History

Wednesday, September 1, 2010 5:52 PM CDT

August 31, 2010

Brandon is recovering very well. Just a day after his surgery, the medical team with Daddy's input decided to give Brandon a test, to have him breath on his own. He was breathing on his own for an hour and 30 minutes, way to go Brandon.

Brandon is back to his feeding now, on continous feeding. So far, everything is good.

Wednesday, September 1, 2010 5:52 PM CDT

On August 30, 2010,

Brandon went in to Children's Hospital, St. Paul for his Tracheostomy surgery, the surgery started at 2:06 PM and it lasted for about 45 minutes, Daddy was able to stayed with Brandon in the OR until he was under anesthesia. We were waiting for Brandon at the Family waiting room, with us was DeAnne (Brandon's nurse from Edelweiss Home Healthcare), Paul (Brandon's Godfather), me (Mulan), Daddy (Sampson) and big brother Sampson who have said that he want's to be with Brandon when he wakes up after his surgery.

For me, it was the longest 45 minutes of my life. At about 3PM, the surgeon came out and informed us that the surgery went well but she had a hard time intubating Brandon because of the minimum amount of space in his mouth that caused Brandon lost 2 of his teeth :( and she also mentioned that it was a perfect timing of having the surgery soon because it would have been tough if it was an emergency situation.

A nurse accompanied us to PICU patients family room and there we were waiting until we can be with Brandon. It was 3:45PM until Daddy decided to check in PICU, 15 minutes after he called me and we both went in to PICU, Room 13 and there I saw Brandon. Tears falling down to my cheek as I was approaching Brandon, he was looking up with his eyes wide open and looking around and as I was looking at him, he look at me and deep in my heart I hear him saying "Mommy, I am back and this is so different, I can see you a lot better now" We were looking at each other and I can feel how much he loves me, I gave him a tight hug and whispered to him how much I love him and he gave me a smile.

Brandon is amazing and he is my hero!

Saturday, February 28, 2009 10:34 PM CST

Hello Everyone!

I would like to invite you on March 14, 2009 at 8:00 AM to 10:00 AM, Breakfast for a cause at Applebees, Lakeville, MN.

We are selling coupon for $5.00. You can buy the coupon now or at the door on March 14. You can visit us www.brandonrolenfoundation.com for more information or email me at malune@rolenmotion.com

Hope to see you there.

Thank you.

Thursday, February 19, 2009 10:35 PM CST

It's been a while since I updated this website. :-)

Brandon is now 6 years old. We had a movie birthday party for him last Feb 8, his birthday theme was Nickelodeon so most of the kids came with their favorite Nickelodeon outfit. Brandon love "Go Diego Go" so his birthday decor was all Diego, it was a fun party for everyone and most especially for my Angel Brandon, he loves being surrounded with kids.

In August we went to Disney World. The trip was a wish granted by the Make a Wish Foundation for Brandon. We stayed at Give Kids the World Park. It was a great experience for us, a vacation that we will treasure for a lifetime. it was our first vacation as a family and we are hoping and praying that we will be able to go places with Brandon in the future.

Brandon is growing so fast. He is now 53.4 lbs. and is bigger than his older brother. His school teacher come to our home to teach Brandon, he is in kindergarten. He is learning new things with his Dynavox, a communication device. He continues to receive excellent nursing cares from Edelweiss Home Healthcare. He is a very strong willed boy. We continue to pray that GOD will always show His miracles through Brandon. We are very aggressive with the use of his vest, cough assist, bipap to keep him healthy. He had couple of arm injuries and had neck pains recently. Brandon had dental surgery last September. A kidney specialist has been added to Brandon's list of doctors which will see him once every 3 months.

I will try my best to update this website. You can also visit us at www.brandonrolenfoundation.com

Thank you and God bless always.

Thursday, February 19, 2009 10:35 PM CST

It's been a while since I updated this website. :-)

Brandon is now 6 years old. We had a movie birthday party for him last Feb 8, his birthday theme was Nickelodeon so most of the kids came with their favorite Nickelodeon outfit. Brandon love "Go Diego Go" so his birthday decor was all Diego, it was a fun party for everyone and most especially for my Angel Brandon, he loves being surrounded with kids.

