I'm not really sure where to start since we last left off. I didn't realize the last post was from Stephen's surgery. Yikes! Well...we've been back and forth from Virginia to York, PA twice, multiple trips to the doctor (both pediatrician and nephrology) and way too many phone calls and after-hours doctor pages to even count.
Stephen healed wonderfully and did really well with the surgery once we were 24 hours post-op. Everything has healed very nicely and it's nice to see how things are supposed to look "below the belt." From a urology stand-point, we have Stephen's VCUG procedure (an out-patient radiology study where he'll be catheterized to determine bladder size and capacity) on July 12th and then meet with the doctor the following week at his office downtown at Children's National hospital to review the results and come up with a plan for what to do next to get his bladder ready for transplant. I'm looking forward to making the trip to Children's National (it's actually fairly close to our house) to see what the hospital is like since we've only ever been to their Northern Virginia outpost.
We've made a lot of changes and have been battling some things in terms of his kidney care and nutrition. Stephen's blood pressure is still high, so they added a medication to his regime that should act in conjunction with his current blood pressure medication to help bring it down and we've been switching up his dialysis solutions on a day-to-day basis to try to pull off some extra fluid, but at the same time, avoid getting him too dry. It's been a daily struggle, but it's a decision that's been left up to me, and I don't always feel comfortable making those decisions. But the veteran dialysis nurse just recently retired, so there isn't the same decision making process happening right now (we won't go into the whole big mess, but let's just say, the transition has been more than rocky). Regardless of that though, his blood pressure is still high. It's riding right around 140/82 right now which is extremely high for a toddler. It should be down around 105-110 systolic. So I've been forced to be much better lately at taking his blood pressure (which is a good thing) about 1.5 hours after dialysis ends in the morning and right before bed. And then based on his bedtime blood pressure, I either use 1.5% solution (if the pressure is good) and a mixture of 1.5% and 2.5% if it's high. But Stephen is very sensitive to the solution changes and I'm always so nervous I'm going to get him too dry and we end up at the hospital.
We've also added extra calories to Stephen's formula, and he's been growing more the past couple of weeks. He had somewhat plateaued so they increased his calories, his volume of formula and his growth hormone. And I think it's worked. His weight is definitely up and I feel like his pj's are getting shorter :) And we've switched some of his day time feeds from pump feedings which were going over 45 minutes to bolus feeds which are more like 15-20 minutes. I just push the formula into his tube slowly which a big syringe. I've been doing this with the hope it will make Stephen hungrier between feeds and thus want to eat and drink more by mouth. It's still a very big daily struggle to get him to eat anything, but I did have great success one night while we were in York where Stephen ate about 10 bites of raspberry gelatin from Rita's! Here he is in the car with his Rita's face:
It was such a proud Momma moment :)
Typically, I'm lucky if I can get him to eat a few chips or crackers a day. He tends to only go for crunchy, salty foods, so we've been rotating between Bugles, no-salt saltines, veggie chips, and goldfish. And his favorite things to drink right now are water, unsweetened ice tea, and he took a few sips of apple juice the other day. Mornings are his worst time for eating and afternoons, right after nap and evenings tend to be the best. My guess is he might not feel very good after dialysis in the morning.
But the really fantastic things that are happening is his walking, crawling and talking. His crawling and walking have taken off and he's getting really close to walking on his own. He still likes to hold both of your hands when he walks, but he can definitely do it with one. And he now does circles around the living room walking from the couch to the stairs to the wall to the recliner, down the coffee tables against the other wall and then to his toy chest where he can then make it back to the couch. And he's now totally getting himself up off the floor by himself; from sitting to crawling to standing. So he's making huge headway on his catching up! And we now have about 5 or 6 words in his repitoire; "bye bye" being the most favorite! Stephen also got to spend some time with his cousins and really loved playing with Norah. He's definitely at the stage where he could benefit from spending more time around other kids. Here are some great pics from our first trip to York, a video of him chasing the girls down in the driveway, and a video of Norah playing with Stephen and getting a kiss from him. I can't even get a kiss from him!! He's going to love these pics/videos when he's a teenager :)
And then....I get to this past week. While we were in York two weekends ago, Stephen's catheter came apart while I was changing the tape on it. I clamped it very quickly and my Dad was right there to be able to wash his hands and put it back together quickly, but I was obviously very concerned about the possibility of an infection. So I paged the doctor and we decided I would bring him in as soon as we got back and take a sample of his PD fluid and start a course of antibiotics to prevent any bugs from growing until the culture came back. We did the sample Wednesday afternoon, but the lab couldn't use it (go figure), so we had to do another one Thursday. And then we didn't get the antibiotics until Thursday. So he got a dose Thursday afternoon, Thursday night in his dialysis solution, and then Friday.
But as luck would have it, the DC Metro area was hit by the largest non-hurricane storm in history Friday night about an hour after dialysis began. We lost power and as such, Stephen lost his dialysis Friday night. When we woke up Saturday morning, there was still no power and no sign of it coming on anytime soon. Not only was the power out, but so were the phone systems and subsequently the hospital's phone and paging system. (we even drove over the to hospital to page the doctor on call but to no avail). We later learned that 911 in all the surrounding counties was also down. And to top it all off, my parent's were coming Saturday morning to babysit Stephen overnight so we could attend a friend's out-of-town wedding.
So we made the best decision we could, and took Stephen back to York. We quickly packed up everything and the dog and hit the road. But later that evening around 4pm, when I went to set-up Stephen's dialysis machine, I realized I was out of one his antibiotics; vancomycin. I frantically paged the doctor, but of course the phones still weren't working. And then began calling pharmacies in the area to find it. But because the form that Stephen requires is an IV drug, no one had it. Our best course of action was to take Stephen to the ER and beg to get a dose. So that's what we did! Thankfully, the nurses and hospital staff at York Hospital were wonderful and accommodating, and the nurse practitioner in the ER was familiar with peritoneal dialysis and pleaded our case to the pharmacy. We lucked out and got one dose of the drug and were in and out within an hour. They were so amazing and so nice and so good with Stephen. I can't say enough good things about our experience there.
Once we got the dose of vancomycin, we were back in business. And even got a chance to have a nice "date night dinner" out while Mimi and Poppy babysat. And we got word from our neighbors that the power was restored to our neighborhood around 7 PM Saturday night. So even though it was a very stressful couple of days and everything seemed to be going wrong, we actually lucked out that we were able to find refuge 2 hours away in York and that our power was restored. Every single neighborhood surrounding us is still without power (I'm writing this Monday, 7/2 @ 2 PM) with the exception of Shirlington Village. The traffic lights are all still out and as of this morning, the phone systems were still down in and around the hospital.
So now I've just been running around like a crazy person trying to refill prescriptions and make sure we have adequate supplies for our next trip; heading to NC on Wednesday to Bill's parent's house at the beach. Hopefully we'll get a break from this heat down there and be able to kick back a bit and enjoy some time at the pool! I think all three of us deserve it! :)