Laughing, Weeping, Living

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

Agnes is Home, for the fourth time

I have been extremely lax in posting, but I find it difficult to get away for as long as it takes to write something thoughtful and profound. Or at least something thoughtful. Or at least something. I am stealing a few moments here to write a quick update on the latest happenings in Agnes’ saga.

Jeremy and I passed all our training challenges and did a 24-hour shift of care at the hospital. That went very well, and I’m glad we did it because now if one of Agnes’ home care nurses doesn’t show up, we have some experience with what happens over the course of 24 hours. Agnes is really easy at night, and it is nice to know that going into a no-nurse emergency, because then all we really have to worry about is how do we stay awake.

Anyway, Agnes came home in an ambulance on Wednesday afternoon. A transport team took her from her room and rode with her home, and I rode in the front of the ambulance. An employee from the equipment company and the case manager from the home care agency both met Agnes at home. We all got her settled and hooked up to her home machines. She did settle in very well. She didn’t throw up during the first couple days at home like all the other homecomings. She didn’t take a sudden turn for the worse within the first few days like all those other times. Her respiration still seems fine. Her nutrition still seems fine. Her belly is still distended, but we are measuring it every day and so far there is nothing alarming. Agnes is sleeping a lot yesterday and today, but when she is awake she seems content. She likes to watch Stephen play. She likes to look at the dog and the cats. If a cat jumps up on my lap while I hold Agnes, she is very interested in that. She doesn’t really like to touch the fur, but she likes to watch them. Another nice thing is Agnes has no doctors appointments soon after discharge. I think her first appointment out of the home is on Dec 23rd. She does have some people coming to the house to visit her, but I am happy I don’t have to drive her back to the hospital campus over and over within the first week of being home. That feels like a real luxury.

We have twelve hours of home nursing now, from 7pm to 7am most nights, and 6pm to 6am on Saturdays. So far I have not been able to take advantage of an earlier bedtime; I learned to stay up late when we were getting 11pm to 7am nurses, and I can’t kick the habit! We are trying to settle in to a new routine that doesn’t involve going to the hospital. Also, I know Christmas is in a week and a half, but we have done nothing to get ready yet! No gift shopping, no baking, no dinner planning! I don’t know how we’ll get it done, but we will.

Our biggest prayer right now is that Agnes stays well enough to be home for Christmas. That would be so special, and her first holiday at home.

On the day of discharge, waiting for the transport team to show up.

On the day of discharge, waiting for the transport team to show up.


Busy Week

We brought Agnes home on Monday, and it has been a busy busy week. Agnes had a pediatrician appointment on Tuesday. It was our scheduled 4-month well baby visit. Funny story, the appointment was actually on Monday, but in my mind I thought it was Tuesday so I never rescheduled because with a Monday discharge she would make the appointment easily. So I’m on the way in the car, and I suddenly get that feeling, you know the one. I called Jeremy and asked him to check the calendar. Well, shoot, I was totally going to be on time except now it looks like I am actually 24 hours late. Jeremy called and they were gracious enough to let me come in anyway, so Agnes had her appointment on Tuesday.

Then on Wednesday Agnes visited Neurosurgery for a shunt check up. It’s working.

Then today Agnes visited Neurology for some sort of follow up. Agnes is delayed, partly because of her lengthy hospital stays, partly because of her chromosome stuff.

In the midst of all this, we’ve been calling to get in-home therapies restarted. We’ve fielded calls from the Social Security office and BCMH. We’ve scheduled home care equipment deliveries. We’ve had visits from home nurses and social workers.

Tomorrow we don’t have to go anywhere, thankfully. That’s fortunate because Agnes hates to ride in the car so much, she gets sweaty and breathes hard, and her color gets really weird and I worry about her. She’s even puked a couple times because of a stressful car trip; but so far today no throwing up. I’m hoping she can settle a bit over the weekend before we move back into the week. Next week we don’t have very many appointments, plus we should start getting more hours of private duty nursing next week. That will be a big help!

Okay, that’s all I have time for today, but I wanted to give a quick update!

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We brought Agnes home from the hospital today for the third time in her life. This time she was only in the hospital for 3 weeks, and she is coming home with exactly the same requirements as what she needed when she went in 3 weeks ago. We had asked to be discharged in the morning, and we were on the way to the elevator at 11:55am, so that was good. Of course Agnes was hysterical the whole way home; she had never really cared for riding in her car seat, and she was not happy to be back in it after a 3 week break! Otherwise, Agnes looks really good, she adjusted well to being home, she hasn’t thrown up once since we’ve been home which is already a great improvement over the last homecoming! We are going to get twelve hours of private duty nursing each day starting next week, hopefully. In the meantime we’ll have our usual 8 hours overnight. Agnes is going to receive the monthly vaccine for RSV, which is awesome. We are all pleased that she is home! Now some pictures:

In bed at the hospital, "I thought I heard someone say I was getting out of this joint?"

In bed at the hospital, “I thought I heard someone say I was getting out of this joint?”

Dressed and ready for the trip home!

Dressed and ready for the trip home!

It's been 3 weeks since she rode in a car seat!

It’s been 3 weeks since she rode in a car seat!

Getting our snuggle time in, in a big way!

Getting our snuggle time in, in a big way!

Happy to be home!

Happy to be home!

Sweet Baby Agnes smiles!

Sweet Baby Agnes smiles!








This will be super brief:

The PICU doctors want to discharge Agnes tomorrow. Wait, what? At least that was my reaction this afternoon when the Nurse Practitioner told me the decision. Well, they want to watch her for one more night to make sure she is okay without the vent, and then they don’t want to send her up to a floor for just one night and make the new staff learn about her just in time for her to be discharged, so they want to discharge her tomorrow from the PICU. I wonder how often the PICU gets to discharge patients?

Anyway, I personally don’t think Agnes will come home tomorrow because we need to organize our private-duty nursing for nights again, and this is Really. Short. Notice. Plus the supervisor at the nursing agency is out of town over the weekend starting now, and the guy who usually does the scheduling is also out of the office. So. The agency and the hospital will communicate tomorrow morning and we’ll see what gets worked out.

So, Agnes is clinically ready to come home, and as soon as the home nursing is set we’ll be on our way!

I’m surprised and happy it will happen so quickly, but I’ll miss watching PBS kids shows with Stephen. It’s just not that easy to do at home. But that’s the only down side to bringing Agnes home!

And one last thing: Miracle!!!! Thank you everyone for your prayers you continually offer. Agnes is coming home this weekend because of your prayers. That’s the truth.


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