In August we went to Disney World. The trip was a wish granted by the Make a Wish Foundation for Brandon. It was a great experience for us, a vacation that we will treasure for a lifetime. it was our first vacation as a family and we are hoping and praying that we will be able to go places with Brandon in the future.

Brandon is growing so fast. He is now 53.4 lbs. and is bigger than his older brother. His school teacher come to our home to teach Brandon, he is in kindergarten. He is learning new things with his Dynavox, a communication device. He continues to receive excellent nursing cares from Edelweiss Home Healthcare. He is a very strong willed boy. We continue to pray that GOD will always show His miracles through Brandon. We are very aggressive with the use of his vest, cough assist, bipap to keep him healthy. He had couple of arm injuries and had neck pains recently. Brandon had dental surgery last September. A kidney specialist has been added to Brandon's list of doctors which will see him once every 3 months.

I will try my best to update this website. You can also visit us at www.brandonrolenfoundation.com

Thank you and God bless always.

Wednesday, February 28, 2007 4:12 PM CST

Brandon had a costume birthday party, kids came with their favorite costume or character, Brandon had a blast. It was also a contest, Sampson being the judge pick a Pirate as a grand winner. We brought Brandon to the living room on his power stroller for a cake time but he was already asleep before we finish singing happy birthday, no matter how loud we were Brandon was sleeping soundly.

I thank GOD, for giving Brandon to us up to this day. I can't believe Brandon is 4 years old. Brandon is truly a miracle. He taught us to live life to the fullest, life is wonderful and life is full of love.

Thank you dear Lord for being with us all the time, thank you for showing us miracle and that is our angel Brandon!

Wednesday, February 28, 2007 4:08 PM CST

The Brandon Rolen Foundation had their 1st Annual Ice Fishing Tournament. Thank you everyone who made it to the event despite of the weather that day. Thank you for all the sponsors, donors, participants, to those people who registered but didn't make it THANK YOU VERY MUCH! To the Board of Directors, thank you for your hardwork and dedication to this great cause.

Monday, February 12, 2007 10:37 PM CST

Hi everyone,

Brandon is 4 years old now! WOW!! what a miracle. Brandon is such a tall boy and he weight 36.7 lbs, as he gets older he looks exactly as Daddy.

Thank you everyone for coming to Brandon's birthday party, for all your support, love, prayers all these years, for those who sent birthday greetings, Thank you.

Brandon had a special guest on his birthday party, Sophia (SMA-1) came over to celebrate with Brandon. Brandon and Sophia both enjoy each others company.

I will post picture soon.

Thursday, December 1, 2005 11:31 PM CST

Thank you everyone for visiting Brandon's website. I apologize for not updating.

Brandon is really doing great and growing and still love his DVD. In August, the Brandon Rolen Foundation had the 2nd Annual Golf Tournament and it was truly a success, attended almost 200 golfer. Thank you Scott Anderson and JoAnn Anderson (my in-laws) for organizing and for all those who help and to all the sponsors and golfers THANK YOU THANK YOU VERY MUCH. We appreciate your kindness and support to the foundation and to our family.

Last May, we brought Brandon to Children hospital for he wasn't breathing, he stayed there for a night, we could not get his Saturation above 95 and he was using the Bipap 24 hours. Thus, his pulmonologist ordered a Vest machine (this will do the pounding on his back to losen fluid in his lungs) and a cough assist and we think that this really help Brandon a lot, since then he sounds perfectly good. We saw his neurologist last July and he is going to see him again on January. Brandon has his new bed now, a hospital bed which is very cool for I can lay down with him and read books and so with his brother Sampson, he will lay down next to Brandon and watch TV/DVD together. We are working on getting a stroller for him and we are very much excited about this because we can bring him outside now as much as we want, we are even planning of going to the Zoo once the stroller arrives...

Brandon still have nursing cares from Edelweiss homecare and he has a wonderful team of nurses.

Brandon's teacher, PT, OT, Speech Clinician from Farmington school district are helping us on getting Brandon communication device so he can communicate with everybody better.

Sunday, January 2, 2005 11:24 PM CST

Christmas 2004

Dear Friends & Family,

This year is really a blessed one! Each day we live is a miracle. We thank GOD for all of the blessings that He has given to us and for having Brandon all this years and for giving us the strength to face all challenges that came into our lives.

