, this is really concerning to us and the doctors. She is also having to take magnesium supplements due to her levels being low. So for now the plan is to be released tomorrow, knowing that she will have to continue having labwork done when we get home, possibly multiple times a week until her levels are back to normal. And returning back here in a few weeks for a follow up and then more frequently until we kind of know what kind of damage, if any, this major illness has caused. She will be checked again for signs of rejection when we come back and I am praying for only good reports.

The past few weeks have been hard, after being home and "normal" for 3 1/2 years except for a two short hospital visit.  I honestly question how we made it through those long months in the hospital before/after transplant. Elizabeth absolutely hates the hospital! She refuses to talk to anyone or participate in any of the therapy services that have stopped by.  I actually feel kind of bad for how much she ignores them. But with all she has been through, she just wants to go home. She hasn't talked very much and hasn't stood up or walked much. She is still pretty weak from being so sick, so we know it will take some time for her to recover.  We are hoping being back home and getting back to her normal routine will really help her with getting back on track.

Monday, November 3, 2014

Making Progress

Elizabeth is doing SO much better! She was able to wean off of the ventilator on Friday! She was put on 12L of high flow oxygen and since Friday has been able to wean down to 2L of oxygen via regular nasal cannula. So during the course of last week on top of germs in her lungs another culture came back for pseudomonas from the bronchoscopy that they did here. So she is now getting IV antibiotics, inhaled antibiotics and a vest treatment to loosen up all the gunk in her lungs. On Friday she was very tried and weak and slept alot after they removed the breathing tube and ventilator. She has started watching her movies on the Ipad, smiling and has said a few words. She is also weaning off of the sedation and getting ativan and methadone to help with that. Her little voice is pretty raspy from the tube being in there,  so she hasn't said a whole lot yet. She was able to start sitting up on her own today and moving around some. She did try to walk earlier to Matt and it was SO sweet. She is still pretty weak and it will take a bit for her to get over this. We are beyond thankful she was able to fight this and is recovering. The plan for now is to hopefully be moved from PICU tomorrow to a regular hospital room, finish out the IV antibiotics this week and possibly be discharged home on Friday if she continue to do well and doesn't need more oxygen. We will have to come back in December for the evaluation and testing that was originally scheduled for this week. Her next appts will include a appointment with ENT here to get a second opinion on her airway, and hopefully some good news options for fixing it.  And we will also meet the new cardiologist and get a check on the aortic root dilation. After her checkup in December we will most likely come back more often for a while to be sure that this illness hasn't stirred up possible rejection. Rejection is a big fear for us, and we pray that this illness was just that a bump in the road for her amazing gift of lungs will be undamaged and continue to provide her with MANY more years!

This was one of the scariest times since transplant for us. Its so easy to get caught up in the everyday things when she is well. This was just another reminder to all of us just how quickly things can change, and why we need to make the most of each day we have with her. Just like all of us need to remember its not the quantity of life that matters but the quality. Things like money, houses, cars, and what you have really don't matter at the end of the day. This amazing little girl, her sister, Matt and our family/friends are the important things in my life. I really hope that anyone who knows Elizabeth, or any of our transplant friends, learn from these amazing kids to appreciate all you have in life and know how quickly it can all change!