I’m glad we’re home.
We spent Christmas Eve and Christmas Day with Jen's family in Sandy. Lili continued to fever off and on until Christmas morning her fever hit 105.5 and we couldn't bring it down. Motrin and Tylenol simply laughed at us. We were back and forth with various doctors on the phone (don't plan on getting in touch with happy health health care providers on Christmas day), but were told that it was very common to have such high fevers with the seasonal flu bug that was going around. Lili would act sick when the fever hit, but then bounce back and be just about herself when it came below 100.
The doctors suspected that the fevers would last up to 8 days. “Just wait and watch, nothing we can do until next Wednesday really.” On Sunday morning, day 6 of fevers, something changed. I held Lili on my lap at noon trying to comfort her during another fever, when I noticed her breathing had changed. She would hold her breath for just a second at the top of each inhale, just before she exhaled (kind of like just after you’ve cried really hard and are starting to calm down). It was very subtle, but noticeable nonetheless. I called my sister Tiffany and she quickly informed me that Lili was experiencing closed glottis breathing, which typically indicates the body compensating for a respiratory challenge. We took Lili immediately to an after-hours clinic (Sunday afternoon). One look and the doctor said it was Pneumonia. He called the hospital and we checked in.
Then all Hell broke loose.
They X-rayed Lili’s chest and told us that she did in-fact have Pneumonia, in fact, the lower lobe of her left lung was completely consolidated (not good). They called the infectious disease specialist from Primary Children’s Hospital. He gave us the bad news. Lili’s disease was a 9 out of 10. It was bad, and it was going to take a long time to fix. He also told us that Lili was going to have to go through unreal amounts pain, so much pain that we would hate him for it. He wasn’t joking, and he was right.
They sedated Lili and took her down to interventional radiology where they placed the first chest tube and PICC line (a small tube inserted in the arm that travels up the cephalic vein, across the chest and rests in the distal superior vena cava of the heart). While transferring Lili back to the hospital bed they took off her Oxygen for just a moment during the switch (usually not a problem if done quickly). However, one of the NP’s cell phone rang and she took a personal call during the transfer. Lili started to de-sat instantly (she's not breathing, her lips are turning blue). I’m still furious. Luckily, my brother-in-law was in the room (Dr.), since no one else seemed to notice he yelled to the team, “She is de-sating, someone do something!” They bagged her a few times and she was back. I’m still furious at that person. Can you believe that? I don’t want to sound too bitter, but I’m extremely disappointed in that person’s judgment. Don't they know how special Lili is?
The tube failed. It drained for a while, but insufficiently to say the least. Turns out, it was a bad tube placement.
(details of days 3 through 16 to follow soon)
For any of you who are still wondering what in the world happened, here it is:
The Tuesday morning before Christmas, Lili woke up with a fever. Nothing new here. We gave her some Motrin and she was fine the rest of the day. Then, on Tuesday night, she woke up in the middle of the night with a fever again. We called our pediatrician Wednesday morning and scheduled an appointment for later that day. At the doctor’s office, they checked for Strep, a urinary tract infection, respiration problems and an ear infection. Nothing there, probably just the flu (later, I read the notes from that visit, the only comment on the notes… “Pneumonia ruled out”).
We spent Christmas Eve and Christmas Day with Jen's family in Sandy. Lili continued to fever off and on until Christmas morning her fever hit 105.5 and we couldn't bring it down. Motrin and Tylenol simply laughed at us. We were back and forth with various doctors on the phone (don't plan on getting in touch with happy health health care providers on Christmas day), but were told that it was very common to have such high fevers with the seasonal flu bug that was going around. Lili would act sick when the fever hit, but then bounce back and be just about herself when it came below 100.
The doctors suspected that the fevers would last up to 8 days. “Just wait and watch, nothing we can do until next Wednesday really.” On Sunday morning, day 6 of fevers, something changed. I held Lili on my lap at noon trying to comfort her during another fever, when I noticed her breathing had changed. She would hold her breath for just a second at the top of each inhale, just before she exhaled (kind of like just after you’ve cried really hard and are starting to calm down). It was very subtle, but noticeable nonetheless. I called my sister Tiffany and she quickly informed me that Lili was experiencing closed glottis breathing, which typically indicates the body compensating for a respiratory challenge. We took Lili immediately to an after-hours clinic (Sunday afternoon). One look and the doctor said it was Pneumonia. He called the hospital and we checked in.