Brandon celebrated his 1st Birthday last February. He had a blast! Friends and family came and made birthday wishes for him. As everybody knew, doctors have told us that “Brandon will never reach his 1st birthday” but Brandon’s broke that record. Brandon is one of the very few SMA 1 patients to reach 1 year old. Brandon’s case of SMA 1 is very severe, but because of our love and care, Brandon is going to celebrate his 2nd birthday this February 8, 2005. So, mark your calendar for this upcoming BIRTHDAY PARTY. Brandon is doing well. He is very charming, adorable, loving, and is very content with what he has. He loves having company and riding his wagon. Whenever he has a doctor appointment, we transport him in his wagon to the van and he just loves the ride and loves watching the clouds and trees. He has his own portable DVD player and a lot of DVD in his collections. From Baby Einstein, Dora the Explorer, Blues Clues, Leap Frog, Sesame Street, Fisher Price Baby and all others learning/educational DVD’s, he really enjoys movie, but we are careful not to show him scary scenes, such as in “Finding Nemo, the shark attacking baby fish, because Brandon will cry and begin to desaturates (low oxygen level) from crying so hard. He loves watching DVD with his big brother Sam. We see his neurologist once every 2 months at Gillette Specialty Clinic, his neurologist is really impressed with Brandon and the way Brandon responds to our care. He has 24 hours nursing coverage by Edelweiss Home Healthcare www.edelhomecare.com play movie. He also have physical therapy, Occupational therapy, Speech therapy, and a teacher from Farmington School district coming to our house to play with him and help him with his therapies.

March 2004, we moved to our new house in Farmington, MN. We have been searching for months and finally we found this one, the perfect house for us and most especially very ideal for Brandon.

April 2004, Baby Sam turns 3 years old. After his birthday, Lola (Grandma, Mulan’s mom) left for the Philippines to visit her other grandkids. So, Baby Sam goes to daycare at Maria’s Home day care, and he loves it very much. At 3 years old, Baby Sam knows how to spell his name “Sampson”, count, sing and write the alphabet. He loves books, he won’t go to bed if we don’t read stories for him. He also loves playing computer games. He wants to go to school now and wants to become a doctor. Baby Sam loves his little brother Brandon so much. They watch movie together, play together and even sits with Brandon in bed. Baby Sam is very gentle with his brother. At a very early age, he learned of Brandon’s conditions, never get fussy or jealous when it’s time for Mommy and Daddy to be with Brandon. Baby Sam is always there, observing and noticing all the challenges that we are facing, but yet he is very understanding of everything. We always have him takes part in all Brandon’s cares. He is very glad and happy to help his little brother. We always hear him say, “I love you Brandon.” Baby Sam is very friendly with the nurses too.

We are really blessed with Sampson and our angel Brandon.

I, (Mulan) went back to work, but on and off basis due to Brandon’s condition. We thank Progressive, co-workers, friends, supervisor, and managers for their continuous support and prayers for Brandon and for our family. It is very much appreciated.

As everybody knows, Sampson loves computers and creating something from scratch. He spends his spare time on the computer and thought of making money from his hobby. Yes, Sampson started a business called “Timeless Films, Inc.” capture-transfer-direct-create-edit-produce-SD-HD-broadcast-dvd-internet-movies. He’s been busy doing a lot of projects from infomercials, to weddings, to Christening and more movie transfer to DVD. It is fun watching him working because he loves what he is doing.

The Brandon Rolen foundation, had the first Golf outing in September 2004. Organized by Mike Lowden and Monica. The outing was a success. Thank you for those who golfed with us and for those who gave donations to the foundation.

As of this date, I have been participating in a Bake Sale at work, which is organized by the PIP unit, all proceeds go to charity. Since, I don’t bake, I decided to participate making Chicken Fried Rice. The first day of sale was successful. My chicken fried rice was gone in 5 minutes and my co-workers called it “ Mulan’s Fried Rice.” Well, my husband is so proud of my egg rolls, which my Mom taught me how to make it, so I decided to sell fried rice and egg rolls in the second week. Again, it was sold out. Friends were telling me that I should open up my Philippine Cuisine, and I just say, “Let me think about that.” J

We are all excited for Christmas!! Celebrating JESUS birthday/Christmas in our house with family. Though, I often missed my family way back in the Philippines especially during Christmas, but Sampson’s family is so great to me, they are always here for me. And, to my Filipino friends, thank you very much for making me feel like home.

