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I love my husband and two boys more than anything. However, for the past 18 months there has been another man in my life. Not to worry, it is not a secret. I know I have expressed my love for him at least a hundred times. We all love him. I am speaking of Owen's urologist, Dr. Gazak, of course.
Last Wednesday I took Owen to the hospital for bloodwork that was ordered for Dr. Gazak in preparation for Owen's check-up this past Friday. It was the most calm I have ever seen Owen at the lab. Actually, the most comfortable I have seen him in any medical setting in quite a while. He has become understandable worried, even frightened, of medical professionals. If you are wearing scrubs or wielding a stethoscope does not want you anywhere near him. I was shocked and very proud of him.
Friday was Owen's first check-up with Dr. Gazak since the surgery in January that resolved his bladder reflux. He has been doing well, acting fine and perfectly healthy. Still, I could not help but worry about the results of his tests. It goes back to what I mentioned in a previous post about how difficult it is to wrap one's mind around such a huge change, even a wonderful one such as the huge improvement in Owen's health. Like I said, there isn't just a flip to switch to turn off the emotions that come with caring for and worrying about your child with a major illness, one that we thought would be a lifetime disability.
Dr. Gazak was right on schedule on Friday, which is fairly unusually given the amount of time he spends in surgery and the fact that he is a very gifted surgeon with quite a lot of patients. After a very short wait Nurse Judy came to take us back for and ultrasound. Again, Owen did much better during the ultrasound than he ever has. He usually cries and moves around like crazy, making it very difficult for Judy to get good pictures and measurements of his kidneys. This time he lay very still, taking a peel and stick Bob the Builder off of the wall next to him and putting it back over and over. He even talked to Judy, smiled at her and was very pleasant. She was thrilled that she didn't make him cry for once. As she was doing the ultrasound, I could tell his kidneys looked good. We talked about it as she looked and measured. There was a tiny bit of hydronephrosis in his right kidney (the side that took much longer to heal and led Dr. Gazak to believe that the ureter re implant had failed when he went to take the stents out back in November). It was a very small amount. She had to look for it, whereas before there was a ton and it was completely obvious as soon as she scanned his kidney. She was unable to find any hydro on the left side.
After the ultrasound she took us down the hall to an exam room. Dr. Gazak was standing right in the hallway getting ready to review the ultrasound films. He greeted Wes, Owen and me and asked how we were doing. He asked about my kidney issues. I said, "that is another story." At that point I was just beside myself waiting to hear his take on things. I said, "you tell us". We went into the exam room where he thoroughly explained the pictures of Owen's kidneys to us. I love that he is still so thorough in his explanations despite the fact that he knows how much I know about Owen's urinary tract. He knows I want to know it all. He said that the hydro on the right side was basically nothing, not to worry. He went on to tell us about Owen's blood results. His creatinine level was great, his electrolytes were great. The only level that was slightly lower than normal was his CO2 level. This is a level used to measure kidney function, however it is not as crucial as creatinine levels. The CO2 level can also be slightly low because diet. For instance, Owen is teething something awful (and drooling like a St. Bernard I might add) so he hasn't been eating as well. Again, Dr. Gazak said nothing to worry about. The only other thing of note is that his right kidney is about 1.75 mm smaller than the left one. He said this was because it had been the victim of more "insult" than the left. When that happens, especially with severity of reflux that Owen had, it just takes a little while for the kidney to catch up. Also, two kidneys are rarely the same time.
He closed by saying that he looked great, his kidneys look normal. Normal. We kept saying normal back and forth. I don't think any of us really believe it. It still hasn't sunk in. Owen doesn't have to have blood work or another renal pelvic ultrasound for another 6 months. I truly never thought this would happen. It is just so wonderful, there aren't words to describe how blessed I feel. I look at Owen in awe of all that he is been through and as hard as he has fought to get here. We always knew he would be ok whatever his differences were. Even before when it seemed impossible that the reflux would ever be resolved, there was a plan. He would have been normal, Owen's very own normal. But now he is just normal, as in his urinary tract is normal. Amazing. Wonderful. Thrilling. Miraculous.
