This Port thing is NOT as easy as I thought!

So, all seemed to be fine after Ao Zhen's Port surgery on April 10th. Although that wasn't quite what I expected either. He ended up getting stuck with IV's and blood draws much more than he should have as they did not "access" the port during surgery, and there was a lot of back and forth between doctors and surgeons as to wether we could even access it (which means basically leaving a needle in it, with a line attached so that I could easily give him the Factor he would need for a week following the surgery at home)prior to leaving the hospital. If not it would have been a nightmare as he would have had to be stuck 2 X a day at home for 5 days. That did not happen and they did end up accessing it for me. So , all was well, Port looked great. Until last weekend- Saturday April 21st I noticed his suture line was oozing a little and was a little more open at one end. He also had a fever of 99.2 which is scarey with a port. They told me not to worry about it that night unless he fever went over 101 or the actual Port site (which is above the suture line) started looking red or inflamed. Sunday, his fever was gone but the wound was open more...looked really bad and they told me to take him to Hopkins ER.

So...they admitted him to reopen the next day. There was a chance that the whole port would have to be removed and replaced. He got an IV stick to place a catheter in, and a blood draw that night to do blood cultures because he got a fever again of 101.8. What a nightmare. So, the next day they put him under, opened him back up cleaned up the wound which had a hematoma under it and thank goodness were able to leave the port in. The culture of the wound site showed staph infection, so he was put on IV antibiotics. We had to stay in the hospital until Wednesday, when the blood culture came back clear and everyone was comfortable sending him home. All of this after another catheter had to be placed, because the other one had come out of the vein. This poor child was stuck so many times its ridiculous. And the whole point of the Port was to avoid the whole process of trying to probe and torture him to find veins. Plus the fact that again the port could not be accessed and he had to receive Factor until Friday...so they sent him home with an IV in his hand that came out Thursday night..so we had to go to the ER again Friday night for more sticks- and the sticks didn't even work. They absolutely could not get a vein without it blowing, so we just gave up and had to make the decision to skip Friday's factor dose. Its really been a disaster...such a disaster that I am going to wait for many more months before having Max done. Here are some pictures of my little trooper. He was such an awesome and brave boy in the hospital. He really is such a good patient...all the nurses were apparently fighting over who got to take care of him every time there was a shift change.

Ao Zhen has a port!

Since Ao Zhen seemed to be hurting himself much more often then Max, we decided he would be first in line for a port. We had the surgery last Tuesday April 10th at Johns Hopkins. It all really went well. He came out of surgery after an hour just fine...no pain. The hospital stay - we were in there for 2 nights- was a little difficult as he was ready to be up and moving and was connected to an IV for most of the time, so that was tough. But he did wonderful. We were discharged Thursday, with the port accessed as he needed 2x a day infusions that I needed to do. He went to Hopkins Tuesday the 17th to have port de-accessed, then re-accessed and infused for the last time for his surgery. We will start next week with a home care nurse coming to help me do prophy 2X a week. Max is scheduled for May 22nd.