Bens Latest Hurdle

Ben was readmitted to the hospital yesterday. Quick story is he wasn't feeding well for the past week. Taking 30 minutes to finish 2 oz as opposed to the usual 10 minutes. But, he would get them down so that alone didn't concern me so much. My dad is in town so we all went on a boat cruise around Manhattan on Sunday. Ben slept for most of it and wasn't particularly interested in waking up to eat for most of the afternoon. He was particularly cold Sunday night but we thought he has just been out in the fresh air and that was affecting him. Sunday night he refused to eat at 11p. He took 1 oz at 1a and refused anymore. He did eat 2 oz for Josh at 5am but then wouldn't eat for me the rest of the morning.

Also, we had been to the pediatrician the previous Friday and I expressed concerns with how slow he was eating. He also turns slightly blue with feeds (and over the weekend a few other times). She wasn't overly concerned but set us up with appointments for a Gastroenterologist. (sp??) She also had us set up a chest xray for this week bc i expressed concern about his breathing still seem struggled to me.

Anyway, I changed Bens diaper at about noon yesterday and realized he was really cold again. I took his temp this time and it was registering at 92.7 under his arm (normal for arm is 97.6). I took it again with the other arm...the same. I took it a third time with a diff thermometer...the same. I immediately wrapped him up and called the pediatrician. They said someone would call back in a bit. I them decided to google the temp and immediately realized it was classified as moderate hypothermia and was extremely serious. I called the pediatrician back and she said to bring him in...at 345p. I asked if it was safe to wait that long...she agreed to see us at 115p.

Got to the drs office which was in Hoboken. They had someone come out to the waiting room with an ear thermometer. I explained that his ears are too small to use an ear thermometer. They tried anyway. After debating with them again, they got the arm thermometer. It registered 93. They decided to bring us into an exam room. After much debate...a rectal thermometer was produced.It is the most accurate way to take temperature. 94.4 (should be 99.6). AT this point I was enlightened that both the Hoboken and Jersey City emergency rooms would not be able to get an IV into a baby of Bens size. It was imperative that we get him to a childrens hospital. The debate was go into the city, or go to Hackensack or St. Joes. Both about 30 minutes from where we were. The pediatrician called Hackensack to see if they would take us...while on the phone with then, Hackensack said " The parents cannot drive a baby anywhere who has that low a temp...call 911 NOW". So, next showed up the Hoboken police followed by the EMTs. They are legally obligated to take Ben the closed place that could care for him so the pediatrician had to fight with then to get them to take us to a childrens hospital. They called their supervisors, determined it was in bens best interest to go to Hakensack...and we started to load him into the ambulance. Once of the police officers volunteered to drive the ambulance rather than wait for another crew to show up to save the 3 minutes it would take. That is when I realized how serious this was. I rode in the ambulance and left my dad behind to deal with the car.

I called Josh from the ambulance and he immediately left work. Unfortunately my dad didn't have a cell phone on him so he was already on his way to the hospital and we couldn't get in touch with him. Luckily, we still have a zip car membership so josh was able to reserve one and follow close behind.

We made it to Hackesack where we began an long course in the Emergency Room. Although Ben was brought in crying and responsive, he had had enough and gave up on the table. Turned blue and all that and they had to put him on a ventilator. Hard for us because it has been so long since he was last on one. But he just was too tired. I stayed in the room through various IVs...catheters...blood drawing...trying to keep him breathing...warming him up...ect. They tried to do a spinal tap but ben wouldn't allow it. Once turned over and curled into the C position, he stopped breathing again. Out came the vent tube, and he was bagged again. Then they had to re-intubate him. It went on for about 3 hours

Finally Josh arrived...and Ben was brought up to the PICU (pediatrics ICU). Once you leave a NICU you can't go back bc you have been exposed to the outside world. So...i am writing from the PICU. More similar to MGH than Mt Sinai. In our own room...only 12 beds here. No fellow or interns...just three dedicated doctors. Sigh.

We don't know what is wrong. I can tell you the few things we know but end of the day...we are waiting to find out what is wrong. Ben is very sick. His right ventricle of the heart is enlarged because it has been pumping hard into the lungs but the lungs aren't making it easy. They don't know if this is a primary or secondary issue. We are waiting for cultures to come back tomm or Thurs to tell us if its an infections. He is being seen by a geneticist, a neurologist, a cardiologist, an endocrinologist...we just don't know. At this point, they are "supporting him". aka. keeping him alive...until we know more. I don't know when we will know or anything really.

I don't have great cell service...I do have Internet but depending on what is going on...not always by the computer.

I'm sure you have a million questions...we do too. I don't mind you asking, I just can't answer everything and it is very overwhelming for us to be back here in such an uncertain position. I will reach out when I can, otherwise please don't be offended if I don't get back to you right away. We are trying...its just a lot. We were told stuff like this can happen...but until it does, you aren't prepared. Its almost harder to come back here now when we thought we were finally moving forward.