We went to Arizona last month for the holidays, leaving on December 23 and returning January 6. While we were there, we stayed in Big River, Prescott and Mesa, respectively. While in Prescott, Jasmine started feeling icky, probably due to the altitude. It’s not super high, but high enough to affect someone who already has lung issues. Moving down to Mesa seemed to clear that up for her and we had a nice time while we were there, catching up with friends and making some new ones. When Jasmine had been having trouble in the high country, we called back to St. Louis and made arrangements for her to see a doctor when we returned to the Midwest. Even though things had mostly cleared up when we got to the Valley, we kept the appointment, figuring it wouldn’t hurt for her to see the doctors before we went home to Bloomington. Turns out it’s a good thing we did because she got some kind of stomach bug right after we got to St. Louis.
While her stomach was her main complaint, Jasmine was unable to get good measurements of her lung capacity when we saw the doctor, so she was admitted to the hospital. Her chest xrays showed some infiltration, and the doctors wanted to get her started on some antibiotics. They took blood and sputum but were unable to grow anything that would tell us what’s wrong. After a few days, she seemed to be recovering and they sent her home with IV antibiotics on Tuesday, January 13.
When Jasmine first got home, she seemed to be doing well enough that we decided to put her back in school. She did well, but Friday evening, she complained again of nausea and difficulty breathing. We worked with her to try to make it better, but by Saturday, she was in sleep mode. At first I thought we should just let her sleep. Maybe that’s what her body needed to heal. I figured at worst we’d end up with her in an upside down sleep schedule and would have to work to get her right-side up again by the time school started. Sunday came and she still slept, her breathing more labored and her body slightly feverish. Jeff and I knew that a trip to St. Louis was coming on Monday.
Sunday night we went to bed at about midnight. After reading for a bit, I had a feeling something wasn’t right with Jasmine, so I got up and went out to check on her. Her breathing was even more labored and her heart rate was elevated. At this point, I decided to call the doctors here in St. Louis. I felt strongly that she might not be able to wait for morning to make the trip to St. Louis and that she needed medical intervention before then anyway as her oxygen saturation was only 75% and her heart rate was 160.
Dr. Schuler in St. Louis responded to my call and, learning the facts, advised us to get Jasmine to the emergency room immediately, which we did. Unfortunately, it was too cold and snowy that night to air evac her to St. Louis, so we had to wait for an ambulance to come. Jasmine didn’t leave Bloomington until 6 AM Monday morning. She was admitted to ICU when she arrived in St. Louis.
When she got to the hospital, Dr. Schuler immediately ordered a bronchoscopy, so they could look in Jasmine’s lungs to see what was going on and take some samplesfor testing. They were looking for rejection or an infection. Because she was having such difficulty breathing, they had to put Jasmine on a ventilator for the procedure. By this time, Jeff was en route to St. Louis after having caught a few hours of sleep. The doctor called me following the bronch and told me Jasmine was not recovering well. I asked her if I needed to make arrangements to come to St. Louis and she paused for a moment and then said, “Yes.” They had taken Jasmine off the ventilator following the procedure, but the doctor was worried she’d have to go back on because she was doing so poorly. I let the doctor know Jeff was more than half way there and we decided that we could wait until he arrived before making a firm decision that I should follow. When I hung up the phone, my stomach was in my shoes. The doctors had never sounded so grim before, not even when we were in the end stages of lung disease with her old lungs. I waited out the next couple of hours through sheer will.
Finally, Jeff called with the news that Jasmine had perked up quite a bit and seemed to be doing quite a bit better. The doctors had decided to send her back out to the regular ward and had taken a shotgun approach to treating her lungs until they had some positive test results (meaning they were treating her for bacterial, viral and fungal infection all at once). He didn’t think I needed to come to St. Louis, so I decided to stay. Between Nina and Gabrielle, it’s been quite a tough decision, but we had decided me staying in Bloomington was best because Gab wouldn’t miss more school and both she and Nina aren’t allowed into Jasmine’s room anyway. This mess is a huge part of why we’ve decided to move from Bloomington, but that’s not really relevant here. other than that this whole mess serves as affirmation that we’ve made the right decision, albeit a painful one. So on Tuesday, everything seemed to be great and Jasmine seemed to be on the recovery trail.