For the umpteenth time, thank you Dr. Gazak!
Wednesday, March 17, 2010
Tuesday, March 2, 2010
Hips Don't Lie
Today Owen had a follow-up appointment with his orthopedist. We haven't been there in 6 months. The purpose of the appointment was to check the growth of his hips as well as measure his bones in order to keep tabs on his leg length discrepancy (LLD). We got to the office and Owen was doing laps around the waiting room. He would run past another waiting patient and stop to say hi. Again, he brought smiles to so many people waiting. He kept going over to the door that leads back to the exam rooms, looking at me and laughing. When it was finally his turn to go back I scooped him up and followed the nurse, knowing that his time for exploring and playing happily had ended. The boy is not a fan of doctors' offices, and really who can blame him. The nurse commented on how much he was running around and was happy to see it.
A radiology tech came in to get us to come take Owen for his x-rays. Wes and I both suited up with lead skirts (for lack of a better word) to protect us from the radiation. The way the x-ray is taken, Owen has to stand up on a step-stool looking thing with his back against the x-ray board. He has to stand with his left leg on about a 3 inch block. Today it was 2 boards and a children's Bible. I stifled a laugh at the irony of him standing on a Bible. He actually did well, much better than last time. He moved right when they took the first x-ray so another had to be taken, but last time we could barely get him to stand there.
The doctor came into the exam room and told us that his hips look great. That is one of the most important things with Owen regarding his LLD. First of all, he had hip dysplasia, so making sure his hips are developing and forming well is critical. Also, without the structure of a strong, well developed hip, a leg cannot be lengthened. Since that is what will correct his LLD, we need his hips to be in top notch condition. They look great, and hips don't lie! Great news.
We expected the discrepancy between Owen's legs to have increased. It did not. His left leg is still about 3 cm shorter than his right. It is GREAT that the discrepancy did not increase. The doctor (I don't know if I've mentioned but I love her) insists that it will eventually increase, but I choose to hold out hope that it will not. She watched him walk (and run and climb) and said that no way did he need a shoe lift at this point. I was thrilled to hear that. I feel that we should wait to open that can of worms until it is absolutely necessary medically. He gets around amazingly, and really doesn't even notice the difference. Even MORE good news, we don't have to go back for another follow-up for a year. A year. This is the first specialist that has allowed that long between visits.
We discussed the lengthening procedure. She believes that she will have to perform two lengthening surgeries. A bone can only be lengthened by 20% at a time. I don't like the thought of it, but the good news is that she feels she will only need to lengthen his femur and not his tibia. She thinks the discrepancy in the tibia will be so minor that the length can be made up in the femur. This is promising because only one bone will need to be broken. One thing that was quite shocking was when she shared with us that at the last deformity class that she attended, there was discussion about beginning the lengthening process at the age of 4. Previously we had been told age 8 at the earliest. I just didn't feel great about the idea of a leg lengthening surgery at the age of 4. She agrees, saying that she is not sure how comfortable she is with the idea. I am not sure how she is thinking about it as a surgeon, but as a mom who has a 4 year old I am aghast at the idea of keeping him non-weight bearing, about turning screws in an external fixation device to grow his bone when he can't truly understand what that means. After the lengthening is complete a child can walk, but it is very important not to bear weight during the actually process of growing bone. The screws can only be turned 1mm per day, so it isn't an extremely expedient process. The good news is that we still have 2 1/2 years of medical advancement and time for the medical to community to decide what is best. It is not a decision that needs to be now.
I think one of the most satisfying aspects of today's appointment for me is that according to what the doctor said when she first began seeing Owen, this would have been when he started to walk. Instead he has been walking for 8 months and is now running, climbing and getting around like he has no idea that he has LLD. Again, he amazes me, I am so proud of him. The doctor was too, it was clear.
