Xander's Surgery

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I know it has taken me a long time to post how Xander's kidney surgery went on my blog. It was last Thursday. I've been posting pictures and updates on facebook from my phone just because it was fast and easy but the truth is that I am just now getting on the computer.Sorry!! His surgery went very well! It took 3 hours for them to do everything.

This is Xander in his cute little outfit right before his surgery getting into trouble just like always!
Throwing a tantrum on the floor. He was pretty tired.
This was after his surgery. He was having a little bit of trouble keeping his oxygen up for a bit, but after a little bit of help he did great!

Everything went great! He is doing really good. He's just been extra whinny and has lost his appetite some, which is weird for him.He also had his circumcision while he was under. Yesterday, we noticed that it was swelling and looked infected.It is a little scary looking.It really grosses me out!Court hates to change Xander's diaper. He says it hurts him too much to even look at it. LOL! We called Urology yesterday and they said to take him in to have his doctor look at it, so I did today and much to my embarrassment, I guess it usually looks like that. Yes, there I was again, feeling like the idiot crazy mom, but, his doctor is so nice, he didn't treat me like that at all! But I feel so embarrassed, AGAIN!
We did find out some more about Xander's heart. His masses haven't grown!!! They also found that an artery that is supposed to go down and pumps blood into one side of the heart, on Xander's it splits and pumps into both sides. I hope I am explaining it right. It is fine and shouldn't effect him. They will just keep watching him, like they are. I like the way that his pediatrician put it. It's just funky! My kids are just funky! LOL!But, he is doing so good! I am so thankful for all of the wonderful and kind doctors and nurses who took care of him.We feel so blessed. Thank you everyone for all of your sweet and caring comments, love, and prayers for him and our family. It means so much to us to have so many family and friends who love and care for him and us. Thank you with all our hearts.

Xander's Kidney Surgery Tomorrow

Tomorrow morning at 6 Xander is having his surgery on his Kidneys, (VUR). That means that we have to get up a t 4 tomorrow! And, I thought 4:30 was early! My mother-in-law is going to watch Savannah for us tomorrow so that we won't have to worry about her and she can go to school. She loves spending time with Grandma love!

I have been feeling so many emotions about it this week.
One of the biggest ones is that I am afraid, afraid of all of the unspeakable things that could happen to him. In fact, as it draws closer I am becoming terrified!I've tried not to think about it too much because I just knew that this would happen. Now, I'm just crying and I feel stupid for crying, because I know that he has to be okay. It's so hard to stop thinking about it.I just have to be brave and hold it together for him.

I am very hopeful that he will be fine after this surgery. He is a very strong and determined little boy!I am so grateful that God intrusted him to us.I know that we are always telling him that he is lucky that he is cute, whenever he gets into trouble( which is a lot! )But, the truth is that we love him unconditionally. He teaches us Patience and brings us joy in this crazy world!I love that I can see how much he loves his sister, and that he has no fear, well except for sleeping in his bed and that his mommy would leave him for any period of time. LOL! I love that he is a mommy's boy and I love it when he blows me kisses!He has such a sweet spirit! Even when he is angry he is adorable!

Well, I'll probably post some pictures tomorrow on Facebook and my blog. Thank you so much all of my family and friends for your kind thoughts and prayers!

Xander's New Surgery Date

Xander's surgery has been changed to January the 26th. He just had too many things scheduled, and they didn't have enough time to do it all. Here are two of the things that they are going to be doing. They will be doing the Ureteral Reimplant on his left kidney and Endoscopic surgery on his right. They will be do a circumcision and an echo to look at his heart.I found these definitions at The Children's Hospital of Philadelphia's website.They helped me to understand it better.

