Laughing, Weeping, Living

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

Christmas Surprise

On Christmas Day, we were in the midst of Agnes’ shunt saga and coming home was not even on our radar. We went to church and had a nice family dinner, we visited Agnes in the hospital and wondered how her shunt surgery would go on the day after Christmas. We snapped a few photos:

Merry Christmas from Agnes in her cute booties.

Merry Christmas from Agnes in her cute booties.

After Divine Liturgy on Christmas morning.

After Divine Liturgy on Christmas morning.

Agnes did do well with her shunt surgery. So well, in fact, that she was transferred out of the PICU on Saturday, while the rest of us were in Perrysburg, OH for a holiday gathering of extended family. I got a picture with my grandma:

Four generations: my grandma, my dad, me, Stephen.

Four generations: my grandma, my dad, me, Stephen.

When we came back to Akron and visited Agnes on Sunday, several people asked us if we were still planning to take her home that day, as in Sunday. Um…no that’s not really possible. We thought maybe by Tuesday all the home care stuff would be organized; that’s what we were expecting.

On Monday morning, I went with Stephen to visit Agnes while Jeremy took care of some car business at the BMV. As soon as I arrived at the hospital, before I saw anyone or spoke to Agnes’ nurse, I got a call from home with the message that the home care agency would be out at our house to reopen Agnes’ case since she was scheduled to come home that day, as in Monday. Well, that was news to me. So I called Jeremy and told him to bring all of Agnes’ travel gear when he was done at the BMV.

It was a whirlwind, but we still managed to keep the tradition of discharge-day photos:

snapped a selfie

snapped a selfie

daddy wanted to do a selfie, too

daddy wanted to do a selfie, too

We brought Agnes home in her Christmas present minivan, and she did a great job. No crying, perfect O2 sats, no puking. She has been very stable since coming home. She has been able to sat 100% almost all the time on a mere 1 liter of oxygen, which is something she was never able to do. Not since the week or two immediately after coming home with a trach only.

I can’t even believe she came home after only two weeks in the hospital. I am still amazed by what seems to be a miraculous recovery. It is hard to believe that only two weeks ago, she was so sick we were talking about what to do if it was The End, and the social workers were whispering “hospice care” to each other. And now, she seems to be healthier than ever, at least from a respiratory standpoint. She still has a bit of mysterious distention in her belly, which can’t possibly be shunt-related anymore since the shunt is now in her heart. If it’s not brain fluid, then what is it?

On the one hand, I am thrilled to have Agnes home and I want to relax and settle in to a routine at home, and feel like a “normal” family, as much as we can. But on the other hand, I keep expecting Agnes to pull a fast one in two or three days, “I told you so!” and end up back in the hospital.

Only she knows the truth.



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.


Going Home With Agnes

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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