Previous Blogs

Update on Surgery day

Submitted by Jamie on Tue, 08/28/2007 - 7:47am.
It was a long day yesterday. Surgery started at 7:30am and lasted about 5 hours for Julie and over 9 hours for Brandon. Everything went well. Brandon is in the ICU and Julie is recovering in the hospital.

Thank you for your messages in the guest book they have all been passed on to Mike, Julie, and Brandon. Keep them coming!

Check back soon for updates on Julie, Brandon, and upcoming fundraising events.

» Jamie's blog

update on day two

Submitted by Jamie on Tue, 08/28/2007 - 7:00pm.
The surgery went well, and the new kidney is working great. However the last 24 hours have been very difficult. Brandon has tubes all over and is in alot of pain. He is asking for something to drink and wants to be held but as of now that is still not allowed.There is a 1 on 1 nurse with him and a member of the family there 24 hours a day. Every hour brings new critical issue's.

As for Julie the last 24 hours have been very difficult. Multiple critical issue's occuring all night. As well as alot of pain. One thing for sure the respect and admoration the entire hospital staff show julie, as a living donor is unbeliveable. Julie was able to see brandon for the first time today but only for a few minutes.

Continue to keep them in your prayers.

» Jamie's blog

Julie's been released!!!

Submitted by Mike on Fri, 08/31/2007 - 9:31am.
Hello Everyone-
It has been so nice to read all of your messages!!
I was released from the hospital last night. I am VERY swollen and tired but glad to be "free"! I have four incisions in my stomach. I am able to move around slowly although I'm hunched over and look 13 months pregnant!!! My arms are black and blue from the hourly blood draws and Iv's. After surgery my blood levels did not return to normal and I had several long and painfull nights. As for now I am staying in a hotel that is about 4 blocks from the hospital. This is so I am close if things change with Brandon. Enough about me I know you all want to hear about Brandon.

Brandon was moved out of ICU around 4pm last night. He has been placed on a transplant floor. He is in a private room to try and prevent some common germs. He is still in an extreme amount of pain. He has not been able to eat or drink since Sunday, and was held yesterday for the first time. He is being kept flat on his back and has a central IV line in his neck. They are keeping him on strong pain medication and he's in and out of sleep. He has made it clear to the nursing staff that he wishes to be called "King Baby Nolan" not Brandon and so far they are all playing along! He keeps asking for his shoes- because he wants to leave!

Transplant patients are watched very closley as things change hour by hour. Brandon has been no exception. He has needed two blood transfusions so far and we have been watching his blood pressure/heart rate very close. I have only been to see him twice as I find myself in too much pain to stand over his crib. I hope to visit today! My parents, Mikes mom and Mike have been rotating shifts. Someone has to be with Brandon and myself 24 hrs. a day. They are all {as you can imagine} exhausted. We would not be able to do it without there help! For those of you who have tried calling any of us, our phones are not allowed on Brandons floor as they interfere with the equipment. That is why it may take us a little while to get back to you. I will try to update you all again soon.

Please keep us in your prayers!
love,Julie

» Mike's blog

Update on Brandon -Day 6

Submitted by Mike on Sat, 09/01/2007 - 10:10am.
Nothing much has changed in the last 24 hrs. They have lowered Brandons pain medication a little to see how he responds. That has made him a little more talkative. Mikes mom has left, but will be returning in a few weeks. I was able to visit Brandon for about an hour and a half last night. He was very glad to see me! Doctor's are still making rounds this morning, so not sure what the day will bring. It won't be long before they try to move Brandon around a little. He is starting to develop a cough that they are watching. He has a midline incision that runs down his stomach and a small hole where his dialysis catheter was. They also placed a tube into his belly to help drain some fluid. So a cough would be very,very painful. They are constantly drawing blood to check his levels but thankfully he has that IV line in his neck. They can pull what they need from that line instead of having to stick him all day long. Im sure the day will bring new challenges so I will try and fill you in later.

Enjoy your Saturday!!!!-Julie

» Mike's blog

Pictures!!!

Submitted by Mike on Mon, 09/03/2007 - 2:39pm.
We put a couple of pictures in the photo album. It has been a rough couple of days for Julie. She has been in an extreme amount of pain. Brandon had his catheter removed, so the fun of changing diapers has begun. He is still not eating or drinking very much. Mike has been pulling long hours. He is with him most of the day and has been staying thru the night. It takes two people to give Brandon medication and to move him. Everyone is tired but not complaining!! Brandons doctors are very pleased with the way the new kidney is functioning. They hope to lower his pain medication again soon. He is still asking for his shoes and wants to go out to dinner!! Brandon hates the IV in his neck and screams anytime someone goes near it.

Thanks for all the messages!!!!!!!!!!
Mike and Julie

» Mike's blog

Kidney working well

Submitted by Mike on Fri, 09/07/2007 - 12:21am.
I want to start out by telling you how much we enjoy all of your messages! It is so nice to know that you are all thinking and praying for us.
THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!

