Thursday, March 3, 2016

...the day we missed wedding and almost lost our daughter...

I took a break for a few weeks. Some of it was planned, some of it was necessary. We had our tickets booked to a wedding. A big wedding, in fact. My son's God Mother, my Maid of Honor was getting married. He was a ring bearer and I a Matron of Honor.

We never made it.

We left early on Janurary 28th. We were landed and to the hotel by 9AM.  We spent the day enjoying the glorious 65 degree weather Denver had to offer. We went to a few close parks. We basked in the sun. I went to the girls night.

Gianna woke that night with a croupy cough. Advil/Tylenol kept her comfortable and she was able to sleep through the night. We purchased a humidifier to try to help.

The next day was full of wedding rehearsals, wiffle ball, parks, and dinner fun.

Gianna woke at midnight with croup again. We laid under the humidifier for five hours. I ran outside at 3AM to try to get her stridor to lessen. Finally, at 5AM, she took a turn for the worse. I rolled her over and unzipped her pjs. Her chest (sternum) was retracting 2+ inches, and was quite frankly the scariest sight I have ever seen. At that point, we decided to awaken Gabe and rush to the closest ER. The front desk had no idea where an ER was. Our phone navigation directed us to a parking lot. 911 refused to give us any names or help as they wanted us to park and wait for an ambulance.

After what seemed like an eternity, we found a hospital about 8 min away. Without going into too many details. They have her a dose of steroids and epinephrine, which works in 90% off all cases. They assured we would be discharged in the next hour.

Another dose. We would still make the wedding.
Another dose. Steve should just take Gabe.
She isn't improving. We need out of here.

At that point, we were insistent upon a transfer. After waiting an hour for the ambulance, we were transferred to a children's hospital. We started on the pediatric side. After meeting with the attending, they decided to order one more epinephrine and try a different type of steroid. Minutes after the steroid, she crashed. She turned blue and her O2 stats plummeted. I started screaming. Steve couldn't find anyone and they kept turning off our call light. After what seemed like hours, they finally transferred us into the PICU.

This was Saturday night. They seemed to have her relatively "comfortable" after putting her on a few large doses of sedations. She was referred to as "air hungry" and would thrash like crazy every ten minutes, when the sedation was waning. Steve left to put Gabe to bed and sleep for the night at our nearby hotel. About an hour after she left, a Priest from the wedding showed up and anointed her. I was so very thankful for his presence. While he was there, she took a drastic turn for the worse and the decision was to intubate immediately. My sweet little girl was on a ventilator for croup. They couldn't tell me if she would live.  My mind kept spinning. They were talking a foreign body....could she have gotten anything small and clear (so it didn't show on an Xray) in her mouth??? I recounted every second of the last two days. We were at a loss for what it might be. Pray for a calm night, they said.  I was suddenly awakened that evening by my dear friend, whose wedding we missed. She and her new husband, gown/tux and all, left their reception to be with us. They spent an hour ON THEIR WEDDING NIGHT to sit with me, cry with me and be with me (Steve was with Gabe in the hotel.). That will never be forgotten. They were there nearly every day. Every day.

The minutes dripped by that night. Fortunately, my parents had a crazy idea (even though we told them they told us we will be discharged soon) to drive 10 hours through the night to be there. I don't know what we would have done with out them. Children aren't allowed in the PICU. The four of us split time round the clock to be with her. It took nearly three days to get her sedated enough so that the swelling would reduce in her trachea. She received the Blessing of Saint Blaise and a few hours later, a substantial air leak was present. We were so encouraged. The plan was to extubate the next morning. Her attending left specific instructions as to "keep her still. I don't want her to move," Without going into two much detail, she received dreadful care the next two nights. The new night attending (who never managed to be seen) "accidentally cancelled her sedation." I arrived the next morning (my dad spend the night so I could have a much needed break) to find out that she had thrashed most of the night. She had blown several IVs.

I was crushed.

 Her air leak disappeared and I became a sobbing mess. I pulled it together enough to have lets just say a highly aggressive conversation with the day shift attending and nurse. I juuuuuust about got kicked out of the hospital. He agreed I was well with in my right to be upset and announced on rounds that "she was improperly sedated." That blow was hard. The first three days, nurses kept telling me to leave and get some sleep. I needed sleep. I was hanging on by a thread. I had been pumping throughout all of this and the stress was catching up to me. Trust them...they said. They would take care of her. It was hard to not take it personal. I left and wasn't their to fight for her. (granted my medical background puts me at a very large advantage/a really annoying patient advocate....).

She now needed a PIC and they were contemplating an exploratory bronch to see if there was a foreign body. Surgery. Another setback with a whole host of risks.

Almost as instantly as it disappeared, another air leak was present, hours before her scheduled surgery. They decided to extubate the next morning. It was a sudden change of plans, but they felt like the tube was really inhibiting her healing. They wanted to see if she would be able to breath with out it.

The next few days were a painful blur. Each step forward was followed by side steps and steps back. She spiked fevers, dangerously high heart rates/blood pressures due to withdrawals. Shakes. Gradually weaning her off the oxygen.

I remember when she opened her eyes for the first time. I remember when they let me hold her sweet little body for the first time. 7 days.

They kept telling me how quickly she would rebound. She was a fighter. She was strong. One day after extubation, she couldn't hold her head up. The next day, she learned how to sit while assisted. She learned how to stand a day later. We were discharged on Wednesday, eleven days after we were admitted. They told me the next few weeks would be the hardest part. We had to relearn how to crawl/walk/talk/run all over again.

I didn't care. He gave us our sweet little girl again. I feel like this was one of the most trying times of my life. As my dear sweet friend sat with me, and remember feeling so empty and said,
"I have nothing left. I can't even pray any more. I have given him ALL i have."

And she said, "that is why we are all here. To help carry you. To pray with you.

And they did. They all did. Prayer is so powerful. This little girl had Masses said in four continents. She had thousands of people praying for her. We had so many dear friends that stopped by, brought us food, toys for name it. They were there.

God is good. As I have been pecking away at this, the tears have not stopped. I remember each of those minutes oh so well. My husband was such a rock. It has been a month and she is 100%. Thankfully, of all of the conditions to be admitted to, she had the one that had no long term effects. We were told we had the worst case of croup the hospital had seen in over 20 years, not a great thing to be known for. A scary time for sure. She learned to walk in about four days, much less than the predicted two weeks. The first time we heard her voice was the sweetest music.

Thank you. Thank you for my little girl.


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