Sam, Mulan, Sampson and Brandon, wish you a….

Merry Christmas and a Prosperous 2005!!!

Sunday, January 2, 2005 11:21 PM CST

Thursday, June 24, 2004 9:23 PM CDT

December-
The family celebrated Christmas in our house for the 1st time, we brought Brandon to our living room and was very happy partying with everybody (Grandma, Grandpa, Uncles, Aunts and cousins). Surely, he had a wonderful Christmas and received a lot of gifts.

Thursday, June 24, 2004 9:06 PM CDT

Hi Friends and family and to everyone,

It's been a while since we haven't updated Brandon's website. I would like everyone to know that Brandon is doing so great, getting so big at 16 months old Brandon weight 27.9 lbs and 35.5 inches tall and he is talking a lot in his own words.
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September -
Brandon is 7 months old now, we had a cake for him. We celebrate Brandon’s birthday every month and looking forward that he will reach his 1st birthday. September 15, I was alone with Brandon, no nurse and Sampson just left for work but I have my Mom and Sampson with me. This month was the most scary part of my life for Brandon stopped breathing on me. He was pale and not breathing at all my Mom was with me and helping trying to give Brandon oxygen, I suction him but still he was pale, not breathing at all, I was crying and was very scared thinking that Brandon will leave us this time but in my mind I prayed “Brandon not now, GOD please tell me this is not the day) I did everything suction, mouth to mouth and Brandon was still pale and look like his dead but I believe in prayers, I believe in miracle and above all I believe in GOD!! My Mom was with me all the time and was helping and assisting me of what I was doing, she was crying and screaming but when she prayed out loud saying “ PLEASE GOD, SEND BRANDON BACK TO US, WE NEED HIM, WE WANT TO SEE HIM LONGER, GOD, I AM PRAYING FOR YOUR MIRACLE PLEASE” then instantly Brandon start coughing and crying and looked at me that says “ I ‘m back Mommy”. After that moment, my Mom told me that she is very proud of me of not giving up Brandon and she thank me of doing everything I could and she said that this is a miracle in our life.. and the power of love works, Brandon doesn’t want to live us because he knows that everybody loves him. My mom also told me that when I was helping Brandon I keep saying, “I love you Brandon” over and over… We’ve seen the neurologist again and he saw some improvement on Brandon and have Brandon on a case study now. And he told us that he impressed the way Brandon sounds. We are proud!

October –
Brandon is 8 months old. We’ve seen the neurologist and we are very happy for he told us that he never have a patient who’s severe as Brandon that is doing very well. He is so impressed. Brandon says “Dada” now which makes Daddy very proud. We had our family picture taken, and it was held in our house, courtesy of Bruce Schnack Photo of Golden Valley, they bring their studio in our house. Brandon says “Lala” now too for Lola and he also says “Aaa” whenever he sees Mommy.

November –
Brandon is 9 months old now. He passed his life expectancy (8 months). We had a party, we ordered a huge cake for this huge celebration in Brandon’s life. Brandon is doing great and a very happy baby.

Tuesday, September 8, 2003

Brandon is 7 months old today (September 8, 2003). We celebrated his birthday with cake and ice cream. Brandon loves the photographs and all the visitors and gifts. We even gave Brandon some frosting to taste, but he gave a funny look and then smiled and stuck his tongue out. It was great! (1-month of the 2-month life expectancy prediction has passed Â– We pray everyday the neurologist is wrong.)

It is often a struggle for Brandon when he falls asleep. It appears as though he really wants to stay awake and play with everyone. You can just see him fighting his ever-gaining weight of his eyelids. During his struggle to fall asleep he sometimes de-saturates his oxygen level. This is usually because he begins to cry as he drifts off closer and closer to sleeping. Sometimes we have to act aggressively to keep his oxygen saturations up, but most of the time he just wants to hear and see us close up. The simple "ABC's" works great. And even rocking and patting him helps him feel that we are close to him even though his eyes are closed.