A radiology tech came in to get us to come take Owen for his x-rays. Wes and I both suited up with lead skirts (for lack of a better word) to protect us from the radiation. The way the x-ray is taken, Owen has to stand up on a step-stool looking thing with his back against the x-ray board. He has to stand with his left leg on about a 3 inch block. Today it was 2 boards and a children's Bible. I stifled a laugh at the irony of him standing on a Bible. He actually did well, much better than last time. He moved right when they took the first x-ray so another had to be taken, but last time we could barely get him to stand there.
The doctor came into the exam room and told us that his hips look great. That is one of the most important things with Owen regarding his LLD. First of all, he had hip dysplasia, so making sure his hips are developing and forming well is critical. Also, without the structure of a strong, well developed hip, a leg cannot be lengthened. Since that is what will correct his LLD, we need his hips to be in top notch condition. They look great, and hips don't lie! Great news.
We expected the discrepancy between Owen's legs to have increased. It did not. His left leg is still about 3 cm shorter than his right. It is GREAT that the discrepancy did not increase. The doctor (I don't know if I've mentioned but I love her) insists that it will eventually increase, but I choose to hold out hope that it will not. She watched him walk (and run and climb) and said that no way did he need a shoe lift at this point. I was thrilled to hear that. I feel that we should wait to open that can of worms until it is absolutely necessary medically. He gets around amazingly, and really doesn't even notice the difference. Even MORE good news, we don't have to go back for another follow-up for a year. A year. This is the first specialist that has allowed that long between visits.
We discussed the lengthening procedure. She believes that she will have to perform two lengthening surgeries. A bone can only be lengthened by 20% at a time. I don't like the thought of it, but the good news is that she feels she will only need to lengthen his femur and not his tibia. She thinks the discrepancy in the tibia will be so minor that the length can be made up in the femur. This is promising because only one bone will need to be broken. One thing that was quite shocking was when she shared with us that at the last deformity class that she attended, there was discussion about beginning the lengthening process at the age of 4. Previously we had been told age 8 at the earliest. I just didn't feel great about the idea of a leg lengthening surgery at the age of 4. She agrees, saying that she is not sure how comfortable she is with the idea. I am not sure how she is thinking about it as a surgeon, but as a mom who has a 4 year old I am aghast at the idea of keeping him non-weight bearing, about turning screws in an external fixation device to grow his bone when he can't truly understand what that means. After the lengthening is complete a child can walk, but it is very important not to bear weight during the actually process of growing bone. The screws can only be turned 1mm per day, so it isn't an extremely expedient process. The good news is that we still have 2 1/2 years of medical advancement and time for the medical to community to decide what is best. It is not a decision that needs to be now.
I think one of the most satisfying aspects of today's appointment for me is that according to what the doctor said when she first began seeing Owen, this would have been when he started to walk. Instead he has been walking for 8 months and is now running, climbing and getting around like he has no idea that he has LLD. Again, he amazes me, I am so proud of him. The doctor was too, it was clear.
Monday, March 1, 2010
18 Months
Owen was 18 months old on Saturday. 18 months, a whole year and a half!? I know I have said this numerous times throughout the development of both of my children, but seriously where has the time gone? It is absolutely unbelievable to me that my baby is a toddler. In fact, I won't have it! He is my baby, end of story.
It is funny, because I remember this stage in Carter's development. I remember being frustrated because he was talking, but was still unable to fully communicate his wants and needs. We used sign language a lot with Carter. We tried it a bit earlier on with Owen and he didn't take to it. He talks quite a bit, but has fairly recently started to whine and show discontent when we don't understand what he wants. I'm thinking another shot at a few signs is in order for Little Man.
As always, watching these kiddos grow is amazing. Owen amazes me every day. His smile and laugh continue to be contagious. He and Carter just crack each other up. Once Owen gets a laugh out of you, he keeps on going until you are just in stitches.