Unfortunately, that night, she took a turn for the worse and started having difficulty breathing again. She was readmitted to ICU on Wednesday morning and they put her on a machine called a bipap to help her breathe. A bipap is a non-invasive ventilator. It has a device that covers Jasmine’s nose and it pushes air out at high speeds. The doctor said it’s like sticking your head out of the window while you’re driving and breathing. It helps retain positive pressure in Jasmine’s lungs and helps to oxygenate her blood. So far, it has kept us from having to put her back on a regular ventilator.
All the while this was happening, the doctors were drawing blood and running a million different tests trying to find out what was wrong with Jasmine. They knew her lungs were not in good shape and they also knew, from the bronch, that the problem wasn’t phlegm in the airways, but rather an infection of the lung tissue itself. Because of this, bacterial infection didn’t seem to be the likely culprit, so they were thinking it was either rejection or a viral or fungal infection. To date, all tests and stains have come back negative. They still do not know precisely what is wrong with Jasmine’s lungs.
So Wednesday morning, I decided that whatever Jeff said, I needed to be in St. Louis. I’ve said it before and I’ll say it again — it’s not about how good a job he does when he’s here, it’s that I need to see for myself the expressions on the medical staff’s faces, ask my own questions and be near Jasmine. So I made arrangements for Gabrielle to stay with some family friends in Bloomington, the dogs went to the kennel, and Nina and I came to St. Louis. By the time I got here, it was late. I was able to spend an hour or so with Jasmine and then we went to the hotel. I didn’t get a chance to really talk to any doctors and I was very worried about Jasmine. She wasn’t on the bipap, but she was using a non-rebreather with a high concentration of oxygen to keep her sats up. When I saw her Wednesday night, she was doing a little better, but still groggy. I really started to worry about the outcome of this infection (or whatever it is).
Thursday she really seemed to be doing better. She was joking with us, wanted to eat and read. I spent several hours with her and went home feeling a little better about her prognosis, while still being aware that for all intents and purposes, she was on life support. Without the oxygen, Jasmine would die. This became painfully clear when she was trying to eat. Even taking the mask off for a few seconds to put food in her mouth resulted in a sharp dip in her oxygen saturation. On Thursday they started Jas on IV nutrition and started her regular feeds at a very slow rate. The goal was to keep her from losing any more weight and to fuel her body to handle whatever it is that’s causing these problems. Jeff and I went back to the hotel Thursday night feeling she was making some progress, even though they still hadn’t found out what was causing all this.
Friday morning, we received a phone call from the nurse that she had again taken a bad turn during the night and had herself asked to be put back on the bipap machine. Her blood levels were low, so a blood transfusion was necessary. And they had to add another IV line because there were too many meds to go into just one port. Jasmine was feeling anxiety over her condition and had to be given some anti-anxiety medicine to sleep. Finally, the x-rays of her chest taken that morning were showing no improvement and in fact seemed to be slightly worse. We braced ourselves for whatever we might find and I became increasingly anxious that she might not make it. After all, she was (and is) for all intents and purposes on life support. Without help breathing, she wouldn’t be alive. So after agonizing over that for awhile, I finally asked to speak to the doctors, specifically, to Jasmine’s normal doctor because we always seemed to miss her. I really needed to hear from them whether or not we should be flying in relatives.
I’m glad I did that because it actually ended up alleviating some of my immediate fear. At this point, the help they’re giving her lungs is keeping things relatively healthy. Her blood is well oxygenated. The worst thing facing us at this point is that she will need to be put back on the ventilator, meaning a tube down her throat and a machine really doing all the work of breathing for her. As scary as that sounds, it would actually keep her lungs stabilized while they work to figure out what’s wrong. However, while the floor doctor seemed to feel this might be imminent, Jasmine’s regular doctor felt she was doing well enough with the bipap and that it might not happen. So we’ll see. We still have many options for treatment. If she doesn’t show change for the better within 24 hours (from last night), they are going to start treating her for rejection, even though they didn’t see any in her lungs. This will involve an intense IV burst of steroids. If that doesn’t work, they will clean her blood of any antibodies that may have developed against her new lungs. If that doesn’t work, then we sit back and review our options. Death is not imminent, and I know because I asked point blank. I have never been more afraid of an answer, but I’m glad that I asked.
The upshot, as of right now, is that this is hard to watch because it involves a struggle to breathe, but that there is still a lot of hope for a full recovery and things will go on as we planned. I am cautiously optimistic. Jasmine herself told me on Thursday that she was going to beat this thing, so I have no choice but to believe her. 🙂 We could still use your prayers and energy. The doctors need clarity to see what it is that’s going on with her. We need strength to get through this and make the right choices. Jasmine could use some peace and healing.