the first 24

There is an occurrence that is sometimes talked about in the medically complex parenting world... it is the first 24 hours after you come home from a hospital stay. (if you don't know what happened over the last two weeks I plan on writing about it all soon, short version, Jilli was rushed to the hospital after becoming unresponsive and spent a week in the hospital)

Its an occurrence that friends and I have talked about over coffee because it is one of those things that those of us who spend a lot of time in the hospital seem to experience...

The first 24 hours home from the hospital are HARD. Let me explain...

-The tired all hits. In the hospital you live on adrenaline but that little friend leaves once you are at home and the exhaustion hits you hard.
-A new routine. Jilli has never been on 24/7 pulse ox before. We did a one day pulse ox test when she was 2 that determined her need for oxygen but she has never needed her numbers to be watched closely at home. Typically we have only used the pulse ox when there is a problem but now we are learning life with it being attached to her. She also has never had night time oxygen before. We have a multi story house and the big concentrator in the living room does not reach upstairs so last night we had to figure out how to make oxygen work in both places. She is also now on 1lp which make the tanks last for a shorter amount of time. All of this is an adjustment and figuring out how to make it work.
-There is lots of stuff to put away. Two kids with medical needs mean we don't travel lightly. Our front entry right now is full of stuff we brought home that needs to get put away
-The mail!!! We came home to a past due notice from Lydia's PT because they didn't bill her second insurance. Jilli's Katie Beckett paperwork came (I got a call to set up the home visit while we were at rmh) so that needs to be filled out asap. There was things I needed to sign and mail back from the ambulance ride. A letter from the insurance company saying they are not paying anymore for the IV pole but yet VNA billed them AGAIN! We got a bill today from the medical college that they didn't bill any of Lydia's stuff to the secondary insurance so I spent a while on the phone with them and then they informed me that insurance came back and said they are not paying for part of the g tube placement surgery she had in September so now that needs to be figured out. We did have some happy mail but most of it was frustrating.
-Food. We were gone long enough the milk spoiled and the bread molded. We have had to throw out many things today as we find them and I still need to go through the fridge. Later I need to run to the store to get the basics.
-Appointments. Today Jilli had PT and a pediatrician appointment. PT was hard on my heart as we talked about new goals. In many ways right now from a gross motor standpoint Lydia is more indipendant then Jilli right now. I can set Lydia in her play area and let her explore herself where that is not a safe option with Jilli right now, someone always needs to be in the room with her. We talked about safety in PT today. The OT also came out and looked at her for a minute. We are doing an OT eval on Monday and then starting therapy. Her ped sent a referral to ENT after the results of audiology Monday. She also said to stop the antibiotics on Friday since she never had any sign of infection and she is pooping that is coming out as waterfalls (like down our couch). She said because an antibiotic was started she needs to be on if for a full 7 days but to not have her on it the full 2 weeks like was first prescribed in the hospital.
-New med routine. Several meds changed while in the hospital so it is getting use to new times and doses. 
-We changed Lydia's tube from a 16fr to a 14fr yesterday (thats why we were able to switch from the mic key to the AMT) but until the hole get smaller there is stomach acid leaking out around the tube.
-Jilli's PT has been working on pushing the wheelchair company to get their butts moving on this since now she needs a wheelchair even more... she got a bit of a run around and when she talked to someone today they said the letter of medical necessity that the first guy we met with in February was suppose to write still has not been written!!!!!! If I was not so exhausted from everything else I would probably be loosing it about this today... they have until the end of the week or we find a new company to work with. It sounds like that will likely involve driving a few hours from home but we have to do something. Ordering a wheelchair should not be this hard!
-checking on insurance stuff. We are still waiting to see if they will pay for one of her her meds
-There is also all of the other things that just don't happen while in the hospital. I had an article to edit for Complex Child. I need to work on stuff for Disney because we leave in a couple of weeks. Laundry to be done.

In time it will all get done. I am trying hard to be kind to myself today and take it slow. Only do what has to be done at the moment (like poop cleaning and medical needs) and slowly work on other things. My back is killing me so I am trying to rest to so I don't make that worse.  Slowly we will get into our new normal. We just keep chugging along, but while we do that know that we are running a little slower around here right now and anything that is not a have to is getting pushed to the side for a while. Most of the month of May is already booked between dr, therapies and Disney. We will do what we can as we can and I hope the world understands.

But I would also like to take a second to thank the many many people who have been so kind to us during all of this. The facebook notes, texts, phone calls, gifts that made my kids smile, prayers, kind words, visitors, and people who have gone out of their way to help... THANK YOU!!! Thank you for your love and support. I get overwhelmed just thinking about it!!!!!