Brandons kidney is working well and the Doctors are very pleased. We are still having a hard time getting him to eat or drink. The Doctors want him to drink 40oz of fluid a day. We are lucky to get about 8oz in him right now! He had his first meal since surgery, Salad with italian dressing and black olives, his favorite!!! He only ate a couple of bites but its a start. Brandon is still not able to sit up all the way but is moving better every day. We were able to put him in a wagon and pull him around the unit. He was so excited to get out of bed!! He still has the central IV line in his neck and it will stay until discharge. He HATES it!! He had his first taste of "real" milk and seemed to like it. Mike has been staying thru the night and "sleeping" in a pull out chair. The rest of us help all day and leave around midnight. My parents are still here and are so much help! We checked out of the hotel and are now staying in the apartment. I am not able to drive so someone has to bring me back and forth. Brandon is still fighting all the medications so we have to hold him down.

Its official- he has been brain washed. He asked us to find him a "Baseball Game" on TV the other day and he watched it calling out the plays!{ Where do you think he got that from?}

As for me, still in alot of pain. I have my follow up visit tomorrow.
Thanks again for taking the time to leave us a message!
P.S.- We added a couple more pictures to the photo album.
Love, Julie

» Mike's blog

A little bump in the road

Submitted by Mike on Mon, 09/10/2007 - 12:27am.
Well things were progressing a little too well. Brandon has developd a low grade fever. The Doctors aren't sure yet what is causing it. They are waiting on some test results to see if it is an infection starting. Brandon has now been in the hospital for 15 days and is becoming VERY cranky. Today was one of the worst. Nothing made him happy!! Still having trouble getting him to eat and drink. They have stopped the IV fluids during the day to see if he will drink liquids on his own. His volume is so low that they are still having to give him the fluid all night. We try all day long to push liquid. I had my follow up visit on Friday and was told approx. 6 more weeks till the swelling and pain go away. We just gave Brandon some pain medication and put him to sleep. Last night he only slept about 4 hours so he {and mike} are very tired.

THANK YOU for the messages!!
Please continue to keep us in your prayers. Julie

» Mike's blog

Day 18!!

Submitted by Mike on Wed, 09/12/2007 - 2:16pm.
Hello-

Brandons fever is better however he does have a (UTI) Urinary tract infection. We have added yet another medication. He is taking 14 syringes a day of medications!! The Doctors have started talking about discharge!! They feel Brandon will have less of a chance of getting any more infections if he is not in the hospital. They are going to remove the line in his neck in a few min. so if you hear him screaming in Florida you'll know why!!!!!!!!! They are still concerned with his drinking but have every faith that he will start soon.

THANKS AGAIN FOR THE MESSAGES!!!!!

» Mike's blog

BRANDON COMES HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Submitted by Mike on Sat, 09/15/2007 - 3:23pm.
Well Brandon found his shoes and was sooooooooooooooo glad to hear that he was leaving! He is still not taking in the volume of liquid Doctor's would like to see. His "new" kidney is an adult size and therefore requires a larger amount of fluid. We are also watching his blood count, it is very low. The Doctors are hoping we will not have to give Brandon another blood transfusion. Brandon is now homebound except for hospital visits. He dosen't quite understand why we are not going out to dinner but for now is happy seeing all his toys! They gave us masks that we have to put on him going to and from the car {He's just crazy about those}. Brandon now has to be stuck for lab draws 3-4 times a week. My dad has left but my mom is still here. I am still out of commission so we are very grateful she is here! We have so many new rules and restrictons to follow. We wash our hands 10,000 times a day! For now the most important is keeping Brandon away from all animals, plants, flowers, and other people. Brandons diet has also changed. He is now allowed to have milk, french fries, pizza, chocolate and other items he's never tasted!

It's going to be in the 30's tonight!! Thanks again for your messages- Brandon loves to check and see who wrote! Love, Julie

» Mike's blog

Life After Discharge

Submitted by Mike on Fri, 09/21/2007 - 10:47pm.
I know everyone is waiting for an update on our "life after discharge"! Things here are slowly getting organized. Brandon is enjoying having Grandma around to play with! Mike and I are enjoying the extra pair of hands!! We spend almost the whole day trying to get Brandon to drink. This has proven to be one of the most difficult tasks. We have been for labs several times. Brandon goes again in the morning. So far Brandons kidney function is good. We are still concerned with his blood count. We have to keep track of everything Brandon eats or drinks in a log book. This way we can tell the Doctors exactly how much Brandon is getting. The Doctors are still not happy with Brandons liquid volume.

I am still not feeling very good. I have spent the past few days in bed. The Doctors told me I am probably looking at a minimum of another 4 weeks of pain and swelling!( THE JOYS OF MOTHERHOOD!!!) I have only been able to help with Brandon a little each day. My mom has been to the store and has made dinner every night! If not for her the dishes would be stacked up onto the floor, we would have no clean clothes and would probably be starving!!

Mike is still very tired. He spends most of the day thinking up new ways to get Brandon to take a sip from his cup and making up Brandons medications. He has yet to see even one football game on t.v.!

Brandon still won't take his medications. We are still having to hold him down and force them in. He has several scars on his belly but refuses to look at them. He screams if you lift his shirt or his stomach is exposed. The medications he's on have caused him to have diarrhea. His little "hiney" is very red and almost blistered. We are trying to get Brandon back on a sleep schedule. Most medications are very time specific so we are having a hard time finding a window for him to even take a nap!

We are taking things one day at a time and can only hope tomorrow will be better than today!!

