She also had a visit from OT (occupational therapy). She got her up and in the bathroom. She had Harlie wash her own face. And Harlie did not like that at all.
I really think she did too much yesterday. Because after PT and OT left she fell fast asleep. And she's just not herself. Yesterday we could see HER. Today, she's been much more quiet and just tired. And she has not wanted to talk again. So, no PMV today.
They gave her Ketamine and did her dressing change around noon, I think. I changed her trach ties and dressing there, and that looks way better. So, that's good.
But, we realized today that her pressure sore is really causing her a lot of pain. She was so uncomfortable when she was in the chair this morning. And she did not want to get out of bed today. In bed, she can lay on her side and take that pressure off her sore. It really is awful.
She's also been coughing a lot less this afternoon. So, either she's too tired to cough, or she's actually making some progress clearing out her lungs. I'm hoping it's the latter, obviously.
So, while today has been fairly uneventful compared to yesterday, there is some good news...
We discussed discharge plans!!! YES!! We can see the light!
Maureen (the case manager who helps coordinate all of that stuff) worked really hard to get everything in order considering it is a holiday weekend. This is a summary of what needs to happen:
1. Scripts need to be written for all necessary equipment and supplies. Some equipment has to go to our house for our use there, and some need to come here so that I have it to get her home (like a suction machine, suction catheters, HMEs, etc.). The hospital will not discharge us if we don't have them with us.
2. Order needs to get to Pediatric Connection, and they need to put it all together and deliver some to our house, and ship stuff here.
3. Dr. Haas is coming to assess her abdomen wound on Sunday. So, it all depends on how that wound is looking. We should be able to be discharged as soon as he says no more packing is necessary. So, I'm thinking that discharge could be Monday or Tuesday. But, if she needs more time, than that is fine. I do not want to rush her out before she's ready.
4. Keep in mind that Monday is a holiday.
Unfortunately, she couldn't get the necessary scripts to Pediatric Connection (our nursing, equipment and supplies company) in time for them to get what we needed to UPS to ship out today. So they said it couldn't ship till Tuesday! You can see how that impacts discharge.
But, Tom is coming tomorrow. Pediatric Connection is not far from the house. So I asked her if they could deliver it to out house for Tom to bring to me. And they said yes! Keep in mind that it was 4pm on the Friday before a three day weekend and they were going to get them to us tonight! Maureen put us on speaker and Paige (from Pediatric Connection) said they were so excited that she gets to come home soon and that they were going to do everything they could to help. I swear I teared up hearing that. More people on our team, helping us live our lives to the fullest. Love Pediatric Connection!
After we hung up, Maureen said that was amazing. She said she has never dealt with a company like that. Locally owned companies are the best. And the owners and staff there have been so supportive of Harlie and us.
So, Tom is going to bring me what we need. And then whenever she is discharged we will figure out the logistics of getting home. So, those details will work themselves out in a few days.
Also, we had a visit from Dr. Vinson, who is the anesthesiologist who tried to intubate her on the night of August 10th (when she had to be re-trached). Needless to say, I love this woman. She is the one I spoke to late that night, and she explained everything that happened in the OR.
There is so much I want to write about our conversation, but it is too much for this post. Just know that a special post will be coming in the next week or so. Stay tuned.
Okay, it is late and Kristie and I have to leave to get dinner soon. Thank you, as always for all your support!!