We found out that there were several cases of the Norovirus going around 3 West at the end of November. Many patients in the unit were put into isolation rooms, Steele started showing signs of a runny nose and cough. An order was placed to have a swab culture evaluated in the lab which takes 48 hours to complete. This was done on Black Friday of course. Ryleigh and I caught colds most likely from her Pre-School cohorts. We had limited contact with Steele at the hospital. I quarantined myself of Thanksgiving day to the room at RMH, it was the most depressing Thanksgiving ever, but necessary. Steele contracted the cold virus through one of us or some other virus that was going around on the 3rd floor. Hospital infections and viruses are a huge concern at a hospital, so in the future, if anyone is showing signs of being sick, DO NOT GO. I know it seems like common sense, we took every precaution possible with gloves, masks and an arsenal of hospital grade hand sanitizer.
Steele was moved to an isolation room to avoid any additional exposure and wait for the culture results to come back. The isolation room is very comfortable with lots of space and a bed, but it comes with a price. Adult supervision is required at all times. There is a nurse station that is monitoring his vitals, but the nurse also has up to two other patients. Steele was having these choking episodes that required attention to remove the blockage with suction and also calm him down after he could catch his breath. The nurse team can check in and give him the scheduled medications, but it scared Rachel and I to not have someone in the room if he could not come out of a "choke".
December 6, 2015
Steele was moved to an isolation room to avoid any additional exposure and wait for the culture results to come back. The isolation room is very comfortable with lots of space and a bed, but it comes with a price. Adult supervision is required at all times. There is a nurse station that is monitoring his vitals, but the nurse also has up to two other patients. Steele was having these choking episodes that required attention to remove the blockage with suction and also calm him down after he could catch his breath. The nurse team can check in and give him the scheduled medications, but it scared Rachel and I to not have someone in the room if he could not come out of a "choke".
December 6, 2015
I had planned a trip back to Portland from 11/30 - 12/4 to make sure the house had not burned down and help my long-term substitute grade finals and prepare for the start of Winter Trimester. Upon my arrival in Portland, I got a phone call from Rachel that Steele's Glenn surgery was scheduled for January 5th. I was hoping it would be before Christmas. The Pediatric Team decided to schedule it after the holidays due to key team members taking vacation time and you always want the "A-Team" around for these complex surgeries. This meant I would have to take additional time off before returning to Portland. Luckily, that will work out and I can stay until the MLK holiday.
Steele was DISCHARGED from 3 West on Friday, December 4th. Thanks so much to Jessica Engelson for helping get Steele and Rachel moved out of the hospital, back to RMH, picking me up at the airport, and picking up Ryleigh from the Colorado Residence. We arrived back at RMH and there was Steele in our room! Our tiny room at RMH is jammed packed with all of his baby gear and 3 other bodies trying to share the space. Let's just say the Thwing's are getting really familiar with one another. We are looking into moving out of RMH and into a small apartment to keep our sanity through the rest of Steele's care here. More on that coming up this week.
On Saturday, December 3, Steele's NJ tube came loose and he ripped it right out. Rachel and I were worried about this because it takes a RN to place it back in the correct location. This is not like the NG tube that we are familiar with and have been trained to place back on our own. Our discharge instructions were very clear if this happens, go to the Emergency Room and call the Pediatric Cardio Attending. We loaded up everyone in the car and headed over to the Emergency Dept. at Stanford.
We were informed that none of the staffing in the Emergency Unit could place a new tube NJ, so we had to wait for a RN from CVICU. Finally, the RN travelled from LPCH to the Stanford side and began the grueling process of tube placement with Steele. These are never fun for a parent, it is an awful experience for everyone. Rachel took Ryleigh out of the room while we worked to get the tube placed. The tube is inserted through his right nostril and is supposed to travel down into your throat, into the stomach and final destination is the small intestine. This took 3 attempts, he kept gagging on the tube which detoured it's route right out of his mouth. Here's a pic of all the tube options:
Steele was DISCHARGED from 3 West on Friday, December 4th. Thanks so much to Jessica Engelson for helping get Steele and Rachel moved out of the hospital, back to RMH, picking me up at the airport, and picking up Ryleigh from the Colorado Residence. We arrived back at RMH and there was Steele in our room! Our tiny room at RMH is jammed packed with all of his baby gear and 3 other bodies trying to share the space. Let's just say the Thwing's are getting really familiar with one another. We are looking into moving out of RMH and into a small apartment to keep our sanity through the rest of Steele's care here. More on that coming up this week.
On Saturday, December 3, Steele's NJ tube came loose and he ripped it right out. Rachel and I were worried about this because it takes a RN to place it back in the correct location. This is not like the NG tube that we are familiar with and have been trained to place back on our own. Our discharge instructions were very clear if this happens, go to the Emergency Room and call the Pediatric Cardio Attending. We loaded up everyone in the car and headed over to the Emergency Dept. at Stanford.
We were informed that none of the staffing in the Emergency Unit could place a new tube NJ, so we had to wait for a RN from CVICU. Finally, the RN travelled from LPCH to the Stanford side and began the grueling process of tube placement with Steele. These are never fun for a parent, it is an awful experience for everyone. Rachel took Ryleigh out of the room while we worked to get the tube placed. The tube is inserted through his right nostril and is supposed to travel down into your throat, into the stomach and final destination is the small intestine. This took 3 attempts, he kept gagging on the tube which detoured it's route right out of his mouth. Here's a pic of all the tube options:
Steele was "NJ"
After an X-ray for correct placement, we were cleared to go. We all left the ED and as soon as we walked out the last set of doors, he had spit out the tube through his mouth! Turn an about face, right back into the ED for help. He began to choke on the tube since it was bottle necked between his nasal cavity and mouth. We asked for immediate help, and the tube was removed until we could go for round two. Again, a Certified Pediatric RN had to be paged, it was 9:00 pm. Rachel had to go and took Ryleigh. The plan was to have me call her and pick Steele and I up when it was done. This is where the zombie night began.