We added a few pictures to the photo album so be sure and take a look. THANKS FOR THE MESSAGES!!!!!!!!!!!!!
Love, Julie

» Mike's blog

Update on Brandon- October 9th

Submitted by Mike on Tue, 10/09/2007 - 4:24pm.
Hello Everyone-
Again I want to start this message out by thanking you for all the messages left in the guestbook! Even though we haven't updated the site in a couple of weeks we check the messages daily. Also THANK YOU sooooooooooooooooooooo much for the cards and care packages you have been sending to Brandon. He gets so excited when the mailman knocks on the door!!

Brandon is picking up speed! He is enjoying playing and making a mess all day long! Brandon's kidney function levels were not great the last lab draw. We go again in the morning. The Doctor's made a few medication changes and are having us keep a very close eye on his blood pressure and activity level. They have discontinued the face masks. They have also allowed Brandon to go outside being held once or twice a week, but for only a few minutes. He still must stay away from all animals, flowers and people. They want to re-introduce Brandon's immune system very slowly. His incision is healing nicely. We are still having trouble getting him to willingly take his medication's but it is improving. He is allowed to go for short car rides. This may seem silly but when you have a cooped up 2 year old a car ride can be a blessing!!! Brandon has decorated our front windows for Halloween and wants to go to the "pumpkin patch". The Doctor's say he may be able to if his labs improve. We have been very cautious with him and have followed all the rules. We know that they may require us to go back to masks, or other restriction's at any time. Brandon has put back on the two pounds he lost while in the hospital. Although drinking is his least favorite activity we are managing to get the minimum amout of liquid in him.

My mom has left after having given us almost 6 weeks of her help!! We miss the extra pair of hands already! I am feeling a tiny bit better. Some of the swelling has come down but I'm still not able to get into my jeans!!! I drove to the store yesterday for the first time since surgery! I am still extremely tired after doing any amount of activity. This has left alot of work on Mike. He has been going non-stop since we came out of the hospital! It seems there is always something that needs to be done.

Fall has officialy begun here in Pittsburgh. The trees are turning red and yellow and all the corn fields have been picked. It has been warmer than usual here but that is supposed to change tonight. They closed the pool in our complex and placed a fountain in the middle. That's when we knew it wouldn't be long before the weather turned cold! It is supposed to be in the 50's tomorrow morning and in the 30's at night all week!! It has been neat to see the season's change.

I hope this update finds you all well! Julie

» Mike's blog

New Pictures!! / Fall Festival!!

Submitted by Mike on Wed, 10/17/2007 - 5:28pm.
Hi All-
We put a couple new pictures in the photo album.
Brandon went this morning again for blood work, still waiting on the results. The Doctor's call us on the same day so we can immediatly make medication changes. The weather has been pretty cold here-(it hit 30 the other night)!!!! We can never get the apartment to warm up - we have even had to run the HEAT a couple of times!!!!! I will try and update the journal after we here from the Doctor's.

***Don't forget the Fall Festival is this Saturday!!! Check out the activities tab for more info.***

Julie

» Mike's blog

Fundraising/Donations

Submitted by Jamie on Fri, 10/19/2007 - 5:21pm.
Hello everyone it's Jamie. For those of you who don't know me, I am Julie's sister and Brandon's COTA campaign coordinator. I have received a few e-mails asking about COTA and the donation process. I wanted to explain a little bit about COTA. The Children's Organ Transplant Association (COTA) is a national 501(c)(3) charity. COTA helps children and young adults who need or have had a life-saving transplant by providing fundraising assistance and family support. All funds raised are available throughout Brandon's lifetime for Transplant related expences( Brandon's "new" kidney will only last approx.10-15 years - then he will need to be transplanted again). TAX-DEDUCTIBLE contributions to Brandon's campaign can be made in any one of the following ways.

Simply click on the "Donate" tab above for secure credit card transactions. Alternatively, checks or moneyorders may be mailed directly to the Children's Organ Transplant Association 2501 COTA Drive, Bloomington, In. 47403. Checks and moneyorders should be made payable to COTA, with "In Honor of Brandon Nolan" writen in the memo line. Donations may also be made in person at any Bank of America branch location using account number 229010235484. If you should have any questions about COTA please do not hesitate to contact me.

Also, we will kick off fundraising tomorrow at the "Fall Festival". Click on the activities tab to find all the details. Stop by and help us make it a huge success!!!!! Please keep checking the activites tab as I will be posting upcoming events soon.

Volunteers are needed to assist with fundraising activites. Individuals and groups interested in more information can contact me via e-mail at jzehnal@msn.com or by calling (954)303-3553.

I look forward to seeing you all tomorrow!!!! Jamie

» Jamie's blog

Happy November!!!!!!