Then all Hell broke loose.
They X-rayed Lili’s chest and told us that she did in-fact have Pneumonia, in fact, the lower lobe of her left lung was completely consolidated (not good). They called the infectious disease specialist from Primary Children’s Hospital. He gave us the bad news. Lili’s disease was a 9 out of 10. It was bad, and it was going to take a long time to fix. He also told us that Lili was going to have to go through unreal amounts pain, so much pain that we would hate him for it. He wasn’t joking, and he was right.
They sedated Lili and took her down to interventional radiology where they placed the first chest tube and PICC line (a small tube inserted in the arm that travels up the cephalic vein, across the chest and rests in the distal superior vena cava of the heart). While transferring Lili back to the hospital bed they took off her Oxygen for just a moment during the switch (usually not a problem if done quickly). However, one of the NP’s cell phone rang and she took a personal call during the transfer. Lili started to de-sat instantly (she's not breathing, her lips are turning blue). I’m still furious. Luckily, my brother-in-law was in the room (Dr.), since no one else seemed to notice he yelled to the team, “She is de-sating, someone do something!” They bagged her a few times and she was back. I’m still furious at that person. Can you believe that? I don’t want to sound too bitter, but I’m extremely disappointed in that person’s judgment. Don't they know how special Lili is?
The tube failed. It drained for a while, but insufficiently to say the least. Turns out, it was a bad tube placement.
(details of days 3 through 16 to follow soon)
11 comments:
Oh my gosh. What a nigh-mare! It seems like you have really been educated in hospitals over the last three weeks. How are you two copping emotionally? It must be traumatic to go from fatal to fine in a couple days?? I hope you four are all feeling like life is returning to normal and I'm so grateful that Lili was strong enough to make it through and that God was with the four of you through it all. ... Still thinking of you.
So so crazy to see the Christmas pictures...you never would know that she was so so sick looking at her happy face.
Can't wait to hear more about the experience. CRAZY!!! I just can't get over this.
We are glad you guys can finally breathe again! It's so good to hear Lili is doing better. Hope you can get some good rest now.
Horrifying.
When I called mom every 5 seconds for an update she left that experience out.
I'm not a fighter, but I want to sock that nurse in the face. Good and hard. And I wouldn't feel bad.
I sure love you. And I'm so happy lili is home and well. Let me know if you need me to come up and babysit, I want to see lils like crazy.
i am having heart palpitations reading this. i (obviously) hadn't understood how horrifying this experience literally was. and to think this is just day one and two? and we have 16 total? yikes. i am anxious to read more.
Jen, Ky, Lili, and Serrell --> because I'm sure she's been feeling the stress along with the rest of you,
As somebody who works closely with people who are battling serious illnesses and even possibly facing death on a regular basis, it's been frustrating for me to read about all that Lili has had to go through. Before this, it was easy to assume that people I know and love are "untouchable" from chest tubes and central lines, because those are things that happen at work. Those are things that happen to patients. And now, all of a sudden I’m ultra aware that my next patient could be my neighbor, my friend, my family member.
I really appreciate you both sharing what it’s like to be on the other side of the bed. I’ve been keeping you all in my prayers. Way to show that pneumonia what’s up Lili!
oh my gosh! i can't even believe that!! i would be super upset too...i am just reading it!
i'm so glad that lili is home!!! i can't even imagine what you guys had to go thru watching your little girl go thru so much pain. i hope you felt all of our prayers.
hope to see you guys soon:)
i am so relieved to hear she is home! though not as relieved as you, i am sure. i've been thinking about you guys so much. thanks for keeping us informed.
i also like what your friend kristin said about looking at her patients differently. very true--not that i am anywhere near the medical profession, but it is often we forget that everyone is someone's daughter, brother, child, friend, neighbor, etc.
Oh, I have been waiting on that good news! I am so glad you all are home now. I can't imagine what you have gone through the past two weeks. You are all so strong!
I'm so glad to hear that she is doing better! What a traumatic experience.
I'm so glad Lili is home and doing well. I know what you went through was hard... all the medical terms and situations and teams of doctors, etc. you described have been my family's life since my little sister was born. It's hard, stressful stuff, but Primary's is such a great hospital. Thank goodness for that.
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