I’m sorry that I was not able to get any info sent out yesterday; we were so busy with doctors and tests that it was all we could do to keep up with it all for ourselves never mind share info. We really appreciate everyone’s prayers for Charlotte. Late last night our doctor came in with a huge smile on his face we had results back from some of her tests. He said it was a miracle that, considering Charlotte’s condition and the oddness of some of her symptoms (and lack of symptoms,) that she only has pneumonia and it’s a very easily treatable strain. There were so many frightening ideas being passed around yesterday during all her testing, one being a blood clot in her lung- which is hard to detect and could have been life threatening. We were all very relieved that it came to the conclusion of pneumonia. This does not mean we are out of all danger; she is very sick and tired. She is on some very aggressive antibiotics. She is sleeping restlessly on Daddies shoulder right now, Oxygen hose blowing full blast in her face.
Let me fill you in on a bit of the whirl wind of Friday. We talked to 9, NINE! different doctors yesterday, most of them more than once, most of them brought their entourage... I couldn’t even guess how many people we talked to in total. Each of them wanted to hear the story, when did we first notice her sick... how did things progress... each one of them brought their own set of questions to the story. Was she on a farm, do we have pets, did we play in the mud, were we around a crowd, did we go to the fair, has she had anything unpasteurized (milk, honey) has anyone in our entire neighbourhood been sick, what kind of house renos were we doing, was there any sign of mould, did she have rash, was she eating normal, what about all these questions for the last month, what about all these questions for the rest of our family, how was her birth, when was her last chemo, how did radiation go, has she been complaining of pain, did she have any falls, or seizures, has she had a runny nose, how have her diapers been, did she visit any new places, what about other planets or the twenty sixth moon of Jupiter, does she have family history of asthma or anything? The list went on and on... We did that nine times. We talked with doctors from Respirology, Infectious Disease, Respiratory Tech, two doctors from Pulmonary, Intensive Care doctors, a couple doctors from our Oncology team. And then sometimes they would come back for further questioning, or send their minions (as Rob teases.)
Charlotte caused quite the stir in the hospital yesterday, I feel like we caused a flurry in nearly every department. But I am amazed at how well orchestrated everything was. I think that we lucked out with the Oncologist who was covering, not that we have had problems with any of them, but this one seems particularly methodical and organized and overly precautious... traits that worked in our favour. His style of presenting information kept us fairly calm during such a long wait with no answers.
I said yesterday that Cranbrooks x-ray suggested pneumonia but the doctors here didn’t think it was that clear. The x-ray actually looked good. The odd thing about all this was that Charlottes chest sounded as clear and healthy as ever, pneumonia would make it sound gunky and crackley under the stethoscope. She also was not presenting any other symptoms that would go along with pneumonia, no clues in her style of breathing- which muscles she was using. So I guess pneumonia was not the obvious answer. She was started on new antibiotics that covered a broad spectrum of things, they thought the one she had been on in Cranbrook was too specific.
We started all sorts of tests. Blood tests to check her cell counts, capillary blood tests- where they poke her toe to check her bloods oxygen usage, cultures taken for checking for viruses, another chest x-ray, a nose test- I can’t remember what it’s called- the nurse stuck something WAAAAY up her nose to collect a specimen, swab tests- they swabbed her armpit, groin and another WAAAAY up the nose one. One last big test, we waited on the red list for the OR to open up as she had to be under full anaesthetic for this one: the Bronchial Alveolar Lavage. The which what who? Basically it’s a spaghetti sized scope with a light and camera that goes into her lungs to take a look around, they flush a small amount of salt solution into the lung then suction it out. Cells that have floated back out with the solution are analyzed. There was much much consultation about this test, it has some major complications that could go with it. We were told to EXPECT her to need to go to ICU afterwards, maybe for a few days to recover! She may even stay intubated and on a respirator for some time after the procedure, this means that she would stay under anaesthesia with a breathing tube in with a machine breathing for her. This definitely left us a little rattled! But in answer to prayer and in true Charlotte style she woke up breathing on her own, with no complications. We went back to our regular room to our nurse who looked very relieved to see us back.
By the time we were back from the OR results from all the little tests were coming back. The x-ray showed that she DID have a really bad pneumonia, 60 to 80% of her left lung is inflamed and over 25% of her right lung. The cap test showed that she did have good oxygen in her system- surprisingly good in fact. The Bronc test came back quickly; they saw that although there is a large area affected by this it is not badly infected- not much swelling and fluids, yet at least. I think that indicates that they caught it quickly before it got too far out of control. Once the pneumonia was diagnosed they switched her over to 3 different antibiotics to cover specific strains.
Around 9:00 our night doctor came in with a smile the news that it is this treatable strain called Pneumocystis pneumonia. Once we had the name of the source we changed her drugs again, now she is on a single drug in fairly high doses. For those keeping count this is the 6th antibiotic/drug that has been tried as they narrowed down the list. There is still the chance that there could be a secondary infection or even a second type of pneumonia affecting her but at least we have one confirmed and can start treating it.
And that puts us back where I started this blog post. Sorry it’s so long, there was just so much going on yesterday!
Last night went fairly well, with the exception of a super high spike in fever, a quick drop in her heart rate and an explosive diaper that made us need to change the sheets and wash the floor! Poor things has not pooped in a few days so we tried a suppository... unfortunately it didn’t kick in until 4am... and I was the poor sucker to discover that it had worked! But we got everything taken care of and managed to sneak in an hour or two of sleep.
Today has been much calmer, just one doctor visit to check on her. Charlotte has been able to sleep a little today too. She still needs full oxygen on which is a bit annoying because she refuses to have nasal prongs so we have to keep a hose blowing within 4 inches of her nose all the time. But she has eaten a little and had a few moments of playing in good spirits.