Submitted by Mike on Thu, 11/01/2007 - 11:02pm.
Hello Everyone-
Things here have been moving along slowly. Mike's mom left this morning after having spent the last week with us. She wanted to be home in time for the Benefit Luncheon this weekend! Brandon had a great time playing with "Grammy". Brandon's blood work has not been great. Some Kidney function levels have even gotten a little worse. We go for labs again on Saturday. Doctor's are watching his blood work closely and have us monitoring his blood pressure from home. They allowed Brandon to carve a pumpkin for Halloween. The only restriction we had was Brandon could not touch the stem. We bought a couple of pumpkins the biggest weighed in at 32 lbs!!! Brandon is now allowed to go out of the house about once or twice a week in addition to hospital visits. Still no crowded places, malls, stores, flowers, animals, ect. We took him Trick-or-Treating last night. He was a Giraffe!! I bought Brandon all the costumes I could find in his size and brought them home so he could try them on and pick out the one he wanted. The township we are living in only allows kids to Trick-or-Treat between the hours of 6pm-8pm and requires you to have a front porch light on. His Halloween restrictions were not to go to a door with a group of kids, not to go inside anyone's house and to try to keep his hands clean. It worked out perfectly because most kids went elsewhere. We did not have one single kid come to our door and there was very few people out. He had a blast!!! Mike carried him up three flights of stairs in each building so he could get to all the apartments with porch lights on!! It was 48 degrees out so we had coats on!!!! It was nice having Mike's mom here for Halloween! The weather here has been COLD and we now carry the ice scraper and brush in the car at all times!! The yard men have pulled all the flowers out in the whole development. The pool no longer has the fountain in it now it's completely covered and the pool furniture has been put away in preperation for winter!!! I am supposed to go back to the Doctor's and have blood work done this month. I am still very tired after doing any activity and I still have pain on my left side, but I continue to improve a little every day. Brandon's eating still has not improved. Every meal is a challenge!

It is 26 degrees out right now!!!!!!!!!!!!!!!

Thank you again for all of your cards and prayers!!

Please leave us a message in the Guestbook as I will be saving all of them for Brandon's scrap book. I want him to see all the love and support he had during this difficult time.

****Don't Forget The Benefit Luncheon is This Saturday- see the activities tab for more information.

Happy November, Julie

» Mike's blog

Brandon's Kidney Function Levels Get Worse

Submitted by Mike on Fri, 11/09/2007 - 7:10pm.
Brandon's Kidney function levels have gone from bad to worse. Doctor's, as of yet, do not know why Brandon's Kidney is not functioning at 100%. They sent him for a Renal Transplant Ultrasound yesterday. The final radiology results are not back yet. They have increased some of his medications and have asked us to try and get at least 6 extra ounces of water in him. This is to ensure we do not have any hydration issues. That brings his total daily liquid intake to between 45-50 ounces(You can imagine what we are doing all day long!!!). They are trying to avoid having to preform a Kidney biopsy. The complication and rejection rate from doing a biopsy is very high but Doctor's have told us unless his labs begin to improve we will have no choice. We took him to the hospital again this morning for repeat labs. Still waiting on the results. These labs will be reflective of the water and medication changes. We should know some of the basic lab results tonight but Doctor's want to see all of the test results before deciding the next step. We will let you know what happens.

**** We want to send out a BIG THANK YOU to all of you who attended the Benefit Luncheon and an even BIGGER THANK YOU to all of you who worked so very hard to make sure no detail was missed. We look forward to spending next years Luncheon with all of you!!

Don't forget about the Flamingo Gardens Holiday Benefit Flea Market tomorrow- see the activities tab for all the details!!!!

----JULIE

» Mike's blog

Happy Thanksgiving!!!!!

Submitted by Mike on Thu, 11/22/2007 - 5:21pm.
We want to wish all of you a very Happy Thanksgiving!! We have so much to be thankful for! I have been busy cooking Thanksgiving Dinner. This has been one day I Really miss my mom!!( I have never cooked the Thanksgiving turkey before!!) Brandon is taking a nap so we will be eating our holiday meal a little later than usual. It is very cold and windy outside and we are supposed to have snow later this evening! I have not decided yet if I will be hitting the stores tomorrow morning. I LOVE shopping on the day after Thanksgiving but have never shopped in the snow!!!

I want to thank you for all the Birthday cards, gifts and messages!! We spent almost 7 hours at the hospital with Brandon on my B-day. (Last year on my Birthday we had a 10 hour Transplant meeting with the Children's Hospital of Boston!!) Mike and Brandon tried to make the best of the evening. We had cake, candles, decorations and presents! Brandon had a blast helping me open my gifts and eating the cake. The WHOLE apartment was covered with ribbon and torn pieces of wrapping paper!!!!

As for Brandon-- His kidney function numbers still have not improved. The ultrasound showed urine backing up into the kidney. We have since had two more ultrasounds and have meet with the urology team. Doctor's have not ruled out a kidney biopsy but for now are holding off. We have increased ,yet again, his medications and will be starting him on another new medicine Saturday. We are hoping this new medicine does the trick!! The Doctor's have been back and forth with us about doing the biopsy. The risks are very high so they are trying to avoid doing one but have just about exhausted all other options!

Happy Thanksgiving, JULIE
P.S.-- Thanks for making the CAR WASH a big success!!

» Mike's blog

Brandon's back in the hospital

Submitted by Mike on Wed, 11/28/2007 - 4:56pm.
Hello all-
Just a quick note to let you all know Brandon was admitted into the hospital last night. Yesterday started out as usual, but by mid-afternoon Brandon had a fever of 103.5 and was not acting like his normal self. We were instructed to bring him into the E.R.

