Thursday, August 25, 2011
Somara has had a busy couple of months. She has been getting ivig infusions since April. She has had 5 infusions and out of the 5, three times her port infiltrated. She swelled up and had quite a bit of tenderness from where the medicine went in right under her skin. At the end of July her Dr that has been doing the infusions called and told me that he would no longer be doing infusions in the office and that he would have to send us to the hospital for infusions. Somara had an infusion at the end of July in the hospital and the whole thing was quite a disaster. They first did not have the correct size needle to access the port and had to call other Children's hospitals to find a needle. We set around waiting for a good part of the day. Finally they get it started and it runs for about an hour and the port infiltrated again. The Dr said it was very important that she got the rest of her medicine and that they would have to start an iv. It took them four sticks and about two hours but finally got an iv started in her foot. Then they continued her medicine at the fast rate she was at before the port infiltrated which caused an extreme spike in her blood pressure, so they had to slow it down to a much slower speed. We were at the hospital all day long and she was worn out. The Dr came in about 9pm and said we needed to pull her port out and put a new one in. The following Monday Somara had her 7th surgery to pull the first port out and place a new one. They had to open her up on both sides of her chest because they put the new port in on the opposite side. Somara had a hard time recovering from this surgery due to lots of bleeding and excessive pain. We are in the middle of changing Doctors so that she can go back to having her infusions at the office instead of the hospital. It is very stressful changing Doctors and the new Dr not having a history with her. Please say some extra special prayers for her over the next week or so, we had a test run on her yesterday and the Dr called me today and we go in next Tues to get some results. I can't really go into detail about it yet but prayers are needed. Thank you to everyone that prays for her already, it is such an encouragement to know so many people lift her up in prayer.