Let me start at the beginning. About the end of June, Tony started having kidney stone pain. As I've mentioned before, he has a chronic condition called cystinurea and forms kidney stones that are usually too hard for lithotripsy to work and much more frequently than the average person. He has had then enough in the past that when he gets this pain, he recognizes it right away and starts taking measures to relieve his symptoms. More often than not, he passes them on his own with the help of pain meds. Well, about 3 weeks into trying to pass the stones on his own at home, July 13 to be exact, he couldn't take it any more, so we were off the the ER in Havre. A cat-scan there revealed 2 stones on the right side, one stuck in his ureter that was 6 mm, and a smaller one still in the kidney. The left side was the major issue. There was a stone in his left kidney called a staghorn stone. Staghorn stones are fairly rare, very large and hard to treat. His stone was about 2 in X 3 in. Sounds hard to believe! The ER doc's eyes were enormous when he came in to give us the news. The interesting part about that is the fact the Tony was having pain only in the right side. Not the left side AT ALL! Tho looking back, we wonder if Tony's reoccurring back pain wasn't caused from the left side stone. Well, they made an appointment for us to see a urologist in Great Falls the next day. On July 14, Tony had a nephrostomy tube (basically a catheter placed directly into his kidney, so he had a tube coming out of his back draining into a bag on his leg), placed into the right kidney to relieve the pressure created by the stone blocking his ureter. He was scheduled for surgery July 22. Our hope was for the doc to get everything cleaned out that day, Tony would have the tubes into both kidneys for about a week, and then Kidney Stone 2011 would be over. WWEELLL, not so much!
Tony was in surgery for about 4 1/2 hours. They only worked on the left side, trying to decrease the large stone. They got about 60% taken out, when Tony started bleeding, so they had to quit. They put in another nephrostomy tube into the left side to get access to that kidney and used a newer machine to "laser blast" the stone. He came out of surgery pretty rough. The nurses had a very hard time getting his pain under control. He was in the hospital for 3 days I think. When we got home he was pretty much bed bound. For him to walk from our bed to the bathroom, which is about 15 steps, was agony for him. I was doing daily dressing changes to the tube sights (he now has a tube going into both kidneys) and monitoring his pain meds, on top of keeping him hydrated and comfortable. It was a lot of work. Not being able to do much else to keep him comfortable was frustrating. Tony is not one to lie around and doesn't like to sit in the house for long periods of time. He was starting to feel better a little by the next scheduled surgery on August 1. The doc wanted Tony to rest up and recover and bit. Again, the hope was for this surgery to clean him out and prepare for baby's arrival as we scheduled the c-section for August 18.
On August 1, they cleaned out the right side and attempted to get more of the large stone on the left side broke up. They did get more of the stone, but there was still more to go. He was in the hospital another 2 days. At this point, I am doing weekly appointments with my doc in Havre, and running Tony to Great Falls once a week. He had another surgery scheduled August 8. I wouldn't be able to make it to this one as I had to work. Tony's parents would go down with him. August 8 was a tough day for me; not being there with Tony was frustrating for me. Being a medical person, when the doctor would come out and explain things, I could understand. I am not so good at communicating what he told me to others, but I could understand what was being said. Not being there to hear for myself was hard for me. Tony's parents did a wonderful job of being there for him and explaining to me that while the doctor was optimistic of how things went, he felt that Tony still probably had one more surgery to go. I think that day was the day I lost it mentally and emotionally. All I kept picturing was me alone in the OR having a baby without her dad there with me as he was having yet ANOTHER surgery! Up to this point, I think I had done pretty well at keeping a stiff upper lip and all. I remember a conversation Tony and I had about how God doesn't give us more than we can handle and Tony's remark was "I wish God didn't think so highly of me!" That and wishing kidney stones on Obama was about all Tony really complained about. He was in alot of pain, but he still managed to keep a decent sense of humor thru it all. An appointment with the doc that Thursday and another CT revealed another stone in the right kidney and mostly just sediment in the left kidney. They had taken out the right neph. tube on the 8th. The left one was still in, but I knew it would have to come out soon as the tube site was getting pretty red. Another surgery was scheduled on August 15 to take the tube out and place a stent and remove the stone from the right side. The thought with the stent (a tube going from the kidney to the bladder) was that the sediment was small enough that it would pass thru easily enough and the stent would come out the following week. The 15th came and Tony was in surgery for another 3 or 4 hours. A lot longer than any of us had anticipated! They put the stent in and he also had a catheter placed. Tony dealt with severe bladder spasms till the catheter came out. Once the catheter came out (I removed it the following day), he felt much better. It was the 16th... 2 days till baby came. Obviously, we weren't going to be done with all of this as we'd all hoped, but at least he was feeling better. We went camping the weekend before, thanks to Tony's brothers help, and did okay. While we wanted this to be over before baby came, the farther along we got, the more we (including the doctor) realized this was a more complicated case than initially thought. On the 15th when the doctor came out to visit with me after the surgery was over, he asked permission to use Tony as a case study subject he wanted to present at a kidney stone conference in October. He wanted to get other doctors feedback on how to deal with this particular condition. As mentioned earlier, Tony's stones are very rare (about 1% of the population gets these kind of stone), and staghorn stones on top of it are even more rare. The doctor is doing chemical workups on Tony's stones to see if there are different or better meds Tony should be on. Even tho this process took a lot longer than we'd all hoped, I really feel like this doctor did his best to get Tony "cleaned out" as fast as possible. The doctor has over 20 years in just Great Falls and I believe is very knowledgeable in his practice. Tony was probably his hardest patient he's dealt with in his career, tho. He is pretty nice and took quite a liking-to to Aria!