Several blood tests and x-rays were done and Brandon was admitted. Not much has changed today, he still has a fever of 101.5 on tylenol. Brandon(mommy & daddy too)did not sleep much last night. He is in a shared room and of course they poke him ALL night long! Doctor's are waiting on some culture's to grow but are sure he has an infection. We can not seem to bring the fever down and this of course does not help with his mood! Brandon will spend the night again tonight and we will see how he is feeling tomorrow. Transplant patients are watched very close with any sign of infection. Brandon has also developed a rash. He is (for now) still drinking, but his fever is high enough that they are going to start him on some I.V. fluids tonight. We are back in the Transplant unit so we have some of the same nurses. While we would give anything not to have to spend another night in the hospital, Mike and I are so glad we are still in the area!!!!! The same Transplant team is seeing him in the hospital.

I will post another update tomorrow when some test results come back. JULIE

» Mike's blog

Hospital Update

Submitted by Mike on Sun, 12/02/2007 - 4:51am.
Brandon is still in the hospital. We are all VERY TIRED! Brandon's fever came down yesterday after four days of 103-104. Brandon does have an infection. This infection is attacking his bone marrow. The Doctor's wanted him to have a blood transfusion which we said no to. Then yesterday his Kidney function numbers doubled.(These are the same numbers we have been watching) Brandon's heart and new kidney started being effected from the lack of red blood cells(bone marrow make the red blood cells). Mike and I had no other choice than to give him the blood transfusion. Mike nor I are allowed to give brandon blood. My family is also on the no list. Because I gave him the organ, my DNA in the blood would prevent him from ever getting another kidney from my side of the family. This would include any children I or my sisters have. If Mike gave blood he also would never be allowed to give Brandon a kidney.(His transplanted kidney will only last apprx. 10-12 years, then he will need another one!!) The blood was from a donor bank. Today Brandon's blood pressure is very high and a low grade temp has returned. Doctor's did another ultrasound to see if urine is backing up into the new kidney. The test showed some urine sitting in a pocket in the new kidney. His bottom is raw, as the medication is very strong. He screams with every diaper change. We are having about 10 stool diapers an hour!! Brandon has not eaten in 3 days and is taking in very little liquid. He was on I.V. fluids but he started to get very puffy. Around midnight last night we had to page the doctor and have the fluids stopped. His urine output has decreased. Doctors must get his kidney function numbers stable before he can be discharged. There is some very important tests we now have to put Brandon thru. These tests are very painful and invasive. We have to wait until the infection is gone before these can be done, probably next week. Doctor's are warning us that there is a very good chance we will have to put Brandon back into surgery in the following weeks. Sorry this update took so long to get posted we have been going non-stop! It is after 5 am and I am going to lay down for a few hours. It's freezing here! Ice is covering the ground. Snow tomorrow!! Temp is 18 right now!

I will try to update tom. Never know what the day brings!
Please keep us in your prayers!!!! JULIE

» Mike's blog

Brandon is feeling a little bit better

Submitted by Mike on Mon, 12/03/2007 - 5:12pm.
Brandon is still in the hospital but is feeling a little bit better. We had another long night and Brandon changed rooms early this morning. His Kidney function levels are a little bit lower today. His white count is still high, but better than it was. Doctor's think they have the infection under control. Brandon's culture's showed an infection in the bladder that spread to his transplanted kidney. Because he has no immune system the infection was able to attack the bone marrow. Doctor's still need some more tests to determine why he had a bladder infection. We have to see if the urine that is backing up into the new kidney was the cause. If this was the reason then these infections will become very frequent. The only solution is to implant his ureter inside his bladder(lets hope this is not the case!!). That procedure would require Doctor's to re-open his mid-line incision and a 2-3 week hospital stay. For now he is starting to drink small amounts and has had a little bit of baby food. The liquid volume is very important to insure the new organ is hydrated. We are hoping that we can take him home soon.

Thanks for all the messages and for the prayers!!!!
JULIE

» Mike's blog

HOME SWEET HOME!!

Submitted by Mike on Wed, 12/05/2007 - 4:19pm.
Brandon was released from the hospital and was sent home on oral antibiotics. We have to take him back to the hospital in the morning for some lab work. Brandon is very glad to be home with his toys. He gave them all a kiss and told them how much he missed playing with them!!! Mike and I are also very glad to be back home. Being in the hospital round-the-clock for a week can exhaust you!! Brandon will be on the antibiotics for 10 more days, then we will start to schedule some of the tests to determine if surgery will be needed.

It has been snowing here for the past few days! Brandon wants Mike to make him a "Snowman Family"!!(I'll be sure and take some pictures if that happens!!)

We were able to get Brandon a real Christmas tree!! We decided that we should cut one down ourselves at a tree farm. This ADVENTURE took place 3 days before our hospital stay. We can now truely appreciate how lucky we are to be able to go to a tree stand at home and just pick one out!! They gave us a saw and a cart to pull the cut tree in. The poor tree never made it inside our apartment. We put it on the back porch and it stayed there until last night. It was frozen and covered in snow but we did manage to put it in the stand and give it some water! Doctor's said Brandon could be around a live tree as long as he dosen't put it in his mouth and we wash his hands anytime he touches it. It is 12 degrees out right now and we have about 8-9 inches of snow on the ground. The local news said this is just a little taste of whats to come!!

