Would you believe I have a faithful reader? "Fan" is probably too strong of a word, but apparently, I do have a friend who checks my blog regularly and has reminded me that I have been lax in my blogging lately. So this is for you, friend; you know who you are!! :) My excuse for my lack of posts lately is simply that I have lacked inspiration. I have a love-hate relationship with my blog. I find it freeing and therapeutic at times to purge my mind here, and it is also quite a convenient way to spread news about Avery without having to repeat myself over and over. However, lately I haven't felt like writing because I feel like I write nearly the same thing in each post, since it seems life has left us in a rut of sorts. But I will attempt to catch up a little today.
At the risk of sounding like a broken record, Avery was just hospitalized again last week. This is his fourth admission in the last six weeks, I think?? I'm kind of losing count. It was the same ole' story: low grade fever and lethargy. Probably just a pesky bug that his immune system couldn't fight on its own, but with a central line and an immune suppressed patient, protocol is hospitalization with stress doses of steroids and antibiotics. He seemed to perk up fairly quickly, and then on his second day there, his central line broke, again. His last central line issue left him with a repair too close to his chest to cut and repair there, so another stint was added just below the last repair. It took over an hour for this repair, and like the little trooper he is, he let me and a Child Life Specialist hold him down the entire time while two nurses from the vascular team worked on the line. We were all tired and hot by the time it was over, and since it is a sterile procedure, ready to get our masks off asap. Then they had to start a peripheral iv on him since he needed iv meds, and a repaired line isn't usable for 4-8 hours.
The next morning, I was having a tough day from a sleepless night and just worrying about my Avery. I made a quick trip to the cafeteria to grab some lunch. On my way back through the concourse, I saw someone who caught my eye. She looked vaguely familiar. As I got closer, it dawned on me who she was. I stopped beside her and she looked at me, and she clearly recognized me. Her name is Audrey, and she was Avery's primary care nurse when he was in the NICU. She took such good care of him, that when I had to leave him, I knew he was in good hands. She would take pictures of him and make scrap book pages of him from time to time, and she is the one who first taught him to take a bottle and guided me in the process of feeding, bathing, and holding a baby that was only 2 lbs. She kept in touch the first year of Avery's life, but then we lost contact. I really couldn't believe that after all this time, this nurse from Miami Valley Hospital in Dayton was standing here in Cincinnati. We talked for a moment, and then I took her up to see Avery. He was in a deep sleep from getting Benedryl with one of his iv meds he was getting at the moment, but when she spoke, he peeked his eyes open and smiled like he recognized that voice. It was so nice to re-connect with her after so much time but also pretty emotional to give her all the details of the last few years. A couple hours later, I got a call from a friend who was coming down to visit someone from his youth group who was also here at the hospital. He asked if it would be possible for him to stop by, and since he is a minister, it was no problem. He came in and talked for a while and prayed with us. It sounds kind of silly, but we understandably don't get company very often. It was just refreshing to see someone not wearing scrubs and hear him say he and his church were praying for us. I told Phillip that it seemed like the Lord knew I was having a hard day and sent some special people to make it so much better!
The good news is, and I say this hesitantly lest I jinx us, that Avery is healthier now (at least on paper) than he has been in a long time. His BK virus has finally started responding to the antiviral infusion he has been getting. His count was steady over a million for a couple of months, but it is currently around 20,000, which is awesome considering what it was! His cidofavir infusions have been cut from 3 times weekly to once weekly, which is also great since one of the concerns about his fevers and lethargy recently has been cidofavir toxicity, as it is a harsh drug. So, his blood counts are hanging steady despite weak antibodies killing some of his new cells, his liver and renal panels have also been better, and we're starting to think about going HOME.
BUT, before he can go home, he needs to have a couple of minor surgeries. I use the word minor lightly, because as I have learned, the only "minor" surgery is the one not being performed on my child. Since Avery is still not eating orally and the ng tube is causing further esophageal issues, we are going to have a g tube placed in his stomach. This will allow us to continue tube feeds and give him his oral meds through his tube without the bother of a tube in his nose and taped to his face. The other surgery he needs is to have a line replacement. As I said before, he now has had his central line repaired twice, which isn't ideal, and he needs a new one. His BMT doctor said that we could think about what kind of line we wanted. We can do another double lumen central line, a single lumen central line, or a medi-port like he had before. There are pros and cons to all of them, but I think we're going to opt for the port like he had previously. The plus side is that we won't have to worry about weekly dressing changes, flushing and hep-locking it daily, or the hassle of having a line hanging out of his chest 24/7. The down side is that it will have to be accessed each time he needs ivs or blood draws, and he may occasionally have to have peripheral access or vein draws. Once he gets these procedures done and recovers from surgery, we're hoping we can head back to Dayton. We will still need to drive down here to Cincy once or twice a week, but Phillip and I already do that, and he will still be in isolation for at least a year post transplant. But it will be so nice to be home with him! I just can't wait!
Phillip took this week off work so that I could go home and spend some time with Bryson and Emerson. I have to say again that I'm blessed with a great partner through all of this. When I start feeling sorry for myself, I'm reminded that there are some moms here who do it all by themselves and whose husbands rarely are able to visit or just choose not to.
This morning, I had to wake Avery up at 7 for our hospital appointment, and as we were crossing the street here during rush hour, I looked down at Avery. He was bundled up under a blanket since it was a still chilly that early, but I could see his little hands moving underneath. Finally, he just pushed that blanket out of the way and started clapping. Under his mask I could see him smiling and hear him making his happy noises. Seeing him so thrilled to get to go outside and feel the sunshine and hear the noises of the metro busses, cars, and nature surrounding us just put my life back into perspective in a moment. Once again, my little man shows me how if we really want to be content and happy, we can be. Sometimes we just have to re-adjust what we're focusing on! I've heard it said before: instead of telling God how big your mountain is, tell that mountain how big your God is! He really is faithful, and his mercies are new every morning, thank God! We appreciate the continued prayers for our family! I don't just say that; I mean it! I realize that this has been a long journey, and as life gets busy and has moved on, some people have forgotten that we're still struggling along here. But it really means so much to know that there are some who are still holding us up in prayer.
God bless, Bethany
