December 10, 2009
The day after Thanksgiving (2009) James had an appointment with his pediatrician and got 3 vaccinations: Rotavirus, Hib (Haemophilus influenza type b) and IPV (Inactivated polio vaccine). By Saturday James had mucus constantly running out of his nose. For a while, we just couldn’t keep up with suctioning; it was just too much! We put James to bed around 9:00 pm with a little runny nose.
At 1:00 am Sunday morning Stacy got up to feed him as she normally did. She gave him a little suction in the nose and mouth and came back to bed. At 2:00 am she was up again to take down his feed. (Side note: this is one benefit of being tube fed. You can eat while you sleep!) James’ sats (oxygen saturation of the blood) were in the high 80s and low 90s. She tried to suction his nose and mouth, but was not getting much out. His sats were slowly dropping. By 5:30 am we decided to put him on a little bit of oxygen. (Because of his medical issues, we were provided with oxygen tanks from our home health provider.) Stacy went back to bed while I stayed up with him. When Stacy got up again at 10:30 am, we decided to call the pediatrician and take him to the ER.
One thing we learned pretty quick is that when you bring a baby into the ER on oxygen, you skip to the front of the line. We were immediately taken to a room where they started to assess him. Because he was in respiratory distress, they tried Atrovent, which is a bronchodilator that relaxes muscles in the airways and increases flow to the lungs. They took a chest x-ray which looked clear. Because of the H1N1 pandemic going on at the time, they tested James for the virus, but the preliminary results came back negative. They sent him up to the PICU (Pediatric Intensive Care Unit).
After further assessment in the PICU they thought James had a respiratory or viral infection and started him on an antibiotic, but was stopped because his blood panel came back normal. He had a fever so they gave him rectal Tylenol to try to bring it down. His stomach was very distended, so they used his g-tube and extension to relieve some of the air and gas that was built up in his belly from breathing so rapidly. They had him on up to 4 liters of oxygen trying to keep his sats up.
On Monday, James was given another chest x-ray and this one showed that he did develop pneumonia in the right lobe and was put on another antibiotic. He was given saline solution and Pedialyte because he was dehydrated. They did a renal ultrasound to see if his kidneys were working right and if there were any blockages because his blood pressure was so high. The ultrasound came back fine with no problems or obstructions. He tested positive for RSV, or Respiratory Syncytial Virus. According to WebMD, “Respiratory syncytial virus (RSV) is a common, and very contagious, virus that infects the respiratory tract of most children before their second birthday. For most babies and young children, the infection causes nothing more than a cold. But for a small percentage, infection with RSV can lead to serious, sometimes life-threatening problems such as pneumonia or bronchiolitis, an inflammation of the small airways of the lungs.” This really kind of pissed us off. Our pediatrician recommended a medication, palivizumab, that could have prevented RSV, but our insurance company denied it because he didn’t fit the criteria. We’re not really sure what that criteria is or if they just denied it because they were still trying to swallow the large bill from James’ two months in the NICU.
Because RSV is so contagious, James was put in isolation. Every time a nurse, doctor or anyone came into the room, they had to “suit up”. They had to put on disposable masks, and gowns before entering and thrown away upon leaving the room. We even got suited up while in his room.
James was put on diuretics hoping that they would force him to pee out any extra fluid in lungs or system. They were able to ween his oxygen down to between 1 and 2 liters, sometimes going as low as ½ liter, although he was still struggling to keep his sats up. They did a third x-ray in the evening which showed fluid and/or irritates in both lungs.
Our pediatrician stopped by on Tuesday and said that James had a rough night with his secretions. They will talk during rounds, but warned us that a tracheostomy conversation may be coming soon. (We had conversations about a tracheostomy (or trach for short) when James was in the NICU, because of his inability to suck or swallow.) The pediatrician also told us that he does not have RSV, but Enterovirus, which he described as a bad cold.
The PICU pediatric nephrologist (kidney doctor) ordered an ECHO of the heart to make sure it is pumping correctly because his blood pressure was so high, and also a kidney ultrasound. The results of both the ECHO and ultrasound were good. They did not see any problems with his heart or kidneys.
I could go on and on and cover everything that transpired over the course of his stay at the hospital, but that would make for a pretty long post and I don’t think too many of you would actually read it. So to summarize: The healthcare team went over all of James’ “problem areas” and all of the tests that were done and came up with a game plan. They decided to focus on fixing one thing at a time instead of trying to fix them all simultaneously. They were in agreement that the respiratory infection was the most serious so that would be the main focus. They also thought that the respiratory distress, which was causing him to gasp for air, was putting air into his stomach and causing his stomach to become distended. The hope was that once the pneumonia had cleared up and he was breathing better, James would not be sucking all the air into his belly. In the meantime, James would not be getting his normal feeds, but instead be given IV fluids to give him the nutrients he needed. They were also using his g-tube to relieve excess air and gas buildup in his stomach.
James (and Stacy) ended up staying in the hospital for about 10 days before he was able to come home. I went back to the NICU routine…driving 30 minutes to the hospital and 30 minutes back home every day. I had done this drive so much that I could probably do it with my eyes closed!
We knew when we brought him home from the NICU that things weren’t going to be easy. We were newbie parents to a cute little guy with several medical issues and we were still trying to navigate this new world that we were in. We were doing our best, and yet there we were, back at the same hospital that he had just come home from a month ago. Hopefully we can keep him healthy so we don’t wind up back at the hospital again.
One Final Note:
If you haven’t read about James’ Medical Binder, I encourage you to do so. A lot happened over the course of James’ 10 day stay at the hospital, and Stacy took notes that she eventually typed up and put into the binder. I don’t know about you, but I have a pretty bad memory. By having written notes, you won’t forget everything that happened in the hospital, what tests were done, what the test results were, what medications were given, what doctors were involved, etc. If you don’t have a notebook with you, use a notes app on your phone or tablet if you have it with you. Or ask a nurse for some paper and a pen.