Ben came home from the hospital last night. He had been moved to the regular Pediatrics floor Monday night and they decided he was well enough to come home yesterday.
He is approx. 5lbs 12 oz (although at the pediatrician today he was 6lbs 4oz so one of those scales are off!). He is not on any oxygen or medicine and has been doing well. We are due to follow up with the pulminoligist in two weeks and the cardiologist in four. We went to the pediatrician today and have to go back on Saturday to assess weight gain and how he is eating.
We have been having quite the day today…I emailed Josh earlier to list things ben learned while back in the hospital:
1) How to drool
2) How to cry
3) How to spit up during and after every meal
We went through four outfits today because of the spitting up. We are going to cut back slightly on the amount of food he is getting (back to 1.5 oz every bottle) and see if that helps.
He is sleeping well but prefers to be near me. Fussy in his crib but will pass out once snuggled next to me on the couch. It makes it hard to accomplish much but he has been through so much, he deserves to be a little bit attached right now.
Otherwise, we are working on a routine again and just getting settled. Looking forward to having a quiet weekend that finally does not involve going to the hospital.
October 2008
5 posts
Not much new to report. The doctors still do not know what brought us in here and most likely never will. Nothing has grown on the cultures but that is not to say it isn’t something that just isn’t showing up. We will just move forward with treating rather than fixating on what was the initial cause.
Ben is still sedated and on a ventilator. We are slowly weaning him off of the drug he is on that is inhaled. They should be done by tomorrow. If he tolerates that, we will slowly try and wean him off the ventilator. Then we can work up to trying to take a bottle again. They have been weighing Ben and today he is supposedly 6 lbs. 2oz. That is good because he is still growing…but it means he will have grown out of all of his preemie clothing by the time he comes home! We are figuring another week and a half or so but that can always change so fast depending on how well he does.
We will most likely have to follow up monthly with a cardiologist and a lung specialist. This on top of the regular pediatrician. But, it is helps him we don’t mind.
We also were told taking Ben on a plane in this first year of life will be banned. The way the pressurize a cabin will just make it too hard for him to breathe. Eventually he should grow out of this though as his lungs continue to make new tissue.
That is really it for now…I’m sure I am missing something so let me know if there are additional questions I didn’t answer…
The past few days have been long. Especially for Josh who is still commuting into work though all of this than taking the train out to Hackensack to visit Ben afterwards. I am continuing to work remotely at Bens bedside. Except for not having phone service, I can pretty much work like usual if not more than I was before. Work is always a good distraction especially since Ben sleeps most of the time.
I’ll start off with what we do know. Ben has pulmonary hypertension. The right chamber of his heart is pumping overtime trying to deliver blood to the lungs. For some reason, the lungs are making it hard to let the blood in so his heart has to pump harder which has made him have an enlarged right chamber. They believe this is a secondary condition, not primary. He has been given two drugs, one through an IV and one inhaled to help with this. Thus far, it has been working and they are already discontinuing the IV one.
The doctors believe he has chronic lung disease based on how long he was previously on oxygen. This will in time most likely repair itself as our bodies continue to create new lung tissue until we are eight years old. This also is most likely not what landed us in the ER.
Ben now has pneumonia. They don’t believe he had this when he came in, but rather based on the stress of everything that happened on Monday, developed it. He has been on antibiotics since we got here so that should clear that up.
As it stands, that is pretty much all the solid information that we have. Ben is acutely ill, that much we know. He is sedated so he is relaxed and on anti anxiety meds so he isn’t as anxious. He cannot come off of the ventilator until he gets better. He has not been tolerating anybody touching him except for me and occasionally Josh. Even something as simple as a temperature check can send him into a severe oxygen desaturation. This has been slowly improving and today he even allowed an echo cardiogram to be preformed without dropping his sats. Unfortunately, an hour later, a temp check plummeted him again. This leaves nurses to walk on egg shells for fear of disturbing him. This needs to improve for him to be considered on his way to recovery.
Since we have been here, we have met with a geneticist who will be doing some testing to make sure there is nothing genetic going on. Some of these tests we will have results this week, some not for at least a month. Genetics is specific enough that only certain labs do certain tests and you must wait on how fast they complete. The longer ones are being sent off to the Mayo clinic and that just takes some time.
We have also met with an endocrinologist because he has some elevated thyroid levels. The endocrinologist is going to watch Ben but does not think it is cause for concern.
We have met with a dietitian who is trying to find the right formula for Ben that he will tolerate and grow on.
Some theories as to why Ben got so sick? Possibly he is having issues with reflux and then is aspirating that into his lungs. Possibly it could be more severe lung disease than previously thought. Most likely it is a combination of all of these things…we will work through each to try and figure it out but that may be a slow process.
Right now, we are focusing on one day at a time…getting Ben strong enough to need less oxygen and eventually get off a ventilator. Getting him to tolerate being touched. Letting the medicine work so that his heart doesn’t have to work as hard. Little steps… Its not the answer anybody is looking for, but its all we have right now.
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.