He was scheduled to receive the bulk of his medications at 8:00 pm, essential heart and pain medications. Rachel and I were worried about getting him off hi schedule, so we asked for a rescue dose of Ativan delivered subcutaneous. That would last for a bit, but I had to wait another hour before the next RN could try the NJ tube experience. This time it took 2 tries to get it right and an X-ray later. I gave him his medications 1.5 hours later than scheduled per advice from the ED Attending. So, at this point he has not had any food for nearly 5 hours, he is fighting withdrawal and has had 5 tubes down his throat.
10:00 pm, talking with ED Nurse for discharge again, I look down at the table and he has ripped out the tube again! The nurse tries to place it back in, but I knew it was not right. They called for an X-ray to make sure it was placed correctly. At this point, I said "Enough". No X-ray, no NJ tube, call the Children's Pediatric Attending and send then down to the ED.
11:00 pm, still no feeds and needs his medications again. Steele and I are situated right on the edge of the "Adult" side of the Emergency Department. I began hearing these loud cries from a man "Stop, Stop!" "Don't, Don't!" All of the sudden there are alarms, security, and medical staff running around to the source of these outbursts. This continued on for another 15-20 minutes with a few more adult word exchanges before our doors were closed and curtains drawn. I never found out what exactly happened but this was not a place that you want to be on a Saturday night waiting for your baby to get help.
11:30 pm, no feeds, no meds. Pediatric Attending shows up. We discussed how Steele is most likely not going to take the NJ option anyomore and we should move to the "NG" option for feeds and meds. This means being admitted back to 3 West in LPCH. Rachel is waiting outside the hospital with Ryleigh in the car. I tell her the disappointing news and I will stay with Steele until we are moved to 3 West.
2:30 am, no feeds, no meds. Steele and I are transported to 3 West. He his immediately given an NG vs. NJ, which goes smooth. Third X-ray given for the evening. Medications are given, luckily I had them in my backpack, so they would not have to be ordered. Rachel still had a supply of milk in their freezer, and the feeds went back on. I hung around until all was settled and complete. Steele finally went to sleep and I snuck out to get some rest at RMH.
3:30 am, RMH house is not open and Rachel is not responding to the phone calls. I turned around and went back to hospital. Grab a pillow and some blankets. Try to sleep, no such luck.
7:00 am, get some breakfast and take the shuttle back to RMH. Back to sleep around 8:30 am.
He was scheduled to receive the bulk of his medications at 8:00 pm, essential heart and pain medications. Rachel and I were worried about getting him off hi schedule, so we asked for a rescue dose of Ativan delivered subcutaneous. That would last for a bit, but I had to wait another hour before the next RN could try the NJ tube experience. This time it took 2 tries to get it right and an X-ray later. I gave him his medications 1.5 hours later than scheduled per advice from the ED Attending. So, at this point he has not had any food for nearly 5 hours, he is fighting withdrawal and has had 5 tubes down his throat.
10:00 pm, talking with ED Nurse for discharge again, I look down at the table and he has ripped out the tube again! The nurse tries to place it back in, but I knew it was not right. They called for an X-ray to make sure it was placed correctly. At this point, I said "Enough". No X-ray, no NJ tube, call the Children's Pediatric Attending and send then down to the ED.
11:00 pm, still no feeds and needs his medications again. Steele and I are situated right on the edge of the "Adult" side of the Emergency Department. I began hearing these loud cries from a man "Stop, Stop!" "Don't, Don't!" All of the sudden there are alarms, security, and medical staff running around to the source of these outbursts. This continued on for another 15-20 minutes with a few more adult word exchanges before our doors were closed and curtains drawn. I never found out what exactly happened but this was not a place that you want to be on a Saturday night waiting for your baby to get help.
11:30 pm, no feeds, no meds. Pediatric Attending shows up. We discussed how Steele is most likely not going to take the NJ option anyomore and we should move to the "NG" option for feeds and meds. This means being admitted back to 3 West in LPCH. Rachel is waiting outside the hospital with Ryleigh in the car. I tell her the disappointing news and I will stay with Steele until we are moved to 3 West.
2:30 am, no feeds, no meds. Steele and I are transported to 3 West. He his immediately given an NG vs. NJ, which goes smooth. Third X-ray given for the evening. Medications are given, luckily I had them in my backpack, so they would not have to be ordered. Rachel still had a supply of milk in their freezer, and the feeds went back on. I hung around until all was settled and complete. Steele finally went to sleep and I snuck out to get some rest at RMH.
3:30 am, RMH house is not open and Rachel is not responding to the phone calls. I turned around and went back to hospital. Grab a pillow and some blankets. Try to sleep, no such luck.
7:00 am, get some breakfast and take the shuttle back to RMH. Back to sleep around 8:30 am.
Yes, a very long day to say the very least. Steele is tolerating the new NG feeding and oral medications. LPCH wants to look at another discharge tomorrow (12/7).
The journey goes on....
The journey goes on....
Oh man. Thank you for this update, though certainly not the news we continue to pray for every day. Brenden, your writing is beautiful and amazingly detailed; thank you. Sending love all the time, day and night.
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