Laughing, Weeping, Living

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

Agnes’ New Record

on December 16, 2013

Agnes came home from the hospital at 1:00pm Wednesday December 11. She was readmitted to the hospital at 6:30am Sunday December 15.

At around 2:00am Sunday morning, the night nurse knocked on my bedroom door saying that Agnes’ pulse-oximeter readings were low and she could not get them to come up, after trying for half an hour. So I went down and Agnes’ O2 sat was hanging in the mid-80’s. I tried a number of things with the nurse: repositioning, suction, more blankets, a different head pillow, flush the suction catheter and try suctioning again, rescue dose of Ativan, soothing touch, turn up the O2, make sure the machines are working by testing the pulse-ox probe on ourselves. At about 3:30am, I decided we should try changing Agnes’ trach tube, to eliminate that as a possibility. I woke up Jeremy to tell him what was going on and he came down too. We changed Agnes’ trach quickly, but she gagged and threw up a small amount. We suctioned out her mouth quickly but the damage was done. After that Agnes’ O2 sats were hanging in the 70’s. I tried snuggling while Jeremy called in to Palliative Care. The on-call nurse suggested giving puffs of Albuterol, which we did, and that didn’t help. Agnes looked peaceful–if the pulse-oximeter wasn’t there to tell us we wouldn’t have known there was a problem. the on-call palliative care nurse recommended we talk to pulmonology, which we did. That doctor recommended we go to the Emergency Department, which we did.

Upon arrival, Agnes continued to maintain sats in the 70’s. When the ER folks swarmed in and took her out of her car seat, she threw up again, a larger amount. At this point it was difficult to keep her in O2 above 75 percent even with aggressive bagging. We were lucky that the ER doc had treated Agnes before and knew about her likely problems. She called up to PICU to let them know Agnes was on campus, and they began preparing a room. Agnes endured a mere 40 to 60 minutes in the ER, getting an I.V. places, blood drawn for labs, and a quick X-Ray. It was very different compared to her previous visit.

We were taken up to the PICU soon after arriving, and the team worked aggressively to get her sedated, paralyzed, breathing on the hospital ventilator in 100 percent O2, totally supported. The X-Ray showed total white out on her left lung, and partial white out on her right lung. Doctors diagnosed chemical aspiration from when Agnes threw up bile upon arriving in ER. This was compounding the initial suspected pulmonary hypertensive crisis that started the whole ordeal at 2am. Because Agnes aspirated bile, she suffered septic shock. Her body shut down: low body temperature, low blood pressure, stopped peeing, no bowel sounds. On top of all this, her abdomen continued to swell with fluid. The PICU team is currently treating Agnes with meds to help her maintain normal blood pressure, improve heart function, dilate capillaries in her lungs to improve oxygenation. They are keeping her covered with a warm air cushion to help her maintain a normal body temperature. They are checking her blood work multiple times a day. She has a foley catheter. They inserted a drain to take off some of the fluid build up in her abdomen; that had drained off more than 500 ml by the time I left this evening. Agnes is still totally paralyzed and sedated, and completely dependent on all her treatments.

I have never seen her this sick. I am shocked at how quickly it came on. I feel responsible for her condition because it was my idea to change her trach at home, which caused her to gag and puke and aspirate a bit of bile. I am slightly reassured by the fact that the on-call docs we talked to would have made us change her trach anyway, but still, I feel in a way Agnes’ condition is my fault somehow. In my head I know we did everything they would have done had Agnes been in the hospital at the start of her ordeal, but emotionally I feel responsible. Perhaps this feeling will pass.

And finally, as icing on the cake, the neurosurgeon is serious about externalizing Agnes’ shunt this time. Because of the drain to take off some of the fluid in her abdomen. It could allow an infection to enter and taint her shunt. So the shunt must be externalized, CSF cultures sent, and reinternalized later. As a VA shunt to Agnes’ heart.

Shit.

So, long story short, Agnes is not yet stable. When she is stable, neurosurgery plans to fiddle with her shunt. The PICU team is also hoping to discuss a number of other procedures that Agnes may require. In other words, we’re probably looking at another three to four week hospitalization. Agnes won’t be home for Christmas.

But on the positive side, I guess Santa Claus flies in to Akron Children’s Hospital on Christmas Eve morning, on the Air Bear medical transport helicopter. That sounds exciting! Then he visits all the units. I know I’m not the only parent with a kid in the hospital over Christmas, but I sure feel disappointed.

I guess we need fervent prayers for Agnes’ recovery. There is so far she needs to come back this time. Agnes needs a miracle.

Mary, Blessed Virgin Mother of God, pray for us. Saint Agnes, pray for us. Saint Maria Goretti, pray for us.

Advertisements

8 responses to “Agnes’ New Record

  1. Kathy Schwager says:

    I am praying for the miracle Agnes needs. None of this is your fault! Please be kind to yourself. You are a wonderful person, and Agnes and Stephen are so lucky to have you as their mother.

  2. JeneaSwainston says:

    I am so saddened by this news on Agnes. You did everything you could to help her. My prayers of comfort for you and Jeremy and God’s will for Agnes. Prayers for her comfort and yours.
    Love you all…Aunt Jenea

  3. Laura says:

    So many prayers coming your way.

  4. Becca says:

    I’m praying for you and Agnes. I’m so sorry this is happening. I’m sending thoughts of love and strength.

  5. Amy Seymour says:

    Judy, you are an amazing mom! You are so dedicated and willing to do whatever it takes. I’m sure Agnes would have fared worse under anyone else’s care. What this precious little girl needs is a miracle of full healing. I’m going to start praying for the intercession of Fulton Sheen (unless you’d like me to pray for someone else’s intercession); perhaps your little girl’s full and miraculous healing will be the miracle by which the good archbishop will be recognized as a saint.

  6. Penny says:

    Bill, Nate and I lit a candle at St.Bernards for Agnes and Stephen on the day of Stephen’s sacraments 11/24 and we commit to keeping that prayer light continuously burning indefinitely and to spending time in chapel for both your children.. She does need a miracle and we will pray for that. But I also pray that the other 3 Schwagers be enfolded under Our Lady’s mantle as well. I am awed and amazed at how well your critical thinking worked at 2 AM. I know nurses who would not have been as calm and focused as you were. Please forgive yourself. You have risen to each challenge God has handed you.

    • judy says:

      Thank you Penny for lighting a candle for Stephen and for praying for us. Jeremy and I did what we were trained to do during our many hours of parent education, so we don’t feel like we did anything special…but having said that, many nurses, doctors, and NP’s have commended our performance! I’m just glad we were able to do everything we could for Agnes.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: