Sunday, July 15, 2012

Saturday in the ER? Why not!

As you all know, Frankie had been off of oxygen since Mother's Day. Well, around the beginning of July his saturations while he was sleeping kept dipping into the high 80's. The doctors want him to be 90 or better. We got new probes for the machine and a new pulse ox machine all together but it was definitely Frankie dipping down. We had started off just putting the oxygen on while he was asleep. As each day progressed he needed it more often and at a greater amount. I had called the doctors right away to let them know what was going on and had spoken to a nurse practitioner of PPHN whom I have never met, ever. We spoke briefly and she said that if things continued to worsen, call back. As things would have it, they worsened. A lot. For more than a week... yes, a WEEK. I tried calling back and speaking to a nurse or the doctor about what was going on. We didn't feel as if it were ER worthy just yet until yesterday morning. After calling and leaving countless messages with no return call, I got extremely upset. You don't fuck with mama's baby! Thanks to an amazing family friend who lit a fire under their asses, I heard back on Friday morning (Thank you Donna!). The cardiologist finally called (Dr. Grady) and I told him I didn't feel as if it was an error on his behalf or his nurses. I believe it was an error on behalf of who answers the phones for not giving my messages. The lack of communication left me dumbfounded! I could not believe it! I seriously was about to just drive down there and walk into the office! Anyhow... Dr. Grady said that if Saturday morning comes and he still isn't doing well, take him to see his pediatrician, have them assessed there. From there, they will call him and discuss the next steps....

Saturday morning:
At 8am I called the pediatricians office. Frankie's primary doctor was out of town so we saw Dr. Madden whom we love as well. He took a look a Frankie, got his saturation level, listened to him breath and then said..... It's not a matter of if you're going to the ER or not it's a matter of.... should I call an ambulance or do I think you guys can make it there quick enough! So, obviously we have a problem here! Frankie's saturation level was sitting at 88 on 2 liters of air! That's a lot of oxygen to be sitting low. Joe and I quickly packed Frankie up as Dr. Madden called Children's and warned them we were coming and as he put a call in to the cardiologist on call this weekend (who happened to be Dr. Grady! Boy, karma knows how to work, eh?!). Down to Children's we went.

ER: The first thing they did (as usual) was listen to Frankie. A couple people said his lungs sounded wet but the cardiologist fellow who has seem him lots (and he LOVES her. She's a pretty lady and he sits quietly while she listens to him breath and he did not do this for ANY other doctors that day!) said that he sounded okay. He also had a low grade temperature of 100.8. We shlepped Frankie over to get a chest x-ray. That came back good, thankfully! Frankie always has a little bit of backed up fluid in his lungs (not a lot just a little. In comes Lasixs for this reason) and his x-ray looked the same as his previous one. Next, they drew labs and inserted and IV. We waited forever for the lab work to come back. Everything looked okay except his white blood cell count was elevated. They swabbed him for 5 major viruses but it came back negative, but there are a million viruses. Since his blood count is elevated they suspect that he is just fighting a bacterial or viral infection. Frankie doesn't have a stuffy nose but he does have a mild cough. Frankie and I were both sick in mid June and they said this could be it lingering. Since he has complications, he will hold onto a cold much, much longer than the typical child. THIS IS WHY I NEED ALL OF YOU TO WASH YOUR DANG HANDS! I'M SERIOUS!

What's next: We increased his Lasixs to twice a day for 5 days and he was put on a short burst of steroids for 5 days as well. We go back and see his primary pediatrician on Tuesday evening and she will take a good look at him and reevaluate.

Today: He's doing so much better! He slept from 5pm yesterday until 6am today! And, is already asleep for his morning nap. He woke up in the best mood he has since this all started! He didn't wake up once last night! He FINALLY got the rest he's needed. He had been working so hard to breath that he wasn't resting well, not to mention he couldn't catch his breath and would frantically wake up screaming in terror. It was awful. But, he's on the mend and is doing much better today. Thank you God.

That is all for now! I will keep everyone posted of anything new with him and I will let you all know how the doctor goes on Tuesday. Much love!

So sleepy. This is just before he fell asleep. He only had one nap yesterday and it was an hour and in the ER.

 Waiting for the lab results to come back. Watching a little TV.

This morning. My happy Buddha is back!