Monday, June 15, 2009

Seriously No Answers Still?

If these updates had sound you would hear deep sighs and tired and worried parents trying to voice frustrations but clinging on to hope. Anxious and eager for the day when both children are home HEALTHY and we are not worrying about their day to day well-being.

Pediatrician was unsure what to do about continued blood in stools so talked to specialist in KC. The specialist still believes it to be an allergic reaction to milk protein. He is requesting we stay on this new formula for two weeks total (have already been on it five days) to see if the blood goes away. Assuming it won't we would then be put on a much more expensive formula (didn't realize that was possible) for two weeks to see if THAT clears up the bloody stools. And then, assuming that one doesn't work either they would move forward at that point with a GI scan to see if she has a fisher or polyp that is causing the bleeding. They are doing what they can to avoid the scan because she is so small and it would mean more radiation.

Because she is still losing blood several times throughout the day she will still require blood counts to make sure she is not losing too much or requiring another transfusion any time soon. She will have blood work done in the morning to see how quickly her numbers are decreasing. If they are decreasing too quickly and/or it looks like this is going to cause the need for another transfusion then they will do the scan sooner than expected. We are still not sure if we would have to do the scan in KC or be able to do it here in Springfield, but for the time being we do not have to go to KC or St Louis for hospital stay. And the KC GI Specialist actually comes to Springfield once a month to see patients, so that would be a huge help if we were able to be seen by him.

As for the Apnea spells during the night, looks like they were minimal apneas that didn't last quite twenty seconds. Doctor said the nurse should not have stimulated McKenna and should have allowed for her to hit the twenty second mark before doing anything to see if she would have come back on her own. I voiced my concern to the nurse that she is having more of these and that she is going backward on the apnea and heart drops and asked her to convey the concerns to the doctor sense he was not able to visit us here today. Hoping tomorrow he will stop by and I will not hold back on the concerns we have!!!

So for now the only real update is to continue as is. Stay on formula, no trip to KC or St Louis for at least another week or two, blood work in the morning to see how blood count is, and act like child not breathing is normal and no big deal. Guess it is already time for Mom and Dad to retake CPR training.

Thanks for the prayers everyone!

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