• Endoscopic surgery: This is usually an outpatient procedure under general anesthesia. During surgery a lighted tube, called a cystoscope, is inserted into the urethral opening to see inside the bladder — no incisions are made. A substance, called Deflux, is injected into the area where the ureter enters the bladder. Deflux helps prevent urine from flowing back into the ureter.
• Ureteral reimplant: Under general anesthesia and through a lower abdominal incision, the ureter is reimplanted where it joins the bladder. Ureteral reimplantation corrects the anatomical abnormality that allows urine to flow back into the ureter. At CHOP this procedure can be done through a minimally invasive surgery (MIS) using a laparoscopic or robotic approach. This involves only a few small incisions instead of a larger lower abdominal incision. The benefits of MIS include a faster recovery, smaller incisions and a less noticeable scar. Most children go home the day after surgery.

New Update

Sorry, I haven't written on my blog in a while. We've been really busy, and sick.

Last week Xander got sick again, and had to go to the Bronchitis clinic again. I only had to take him in a few times. HE was just to congested. They got a lot out of him. His doctor re wrapped his hand and foot for me and said that his stitches look like they are healing well!

Savannah is doing great! She loves to boss her little brother around, by saying "No, NO Xander!" Then, she usually pulls him away from what ever he was climbing or cupboard he's getting into. It's so cute when she and Xander chase each other around the island counter. They laugh at each other! I love it! We went to Savannah's parent teacher conference last week. Savannah is doing so good! Her favorite color is now purple. I never would of thought she would like any other color as much as yellow. She is so cute and she still holds hands with this little boy in her class and she knows the first letter of his name. G. It's so cute! Savannah is also doing very well at sitting on the potty!!! Maybe soon she will be potty trained!

Last week one of my fillings came out and a nerve got infected. When I went to the dentist, I found out that I have to have a root canal. I was so scared! It was the most painful thing ever! I would gladly go through childbirth without an epidural, than go through this last week again. The dentist proscribed me antibiotic. I can't take penicillin because, I'm allergic. So, I'm taking Erythromycin. Yesterday it made me so sick. All I could do was throw up. It was awful! And tonight the same thing, but it lasted only a few hours. Today I had the root canal. It was so less painful and scarier than I was anticipating! But, I'm so glad it's over. I have to wait three weeks to get my permanent crown put on though, because I have to wait for the infection to heal .Today I was feeling so much better. I caught up on laundry, cleaned, and played with my kids, and started dinner, Fresh Tomato Soup. I have the greatest recipe, but then right in the middle of Savannah finishing up cutting a tomato into juice and mush and starting on a banana for Xander I didn't care. My stomach was turning and aching. My poor mother mother-in-law came home and had to finish dinner and watch the kids for me while I went to through up. I feel so awful! Hopefully this ends soon!!!

One of the biggest things that have happened is that Xander has his first follow up with Urology. He had an ultrasound done of his kidneys. The average size of a baby his age's kidneys is between 5 and 8 centimeters. Xander's right kidney is average. I think he said it's 6, but his left kidney is just barely 4 centimeters. The tubes in both of his kidneys are very swollen, which is caused by the reflux. The doctor was very surprised to find that though Xander's left kidney is very small it does not have and renal scaring that he could see! This is an extremely good thing because he has level 5 reflux, and that is rare at this point I guess. It is very good because the scaring is what can determine if he needs dialysis or a kidney transplant. The scarring they can't fix.
His urologist wants to wait longer to do the surgery, but not too long because of his small kidney, the chances of scaring will increase. They like to wait until they are about two years old if they can. Thank you all of my dear friends and family for keeping Xander in your prayers. It means so much to us.

