Well... we saw the endo on Friday for the baby’s 12 day follow up. He looked great, gained weight (almost back to his birth weight of 9lbs, 3oz) and was wide awake looking at the doctor. They have him on 3.75 cortef and 1/2 a pill of florinef every other day.  His 17ohp of his stim test came back at 3000ng/dl. A heck of a lot lower than his brothers 24000 ng/dl!!! Well, the endo told me that since it was done IM instead of IV it would be hard to interpret the results as truly stimulated. I was a little upset that she had not told me this when they went to do the stim test. You can only do it once. So...for those of you still to do a stim test....use the IV not the  Im way... Well, nothing I could do. I figured that even his newborn screen results were much lower than his brothers so maybe that was a good sign that the baby would be a milder CAH. We left the office to go do the labs.  The endo wanted to repeat the lytes and do another renin...

We got to the lab and it was off to a bad start. They couldn’t find his veins...blew two of them and left the tourniquet on for too long. They called another guy in to see if he could draw blood and he commented on how red his little arm looked. I was ready to cry at this point. They ended up taking blood that hadn’t clotted from one vial and put it in another vial...it was a mess. They they were arguing about who’s responsibility it was to process the blood!! It was unbelievable. I was so happy to get him out of there.

The next morning the endo calls at 6am... we have the ringer off upstairs so we didn’t hear the phone. She proceeded to call 3 more times and finally my mom,who is visiting, was downstairs and answered the phone. She asked for my mom to wake me up. Turns out that the electrolytes were way off. His potassium was 6.9 and his sodium was 152 ( normal was 135 to 145). She told me that he was  going down hill fast as common with a 12 day old SWCAH’er. I was so scared. She asked me to give him a full pill of florinef, triple his cortef, give him 1 tsp of salt and bring him to the er. I told her I didn’t have a breast  pump to pump milk to mix the salt into it. Off my husband when to buy me a breast pump. In that time, the doc (fellow) that works with the endo saw the results and called me too. I told him what the endo said and he asked me how the baby looked. I told him that he looked fine. He was wide awake and responding to my voice. He had just had a big dirty diaper and was hungry again. The doc didn’t feel like the baby should be looking so good with such bad results. He told me to just bring him into the ER outpatient lab and he would meet me there. He told me to forget the salt. So I called my husband back home and off we went to the ER to repeat the lytes.

The lady who drew his blood in the ER lab commented on how bruised his arms were and told me that if you leave the tourniquet on for too long after the blood starts flowing that it can hemolize the blood. I didn’t know that!!! She drew blood from his arm and he hardly felt it. One hour later the doc met with us and told us his labs were perfect. Sodium was 135, Potassium was 5.0. I asked if he felt that the extra dose of florinef we gave him earlier and the 3x of cortef had anything to do with making his levels so perfect. He said no because as far off as his labs were the day before, he would have needed fluids etc... to bring him back. So....the moral to the story is watch the lab people...especially if you need an accurate lytes test done. This  experience really scared me to death. Thankfully, it turned out great and we were able to go back to the 1/2 of florinef every other day and  regular dose of Cortef. The fellow feels that he will do florinef for now because the endo feels that it’s better to be safe than sorry but in January we will reevaluate the need for the florinef.  The fellow was even nice enough to call twice on a Sat night to make sure Nolan was doing great. Those are the kind of doc’s I like!!!

Thankfully, Nolan is doing just fine. Eating, sleeping and pooping. The three things newborns do best. Thanks for letting me post such a long description. It’s nice to be able to share!!

Sandra