We're still here, as in the hospital. It has been a busy weekend of activities and chasing pain...ugh. Lucy's lipase doubled over the weekend making pain management even more challenging, not only because her pancreatitis worsen, but pain management over a weekend means you are at the mercy of the on call doctors. Long story short, Lucy is back on a PCA of dilaudid in addition to her fentanyl patch. I am going to take the high road and just say that it was not easy to come up with this plan, and I hope that our experiences can help make it better for others who are in a similar situation as ours, having a child who lives with chronic pain coupled with acute pain.
Lucy had a little breathing episode while sleeping that had us all scared on Friday afternoon. Her O2 sats fell into the low 80's and would not rebound even on five liters of O2. Fear and concern ensued, but after waking Lucy up and arousing her her numbers rebounded nicely and we were able to turn down her O2 to her usual one liter, just in time for Dr. R to come by and see our girl. Ever since Friday we have been watching Lucy's O2 sats like a hawk. She has had a few very brief episodes where she has gone into the 80's but rebounded on her own. In any case Vapotherm is on standby in the corner of her room, in the event that she needs it.
Lucy is scheduled to have surgery on Tuesday to place a suprapubic catheter in her bladder. This surgery is so necessary now, but of course we are concerned about the risk of anaesthesia again. Ideally we would have liked to combine this surgery with the surgery to remove her gallbladder, but we are not certain when the gallbladder surgery is going to happen and we can't wait another few weeks, this needed to happen yesterday.
I went from avoiding Christmas to embracing it this weekend. I had lunch with a friend on Friday who remind me that no matter where we are we need to embrace the holiday. Thanks for the reminder, I needed it! The kids and Lucy decorated a gingerbread house on Saturday to enter into the annual gingerbread house contest they have here at the hospital. It was fun to be able to do this as a family, all of the kids participated in the decorating. I think Sophie may have eaten more candy than she decorated with, she left here Saturday night with a tummy ache. We opted not to get fancy with our design, instead we went with the more is merrier idea and decorated our house with a mosaic design all made out of different candy. I looks awesome and smells so good, if I do say so myself. Thanks Heather for gathering all of the supplies and candy for us!
Drew and the kids brought us a real tiny Christmas tree that we have decorated with various homemade ornaments and ornaments that people have brought her while here at the hospital. It brings joy to not only us but to everyone who comes into our room. Our special friends Andy and Faye, Andy is one of the docs here at the hospital but not one of Lucy's docs, came and stayed with Lucy tonight for a few hours so that I could go home and decorate our tree at home with the kids. I have never gone home once while Lucy has been admitted to the hospital ever, now I know why. I cried the entire way home and the entire way back, tears of joy and sadness because I know that we need to celebrate the holiday no matter what the circumstances. It was so hard to leave Lucy tonight even though she was in very capable hands, and it was equally as difficult to leave the kids/home tonight and return back to to the hospital.
We had the honor of meeting the "real" Santa today, the one in the Macy's Thanksgiving Day Parade. At first we were not sure if we were going to be able to have Lucy see Santa as he was only going to the meet children in the child life center. Drew went down to assess the situation with the other three kids and came back to tell me with tears in his eyes that we HAD to take Lucy to see him, that he was the "real" deal. A little background, we have always wanted to take Lucy to see Santa at Christmas time but never have for a variety of reasons. Last year we attempted to take Lucy to see Santa at a local community event that was close to home, when we arrived Drew and I were appalled at how unrealistic looking this Santa was and knew that there was no way that we were going to be able to pass this guy off as the "real" Santa. I was a bit emotional and perhaps a little unrealistic myself over this, but I wanted to have the memory of my baby girl meeting Santa for the first time. We never had another opportunity for her to meet Santa last year so fast forward to this year. Drew and I were speechless when we saw Santa today, partly because if we attempted to say anything tears would have flooded from our eyes, and also because this Santa was the "real" deal! We saw all of our kiddos gaze at him with wide eyes, even our eleven year old. Jack noticed the tears in our eyes and latter on said, to us, "that really was the real Santa...huh mom!?!"