Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Going Home With Agnes

on July 30, 2013

Here’s the moment we’ve all be waiting for…Agnes is finally at home! We spent the whole day at the hospital yesterday doing various discharge activities. We started by giving the photo of the first bottle Agnes finished to Dr. Ahmann. He seemed pleased to receive it and promised to keep it on his work station desk for a while. As a side note, Agnes hasn’t eaten another full bottle yet, but I think she is still getting used to being home.

Jeremy and I also took a little infant CPR course at the hospital. I’m really glad we did because of Agnes’ respiratory issues. Part of the course was about how to deal with a choking infant too, which is actually applicable to Stephen so the class was really valuable! One of the more useful hours I’ve spent lately.

After the CPR class, we went back to Agnes’ little room and waited for all the peeps to come find us. We had to talk with someone from palliative care, the social worker, the case manager, a nutritionist, and Agnes’ nurse. All that took about four hours, for one reason or another. We needed to go pick up her prescriptions from the outpatient pharmacy, including vitamins with iron. No, actually it was supposed to be vitamins without iron. No, actually it doesn’t matter which, we can decide. No actually, it has to be vitamins without iron. Whatever. The pharmacists got really annoyed and finally just shoved a bag in Jeremy’s hands and told him to get lost.

Then we had to wait for all of Agnes’ medical supplies to arrive. She got an I.V. pole and one month’s supply of feeding tubes, syringes, and n/g tubes.

Then we filled out a paper for Agnes to get an RSV vaccine, but it turned out that paper was from another patient’s paperwork so the case manager took it back and shredding it.

Then finally we were on our way!

Agnes did really well in her first 24 hours home. She didn’t eat very much by mouth, but again I think that’s because of all the changes for her coming home. We got our gear together and I felt pretty comfortable giving her tube feedings and dispensing her medications. She’s been sleeping a lot. The home care nurse came by this afternoon to assess Agnes and found that Agnes weighs 6 lb 11 oz! Agnes has only spit up twice since coming home.

Last night she slept in a bassinet in our room, and I don’t think I slept much at all because I was listening to her wheeze all night! Every once in a while she would stop wheezing and I would startle awake: O my gosh, she stopped breathing! But I’m sure she just had some breaths that were actually quiet. I think tonight we will bundle her up and turn on the fan in our room. Hopefully that will disguise the sounds of her labored breathing. Her noisy breathing is normal for her, so I hope I can tell if/when she is actually in trouble!

Other than that, we’ve been super busy, fitting Agnes’ care into the other things we need to do around the house.

Stephen is handling the changes okay. He seems to be a little out of sorts but he is still mostly behaving like usual. Jeremy and I will have to make a special effort to have some alone time with Stephen so he doesn’t feel neglected.

Now here are some pictures:

Agnes is a starfish.

The nurse is removing the heart and respiration monitor leads.

Happy to have a lead-free chest.

We’re going home!

Stephen and Agnes playing on the pretty blanket Aunt Jenea made.

Agnes is home!

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One response to “Going Home With Agnes

  1. woodra01 says:

    Woo hoo! That picture of you guys going home made me tear up. I am so happy she is home. I am glad you posted about it. I wanted to know how it went. Yay!

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