I do not believe in comparing the abilities of my children (or children in general for that matter), but I cannot help but notice the difference between Owen and the way Carter was at this age. I believe the differences are in large part because with Carter I was a rookie, whereas now I am a seasoned veteran. :) In all seriousness, one minute I find myself thinking, "Owen seems so much younger than Carter was at this age." and the next minute trying to remember, "Was Carter doing that at this age." The former no doubt has a lot to do with all of the illness that Owen has been through. In a lot of ways I feel like we were robbed of a normal infancy with him. Of course we were not robbed, we are blessed for each moment he has spent as part of our family. Still, it is a fact that Owen's development has been different from Carter's simply because of his health issues. He has been through more than anyone should go through in a lifetime, let alone in 18 months. However, he has thrived, has hit every milestone. He is right on track. For that we are so thankful. As for wondering if Carter had done such and such by this particular age, that is where the differences come in. It intrigues me to no end to look at the personalities of each of these precious boys of mine. They are so similar, yet so different at the same time. Most importantly, they love each other so incredibly much. I hope they have that love always.
I find myself nostalgic for moments passed, sad because Owen is our last baby and he is growing up. But boy is it fun to love these boys and watch them grow!
It is funny, because I remember this stage in Carter's development. I remember being frustrated because he was talking, but was still unable to fully communicate his wants and needs. We used sign language a lot with Carter. We tried it a bit earlier on with Owen and he didn't take to it. He talks quite a bit, but has fairly recently started to whine and show discontent when we don't understand what he wants. I'm thinking another shot at a few signs is in order for Little Man.
As always, watching these kiddos grow is amazing. Owen amazes me every day. His smile and laugh continue to be contagious. He and Carter just crack each other up. Once Owen gets a laugh out of you, he keeps on going until you are just in stitches.
I do not believe in comparing the abilities of my children (or children in general for that matter), but I cannot help but notice the difference between Owen and the way Carter was at this age. I believe the differences are in large part because with Carter I was a rookie, whereas now I am a seasoned veteran. :) In all seriousness, one minute I find myself thinking, "Owen seems so much younger than Carter was at this age." and the next minute trying to remember, "Was Carter doing that at this age." The former no doubt has a lot to do with all of the illness that Owen has been through. In a lot of ways I feel like we were robbed of a normal infancy with him. Of course we were not robbed, we are blessed for each moment he has spent as part of our family. Still, it is a fact that Owen's development has been different from Carter's simply because of his health issues. He has been through more than anyone should go through in a lifetime, let alone in 18 months. However, he has thrived, has hit every milestone. He is right on track. For that we are so thankful. As for wondering if Carter had done such and such by this particular age, that is where the differences come in. It intrigues me to no end to look at the personalities of each of these precious boys of mine. They are so similar, yet so different at the same time. Most importantly, they love each other so incredibly much. I hope they have that love always.
I find myself nostalgic for moments passed, sad because Owen is our last baby and he is growing up. But boy is it fun to love these boys and watch them grow!
Tuesday, February 2, 2010
A New Chapter
In early October 2008 our lives were turned upside-down after Owen became extremely ill. We took him to a regional hospital, found out he was nearing the point of seizure and cardiac arrest, and were critical cared transported to a Children's Hospital downtown. You know the story, we spent 2 weeks there, much of it in the PICU as the doctors attempted to find a diagnosis. Owen was eventually diagnosed with Grade 5 Bladder Reflux and underwent surgery, a vesicostomy. That was the first of 7 surgeries that Owen has undergone. With the exeption of his cleft lip repair, all were urological surgeries meant to relieve the pressure being put on his kidneys. It has been a long road. My Little Man has fought like a tiger through all of it.
Surgery # 7 took place on January 18. We feared that the surgery would be postponed because of a repiratory infection that Owen developed that turned out to be the Roseolla virus. Luckily we were able to go ahead with the surgery. Dr. Gazak performed a cystoscopy, during which he removed the stent from the right side of Owen's urinary tract. He then did a cystogram, an x-ray to discern the level of reflux and the condition of the urinary tract. The cystogram was clear. The only thing he found was that the valve that he had created on the right side of Owen's bladder during the ureter reimplantation/bladder reconstruction surgery on October 19 was a bit weak. He was able to inject a shot of Deflux (a reflux medication) which is a binding agent that would strengthen the valve. The final result of the surgery- Owen's bladder is no longer refluxing.
