Tuesday, May 26, 2009
There is joy and pandemonium in the Kraft household today. Sarah's NG tube has been removed. Yeah! She is now "free" from all artificial infringements upon her little body. She is now up to 16.56 pounds and unless she loses weight drastically for some reason, we should never see that little yellow tube ever again.
Now, I just can't wait to see her crawl. She has been rolling back and forth pretty regularly the past few days and even falling forward on to her stomach - on purpose. I don't know that her arms are strong enough to take her where she wants to go but her legs are ready to enter a bike race!!! :o)
The prayer is now that Sarah continues to sleep through the night without her constant milk supply. But what a great day!
Friday, May 15, 2009
We are asking for continued prayers for some dear friends, Ray and Jane Arney. Ray is a good friend of mine from back in my Navy days. Jane has cancer that is spreading in her brain. Please see their blog at http://dorkman.wordpress.com. We need God's miraculous healing power now!
Sarah is doing extremely well and following yesterday's clinic the docs have decided to take her off the NG feedings for EIGHT hours a day. She is looking extremely good and I will be posting photos soon.
Tuesday, May 12, 2009
Patty and Sarah just returned from Children's and things are continuing to look up for our little one. Her liver numbers are all basically normal or very close to normal. Some of her red blood count numbers are high but they attribute that to the fact her body is trying to fight off a cold (like the CMV). She is now 15 1/2 pounds - she gained .25 lbs from just last Thursday which is outstanding. Yeah, Sarah!
The docs have now authorized her to be off the NG tube feedings for six hours per day instead of four to see if she will resume breastfeeding normally since her weight is looking good. On top of that, they said next week the broviac line can finally come out of her chest.
Praise God for His faithfulness and thank all of you for your continued prayers.
Wednesday, May 6, 2009
Patty received a revelations of sorts yesterday. God reminded her of one of her favorite passages. It is so applicable to our lives right now and most particularly to Sarah's new liver.
Remember not the former things, nor consider the things of old. Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.
Some thoughts: the "former" and "old" things obviously relate to Sarah's damaged liver. The "new thing" was her precious new liver received in God's perfect timing, allowing us to refresh ourselves even while in the desert. Patty's thought was awesome: that making a way in the wilderness and "rivers" in the desert referred to new bile ducts! And that could also apply to the blood that is now freely flowing through the liver, as it should be.
God is so good!
Patty took Sarah to her first post-transplant clinic visit Tuesday morning. Sarah had her standard blood tests in the AM and then the actual visit in the afternoon. Her labs looked great - only the GGT is still relatively high but is declining. So, the liver is functioning well and Dr. Healey said she looks great. She is still putting on at least a little weight. We still have her getting 2 oz. of breastmilk hourly through the NG tube until further notice. It will be interesting to track her weight over the next few weeks to see if she gains anything substantial. Patty is minimally breastfeeding her now due to the large intake through the NG. We are also beginning to supplement with a little formula to fortify the breastmilk.
This afternoon we received a call from Marsha, the transplant nurse coordinator, who advised us the CMV was high. For those of you not up to speed on your medical acronyms, CMV stands for the Cytomegalovirus. This is no big deal to normal, healthy person who will simply have cold symptoms. In an immunosuppressed individual CMV attacks the liver and other organs and can actually lead to organ rejection. Sarah was already on the meds to prevent CMV but apparently the dosage was not high enough. The dosage has been raised and we need to wait and see. She is asymptomatic but if she gets a fever and becomes symptomatic it will result in a one week stay with IV antibiotics. So much for taking the broviac line out!
If a further update is warranted following our Thursday clinic, I will post another entry.
Saturday, May 2, 2009
With all of us together once again (hopefully for a VERY long time), we have entered the next stage in our journey - post-transplant. Sarah will be visiting Children's twice a week for clinics for the next month or two. Please keep those visits and Patty's back-and-forth driving for those appointments in your prayers.
We have a new regimens of meds as well. Please agree with us that Sarah will take those with no issues. It is also crucial she continues to gain weight. Currently, the NG tube is supplementing Patty's breastfeeding with additional breastmilk. If all goes as planned, we won't have to go back on TPN at any point. But for the time being, the broviac line is still hooked into Sarah's chest so we need to pray against any infection. It is likely they will take it out in a month if everything goes as planned.
Thanks for continuing to stand with us for divine health for Sarah and her new liver. Rejection can happen any time up to a YEAR or more after transplant so we need to be vigilant.