Last Thursday started off quite unremarkably: Anna and I did school after Mark left for work, the kids had their snacks when school was done, I started on the morning's housework ... but by lunchtime, the runny nose Levi had developed the previous day was turning into something more significant. This was actually not unusual; we have learned over the course of the last 10 months that Levi rarely has a normal cold. For whatever reason, his colds usually turn into big chest infections that require nebulised breathing treatments and involve lots of coughing, wheezing and once a diagnosis of pneumonia. I cancelled our dinner plans for the evening, and called Mark to have him bring his pulse-ox home at lunch time so we could check Levi's blood oxygen levels. Mark wasn't very excited about the way Levi looked, and at the end of the afternoon clinic he had one of the other doctors, Erin Meier, come check on him at the house. By this point, Levi's breathing was very laboured and faster than it should be, he was wheezing badly, he hadn't had any food or drink all day, and he was acting sick. Erin advised us to take him to the ER so he could get some IV fluids and antibiotics. We dropped the girls off with our neighbours and headed to the hospital.
I have been a patient at the hospital here on a few occasions - my prenatal visits will Dr Bill, Lucy's delivery, and her two month well child visit. But those were planned. This time was different. I found myself in the ER surrounded by people in exactly the same situation that we were in: a medical emergency had arisen, they headed to the hospital, and were now in a holding pattern of uncertainty and anxiety. The patient in the bed next to ours was a little girl younger than Levi, also in respiratory distress, and she sounded even worse than he did. Her parents stood on either side of her bed holding her hands, her mom was crying into her mobile phone as she spoke with relatives ... even in the couple hours we were there, the girl's breathing sounded worse and worse.
(This little girl sparked a thought process that I hope to be able to write about too - but it's too much to try to fit into one post!)
The nurses couldn't get an IV into Levi's hands, but after several attempts they were successful in his foot. He was so listless and was working so hard to breathe that he didn't even fight them. Every now and then he would start whimpering and ask us if he was better yet and could he go home and see Anna ... I think it would have been much easier on my heart if he'd been kicking and fighting!
After a couple hours of getting IV fluids and some antibiotics, Erin told us we could go home for the night. She wrestled an IV pole and oxygen concentrator into the Cruiser, drove us home and we got Levi situated on the couch.
Erin went home for a couple hours, but while she was gone Levi started to worsen. His breathing became so laboured that each breath was a gasp, he showed all the signs of being in severe respiratory distress, his oxygen saturation levels were falling, and he just looked awful. When Erin came back and saw him, she decided he needed to be admitted to the hospital overnight. One of our other neighbours came to stay with the (now sleeping) girls so Mark and I could both go with Levi.
We were given one of the hospital's few isolation rooms, which afforded us a little more privacy than a bed on the ward. And so began the worst night of our lives. Erin ordered every available respiratory medicine in the hospital, and for hours it seemed to make no difference at all. Levi lay on the bed gasping for breath, breathing 70-80 times a minute, sometimes crying but not able to catch his breath enough to talk. Sometime around midnight, I went home to be with the girls and get a little rest, and be home when Lucy woke up in the morning to eat. A couple hours after I left, Erin had the anaesthesia officer bring pediatric intubation supplies to the room so they would be close, since Levi would need to be intubated if he got any worse. She got the contact information for our insurance carriers who would be able to med-evac Levi to Australia.
By this time, although Mark and I didn't find out until later, several urgent prayer bulletins had been sent out both here and by our families in the States and England. And at around 4am, Levi slowly started to stabilise. He was able to get a few 30-minute naps in, and either the rest or the accumulation of medicines or prayers (probably all of the above) seemed to allow him to turn the corner.
In the morning, after I fed Lucy and dropped the girls off with neighbours again, I switched out with Mark so he could come home and sleep for a few hours. Not long after I got there Levi needed to go for a chest Xray, which he despised and which showed pneumonia on one side. During the course of the morning he steadily kept improving, both medically and in how he was acting. We were still hitting him pretty hard with breathing treatments and IV medicines, but now he seemed to be responding better. His Rocephin (an antibiotic) burned when it went into his IV, and after the first dose he would cling to me each time a nurse walked in, and ask me not to let them hurt him. But by the time Mark came back just after lunch, Levi had been able to have a few visitors and was enjoying sitting up and colouring while we listened to the Frozen soundtrack on my phone!
Mark and I switched out again for the afternoon, and around 4pm as I was getting ready to head back up to the hospital Erin and Mark drove up in the Cruiser to bring Levi home. I've never been so happy to hear his miserable little cry coming up the path to the front door!! Once again, Erin helped us get him settled back in and went over his new regimen of medicines before she left. Since getting home, Levi has steadily improved. We are still giving him nebuliser treatments around the clock, but have been able to space them out to every 4 hours rather than every 30 minutes. His lungs sound much better, he's not exerting effort to breath any more, and he is acting close to his normal, playful self. Perhaps a slightly whinier version of his norm, but hey - I'll take it!
So what now? This was the fifth episode of this type that we have seen in the last 10 months, although this was by far the most severe. He met all the criteria for a diagnosis of asthma, which there is a chance he may outgrow but this is not a given. He will be on multiple daily medicines for the foreseeable future in an effort to prevent any more exacerbations, which we will have to have sent from the States since the supply here is unpredictable. We may need to make some dietary changes since he has mild to moderate food allergies to a whole host of items, and an allergic reaction to food can precipitate an asthma exacerbation. We will be Skyping soon with a Pediatric Pulmonologist/ allergy specialist in the States to discuss the best cocktail of maintenance medications to put him on. But at the same time, we want to give him as normal a childhood as we can without compromising his health. It is a balance we will have to find over the coming months and possibly years, as we learn the severity of his asthma and how well we can control it.
There are so many unknowns when I think about this new element to our lives, which has both a chronic and acute side to manage. Had we been in the US Levi would have been admitted to a pediatric ICU; how do we incorporate Levi's diagnosis into the call we know God has placed on our lives to medical missions? Should this affect where we live? Will this be the last time we aren't sure that Levi will make it through the night? Or not? Will his maintenance meds enable him to lead a totally normal life from now on and this incident will remain the first and last of its kind? Or not? I think the passage of time will help answer some of our questions, but in the meantime I am just overwhelmed with gratitude that Levi is still with us. Our lives were impacted in a very real way by literally hundreds of people on at least three different continents praying for us, most of whom we have never even met. And our phenomenal doctor Erin went so far beyond the call of duty to ensure Levi was well taken care of - from planning to spend the night at our house, to staying by his bedside the entire night at the hospital to make sure his medications were all being given correctly and monitor for any signs of toxicity (normally labs would be drawn for this, an option we don't have here), praying for him through the wee hours of the morning, combing through the hospital pharmacy to find the right medicine to send home with us ... had we been flown to Brisbane we may have had better medical facilities, but we would never have had a doctor willing to go to those lengths to ensure her patient received the best possible care she could deliver.
So, although this was not an experience I ever care to repeat, we have so much to be grateful for on this side of it. Not least, this little boy running around the house again!
To all of you who prayed with and for us over the last few days, and helped us take care of Anna and Lucy while Levi was in the hospital, thank you more than we will ever be able to express. You made a huge difference to our family! And if you made it to the end of this mammoth blog post, well done :)
