Maksim has had quite the eventful and scary week full of ups and downs, and I figured I should probably hurry and blog about it before I forget it all. It all started a couple of Fridays ago when Maksim started vomiting. This occurred a couple times a day for a couple days, then progressed by Sunday. His appetite was pretty diminished, and by that Monday, he had also started having some diarrhea. Worried about his hydration status due to his poor urinary output, I scheduled an appointment to see a pediatrician that day. Fortunately, the doctor wasn't too concerned about his hydration, but he did detect a significant ear infection that required an antibiotic.
We went on our way hopeful that the next day would show improvements. Unfortunately, the diarrhea and vomiting worsened on Tuesday, as well as his urinary output and oral intake, so I took to the doctor again on Wednesday. After seeing him in the office, Dr. Anderson insisted on admitting him to the hospital for IV fluids.
I forgot to mention that on Tuesday night, he also began coughing. It didn't sound like a cough from his lungs, but he would cough and cough and cough and then gasp for air, so much that the first thing that crossed my mind was pertussis. Scary. I also told this to the doctor, so he wanted to order an X-day and respiratory infection panel with the admission to rule out dangerous infections.
So, this was definitely not how I planned on spending my eve before thanksgiving, but off we went to the hospital. Fluids were started, and they helped a lot. Maks only threw up once and had diarrhea once that day at the hospital. His chest X-Ray was negative for active infections, and the infection panel came back just indicating rhinovirus (the common cold). His cough continued to get slightly worse, but he was maintaining sats around 93%, so he was good to go home. We were blessed to be discharged fairly early on Thursday and got to spend Thanksgiving as a family at the Belnap house. My parents even got to join us!
The cough continued all through Thursday, Friday, and Saturday, and each of those days he had several coughing fits which resulted in vomiting up the little bit of food he had been eating, which was around half of what he usually eats. He only eats formula, so decreased food intake also meant decreased fluid intake. By Saturday night, he was vomiting and coughing repeatedly so much that he showed signs of respiratory distress, and after we tried all of the breathing treatments we have at home to no avail, we headed to the ER.
Once there, they did another breathing treatment, this time with duonebs, and also gave him some oral decadron. This seemed to help his cough calm down a little, but he was unable to keep his sats above 87%, so they admitted him for oxygen.
Here is where the story gets annoying. Once he got to the pediatric floor, they never put oxygen on him. His sats were around 87% throughout the night, and he had several drops into the low eighties and high seventies, but they never put it on! So, the doctor comes in the next day, listens to his lungs sounds over his clothes, and never observed for any retractions, and said "well, he didn't need any oxygen last night, so I think he should be good to go. I will send him home today." We questioned him about the oxygen, and he said he wouldn't send him home with it. Basically, he never assessed Maks, he just went off what the floor nurses said. His sats were 86-87% when she unplugged the oximeter. Why in the crap did they admit him for oxygen and never put him on it?!
I was furious the whole rest of the Sunday, partly because of the wasted time and money associated with a pointless admission and partly because I was mad at myself for not being more forceful with the doctor. He should have stayed and been put on oxygen like it was initially ordered.
Maks continued the forceful coughing and vomiting on Sunday and into Monday morning. I scheduled the earliest appointment with his regular pediatrician, but unfortunately was not able to get an appointment until 3pm. In the meantime, I called the unit manager on the pediatric floor and gave her an earful and requested an explanation for what happened. Still waiting for a response from her.
When we finally got to Maksim's appointment, he was pretty exhausted. He had started retracting and struggling more to breathe. The cough wasn't as forceful and frequent, but it sounded deeper, and when I listened to him with the stethoscope at home, his lung sounds were coarse.
At the appointment, I also gave his pediatrician an earful about our experience the day before. He listened patiently, and I was nice, but I told him he better never send Maks to the hospital again for anything that I can do from home, such as IV fluids or oxygen. He listened, then did his assessment, checked his lung sounds, then his oxygen sats. When he saw his sats were only 80% and his lungs were so coarse, he scooted his chair back, sat there for a minute, then said, "you are not going to be happy with me."
So here we are. We were sent to the hospital immediately from his office, and Maks was placed on vapotherm (oxygen which also provides positive pressure to help ease the burden of breathing) at 3L with 30% fio2 and around the clock chest percussion therapy (ie beating the crap out of his lungs), breathing treatments, and suctioning. He is also receiving antibiotics for the lingering ear infection and possible pneumonia, and oral steroids. The chest X-ray done yesterday came back showing no signs of active pneumonia, but showed hyperinflation indicative of bronchiolitis and of course evidence that he is a preemie white boy with bronchopulmonary dysplasia (chronic lung disease). The doctor said to plan on being at the hospital for at least the remainder of this week and maybe into next week. He also said it is possible he will be sent home on oxygen.
Last night and today have been very stressful. He started out on oxygen of 3L and 30% fio2 last night, and by morning, he was requiring 50%. He struggled this morning and was very sleepy and lethargic, but he seemed to perk up a little by late afternoon. He is starting the night tonight at 4L and 60% fio2, so I am afraid to even go to sleep because of fears of what he will be like when I wake up. He also lost several ounces of weight today in addition to the several he lost last week. He is now down to 14lbs 5 oz.
Having Maksim in the NICU was one of the very hardest things I have ever done, but since we have been able to finally be home as a family, there is such a void now that we can't all be together. One of us is always with Maks at the hospital, and I am sure Milyn is wondering why she is being left with others for so long. Not to mention her birthday is Sunday, and I haven't even gotten things ready for it. I hope and pray she knows that mommy and daddy love her!
I also pray for Maksim to get well and for me to have the faith for that to happen. I know this is just the beginning of our winter life for the next several years, and it scares me to death to think of having to see him like this so frequently, especially since something like the common cold has taken such a toll on his little body. Can you imagine if he actually did have pertussis?! I guess I better just toughen up and prepare myself, as all of the doctors have said it is inevitable. Our family has been on lockdown already since before October. We never go anywhere as a family, Maksim never goes with us to church, I work from home, Milyn doesn't go to daycare, Logan doesn't work around sick people or people in the community, we don't take him to dinner, we hardly have babysitters. I just keep thinking of everything we do and don't do to protect him, and I get discouraged thinking he still got sick.
We ask for your prayers and faith for him to get well and to stay out of the hospital as much as possible. Please pray for our Miracle Maks!
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