Friday, April 8, 2011

Update-April 8, 2011

We left you with Maddox being on four medications to control his blood pressure.  He was also placed on nitric oxide.  This is typically given to open the blood vessels so blood can flow.  To no surprise it didn't work for Maddox since his hypertension is the result of an abnormality or structural damage with his blood vessels in the lungs. Thankfully though, his blood pressure is now under control.  In fact, up to this point, they have weened him off two of the medications completely and have started working toward weening him off the other two.  His blood pressure has been stable.  Our hope is that it will remain as such and eventually come off all blood pressure medications.  This is important because as long as he is on blood pressure medication he cannot have his mom's milk. Right now he has to rely on a nutritional mix that has been formulated called TPN. Prolonged use of TPN does cause liver damage.

While we are able to celebrate the success with his blood pressure there is yet another issue.  His oxygenation has been a concern.  Currently, he is needing the full support of the ventilator (100 %) to maintain acceptable saturation levels (the measure of oxygen he has in his blood).  This is concerning because should those levels drop there is no room to increase the support, not to mention too much oxygen can have adverse side effects on the eyes and brain. The doctor informed us that Maddox is border line for needing ECMO.  This was very disconcerting because prior to his coming off ECMO, the surgeon explained that he would not be a likely candidate for a return to ECMO.  So as you can imagine the anxiety and concern for our son that is resting upon our shoulders is heavy.  The thought is now that his blood pressure is under control and they have somewhat of a handle on his fluid management, other things will fall into place.  A pulmonary specialist came by to examine Maddox and gave the go ahead to try a different medication to try to dilate or open up the blood vessels.  You would never believe the medication:   a form of Viagra.  Evidently this medication works great in newborns that have problems with hypertension.  Throughout all of this, Maddox is still fighting and we know it will be a matter of time before we are taking him home.  Today, we saw signs of a regular newborn--irritability and fussy :)  Although he's not able to vocalize himself due to the breathing tube, he let us know by facial expressions (crying) and body movement that he didn't like what was going on. It's heartbreaking because we still cannot hold our son to comfort him like we would want to. Once he becomes more stable then we will be able to hold him. Hopefully that will be soon.

Also, we have to tell you about something cool that happened to us.  As you may remember from a previous post, Maddox's doctor has her own reality show on TLC called 'The Little Couple'.  For a couple of days, her camera crew was here following her around taping for the new season.  Well they actually interviewed us for one of the episodes.  We had an opportunity to talk about CDH, Maddox, etc.  The new season starts in May/June so look out for us.......We told Maddox that he's only been here two weeks and already making his mom and dad famous (maybe a sign of things to come? :)

Dr. Jen Arnold and Maddox

Maddox sound asleep today

1 comment:

  1. Praying for Maddox and his team of doctors. Hope you continue to see the baby steps in the right direction and they are able to wean his oxygen support. He is adorable! Strong and stable baby Maddox....you can do this!!! How cool is Maddox's doctor!! That is really neat the film crew filmed you. Will have to watch for the Torry family on TV.

    (((HUGS))),
    Tracy

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