Hospital Update

 I am going to try and provide a more complete update on the past few days….

For several weeks (Months really), Alex has been feeling like he is getting sick intermittently. But it comes and goes and hasn’t been to the point of seeking care. This week in particular he wasn’t feeling great and we had discussed making an appointment if he was still feeling bad by the end of the week. On Thursday when we deaccessed his port (took the needle out to change) like we do every week, a drop of what looked like pus ran down his chest. We did not want to go to the ER, but knew we need to check on it. I reached out to our hematologist because they have the ability to run labs right in their office. They agreed to have us seen that afternoon.  In the meantime, I was scheduled for gum grafts on Friday morning which I had already put off for some time. I arrived at my appointment at 9:30 and got started. Luckily, I had chosen not to have general anesthesia but just use local anesthesia because I am generally calm and their was a BIG cost difference. Shortly after starting, my phone started blowing up with calls and texts. I couldn’t see my phone but could feel the almost constant vibrating. Talk about stressful! The doctor and nurse realized something must be wrong and stopped for a minute so I could see my phone. I quickly realized that Alex’s blood culture had come up positive and we needed to head to the ER. Alex and Bruce were trying to figure out what to do!

My surgery was over at 11:40 and I rushed home to pack a bag and head to the ER. Have I mentioned how glad I was I didn’t do anesthesia! WE had asked that they try and limit our time in the ER due to knowing what was wrong and the fact that I was just out of surgery however, the hospital is REALLY busy! WE were stuck in the ER until about 6:30 last night. While there they did an US of his chest and saw a pocket of fluid right at his port which explains the pus I saw. The decision was quickly made that his port needed to be removed. He went to surgery around 1:00 today and is finished, but still in recovery for another hour. He handled his anxiety like a champ and he really hasn’t felt bad. He will have a PICC line (Big IV in his arm for the next several weeks) He hates that because it is uncomfortable. We should be able to head home early in the week once we can set up IV antibiotics at home. We will then replace his port during outpatient surgery with his regular surgeon.

I am doing really well all things considered. It is just hard because I am not able to do what i need for recovery. The main issue is my face is growing increasingly swollen. I am supposed to be icing which is hard.Our nurse today has been great and brought me a few ice packs. I have only taken one dose of pain meds because I really need to be clear. The pain is not too bad just sore from all the inflammation. One of my biggest challenges is trying to find stuff I can eat when my options are so limited!

Thank you top everyone who has prayed for both of us. A HUGE thank you to Mimi and Poppop who had Maddy at their house from the time we took Alex to his appointment on Thursday. She is back home with Bruce as of this afternoon, but it was great for her to be distracted and get some Mimi love!

I will update FB one more time tonight.

Ali