We had a chance to go home today but the hospice care is not going to be set up until tomorrow.
Yes, hospice care. We had several conversation with doctors and Palliative care team at the hospital and everyone seems to think it is the best option for Jagger. Now, hospice care for children works a little differently that with adults. For adults, it means that they have less than 6 months to live, for children, it just mean it is a terminal disease but there is no "timeline" for say.
The key is to try to avoid the hospital from now on (especially during flu season), since Jagger immunize system is so weak we need to try to stay home as much as possible. And Hospice care will help with that, as the nurse will be able to come every days if needed/ Since he has the port, the nurse will be able to start the IV very easily and Annett and I will be able to start the IV fluid as needed when his port is access.
We met the Hospice Atlanta nurse, Nurse D. She seems very nice and has a lot of experience with terminally ill kids and special needs kids.
M. (Genetic Nurse) also stopped by tonight, she is great, she stayed until 8.30 pm to make sure we had the answers to all our questions. We discussed the DNA sequencing and what will the results mean, what to expect with Jagger and a lot more. She is not able to give us an exact prognosis on Jagger since this disease affect each person so differently, depending on the exact gene mutation (this is why in part we doing DNA sequencing). However, over 95% of child with Leigh or Leigh like do not make it to their 5th birthday, so either way you look at it, it is not good:(
She also said that the diagnosis of Leigh like was pretty certain based on the MRI and the muscle biopsy finding, it is a certitude he has Leigh.
She warned us that our life is going to be a roller coaster with good and bad days but eventually the bad days we outnumbered the good days. She also said that the next few weeks will be critical, as it will take logner for Jagger to get back to "baseline" we need to make sure he does not get sick or he will have a very hard time get over it.
So we decided to cancel Annett's parents and sister (with 3 kids under 8) trip to Atlanta for the Holidays. It is better not to have 3 young child that just spend 10 hours in a plane come to visit us. we do not want to take any chances. We also cancel Jagger appointments to Ped, PT, OT, ST, etc. Hospice care will take care of his immediate needs, Baby can;t wait comes to the house once a week for PT and for the rest we will see how he is after flu season.
So we started packing and if all goes right tonight, we should be home tomorrow mid day, after 3 weeks!!