Time to catch up.

Well, I think it is time to do a little catching up and to explain why Seth was in the hospital.  Last summer, Todd happened to lay his hand on Seth's chest while he was sleeping.  Having the medical background he has as a nurse taking care of heart patients, Todd was suspicious that Seth had an arrythmia, or an irregular heart beat.  We didn't think too much of it, but during a well child check I mention our finding to the pediatrician.  She listens to his heart and doesn't find anything unusual but has an EKG done anyways.  She doesn't see anything concerning but says she'll have the pediatric cardiologist look at it, because its protocol.  A couple of days later I find a message on my voice mail from the pediatrician that I needed to call her back.  Apparently the cardiologist found something on the EKG that was a little suspicious.  So I call the pediatrician back and she says the cardiologist wants us to come in to see him for another EKG as it appears there might be some right sided heart enlargement.  So, in September, we go in for our first cardiology appointment.  We have Seth all hooked up for another EKG and the doctor sees the same results.  He is not too concerned because there are no other things going on that would otherwise alert him to something more serious, but he has Seth undergo an echocardiogram just in case, or an ultrasound of the heart.  During the echo, it looks like the right side of Seth's heart is a little enlarged and the blood pressure from his heart to his lungs is a little higher than normal.  Sill, the doctor isn't really concerned. Seth is showing no signs that something is wrong, if in fact the pressures are truly high he would be having shortness of breathe, chest pains, blue lips and fingers, passing out.  Since we have nothing to compare this echo to, it is hard to tell exactly what is going on.  We decide to order any echo or cardiologist reports that Primary Children's Medical Center in Salt Lake City, Utah may have where Seth spent the first 3 1/2 months of his life.  We also decide to wait six months to do another echo so we can have another echo to compare with the first.
    Well, for reasons unknown, we had a hard time getting records from Primary Children's.  Looking back, I see it as a blessing.  Primary Children's had revived my request, but for some unknown reason, it was never sent.  So we finally got them sent, but by December, they still had not arrived in the cardiologist's office.  So the doctor suggests that we just come in and do another echo.  This appointment was scheduled for the 10th of December.  I honestly thought we would find nothing tat day and confirm that we were being overly cautious.  I sensed that the doctor felt this way too as we chit chatted before doing the echo.  During the echo it, the doctor discovered that the pressures in Seth's heart were even higher than before.  He showed us the blood flowing backwards a little from the per right chamber to the lower right chamber when the valves would open because the pressures in the pulmonary vein were so high.  I think he called it supra systemic.  It looks like Seth has Pulmonary Hypertension.  He was now very concerned.  He said that we needed to have a heart cath done in order to confirm and to see if there was anything wrong with the heart that would be causing this that he couldn't see on the echo.  We would have to go to Children's National Medical Center in Washington, D.C. for this.  The severity of everything probably didn't hit me until The day before his cath and while we waited during the procedure.
   Anyways, the next morning, it was a Tuesday, Children's National calls to set up a cath for that Friday, the 14th.  We had labs at Walter Reed the day before.  I chatted with our cardiologist while Seth's blood was drawn.  I asked if we'd be staying the night, as the nurse who did our pre-op mentioned a 50/50 chance of staying, but I knew he didn't have details of each heart cath.  The cardiologist say, Oh yes, most likely in the ICU.  That is when things started to really sink in.  The cardiologist also said he had already contacted the Pulmonary Hypertension specialist at Children's National, Dr. Berger, about Seth's case.  I was nothing less than impressed! Dr. Berger had stepped out of a conference to take the phone call and even though he was scheduled for a vacation, he would make sure he saw us after Seth's heart cath.  Wow!  It also added to the scariness of it all!
     Friday morning we arrived, got Seth changed into a hospital gown, did all the pre-op stuff, chatted with anesthesiology, and before we knew it, we were carrying Seth in to have his heart cath.  We stayed until he fell asleep, which was like way less than a minute.  He fought at first, but it wasn't for long.  Than we sat and waited.  It was a long wait.  And this wait was so unlike any other waits I have gone through.  Usually you are just sitting waiting for something to be taken out, or fixed and you know all will be ok.  This was hard as we were doing something to prove what we were afraid he had.  After about three hours, they were finally finished and the heart cath doc took us to a room to explain his findings.  Seth's pressures were very high, he was non reactive to treatments they try during the heart cath, the vasculature in his lungs looked abnormal, but his heart looked fine.  We had no questions as we didn't know what to ask yet.  We meet up with Seth as he is being wheeled to the CICU, cardiac intesive care unit. Seth is very angry as he beginning to wake up.  He is not liking all the tubes and wires all over him.  We have to sedate him to try and keep him settled. All of this seems too much for Seth's little body to handle and he goes into a pulmonary hypertension crisis.  He grabs all his wires on his chest and begins ripping them off, he is pale and has blue lips and fingers, he cries out and then passes out.  He comes to and passes out again. I press the nurse call button and Todd just goes out in the hall to get someone.  Next thing, our room is bustling with activity as they are trying to sedate Seth even more to get him to relax and get his heart rate down.  They finally get him stable.  Todd was in the midst of all the flurry, this is what he does, just not on kids.  He works with adults who are stable enough to come out of the ICU, but not ready for the regular floor.  I just remember thinking, this is what I have to deal with?  I don't think I can do this!  It was pretty scary.  Seth stayed in the CICU three nights and on Monday morning, he was transferred to the Heart/Kidney Floor.  We had no more issues with Seth during our hospital stay.  We couldn't leave the hospital until we had two medications, sildenifil and bosentan, The bosentan is harder to get. Google those two meds and see how much they cost.  Yes, I am thankful to be in the mlitary and have that covered.  Todd and Seth did not come home from the hospital until Thursday evening.  The bosentan was delivered Thursday morning and we had the sildenafil delivered Friday morning. Oh yes, google sildenifil and see what Seth is taking.  Yes, it was used to treat pulmonary hypertension first, and they realized what one of the side effects was.  Now it is prescribed for other usages.  Anyways, we go back to see Dr. Berger next week.  I am hoping and praying that we can keep the pressures in Seth's heart controlled with medications.   I hope next week brings good news.