Saturday, July 20, 2013

Sweet Baby Boy

So, we have been thrown for a loop again. It seems just like when things start to be normal, we get our butts kicked again. We had Jack have some bloodwork, a follow up hcg, and full panel, liver function, etc. His ALT came back elevated at 70. The pediatrician did not call, but when I did two days after the blood test, she got on the phone fast. They said it could have been exposure to chemo, so for 24 hours I completely stopped touching him (even though I already had been since Monday.) The whole time I am just feeling so numb, can't cry, can't get angry.....

We came in the following day for an appointment to discuss our options and see what it meant.... it turns out it was elevated to ninety when it was drawn from the oncologist (the time when we had to wait two days for results.....) NO ONE TOLD US THIS. Apparently the oncology guy was not concerned with it, because when he called me he said "everything is perfect." Perfect. You can imagine my surprise when I found this out.

Jim and I asked the pediatrician why she had never mentioned to us that he was at 90 8 weeks ago, and her reply was, they never sent me the labs. The office had insisted that we have the labs drawn elsewhere, then did not even bother to follow up. All I have to say about that is that its completely negligent and ridiculous. We wound up storming out after Jim told the Doc he was going to "a real city with real doctors who went to medical school." It would have been comical if it weren't so sad.... In addition to this, our ped contacted the oncologist and spoke with someone I have never even met, whom Jack has never seen, who told them that they instructed us to follow up with CT. I was called personally by the medical director of the entire clinic, Dr. Kolb, and told that everything was fine, his labs were perfect, and all we needed was a follow up beta hcg test in one month. This other doctor is just lying about stuff...... Probably to cover their asses now. Throughout this entire process, not one person has apologized to my family.

So the next step is a sedated CT scan. Jack will have to fast for SIX HOURS (which is going to be torture for everyone involved....) he can have some pedialyte, but thats it. They said that I can be with him throughout the whole process. We are looking into weather we can do this at Children's Hospital of Philadelphia, or if we should just have the exam at DuPont and have it read later by CHOP. Please start up the juju or prayer chain. My little baby is just so innocent and sweet and did nothing to deserve this.....

I did talk to Dr. Sehbai, who told me he doesn't think it was my chemo which has caused it, and that often times, kids have irritated livers.. The condition could be something, but it could be nothing. And the drs didn't even order these liver tests, we were the ones insisting on them all along. So who knows how many babies may have this and appear healthy and it is just never found out? For now, just waiting.....


  1. You are the toughest people I know! Prayers going out... but he will be fine love! XoXo

  2. prayers to you! i know how hard it is to find comfort after so many have let you down.... my lulu went through so much when she was little, and so many doctors failed us..... stand your ground and go with your gut instincts...... that is your little man and he is such a blessing....... he is really lucky to have two wonderful kick ass parents, who are willing to stand up for him and stay on top of these so called doctors..... lulu has suffered dvts and seizures because of negligence...... i pray that jack doesnt have any long term problems due to their lack of concern...... prayers and hugs to all three of you....... do what you guys need to do...... sending mad love. jen.