Thanks for all of the messages- Brandon looks all the time to see if anyone wrote!! Love, Julie

» Mike's blog

Car Wash/ Sunday December 16th

Submitted by Jamie on Sat, 12/15/2007 - 12:48pm.
Hope this message finds you all well. I just wanted to remind you all about the Car Wash this Sunday. Hope to see you there!!!!!!!! - Jamie

CAR WASH / SUNDAY DECEMBER 16th

Tower Shops-- Davie-- Taco Bell parking lot

Noon-3pm

DIRTY CARS NEEDED!!!!!!!!!!!!!!!!!!!!!!!!

If you would like to volunteer to work the car wash or any other fundraising event for Brandon please contact me at (954) 303-3553 or via e-mail at jzehnal@msn.com .

**************** School service hours can be earned by volunteering at any fundraising event for Brandon!!!****************

» Jamie's blog

HAPPY NEW YEAR!!!!

Submitted by Mike on Tue, 01/08/2008 - 5:35pm.
Hello All-- We hope you all had a very Happy Holiday and we want to wish you a Happy New Year!! Sorry we haven't updated this site in a while. Things around here have been crazy(as usual)!!

Before I fill you in on the latest with all of us Mike and I want to wish someone very special a Happy Birthday! TODAY IS BRANDON'S 3RD BIRTHDAY!!!!!!!!!!!!!!!!!! While today is about cake and presents for Brandon it has a whole other meaning to Mike and I. When Brandon was born we were told that he would probably not live to see his 1st Birthday. So much has happened in the last 3 years but we are so thankful that we are still all together. Only God knows what the future holds for Brandon but we are so blessed to have him in our lives. HAPPY BIRTHDAY "KING BABY NOLAN" WE LOVE YOU-- MOMMY and DADDY

After Brandon's last hospital stay he seemed to be doing better. We were able to take Brandon home(to Florida) for Christmas. We had not been back home in over 5 months. We were all very excited. The trip started out with a 7 1/2 hour delay due to weather conditions. Then Mikes truck wouldn't start. After getting off to a rocky start everyone had a great time. Brandon was so happy to see all of his family. We spent Christmas eve with Mike's family and Christmas day with mine. Even though Brandon was a little concerned, Santa found him just fine in his Florida house!!! Brandon was in heaven playing with his cousins and visiting with everyone. While Brandon's Birthday was still a few weeks away we managed to squeeze in a pizza party with all of his family!! The Doctors only cleared us for a few days but we tried to make the most of it. Brandon's medical routine had to continue in Florida. His medications were delivered to our door and we had to take him for blood work 3 times during our short stay. Brandon developed a little cold after we arrived but managed to fight it off without a hospital admission. While in the airport security line we recieved a phone call from Brandon's Doctor's in Pittsburgh. Brandon's most recent blood work had come back showing critically low blood levels and a white count of 2. They were very concerened and talked with us about needing to admit him as soon as we returned. We agreed to bring him in first thing in the morning and go from there.(Our flight back to Pitt. landed around midnight Friday the 28th) This was not the phone call we were expecting. Brandon didn't get to bed till around 4am and we had a long day ahead of us. To top this all off this was Mike's Birthday!!!(and he thought I was the only one lucky enough to spend it in a hospital!!!) We ended up spending 8 hours Saturday, 7 hours Monday, 5 hours Tuesday,and 8 hours Wednesday at the hospital. Every day included an E.R. visit where they had to give Brandon shots in the leg. We were all hoping not to have to admit him. So far the shots are working but not as well as they would like. We have started Brandon on some new medications and are keeping our fingers crossed that they work. On top of everything else his recent blood work has come back testing positive to the B.K. virus. The B.K. virus is something that is in the air everywhere. We all come in contact with it on a daily basis. People who are very immunosupressed can developed the virus at any time. First you test positive in your urine then it spreads to the blood. If not treated right away it spreads to the lymphnodes and can cause cancer. It is not something he can spread to others but it will attack his new Kidney. It has spread to his blood and we are trying to keep it from getting any worse. Brandon goes again in the morning to repeat his blood work. Let's hope things don't get any worse!!! Each week seems to bring new challenges but we contine to take things one day at a time. Here's hoping that 2008 is a VERY HAPPY and HEALTHY Year!!!!! JULIE

» Mike's blog

LONG OVERDUE UPDATE

Submitted by Mike on Wed, 04/02/2008 - 1:48pm.
Hi Everyone----

Well, we are still living in Pittsburgh ( much longer than we expected). On the last update I told you about the B.K. virus and that Brandon had tested positive. It got worse and spread from his urine to his blood. As the levels increased the Doctor's became very concerned. We had to admit Brandon in the hospital for some I.V. medication. The problem was the medicine was just as dangerous as the virus. Both attack the transplanted organ. Mike and I had to be "briefed" on the dangers of administering this very powerful medicine. After we understood all of the risks we had to sign consent forms to release the hospital and Doctor's of any liability. With our stomach's in knots we choose to give Brandon the drug. Four Doctor's, the pharmacist and the nurse all had to check the same syringe of medicine before giving it to Brandon.( We were so-o-o-o nervous) They gave him the smallest possible dose over a 12 hour period of time. His vitals had to be checked every 15 minutes! The only positive thing that day was that the "Penguins Hockey Team " came to visit the hospital. Brandon thought they were all there just to see him! They brought him a hat, poster, blanket and a signed player yearbook. Now every time he see's them on T.V. he yell's "Hey those are my friends!!" In addition to the I.V. medicine the Doctor's also added an oral medicine to our daily routine. Brandon's blood is being drawn very frequently and Doctor's are watching the results closely. To date, his blood is beginning to improve and we have not yet had to give another dose of the I.V. medication.( usually it takes several I.V. doses before you see results!) We have our fingers crossed!!