Thus, the new chapter of our lives begins. We spent the first 16 monts of Owen's life worried and scared. He spent that time hurting, fighting and enduring surgery after surgery. We hurt and fought right along with our sweet Little Man. After an extremely negative x-ray after surgery in November, things didn't look so good for Owen. We were told that he would be ok, but would live with relux and the serious disablitiy of having a hole in his bladder to empty his urine for the rest of his life. It was devistating. That news has no place in this new chapter. After 16 months of awful illness, many hospital stays, countless visits to specialists and more worry and angst than I can express, Owen is out of the woods. Owen is healthy. Owen passes urine just like any other little boy. He made it. We made it.
Today I finally felt able to write this post. As wonderful as this news is, as excited as we are to have begun this new chapter as a family, as blessed as we are to have Owen's condition to have improved the way it has, it is also difficult to adjust. He was sick for so long, and all of the sudden it is as though a switch has been flipped. I love the switch. I am glad it was flipped. It is just going to take me a while to get used to this new lighting.
As always, I want to thank all of our family and friends who have kept us and especially Owen in their thoughts and prayers. It has meant the world to us, and we believe has been a contributing factor in where we are today. We feel very loved, and again we thank you.
Surgery # 7 took place on January 18. We feared that the surgery would be postponed because of a repiratory infection that Owen developed that turned out to be the Roseolla virus. Luckily we were able to go ahead with the surgery. Dr. Gazak performed a cystoscopy, during which he removed the stent from the right side of Owen's urinary tract. He then did a cystogram, an x-ray to discern the level of reflux and the condition of the urinary tract. The cystogram was clear. The only thing he found was that the valve that he had created on the right side of Owen's bladder during the ureter reimplantation/bladder reconstruction surgery on October 19 was a bit weak. He was able to inject a shot of Deflux (a reflux medication) which is a binding agent that would strengthen the valve. The final result of the surgery- Owen's bladder is no longer refluxing.
Thus, the new chapter of our lives begins. We spent the first 16 monts of Owen's life worried and scared. He spent that time hurting, fighting and enduring surgery after surgery. We hurt and fought right along with our sweet Little Man. After an extremely negative x-ray after surgery in November, things didn't look so good for Owen. We were told that he would be ok, but would live with relux and the serious disablitiy of having a hole in his bladder to empty his urine for the rest of his life. It was devistating. That news has no place in this new chapter. After 16 months of awful illness, many hospital stays, countless visits to specialists and more worry and angst than I can express, Owen is out of the woods. Owen is healthy. Owen passes urine just like any other little boy. He made it. We made it.
Today I finally felt able to write this post. As wonderful as this news is, as excited as we are to have begun this new chapter as a family, as blessed as we are to have Owen's condition to have improved the way it has, it is also difficult to adjust. He was sick for so long, and all of the sudden it is as though a switch has been flipped. I love the switch. I am glad it was flipped. It is just going to take me a while to get used to this new lighting.
As always, I want to thank all of our family and friends who have kept us and especially Owen in their thoughts and prayers. It has meant the world to us, and we believe has been a contributing factor in where we are today. We feel very loved, and again we thank you.
Thursday, January 14, 2010
Carter turned 4! (Oops, that was 2 weeks ago.)
My first baby turned 4 on December 31. He always tells everyone that his birthday is New Year's Eve. We tell him that everyone is celebrating his birthday. Things have been crazy as usual so I haven't had a chance to post about Carter's birthday. I truly cannot believe that my baby is 4. He is such a big boy, there is definitely no baby left. He brings a smile to my face every single day, even on the days when he is a challenge. He is smart, sometimes too smart causing him to think he knows best. This has manifested itself in a lot of back talk. He is very strong willed. This can be both a good thing and a hard thing. The amazing thing is he is just. like. me. He even shoots me the same glare that I was famous for during childhood (ok, sometime now too) and the infamous eye roll that got me into so much trouble when I was younger. He sure does give us a run for our money some days, but he is also such a love.