A reminder to me of how precious life is

Today,I had an appointment with Xander's pediatrician, so he could explain everything to me better and answer my questions about Vesicoureteric reflux (VUR). I really love both of their pediatricians. They are so nice, and they truly care. Today was one of those days where I go in for the appointment in the medical mind set. I had made a list of questions. Today,changed the way I view life and how much I cherish my two sweet, precious spirits, who are my children. Today, I was told by Xander's doctor that if he gets a bladder infection witch the VUR 5 makes him prone to, can damage his kidneys and they will fail and he just kept trying to put it in a nice way which sounded so much worse to me than if he would of just said it. He said, "he'll leave here", and the second time he said it he said "he'll leave you". It seams just so unreal, so unreal that he is so frail in a way, so close to leaving me, and there's almost nothing that I can do but, give him his antibiotic each day to decrease the chances of infection. He is such a happy baby. He has just started really laughing. It's so cute and, he just got his first tooth on Saturday. He's so beautiful and perfect. We've had him for such a short time. We've fallen in love with him. We've watched him grow and become his own little person, and yet, I'm just so scared that he will slip away. All we can do is love him, and cherish every movement we have together, and pray that he will make it through this. I just can't even imagine a life without him.I'm so scared.Then right before his doctor left the room he said to me,"He is a cute boy, make sure you take lots of pictures." I keep feeling like there was more meaning to his words ,as if he meant to add "just in case." After that whole appointment, after all that we had talked about, those were the biggest things that stuck in my mind.When I got in my car I couldn't hold it all in any longer. I cried and cried and now I don't think I have anymore tears left. I just feel so empty.
I keep feeling like no one understands what I'm going through, and I just wish that I had someone who has been through it all to talk to. Someone who feels all the same pain and sadness.Everyone says that I'm strong and that they don't know how I do it, but that's just it. I'm not. I'm just trying my best one day at a time to be the best mom that I can be for my children and love them. I'm just doing what any mother would do for her children if they were in the same situation. I don't feel brave or strong or anything. Some days I just feel like I'm failing. Sometimes I just feel so alone, but today my sister-in-law called me and told me that there is one other person who has felt all of my pain, who knows all of my fears. He suffered and died for me. All that I have to do is share my burden with him. I know that it won't leave, but just maybe make it lighter. She reminded me that the atonement is not only there for repentance. He has felt all of our pain and has made it so that we can turn to him and ask for his help, and he will give us strength in our time of weakness, just as in the poem of the footsteps in the sand. When looking back on our lives, during our greatest trials Heavenly Father is carrying us through, and he never leaves us.

Vesicoureteral Reflux

Xander had his appointments at Primary Children's Hospital today. First they had us go back . I don't remember what it was called. It's probably one of the worse things a little guy can go through. They put a catheter in him, I couldn't bare to look. Then They put the IV in his wrist. It collapsed. They tried his foot next, then his head. It was so sad. He had to lay there for 45 minutes. He screamed the whole time. All I could do was hold his hand, wipe away his tears and dip his pacifier in a cherry syrup for him to suck on. It was so sad. I tried not to fall apart. Next they took out the IV. We went to another room to have them do a Fluoroscopic voiding cystourethrogram (VCUG).
When he looked at his right kidney, he went silent and went to call for the doctor. That really scared me. They had him moved to different positions, and after a while they were done. The doctor just told me, with a nice smile that he was going to send the results up to urology. That scared me even more. I felt like they knew something and I wouldn't find out for over an hour and a half. Later at his Urology appointment the doctor told me a bunch of stuff that I only remember bits and pieces. I really should start taking a recorder to appointments. He said that Xander's kidneys aren't very good to start with. He has Vesicoureternal Reflex, level 5, which is the worst. We have to give him an antibiotic every day to keep away infection, which could cause kidney damage. We're going back in 6 months. After a year if his kidneys have gotten worse or look the same They are going to have to do surgery to fix them. It's very unlikely that they will get better where he's at level 5 and born with it. Right now I'm just praying that he won't get any infections and that I can maybe pull myself together for tomorrows bigger day of appointments. I just don't know what else to say. I can't stop crying, and who knows what they'll find tomorrow. If you want to see more information on Vesicoureteral Reflex here are some sites.
www.pedisurg.com/PtEduc/Vesicoureteral_Reflux.htm
emedicine.medscape.com/article/439403-overview