On August 18, Tony was feeling great. Taryn Kennedy was born right at 8 am, weighed in at 9 lbs 3 oz and was 20 inches. Her features are very similar to Aria's when Aria was a baby. Tho Taryn doesn't have a dimple on her chin like Aria and I and I think she's a bit darker complected than Aria too. She is pretty mellow, but lets you know when she's had it! Tony's family was all there and my parents were there for her birth as well. It was a good day. I got pretty sick after the surgery (I still blame the morphine!) and the recovery hasn't been as speedy as I remember Aria's being. Friday morning, Tony started not feeling well again. Thankfully he had pain meds and was able to make it thru the day. Saturday morning things turned from bad to worse for him. I looked at him and said "we're in the hospital! Go downstairs to the ER get something stronger for pain and see what else they can do". So, he did. A CT showed the stent was plugged up about an inch deep with stones. A call was made to Tony's doc in Great Falls and even tho he was not on call or anything that weekend, he agreed to have Tony come in and "clean him out for good" this time! To have a doctor come in on his day off is saying something. Tony's brother, Dustin, drove him down for the procedure on Sunday. They basically flushed the left kidney out for 15 minutes. In the meantime, my doctor, who was fully aware of our situation over the past few weeks, pretty much said even tho I could go home, he wanted me to stay one more day as "we can take good care of you while your husband is recovering". We all returned home Monday. Tony and his mom brought Taryn and I home. Tony had a sample cup and the bottom of it was covered in stones that had been retrieved from the stent. One wonders how much more could've been in there from the whole process.
The stent comes out Sept. 9. Tony went back to work yesterday. He's on light duty aka office work this week. He had his manager at work covering calls and messages when Tony was out ( July 14 - August 28). I guess the 3 stacks are about an inch or so thick each. Thankfully, working the the medical field, one has to just say kidney stone and surgery, and people are pretty understanding! Once the stent is out, this will be over. Then on to long term treatment and prevention. I imagine Tony will have a CT or Xrays done at least yearly to see if there is more stones forming. Diet and exercise don't help prevent these stones. He's missing a gene that doesn't process protein efficiently. Meds and hydration are the main thing in prevention and even that is no guarantee. We know what the problem is, it's just finding something that will keep recurrence to a minimal. Tony's family have been just awesome thru all of this. They mowed our yard, vacuumed, washed floors, watched over our dogs (including poop patrol!), cooked meals, kept Aria on surgery days, and just checked in frequently. We couldn't have made it thru without them. Many of you emailed, called to check in, sent cards... it's been wonderful! Our church is now supplying meals to us on a daily basis and that has been a wonderful blessing, too! I can't tell you how this has really helped us. Words seems to fail me. I truly believe that it has been everyone's support that helped us get thru this! Other than August 8, I have been fairly optimistic and positive. Perhaps hormones play into that, but honestly, we are really blessed with great family and friends.
I've included some pictures of Taryn and of Aria's first day of kindergarten (!) as if this momma didn't have enough to deal with, I sent my little girl off to school on top of everything else! She so far seems to like it, tho she told me the other day that they don't have the dress up clothes like preschool and they only time they get to play is recess! Another Aria-ism for you: The other day, Taryn's cord stump fell off. Aria was there and promptly went to find her dad to let him know "Taryn's cork came out, dad! Her cork is out!" Life is slowly getting back to normal. Taryn had her days and night confused, but I think we're getting that reversed. I plan to return to work the end of Sept. (the doc wanted me to take off 2 months, but we agreed to a month after some strenuous negotiations!). My mom will come up when I return to work to be my daycare for Taryn till she has to leave. I have a wonderful daycare person (highly recommended if you live in the Rudyard region, tho I think she's booked for now!), but want to keep Taryn home as long as possible, just cause it's fall and kids tend to share more illnesses than usual with school resuming and all.
I hope you haven't all been bored to tears with this update, I've just gotten some questions and felt this was the best way to address them. I hope it made sense and clears up any confusion. Again, thanks for all your support and prayers. The care we received in both Great Falls and Havre was outstanding. We're both on the road to recovery and look forward to a "normal" day soon!
I'd like to take this opportunity to come out against Obamacare. If we were on universal healthcare, there would be no way Tony would've been seen so quickly. We maybe would still be waiting for the first appointment! Yes, our medical bills will be high, but after a (rough) month, we're almost done. Please, for those who maybe think universal healthcare is the way to go, RECONSIDER!!! Paying more for our bills is much more worth it than waiting... and waiting... and waiting.
I've had a few chances to watch some preseason NFL. While in the hospital, I was feeding Taryn, watching a game, and thought does life get any better?! I can't wait for regular season to start... I'm gonna have to post my preseason picks soon!