It seems that he has grown up so much in the past year. It seems like there is such a difference from 3 to 4. Carter is in his first year of Pre-K right now. He will have 2 years of Pre-K because of his birthday and the cut-off for Kindergarten. He loves school. He is very social, so inquisitive and loves to learn. I look forward to hearing the things he comes out with. I enjoy that he so enjoys learning. Sometimes he even teaches us things!
One of the things that has made me so proud of Carter is how caring he is and what a wonderful big brother he is to Owen. He loves that Little Man so much. He is so protective of him and loves playing with him (at least most of the time.)
Carter, I love you big guy, and I can't wait to continue on this wonderful adventure with you!
Carter eating a cupcake at school to celebrate his birthday.
Mama and Carter playing with his new PlayDoh set from Nana B and Pater B.
Daddy carrying Carter's cake.
Mama and Carter as we sing Happy Birthday.
Carter and his cake.
Pappy feeding Owen some cake.
Carter's Handy Manny cake.
Carter's new remote control Lightning McQueen.
Yay, PlayDoh!
Carter playing with his Mikey Mouse matchbox set from Aunt A and Uncle J.
Mama and the boys, my mom and Grandma- Four Generations!
It seems that he has grown up so much in the past year. It seems like there is such a difference from 3 to 4. Carter is in his first year of Pre-K right now. He will have 2 years of Pre-K because of his birthday and the cut-off for Kindergarten. He loves school. He is very social, so inquisitive and loves to learn. I look forward to hearing the things he comes out with. I enjoy that he so enjoys learning. Sometimes he even teaches us things!
One of the things that has made me so proud of Carter is how caring he is and what a wonderful big brother he is to Owen. He loves that Little Man so much. He is so protective of him and loves playing with him (at least most of the time.)
Carter, I love you big guy, and I can't wait to continue on this wonderful adventure with you!
Now for some photos of Carter's birthday!
Mama and Carter celebrating his birthday at school!
Mama and Carter celebrating his birthday at school!
Carter eating a cupcake at school to celebrate his birthday.
Mama and Carter playing with his new PlayDoh set from Nana B and Pater B.
Daddy carrying Carter's cake.
Mama and Carter as we sing Happy Birthday.
Carter and his cake.
Pappy feeding Owen some cake.
Carter's Handy Manny cake.
Carter's new remote control Lightning McQueen.
Yay, PlayDoh!
Carter playing with his Mikey Mouse matchbox set from Aunt A and Uncle J.
Mama and the boys, my mom and Grandma- Four Generations!Wednesday, January 6, 2010
Miracles do happen.
We received wonderful news today at Owen's urology appointment. His creatinine level, which should be below 4 was 2.7. His CO2 level, which they would like to be at least 22 was 18. That level is lower because of an imbalance in the acid and base in his blood. Dr. Gazak said that is to be expected considering the amount of issues he has had with his kidneys. We are supposed to start giving him half of a children's Tums twice a day. Since they are chewable that may prove to be a problem, but we will see. This is such great news, his kidney function is great! Owen also had a renal pelvic ultrasound today. As the nurse was performing the ultrasound I was looking at the screen thinking to myself that his kidneys seemed to look a lot better, had a lot less black spots. I didn't want to get my hopes up or ask, I was so nervous. The nurse made a comment that she thought his kidneys looked good, but she sort of said it to herself. Still, I was afraid to ask.