The weather here in Pittsburgh has been COLD! VERY COLD!!! We have had several heavy snows and have run the heat on a pretty much continuous basis!! Brandon was able to make his 1st snowman (with Daddy's help of course). Unlike Florida, we get very excited if the thermometer reads 20 or above!!

Brandon continues to grow and speaks very well. He has learned his ABC's, can count to 10, knows all of his shapes and is working on his days of the week. We have been potty training Brandon and after a couple of bumpy weeks it seems like he's getting the hang of it!

As far as his "new kidney" goes it seems to be functioning very well. We still have to get very large volumes of liquid in him but with alot of creativity we seem to accomplish this on most days! The days seem like they are just flying by. While Brandon loves "living" in Pittsburgh he ask's every day when he can go back home to Florida to see all of his "Family". Hopefully that day is coming soon!!!! --- Julie

» Mike's blog

GOLF TOURNAMENT

Submitted by Jamie on Mon, 04/28/2008 - 2:52pm.
Hello Everyone-

I am writing to fill you all in on the upcoming Golf Tournament

1ST ANNUAL GOLF TOURNAMENT TO BENEFIT BRANDON NOLAN

DATE: May 10, 2008

REGISTRATION and CONTINENTAL BREAKFAST: 6:30-7:30a.m.

RANGE IS OPEN (complimentary): 6:30-7:45a.m.

SHOTGUN START AT: 8a.m.

HILLCREST GOLF and COUNTRY CLUB

4600 HILLCREST DRIVE

HOLLYWOOD, FLORIDA

COST: $135.00 per golfer ---- INDIVIDUALS AND FOURSOMES WELCOME

This includes a Round of Golf--Cart--Gratituties--Continental Breakfast--Shirt--Goodie Bag--Snacks and Drinks on course--Lunch (prepared by Char-Hut)--Awards and Prizes

TEST YOR SKILLS IN:

-LONGEST DRIVE

-CLOSEST TO THE PIN

- HOLE IN ONE TO WIN A MERCEDES BENZ C-CLASS

-STANDARD SCRAMBLE FORMAT

If you or anyone you might know would be interested in playing in the tournament please contact me at (954) 303-3553 or via e-mail at jzehnal@msn.com and I would be happy to get a registration form to you.

****SPACE IS LIMITED PLEASE REGISTER IN ADVANCE*****

» Jamie's blog

YET ANOTHER HOSPITAL ADMISSION!!

Submitted by Mike on Mon, 05/19/2008 - 10:13am.
Just a quick update to let all of you know that Brandon is back in the hospital. Today is day 4 of this stay. Brandon started having pain in his stomach and a fever. He has an infection and is back on the transplant floor. He's not a happy boy!!! It took five tries at an I.V.(a two hour production of pinning him down) and his whole arm is on a board. Doctor's are watching him closely as his fever comes and goes. He has been running anywhere from 101-104.6. Mike and I are tired but so glad we are still with his transplant team. Brandon is drinking but is not interested in eating. He is calling his I.V. a "rocket" and when they run anything into it it's the "gasoline". As usual anyone that will listen is begged to take it out and let him go home!! They poke him all hours so he has not had more than an hour or two of sleep at a time. They are waiting on blood cultures to come back and will go from there. We will try and update later if any results come back.

Keep us in your prayers!!! Julie

» Mike's blog

Brandon's feeling a little better

Submitted by Mike on Tue, 05/20/2008 - 3:53pm.
Well, Brandon has a urinary tract/kidney infection (again). They have sent him home on oral antibiotics. His ultrasound's showed that urine is backing up into the transplanted kidney and they do not believe the bladder is functioning properly. They want us to bring him back in tomorrow for more labs and to meet with the urology team. This infection was very severe and they are not sure what if any damage has been done to the transplanted kidney. They are thinking about doing another voiding cystourethrogram (VCUG) in which a catheter is placed into the urethra and the bladder is filled with a liquid that can be seen on x-rays. Brandon must be restrained during this test because they can't give any pain med's and he goes bananas! Another option is to do surgery. This is a last resort as far as Mike and I are concerned!! They would be re-opening his stomach and re-routing his ureter into his bladder. (NO THANKS!!) As for now he is starting to feel better and is glad to be home. We have not told him yet that he has to do blood work tomorrow his poor arm's are black & blue. Not sure where they will attempt to stick him- not too many places left!!

