The Interstage Rollercoaster

When people told us that these post-Norwood babies are very fragile and go down hill very fast, they were serious!  Jayden was home for almost 6 weeks, and things were going GREAT!!  His sats stayed within is baseline (or higher), he always ate really good for us and was generally a happy baby.  On January 23, he was having smaller pees than normal, he was eating less - more often and he was overly tired.  We called into the Cardiac ICU, and they told us to bring him in RIGHT AWAY!  We packed up a  few important things, and headed for the hospital.  When we were about half way there, the hospital called to let us know the ER was expecting us and they had a bed on hold for him in the PCICU.  I sat in the back seat with him on the way there, and kept his oximeter on the entire time.  We got to the ER and his sats were stable.  They did an ECHO on him, and everything looked fine.  Then when they went to run an IV, things got bad.  I am just going to copy and paste my updates from Facebook, instead of trying to retype everything:


Monday, January 24:  
6:10 am:  "Jayden update: Boy, last night was a very tough and emotional one for us!! We took Jayden in originally because he was showing signs of dehydration, and we knew with him being interstage with the shunt, this can be very dangerous for him. The hospital called when we were about 20 minutes out from the hospital to let us know ER was expecting us, the cardiologist was there with the ECHO tech and the cardiac unit had a bed on hold for us. As soon as we got there, they did the ECHO and everything came back fine. There had been no changes since his previous ECHO. During all of this, his sats were in the high 70's and HR was good. (his baseline is 81-85%, so a TINY bit low for him). The nurses tried running an IV on him, but because he was dehydrated, they had to keep poking him. He tolerated the first few pokes okay, but then he started de-satting into the 50's, his HR went up over 200 BPM and he started sweating really bad. I know his normal, and I know his danger signs. I told them they needed to STOP and give him a break, let him settle and catch his breath. They did not listen to me and kept poking him, until he crashed. He dropped into the 40's and they could not bring him back up. A ton of people rushed in, nurses, doctors, respiratory therapists. They put him on oxygen through the mask, and eventually got him up to the 70's. They said they needed to pull the food from him stomach and intubate him to keep his sats steady. By that time, I was feeling nauseous and like I was going to pass out, so I stepped outside for a few minutes and talked to my mom. I also called up to the Cardiac Unit and told them the ER wasn't listening to me, they were making me worse and that I wanted someone from the PCICU to come take him. When we went back in, they were trying to run a central line through his neck. My poor baby had 4 people holding him down, and all of this without any pain management! The cardiac unit called down to the ER and told them to bring him up NOW. They said forget the line, forget the intubation. When they got him up the PCICU, the doctor came to talk to us. She said they NEEDED to run the lines because he was completely dehydrated. She said they were going to sedate him and try for under his collar bone. She said he was de-satting into the teens, so they needed to work fast. We weren't able to go back to see him for a few hours. Finally, they called my cell to come see him. He is on high flow O2 and maintaining his sats in the high 80's. They said as soon as he wakes up and cues to feed, they would feed him. They still couldn't get a central line in, but finally got an IV in his arm. They are giving him fluid through that as well. We visited for a little while, but he was still asleep from the sedation, so we thought we should go get some too! I called a while after we left, and he had eaten 2oz of sugar water, peed, pooped and went back to sleep. I just called a little bit ago and he was eating again, breast milk this time. He is in isolation until they get the results back saying he is or isn't contagious, which could take until Thursday."

6:14 am:  " Thank goodness for PCICU calling for him when they did! ER was insisting on intubation, but Cardiac didn't really think he needed it. So we dodged that bullet!"

6:27 am:  "I was ready to push my way through the crowd around him, and take him up there myself. I plan on talking to someone today, I know my rights and I have the right to tell them to stop. I understand they needed the line to hydrate him, but I truly believe he would have been better of if they had listened to me!!"

10:06 am:  "Jayden's oxygen has been lowered and he is pigging out! He ate 3-4oz every few hours last night. That's my boy :D"

10:19 am:  "He has some sort of respiratory illness. They did labs, but that test can take a couple days. Even though he was still eating some, his fluids are being sucked out of him."

8:52 am:  "Jayden is still in the hospital, but doing a lot better. He is eating his full 4oz at every feed and staying awake with us for a couple hours at a time. They are weaning him off the Milrinone tonight (currently at 0.1mL) and still weaning him off the O2 (at 1.5L and 35%).  Also, his most recent ECHO actually looks better than his last one!! All of his tests and labs are coming back negative, so there is no explanation yet to why this happened."

Friday, January 27:  

2:38 pm:  "Jayden update:

They completely weaned him off the Milrinone last night, and the O2 came off this morning. They want to monitor him for 24 hours, then we should get to go home. He is staying within his baseline for most of the time, but has dipped to 76% a couple times for a few moments. He is eating well, and is awake and alert much more often. The attending doctor this morning did say they may want to do a heart cath, if his cardiologist agrees. They want to do it "electively", so they will plan for us to come back after he is fully recovered. We have an ECHO on the 2nd, as well as a Cardiology appointment. All tests and cultures came back negative, so this is a big mystery!!"

7:50 pm:  "Right after I posted this, I went back to the hospital. He had thrown up twice, was super pale and could not get his sats above 80%. They put the oxygen back on and ran blood tests. Looks like we won't be going home tomorrow :("

10:40 pm:  "His hemoglobin is at an 8. Also, they said before his lungs were clear, but they have been suctioning thick mucous out today, so I asked them for an X-ray."

Saturday, January 28: 

1:38 pm:  "Jayden will be getting his transfusion any time now. His sats are dropping low (for him), even when he is on O2. Hoping this will be the pick-me-up he needs!!"

3:38 pm:  "I guess they called the attending last night, and they were satisfied with his hemoglobin numbers (8), so they told us last night they were not going to transfuse. Then they called us this morning and asked us to come in as soon as we could so we could sign the forms, because they had changed their minds. They will be giving him 45mL over 4 hours."

8:39 pm:  "Nobody is going to like me there tonight. I am not happy, and I am not playing the "wait and see" game anymore. I keep telling THEM that there is something going on, and they don't see to want to find it. Getting really annoyed.  I am going to head over there while I have this built-up anger!! I am sick of seeing my poor baby go up and down with no explanation."

10:40 pm:  "I went in and made it very clear to them I was not going to have my concerns dismissed any more. I brought up every concern I had, and finally felt like someone was listening to me!! After I was done, she assured me all of my complaints were valid and she repeated everything back to me to assure she passed everything along. She paged the team for us, and now we are just waiting. I also told her that we were getting ready to have him transferred somewhere else. I felt bad for being a little mean, but I told her I need to protect and take care of my baby."

COMFY BABY  :)