We were moved to a different exam room to wait for Dr. Gazak. He came in with two sets of ultrasound photos and a smile on his face, saying "I think we have some good news." Owen's right kidney (the side that still has the stent in place) had no hydronephrosis at all. The left kidney had significantly less hydronephrosis (which shows up as a black spot on and ultrasound) than the ultrasound done in December. We are not facing ostomy surgery, Owen may not have reflux at all anymore. He may have a lesser degree of reflux on the right side. What we saw today shouldn't have happened. He shouldn't have gotten better this way, but he did. I truly feel like it is a miracle. Of course Owen is not out of the woods, but he is so much better off. We have so much hope. Owen will be having his stent removal surgery on Monday, January 18. Dr. Gazak will remove the stent from his right side and then do a VCUG to check for reflux. If there is still reflux on the right side and it is a low level of reflux, he will inject a medication called Deflux which would hopefully help reduce it further. The stent removal is an outpatient procedure. We are very much hoping that it goes smoothly and we receive only more good news.
Thank you all so much for your thoughts, prayers and support. It means the world to us.
We were moved to a different exam room to wait for Dr. Gazak. He came in with two sets of ultrasound photos and a smile on his face, saying "I think we have some good news." Owen's right kidney (the side that still has the stent in place) had no hydronephrosis at all. The left kidney had significantly less hydronephrosis (which shows up as a black spot on and ultrasound) than the ultrasound done in December. We are not facing ostomy surgery, Owen may not have reflux at all anymore. He may have a lesser degree of reflux on the right side. What we saw today shouldn't have happened. He shouldn't have gotten better this way, but he did. I truly feel like it is a miracle. Of course Owen is not out of the woods, but he is so much better off. We have so much hope. Owen will be having his stent removal surgery on Monday, January 18. Dr. Gazak will remove the stent from his right side and then do a VCUG to check for reflux. If there is still reflux on the right side and it is a low level of reflux, he will inject a medication called Deflux which would hopefully help reduce it further. The stent removal is an outpatient procedure. We are very much hoping that it goes smoothly and we receive only more good news.
Thank you all so much for your thoughts, prayers and support. It means the world to us.
Tuesday, January 5, 2010
Remember me?
It has been quite some time since I have even thought about blogging. Usually writing is something that really helps me. Frankly, for the past month plus I haven't even felt capable of writing. My emotions have been all over the place, things have been crazy and at times putting one foot in front of the other has been hard enough let alone forming coherent sentences.
Owen had his renal pelvic ultrasound at the beginning of December. Most of you have probably heard about it by now. I don't have the energy to rehash the whole thing, but it was not good. In short: hydronephrosis in both kidneys. The left side, the ureter is just too floppy and can't push all of the urine to the bladder. The right side, there is too much pressure and the valve is not working, causing urine to reflux into the kidney. It was a terrible conversation. Basically, the reimplantation surgery in October did not work. Dr. Gazak said Owen would likely need to have another bilateral ureterostomy. He was going to have to take him back apart. After asking a million questions and my mind racing with a million more that I didn't know how to ask, I asked when he would do the reimplant again. How long would he have the ostomies this time? Dr. Gazak told us that he has never seen a reimplant work after failing the first time in a patient with reflux this severe. He said the best option long term may be to reconstruct Owen's bladder using part of his bowel, making it large enough to allow the reflux to occur. That would mean Owen would have a permanent hole in his belly leading to his bladder, which would need to be cathed every 2-3 hours to keep his bladder empty. Horrible, terrifying, unthinkable. I couldn't even stomach the thought for a while. I thought of every stage of his development through the fog of this possibility. He will be ok, he will live a normal life, but it will be hard. No parent wants to see his or her child deal with a permanent disability.
While I was digesting information, Wes got busy researching pediatric urology to find the best hospital in the country. Children's Hospital of Philadelphia is #1 and Boston Children's Hospial is #2. He called them both. The Chief of Pediatric Urology at Boston Children's couldn't wait to review Owen's case. In fact we heard from him yesterday. Basically he wants to see Owen and run tests that he has already had. He also recommends holding off on ostomy surgery right now. Wes also talked to Dr. Gazak's nurse and Dr. Gazak has been thinking about Owen's situation and seems to feel the same way as of a week or so ago. Wes will be calling CHOP on Thursday to make an appointment there.
