Today wasn’t what we thought it would be, or hoped it would be, but first Lexi is ok. Lexi is home (I’ll get to that), and we are thankful for her doctors.
I’ll just start at the start of the day, since this is a surgery day blog. Feel free to jump ahead. We left our house today at 4:45am. Lexi got up fairly easily, considering she only slept about three hours. Adam probably slept about five hours. I slept maybe three hours.
Lexi had three different doctors scheduled for today. If you’ve never had surgery, never had multiple doctor surgery, or never had surgery as a CF patient, I am going to go through her preop.
1. So if your a CF patient your on precautions all the time. Basically that means everyone that comes talk to you has on a mask, gown and gloves. It looks like you must have the plague, but really they are protecting you from the germs of every other person they’ve come into contact with. #itsnotmeitsyou There was another girl with CF having procedures today.
2. Things that make you go hmmm… The anesthesiologist comes in all gowned up, and goes over all the breathing things. When the patient has breathing issues, this is a very important conversation. As she is preparing to leave, and is removing her gown and gloves, she says, “we waste so much money on these, you would think we could just reuse them.” Hmmm doesn’t that defeat the purpose?
3. “Organized” Chaos. When you have surgery the doctors come in and talk to you before they get started. Unfortunately GI and Pulmonology didn’t get the memo to come early. So surgery started about 30 minutes late, as the nurses frantically worked to get the other doctors down to talk to us. At which point there was a line of doctors and nurses outside the door. Funniest moment was when GI started to come in the room, ungowned, and the pulmonologist literally blocked her from entering. Yep, she turned around and grabbed a gown.
4. As parents, we aren’t unfamiliar with having our kids in surgery. We don’t like other family to come. We don’t bring the sister. We want to give all our attention to that daughter. We also don’t talk to each other during surgery. He reads and I play some mindless iPad game. We are together but silent. It works for us. Short surgeries or long surgeries it’s always the same routine.
5. ENT – Perfection! No polyps. Vocal cord appropriately reactive. All things all good.
6. Pulmonology – We changed up Lexi’s Meds about 5 weeks ago. The doctor said it would take about a month to see the full effects of the changes. Lexi has been off oral steroids for about three weeks. The inflation in her lungs appears to have settled down. That’s really good news. Lexi’s left lung is her worse lung. Particularly that lower left lobe. The doctor was able to clear out all the mucus from the lungs, and said things looked good when she was done. Biopsy results will be received starting in a week, and can take up to six weeks as they really see what might grow. We see the Doctor December 6th. She will have another CTScan and we will hopefully see that everything that’s been done has released the trapped air in her lungs. If not she will probably need to begin injections.
7. GI – First let me say that I love our GI doctor. She has treated the girls for 13 years. She ordered the tests that led to Lexi’s CF diagnosis. She coordinates discussions with many of our specialists. We’ve cried together, celebrated together, her son is Lexi’s age. We just love her. Lexi has has a Nissen Fundoplication, and has acidic, motility and GI reflex issues. She has a complex GI system, and because of privacy we won’t go into much more detail.
The GI doctor came out and began to show us photos of Lexi’s prior stomach surgery, and her phone rang. For the first time in all our surgeries, our doctor was being called back into the operating room because of our child having a complication. Yes, my stomach dropped. It was about 45 more minutes before anyone came to get us, and I’ll admit I was sick to my stomach. Then they called us back, and said “the nurses want to prepare you that she still has her breathing tube in. Yep, stomach drop times 2.
I’m struggling with how much to share, because privacy is important. Lexi suffers from Hyperesthesia. We don’t talk about this, because it’s one of those hard to understand, people get judgy things. No judgy please. Judgy people go away.
Hyperesthesia basically means that Lexi can feel, very specifically, and not necessarily painfully, what happens inside her body. For example, Lexi can point to where the screw is in her arm, and actually outline the screw perfectly without an X-ray. Lexi can point to exactly where the trapped air is in her lungs. She doesn’t necessarily understand what it is she feels, but without ever seeing the CT Scan can tell you. It’s impossible for you to understand if you don’t experience it. Honestly I never knew a condition like this exists, but our GI and orthopedic doctors take it very seriously. Judging? Doubting? Judgy doubters go away.
You have to know that to understand the next piece. So during her GI Procedure a probe was placed to monitor GI symptoms, and it meant she had a tube down her nose. So even under sedation her body was recognizing this tube as a foreign object and her stomach was contracting to try and push it out of her stomach. She began having spasms. It was downhill from there. Physically and emotionally the following hour was very difficult. Extremely elevated heart rate, low oxygen, multiple nurses, doctor, all the things. The doctor decided that the risk outweighed the benefits. The tube was removed, and it took about two hours for Lexi to stabilize.
After mom, dad, Lexi, nurse, and doctor tears we all decided to cancel the other tests that she was being admitted for. Her body needed to rest. Once Lexi could maintain her oxygen at 93 we brought her home.
We have no miracle answers. We will need to wait for all the cultures and biopsies to come back. She did get her lungs cleared out. The doctors were able to observe and document her drops in oxygen. The doctors told us that each piece of information tells the story, and for now we just have to wait. Her oxygen needs couldn’t tolerate any more stress to her body today.
Thank you for your prayers. Keep praying.