Namine was complaining of abdominal pain again, like last May and again in early October. Ever since discovering the first hernia, each time Namine complains of this pain we fear that it’s going to be an emergency hernia repair. Thankfully, that has not yet been the case.
Prior to bringing Namine into the ER, she was complaining of pain on her left side. We actually thought it was related to the cough she’d developed shortly after Thanksgiving, and that it meant she was having trouble breathing. She explained to us and the medical staff at the hospital that no, it was lower and not related to her coughing.
As a cardiac patient, Namine’s blood-oxygen level needs to be monitored more closely when she’s sick. We had checked her O2 a day or two prior, and it was okay. It wasn’t great, but it was acceptable.
Let me explain a little about Namine’s O2 levels.
Most people have a blood-oxygen saturation level — medical staff use the shorthand term “sat” — of 97-100. Almost no one has a perfect sat, but Namine, due to her heart defect and thrice-modified heart, almost never sats above 95. When she’s sick, it’s not uncommon for her to drop down to 90-92.
When the nurse checked Namine’s O2 level in the ER, she was satting at 87-88. That was too low, even for a post-Fontan patient. Consequently, they put her on oxygen. In the meantime, they also performed an ultrasound and chest x-ray to diagnose her abdominal pain — pain which, mysteriously, had vanished during our time in the ER.
The diagnoses
The ultrasound revealed nothing concerning. The hernias were still there, of course, but they were not in need of immediate attention. She had a urinalysis done, which revealed another urinary tract infection. A culture was sent off to the lab, which would take longer but would reveal the exact organism and therefore guide the doctors in prescribing an antibiotic to properly fight it. (Strangely enough, Namine was already on an antibiotic for a double ear infection, but it didn’t seem to be doing anything for this.)
The chest x-ray revealed, as the doctors first thought, that Namine had pneumonia. (That turned out to not be true.) Requiring oxygen to keep her saturation up, she could not be sent home, and was therefore admitted to the hospital. Doctors continued to bring in the expertise of different departments, as is necessary concerning individuals with complex needs, such as Namine.
Pulmonology concluded that Namine did not, in fact, have pneumonia. What she did have was a partially collapsed lung, called atelectasis. No one could explain how this happened, though one theory is that she had some mucus block some alveoli (air sacs in the lungs), resulting in their collapse.
The atelectasis alone might have explained Namine’s drop in saturation, but the doctors weren’t all satisfied. They tested for covid, strep, and influenza, and that last came back positive. Now with two confirmed explanations for Namine’s low O2, they could make a plan for recovery.
The treatment
Since Namine had several things going on, doctors took a “pronged” approach.
The first issue to solve was her consistently dropping oxygen level. Since it was not pneumonia, there was no medication to prescribe. Rather, they upped her inhaler medication and started a breathing therapy regimen. They started Namine on using an incentive spirometer, which she has used before. It’s a handheld device that measures the volume of your breath, but it’s also good for improving lung function. We did notice, over time, that her O2 improved and she was able to be weaned off the oxygen. Her cough improved slightly, too.
The other major issue was the UTI. It took several days for the full culture results to return from the lab. During that time, Namine was kept on IV antibiotics, which were stronger and covered a larger spectrum of possible bacteria. Once the results came back, the doctors were able to prescribe an oral antibiotic, the prescription for which was waiting for us once we left.
Keeping busy
Being in the hospital — and we have the experience to back this up — is comprised of mostly waiting. Waiting for results, waiting for medication, waiting to talk to doctors. We had no preparation for this visit, since we came straight for the ER. We were able to get into some activities, however, since that not only helped to stave off boredom but also get Namine out of bed and be more active. (That helped her lungs too!)
A favorite card game of Namine’s is Uno, but we have a special version: “Uno All Wild.” It is something else. We also picked up an origami book, since Namine and her cousin had so much fun with it at the international folk fair. Namine and Jessica made quite a few creations. I helped a little, too.
Getting off the oxygen
Even though Namine was getting out of bed more often, staying active — as much as one can while on isolation in the hospital — she was still not able to keep her saturation consistently above 90 without assistance from supplemental oxygen. This caused the doctors to question if this weren’t something to do with her heart, or perhaps that the standard of the 90% baseline was asking too much of Namine’s body.
I’ll spare you much of the back-and-forth frustration of trying to contact any specialized hospital department over the weekend, but suffice to say we did get a hold of cardiology. They confirmed that when she’s sick (which she is), they would require a baseline of 85% saturation, not 90. As long as she could maintain above 85, including while asleep (during which it is normal for everyone to desaturate somewhat), then she would be allowed to go home.
After receiving that news, Namine spent almost an entire day off the oxygen. She was coughing less, proof in another way that her health was improving. Sleeping through the night was another matter, however. She did repeatedly drop below 85% saturation, but every time she self-resolved: she brought herself back up above threshold within a matter of seconds. All told, she never had to wear the oxygen mask overnight.
Going home
Doctors were very pleased with Namine’s first successful night without oxygen. They were hesitant to let her go home, though, preferring to be cautious and keep her one more night. She did well, perhaps even better than the night prior. She still dropped her oxygen below the lower threshold, but as she did the night before, she self-resolved. Doctors agreed to send her home.
Namine originally had a surgery planned on the fifteenth of December: the combination cyst removal and hernia repair. With her going home now, only 11 days away from that date, the surgery is now postponed. Even though she’s being sent home, Namine still has the flu. (Requiring oxygen was the reason she was kept at the hospital, not sickness.) Doctors are confident she’ll be over the flu by the fifteenth, but they’re concerned that her lungs will not have sufficiently recovered to withstand the intensity of surgery. We’ll meet with the surgical team again soon, to put an official reschedule date on the calendar.
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