» Mike's blog

Quick update

Submitted by Mike on Wed, 05/21/2008 - 3:36pm.
We are still down at the hospital with Brandon meeting with follow-up Dr.'s. We are in between apt.'s so I popped down to the library to post this update. It's been a long day and it's still not over!! Going on 8 hours here so far! On the bright side Brandon is feeling better each day. Still not back up to 100% but getting better. Today we're trying to decide what the next step will be. His lab's this morning showed that he is VERY anemic and that this infection (like the last) has also attacked his bone marrow. We are going to double an iron supplement for a few days in the hopes of avoiding another blood transfusion. As far as the VCUG test goes, still very likely but they want to wait untill the infection is gone and he finishes all the antibiotics. They believe by placing a catheter now his chances of infection will double. Still have several Dr.'s to see today but it beats having to sleep one more night in a hospital chair!!!! Julie

» Mike's blog

Car Wash/ Volunteers Needed!!!

Submitted by Jamie on Sun, 07/27/2008 - 5:15pm.
CAR WASH

VOLUNTEERS NEEDED!!

When: Saturday August 2, 2008

10am - 2pm

Where: The Tower Shops in Davie

"Taco Bell" parking lot

***Volunteers are needed to work the car wash. If you or anyone you know are available please call Jamie Zehnal @ 954-303-3553***

*** School service hours can be earned by volunteering at the Car Wash!!!!

» Jamie's blog

HAPPY 1 YEAR KIDNEYVERSARY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Submitted by Mike on Thu, 08/28/2008 - 12:52am.
Hello Everyone--

Today was Brandon's 1 year Kidney Anniversary!!!!!!!!! We had hoped to be able to celebrate at home with all of his friends and family however we are STILL living in Pennsylvania! Since we last updated Brandon has been in and out of the hospital dealing with a variety of issues. He has had several renal ultrasounds and DID end up having to have the V.C.U.G. test that we were dreading. This time he was given valium to try and keep him calm (no such luck!) Things are beginning to improve and we are hoping we will be able to return home soon!!

Today, however, we spent the day celebrating the wonderful gift we've been given! We took Brandon to the Pittsburgh Zoo and Aquarium(Check out the photo's in the photo album). He had so much fun looking at all the animals!! Going to the zoo at the end of August is much different in Pennsylvania than in Florida. It was 68 degrees out and we wore sweatshirts!!!!!!! After the zoo we went to eat at the Olive Garden. We brought a cake and surprised him! What a GREAT DAY!! There were no Dr.'s or lab visits today, just a whole lot of well deserved fun!!

Brandon continues to grow and is very bright. We have taken down his crib and he is now in a "Big Boy" bed! We bought him a Thomas the Train toddler bed and he LOVES it!!! The season's are beginning to change here once again. Leaves are turning beautiful colors and the day's seem to be getting cooler and cooler.

Mike and I can not believe Brandon's Transplant took place a year ago. Where does the time go?

Since Brandon's Transplant

He has had- 95+ lab draws!

Taken med.'s- 3,950 times!

We have driven over 6,700 miles back and forth to the hospital!

Brandon has grown 5 inches and gained 6 pounds!

Brandon has increased 3 1/2 shoe sizes and 4 whole clothes sizes!

And of course we have spent a COUNTLESS number of days wondering what to do next for Brandon's care!

We had no idea a year ago what the next 12 months would bring. Only taking each day as it came. Watching Brandon play with his toys or run around the house only reminds us how blessed we are to have him in our life! It also reminds us how lucky we are to have Friends, Family and Co-Worker's who have stood by us this past year! THANK YOU All SO MUCH!!! Love, Mike and Julie

» Mike's blog

Welcome Home Brandon!!!

Submitted by Mike on Sun, 10/05/2008 - 1:02am.
Hello Everyone- Thank you all so much for checking in on Brandon. As most of you know Brandon has had a very long year (mom and dad too). He has had many setbacks and spent many nights away from home. However, Brandon has been allowed to return HOME!!! While his health is not 100% he is very glad to be back home!! Mike and I have been very busy transitioning Brandon's care. There is so much involved in transplanting a child out of state!! Brandon's days have been spent going from doctor to doctor. Brandon is still refluxing urine into his transplanted kidney. The lastest tests show it is a grade 5 reflux (the most severe). His Doctor's tell us this puts him at an extreme risk for multiple infections. They have spoken to us about the possibility of needing to do another surgery in the near future. For now Brandon is enjoying seeing his family he missed so much!!

There never seems to be a dull moment in this house---- most of you have heard or seen by now that money was stolen from one of Brandon's donation boxes. The box was inside the Maggie Moo's ice cream parlor located in the Tower Shops in Davie. We would like to say a special Thank-you to Channel 10 and Channel 7 news for sharing Brandon's story. If you missed the news coverage you can log onto www.local10.com and www.wsvn.com .While the money has not been recovered the suspects have been arrested.

Ways you can help:

*** If you have or know of a business that would would be willing to place a collection box at the counter for Brandon please call Jamie Zehnal @ (954) 303-3553.

*** If you would like to make a secure online donation you can do so by clicking the "Donate" tab at the top of the page.

*** Checks or Moneyorders may be mailed directly to the Children's Organ Transplant Association, 2501 West COTA Drive - Bloomington, IN 47403 . Checks and Moneyorders should be made payable to COTA with "In Honor of Brandon N." written in the memo line. Please make sure to reference Brandon's name in order to insure the money goes in his account!!!

Children's Organ Transplant Association (C.O.T.A.) is a 501(c)(3) charity and donations are Tax-Deductible!!!

THANK YOU ALL FOR YOUR CONTINUED SUPPORT!!!!!! Love , Julie