Based on the title of today's post, I'm thinking you probably have in mind what today's focus will be...we are planning for discharge to home!
Austin had a good weekend! He had a couple higher outputs in his ostomy, but has been trending down the last couple days. The GI doctors are not concerned and have reminded us "he will have higher days".
Yesterday we started some "housekeeping" for discharge. Austin turned 2 months on Sunday and therefore needed his immunizations. They were able to give them to him last evening and other than a very low grade fever this afternoon and a little sleepier than usual, he has done well.
He also had 2 appointments scheduled for November here at Children's, one with genetics and one for an echocardiogram. I met with Rebecca from genetics yesterday for about an hour in regards to Austin's development. He's doing remarkably well for all he's been through and continues to meet typical growth and development milestones for babies with Down Syndrome. Little ones with Down Syndrome also have additional testing for hearing, vision and thyroid. Those will all be looked at again around 6 months of age. Austin will have his repeat echocardiogram on Thursday. They will be specifically looking for the current size of his ASD (atrial septal defect). He had an echo done on 9/24 after his septic shock so we were already aware that his VSD and his PDA were now unremarkable. We are hopeful his ASD has continued to diminish and we have no reason to believe this will require any further treatment. We will find out for sure on Thursday.
Now, the biggest task for going home is on Brian and I. We have to be able and feel comfortable taking care of Austin including all his medical needs. Last week we received incredible news that a very reputable home nursing company has availability for Austin starting mid-November! Austin qualifies for up to 16 hours of in home nursing per day. Brian and I met with them today and will initiate Austin's admission tomorrow with the help our our case manager here at Children's. I'm not going to bore you will the details, but Brian and I are beyond blessed by the help we will be receiving. In the interim, Brian and I will make sure all of Austin's needs are met with the "on call" nursing resources. This means we will initially be doing many of the tasks that eventually his nurse will be doing. We just keep telling ourselves, "we can do this"!
So, when is the day? We are planning for a Friday discharge. Please continue your thoughts and prayers as we transition from this amazing place to the comforts of our own home!
Love and hugs,
Tara and Brian
Max and Austin
You can do this!!Lots of popcorn prayers!! Think of you often!!!
ReplyDeleteYou've got this!! Just breathe and laugh often!! Your love for this adorable son of yours will help you to do your very best! You don't have to be perfect!!!! And you will be home and just a phone call away from your resources!!!
ReplyDeleteWow, you just navigated through a ton of medical procedures to this place where Austin is well and ready to go home. Going home is the goal you most wish to reach and sometimes also, the most daunting. You have been their the whole way and know what has to be done. Many praises to the three of you for your positivity and your competence. Loving that you get so much nursing support come November! What a major blessing! Home, sweet, home!
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