Today Owen had bloodwork done to check his creatinine and CO2 levels, which are indicators of kidney function. He was a champ! Tomorrow afternoon he will have another renal pelvic ultrasound, after which we will speak with Dr. Gazak about how things are looking and the results of the bloodwork. Needless to say we are very nervous. Like I said, after we have more information Wes will be calling CHOP for an appointment.
This holiday season has been a difficult one, but also a great one. It was great spending so much time as a family and with extended family. It was hard because in this past month I have digested the information about Owen's condition, perhaps at times become complacent about it. I mean complacent in the sense that I stopped thinking about it 24/7. I am still paranoid that he will get an infection, I still worry about him and his future. On the other hand he is a happy otherwise healthy little boy. When people are around him they can't help but smile. He loves life, which makes me love life. I guess what I am trying to say is that I know that no matter happens with Owen's bladder, no matter what they have to do to "fix" him, he will still be my Little Man. He will still live a happy life, and most importantly he will still be loved just the way he is now. Oh, this is just so hard. The ups and downs and all of the emotion involved with watching one's child experience the difficulty of a serious illness. Did I mention that I'm nervous?
Owen had his renal pelvic ultrasound at the beginning of December. Most of you have probably heard about it by now. I don't have the energy to rehash the whole thing, but it was not good. In short: hydronephrosis in both kidneys. The left side, the ureter is just too floppy and can't push all of the urine to the bladder. The right side, there is too much pressure and the valve is not working, causing urine to reflux into the kidney. It was a terrible conversation. Basically, the reimplantation surgery in October did not work. Dr. Gazak said Owen would likely need to have another bilateral ureterostomy. He was going to have to take him back apart. After asking a million questions and my mind racing with a million more that I didn't know how to ask, I asked when he would do the reimplant again. How long would he have the ostomies this time? Dr. Gazak told us that he has never seen a reimplant work after failing the first time in a patient with reflux this severe. He said the best option long term may be to reconstruct Owen's bladder using part of his bowel, making it large enough to allow the reflux to occur. That would mean Owen would have a permanent hole in his belly leading to his bladder, which would need to be cathed every 2-3 hours to keep his bladder empty. Horrible, terrifying, unthinkable. I couldn't even stomach the thought for a while. I thought of every stage of his development through the fog of this possibility. He will be ok, he will live a normal life, but it will be hard. No parent wants to see his or her child deal with a permanent disability.
While I was digesting information, Wes got busy researching pediatric urology to find the best hospital in the country. Children's Hospital of Philadelphia is #1 and Boston Children's Hospial is #2. He called them both. The Chief of Pediatric Urology at Boston Children's couldn't wait to review Owen's case. In fact we heard from him yesterday. Basically he wants to see Owen and run tests that he has already had. He also recommends holding off on ostomy surgery right now. Wes also talked to Dr. Gazak's nurse and Dr. Gazak has been thinking about Owen's situation and seems to feel the same way as of a week or so ago. Wes will be calling CHOP on Thursday to make an appointment there.
Today Owen had bloodwork done to check his creatinine and CO2 levels, which are indicators of kidney function. He was a champ! Tomorrow afternoon he will have another renal pelvic ultrasound, after which we will speak with Dr. Gazak about how things are looking and the results of the bloodwork. Needless to say we are very nervous. Like I said, after we have more information Wes will be calling CHOP for an appointment.
This holiday season has been a difficult one, but also a great one. It was great spending so much time as a family and with extended family. It was hard because in this past month I have digested the information about Owen's condition, perhaps at times become complacent about it. I mean complacent in the sense that I stopped thinking about it 24/7. I am still paranoid that he will get an infection, I still worry about him and his future. On the other hand he is a happy otherwise healthy little boy. When people are around him they can't help but smile. He loves life, which makes me love life. I guess what I am trying to say is that I know that no matter happens with Owen's bladder, no matter what they have to do to "fix" him, he will still be my Little Man. He will still live a happy life, and most importantly he will still be loved just the way he is now. Oh, this is just so hard. The ups and downs and all of the emotion involved with watching one's child experience the difficulty of a serious illness. Did I mention that I'm nervous?
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