Tuesday, March 9, 2010

Week 12 Update

I realized today that Harrison has now been in the NICU for the length of 1 semester of high school and time has really flown by much faster than I would have expected. Harrison is recovering nicely from his heart surgery and hopefully we are getting closer to being able to come home. So here is the update for the past week.

Heart- Harrison's incision site is healing beautifully. Many nurses have commented on how it one of the best they have seen. His most recent echocardiogram showed his heart looked great and is working well. Something that I have noticed is that his heart rate is really low. They claim that older babies have lower heart rates and it is normal..but of course as Harrison always does..every time they give a low number it seems that the he goes lower than this when he sleeps. My concern is what happens when he comes home and isn't on monitors for me to know what is too low..SO please pray that his low heart rate is as they say..NORMAL..and not a sign of future problems. Praise God for such a great recovery from heart surgery.

Liver- So they ran liver function tests again yesterday since it appeared that his liver was larger. Shortly after heart surgery his liver enzymes and bilirubin became elevated to levels higher than ever. So the best way to understand this all is remember.. we want all liver function numbers to be lower not higher. So yesterday's test revealed that his total bilirubin was 1 pt lower, but his direct bilirubin went from 13.7 to 7.9 which is great. Direct bilirubin is what becomes elevated with liver problems. One of the other liver function numbers went from 309 to 150 but a 2nd one went from 145 to 206 so one went up and the other down. His clotting factors which also indicate liver function came back as ok. So overall, his labs show that his liver is still functioning well. Please pray that these continue to come down in future labs. But praise God that his liver is remaining stable at this point. And as always..I ask that you pray for a miracle on his liver that it will begin to function normally to spare him from any future surgeries.

- So Harrison is still on nasal cannulas due to the fact that his oxygen levels drop to extremely low levels while he is sleeping. Drs seem to think that his enlarged liver presses on his stomach and diaphragm and when he is relaxed his diaphragm doesn't fully expand. Of course I would love for him to not have to be hooked to oxygen tanks when he comes home so that he would be more free to move around. Please pray for Harrison's lungs to work at full capacity all the time so he can be free of the oxygen.

Feeding- So when Harrison came out of heart surgery he was able to receive bottles and bolus feeds through his g-tube. These were both things that he had not been able to do previously. Well after returning to the NICU and as he progressed up on his volume in feeds he vomited. So immediately he was changed to continuous feeds which means it is dripped in at a slow rate all the time. And the vomiting episode seemed to trigger a reflux and gag response that he also didn't have before this incident. Therefore, his bottle feeding has pretty much been non existent. He has no interest in taking a bottle or anything that drips liquid in his mouth. It makes him gag or he pushes it out. He will even refuse a pacifier at times because it triggers the same response. He is able to handle his feeds on continuous feeds so that is a praise because it helps him gain weight and get bigger and stronger. But please pray that time will bring about a renewed desire to eat by mouth and that he will be able to eventually transition to all bottles. Please pray that Harrison will continue to do well as they increase his feeds to meet his goal. He is so close to being there and nutrition is his primary obstacle to overcome in being able to come home.

Thank you to everyone who has prayed for Harrison. Your support has been amazing. Thank you to Carolina Dance Explosion and Explosion Martial Arts who put on a kick a thon to raise money for Harrison's medical expenses. Your kindness and generosity is overwhelming. As always, words can't express what you all mean to me and I can't thank you enough.

Please continue to lift up Harrison in your prayers. He still has a long journey ahead.

1 comment:

  1. For tips on preventing Harrison from developing an oral aversion, and keeping an interest in eating, try the resources listed on Oley's Tube Feeding Tips page -- scroll to the bottom for the "Weaning" section:http://www.oley.org/tubetalks.html

    If you have any questions about the tube feeding or want to talk to another parent, feel free to call, email or check out all that the Oley Foundation offers at www.oley.org. It's all free of charge.

    Best wishes for Harrison's health.

    Warm regards,
    Roslyn Dahl
    The Oley Foundation
    (800) 776-OLEY