For all you newcomers, Welcome! For you veterens, I haven’t given an update in a while, and debated whether to share our story, but the vaccination question is out there now. I didn’t want to share this to deter parents from getting shots, as I fully believe in vaccinating my children, especially because they are already immune compromised being premature, but I think there is a definite need to true studies and concrete information regarding them.
Anyway, our story is bad around here. As many of you know Carter was born March 25th at 29 weeks gestation. He had only a PDA with two rounds of meds, a UTI, and ingunal hernia surgery on both sides, so a very minor course. Carter came home on May 17 over 6 lbs and doing great. We had our 2 month well baby visit on June 2nd and Carter was 8.5 lbs, and doing fantastic. Our ped (as recommended by the CDC) wanted to keep Carter on the immunization schedule of a full term baby as that is the recommendation. We agreed and did the two month shots. As all other babies, Carter was fussy after and refusing feeds, so I gave him tylenol and decided to stick it out. By midnight when he still hadn’t eaten, I called the Dr. and asked how long I should let him go before getting fluids as he is still small. He did not have a fever, was cool to the touch, so the Dr. said let him go until morning and then bring him in.
The next morning, I go two ounces in him, so I thought he might be turning the corner, but he didn’t look good to me, and he was not as awake as he had been, so I called the Dr. and asked if he would see him anyway. They gave me an appt, and I went to the office. When I got there, the nurse took us right in and tried to get a temperature on him. (This is a valuable lesson!!!!). She kept saying “why aren’t these working???” as the thermometer wouldn’t read Carter’s temp. Well, the thermometers in the office bottom out at 95 degrees. When the doctor came in and took a rectal temp, Carter was as 91 degrees and his oxygen sats were in the 80’s. The doctor didn’t believe his information (Again, a valuable lesson!!!!), and said I should go to the ER to be sure, but he thought he was fine. I called David from the office to let him know I was going, and I headed to the ER by car (about 20 minutes from my Dr’s office). By the time I got to the ER, the nurse took one look at him, grabbed him from me and started doing chest compressions. Carter had no pulse and was below 90 degrees. They had revived him in the ER and sent him to the pediatric ICU on life support on Saturday June 3rd. His pupils were non reactive and he was in horrible shape. He literally died in my car on the way there, and they had to bring him back to life.
After 5 days he finally came off the vent, breathing on his own and eating again. So far all tests are normal, MRI, EEG, EKG, blood work, spinal tap, etc….. He has no signs of an infection, or anything. They have no idea what happened. They think he may have gone into shock from the pertussus (DTaP), but that reaction is something like one in a million. They did some endocrynology testing along with some metabolic testing, but all tests including PKU repeat were normal.
He came home, finally, on June 13th on an apnea monitor, but all are now convinced it was the immunizations. Our pediatricians, have now asked us how we want to proceed with immunizations. WHAT???? I am not qualified medically to make those judgement calls. The Pertussus is out of the question, while that is one thing I would like him protected from. I have contaced an infectious disease Dr. at Yale and have asked him for guidence. Preliminarily, he is suggesting splitting all shots, (no combined shots) and doing them one at a time. He also feels the Pertussus shot is to blame and they do make a DT without the P so that is the one I think we will do.
Again, I believe in immunizations and feel they are very important, but we are in a position where this could be life and death for Carter in both scenarios. I wish we had more information that was concrete regarding these.
Carter is starting to show signs of reflux (who wouldn’t from this kind of stress!) so we have him on pepcid and an appt with the GI doc for June 28th. We have him on Nutramigen already and I think by Wednesday we will be on Neocate. He doesn’t scream like Dylan did, but has some sanifer’s symptoms with the twisting of the neck, etc. He can twist his body in a way no baby should be able to! He will try to sleep like that as well. Still, the reflux is not nearly as bad as Dylan, so we are thankful for that.
Anyway, sorry this is so long, I just thought I should share.
Ann Marie
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I am so glad he is doing better now. Thanks for the update but as Laura said, I wish it could have been for different circumstances. I have been wondering about you guys. I’ll say a special prayer for you all and wish you luck with your work situation!