Brandon's lungs are still clear, but this is done with a lot of TLC. But, what impresses us most is his ability to cough. And when he does cough, we immediately give his abdomen the support it needs so Brandon can make the coughs more productive, and they are. We really believe that this is one of the major factors that is allowing not only our attention to detail on his needs by suctioning, turning, comforting, and supporting Brandon, but it is ability to remove some things from his lungs by his coughing that really assists us with the removal of some secretions he has. Also, the BiPAP is a great machine, if it is on Brandon correctly and is working optimally. The BiPAP helps Brandon at night when he sleeps. But, the cool thing is, is that when we first place it on Brandon, and the delay has gradually brought him up to the full IPAP and EPAP, Brandon's lungs sound as though they are having an asthma or wheezing sound. However, when you listen closely and for a long period of time, you can actually hear the alveoli that gradually collapsed through the day because of Brandon's inability to take a deep breath and open them up, are now being opened up by the BiPAP machine. The machine is allowing Brandon to actually take in deep breaths that allow his lungs to open, vent, and clear out and buildup in the alveoli sacks. It is an awesome and beautiful sound. However, with Brandon's old BiPAP setting of 10 over 5, we never heard this happening in Brandon. But for the last month, and after reading Dr. Bach's book and learning how and what the BiPAP is supposed to be doing, we have changed his BiPAP setting, after speaking with our lung doctor Â– Dr. Shreve, to 16 over 3, which is what Dr. Bach recommends his in book. So far so good, and we continue to pray for BrandonÂ’s ongoing quality of life.

Sue, Brandon's favorite nurse, brought him a heart shaped cake and small cupcakes to match for his 7-month birthday. Also, Grandma and Grandpa (Barbara & Dan O'Reilly) gave Brandon an angel bear that prays, "Â…As I lay down to sleep, I pray the Lord to watch over me. If I die before I wake, I pray the Lord my soul to take. Amen" It is so nice, and Brandon loves it. It makes my eyes watery every time I hear it. Brandon's Aunt, JoAnn, came to visit from Michigan, and she brought Filipino breads, treats, and delicacies from a Filipino bakery in Michigan. It was so awesome. We pray that one day Brandon may be strong enough to see his huge family in the Philippines.

Mike W. Lowden has established "The Brandon Rolen Foundation" in which IÂ’m a consultant to the board members: Paul Ward, Scott Anderson, Pat McCann, and Chair Mile Lowden. The dream is to be able to help out other families who have a child born with the #1 killer of children under the age of 2 years old Â– SMA Type I. Thank You everyone for this opportunity in allowing Brandon to help others through the foundation.

Thank you everyone for your prayers, kind words, and support. We could not make it without you! God Bless.

Thanks to the Pag-asa group (Filipino Association) headed by Mr. & Mrs. Charles Monson for the opportunity to speak during the Filipino convention and allowing everyone to learn about BrandonÂ’s disease. Thank you Deb Lewis (MonsonÂ’s daughter, and our friend) for your help, support, and commitment in making this happen for us.

Marti & Lani Schlundt for visiting and bringing cake and gifts for Brandon on his 7-month birthday (September 8, 2003).

Martha Schermer - social worker from Children's Hospital. Thank you for all your support, kindness, and guidance. You are important to us and to Brandon.

Mark J. Clem - Chaplain at Children Hospital. Thank you for your visits, prayers, and support.

Chaplain Dee Â– ChildrenÂ’s Hospital. Thank you for your never-ending love, support, and prayers!

Friday, August 22, 2003

What to say, and then how to say it is becoming more and more difficult for me when talking about my son, Brandon.

On August 20, 2003 at 8:30 AM, we brought Brandon to Gillette Children’s Hospital located inside of the Region’s Hospital downtown St. Paul, MN. We made this very special trip to see Dr. Steve Smith, who only visits Minnesota 1 week out of each month, because Dr. Smith is renowned as the expert in infant and children neurological disorders and he is working to find a cure.

Brandon really enjoyed the trip in the van. He has his car-bed for the traveling and we have his ATW (All Terrain Wagon) for everywhere else. Brandon’s eyes were just so full of joy, curiosity, and amazement as he was being wheeled around. We didn’t have to wait long. We got Brandon’s weight and height, which he showed increases in both, and then we where swiftly brought into a treatment room to await Dr. Smith.

