I am SO sorry for the lack of updates. My "easy week of appointments" has turned crazy and I don't have my computer. So here it is...
Our first appointment Wed. Morning was with our immunologist (Dr. Pacheco). There is some concern about the number of high fevers Alex has been having. At this point we will continue to watch him. The big shocker was that Alex has a sinus infection. He seems to have had it for a while which most likely explains the increase in temperature we have seen over the last few months. The GREAT news is that we tried an oral antibiotic and so far so good! When i told Dr. pacheco that Alex's port once again has no blood return she insisted we see surgery while we were here. So her nurse called and got us in at 1:00 on Wed. (the same time as our hematology appt)
We went to surgery and after much discusssion about whether to replace the port or try and use clot busting medication to get it working, we decided we needed to do everything possible before replacing it. The plan was to go to the ER the next day to administer the medication.
We then quickly scrambled to hematology an hour and a half late! Things are going to stay pretty status quo in that dept. We may try decreasing the frequency of his procrit to see if he can hold his blood counts. The only other news from this appointent is that the red spot Alex has had on his nose for months is actually a hematology issue. There is nothing we do about it, but it is good to know what it is.
So All in all, we left the house at 6:30 Wednesday morning and returned at 9:00 at night.
Thursday we headed to the special needs dentist first and that was a disaster. Alex was crying so hard they couldn't even count his teeth. So in April he will have an exam, xrays and a cleaning under anesthsia at the hospital. Then th waiting began. My instructions were to call one doctor, wait for them to speak to the ER and then head over. Luckily, Lauren and Missy were at the hospital so we hung out with them. After waiting 3 hours with no word from anyone, Dr. Koenig told us to just go. After 6 hours in the ER, we had a blood return and were headed back to missy's to crash before heading home.
We woke up yesterday morning and I needed to put heparin in his port before we left. Guess what? No blood! So i emailed Dr. K and called the surgery nurse. She called back mid morning and Alex is scheduled for surgery to replace his port on Monday.
So we are once again hanging out and having funwith the Knights until next week. I cannot express my gratitude to Missy, ben and there entire family. They have been so wonderful. They have made both Alex and I so comfortable. They are sharing their home, their medical supplies, their privacy. We could not ask for better friends. not to mentiopn we have laughed so hard and had so much fun.
I will update Monday after surgery. Please keep Buggy in your prayers.