home again

Mya's nurse nearly tumbled off the bus today. She was so excited to share what a great day they had and all about her laughs and smiles in the swing. I was happy to hear it went well. I was afraid that when I sent her back to school this morning she would just sleep through the day but she is doing great. I think she is faster to recover from her hospital stays that the rest of us.

It has taken a few days but we are slowly getting back to treating her like the kid and not the patient. I turned off her pulse-ox monitor yesterday and left it off overnight. She has been holding good numbers but after so many days of watching her drop her oxygen and need help to recover it is hard to let go of the security of the alarms. But we don't want to live with alarms and so we turn them off when she is doing well. We are working back up to full feeds during the day. I haven't weighed her since we got home but she is skin and bones so I fear we lost a few pounds inpatient. Putting weight back on this kid will be one of my top priorities over the coming months as we head into the real virus season. She really needs her strength up to fight off these viruses and being in a general education classroom with 12-14 kids this year will test her even that much more. We are trying really hard not to stress over the fact that she was so sick with 'just the cold virus'. We never know how she will respond to any cold but it is a little scary that this is really the first time she was sick with more than a sniffle since her last ICU stay and it landed her with such a long stay. We don't know if the timing was just a coincidence or if this will be the new norm. Up until this year we have done well staying out of the hospital for the most part but 26 days in the ICU for 2014 when it is only August sounds like a whole lot.

Mya is followed by the hospital's palliative care team and so I voiced my concerns while they were visiting last week. We decided to enroll her in a local pediatric palliative care home nursing program that focuses on keeping medically complex kids out of the hospital. If you aren't familiar with palliative care it is important to note that it is not a hospice program. The two are often lumped together and this program provides both kinds of support but palliative care alone is more of a focus on keeping a person out of the hospital and enjoying the best quality of life possible. We had our intake meeting today and I think it will be a good fit for Mya. Our nurse can step in and examine Mya in our home when she is starting to get sick and help us decide if she needs to be seen in the hospital or if we can wait it out at home. She works with our doctors directly in deciding course of treatment. In fact she told me to call her before I call them. She can come to the house and do blood work, order supplies for us from any one of our vendors and hook us up with any number of therapy services including expressive therapy for Ella and Clayton as they grow and start to question Mya's challenges. I think this will be a good resource for our family. If nothing else it is a little validation that what we are dealing with is a bit extreme and gives us someone to lean on when we need support.