Malune had all of Brandon’s treatment records, provider visits, surgery procedures, and hospitalizations all placed into a binder to make things really easy for the nurse and doctor, which it did.

Dr. Smith came in once the nurse completed the usual forms and stuff. Dr. Smith talked to us and examined Brandon. This only took about 5 minutes, then Dr. Smith, sitting on his stool, rolled back and rested his back to the wall and asked, “What are your expectations of Brandon, and what do you think Brandon will be able to do and not be able to do?” Wow, a big one. We told the doctor that we thought Brandon would one of the few and lucky children that would make it passed 2 years old, because we take such great care of him and that he even just got over a cold without the cold causing pneumonia like all colds are to do in Brandon’s condition. We went on about his lungs being clear and that Brandon is giving great effort to talk and to move his hands. We have also seen Brandon move his shoulders a bit, which is a big deal we thought. We also talked about how good Brandon is at taking his food, medicine, and treatments extremely well, including the BiPAP, nebs, and BD’s.

Dr. Smith was obviously listening very closely and he acknowledged our statements with his jesters and with vocal “yep” and “umm.” However, once we were done with our dialogue and it was now Dr. Smith turn to let us what we didn’t know or to confirm what we thought we knew. Dr. Smith says, “I agree with everything you are telling me, except I must tell you this. Brandon has a very severe case of this disease. His condition can be thought of something like this. If you had a whole pie and sectioned it up into four pieces, one piece or 25-percent of Brandon’s nerves remain and 75-percent are gone. The 75-percent such like a TV cable line that only has the insulating sheath and no conductive cable within it. And Brandon’s remaining 25-percent that could be seen if we were to go in a look would show 50-percent of them already diseased and disintegrating. Brandon only has about 2 months to live.”

We were both following the doctor with “yep” and “umm” until his last sentence. Malune and me just looked at each other and then to Brandon and back to each other. We couldn’t hold in our pain. We were asking him is he was sure, are your sure, only two months, but he is doing so good we thought. On and on we went for a few minutes. The doctor never left us. He acknowledged that Brandon is in the best condition he has ever seen with a child who has the disease so severely and that he is surprised that Brandon’s lungs are clear and that Brandon can talk. But, he continued on about that no matter how good we care for him, Brandon’s disease would take our baby’s life. He also stated that Brandon is obviously getting a great quality of life and that most children with this disease would of died months ago, and is usually from pneumonia, which is rather a painful way to go. But, Brandon, will hopefully pass in his sleep, peacefully and without any pain, because we are doing so good and keeping him healthy; however, some children, even this well taken care of, die with a bit of suffering the last few seconds.

This has to be the hardest things to write about. I do not even know what to do or say. All I know is that I love my son so very much and what to do everything for him.

These last few days are extremely painful and we find ourselves just crying at sporadic moments. We are doing our best for Brandon and try to give him as much fun and happiness we can. Last night we helped Brandon with some finger painting and hand moldings.

There is one other thing. While seeing Dr. Smith, I asked him about drug “Valproic Acid” that was showing some promising results in Germany. Dr. Smith said that he just completed his clinical trail on that drug just 3 months ago, but found nothing. However, Dr. Smith stated that if we wanted to, then he would calculate a safe dose for Brandon and would write the prescription. But, he gave no promises. After about 10 minutes of being alone together (Mommy, Daddy, and Brandon), we decided to try this for Brandon. We want to fight for Brandon. And this appears to be the only things, latest and greatest, on the market being experimented with.

Brandon is currently taking 1 ml of Valproic Acid 2 times a day. So far, we have no effect or any changes in Brandon’s condition that would show improvement or digression of his condition. We are praying that Brandon will be the first to be cured with this drug.

God Bless Brandon, our baby Angel.

Sunday July 13, 2003

Brandon’s Baptism Ceremony and party

It was a day of pictures and celebration for Brandon. Brandon was baptized in the Pediatric Intensive Care Unit (PICU) at Children’s Hospital of St. Paul by Father Tim from St. Joseph’s Church in Lino Lakes and June 3, 2003 at 11:50 PM. But, today was the ceremony and party. Brandon did well at the ceremony and only de-saturated (low oxygen level) 2 times. We only needed to reposition Brandon to help him breath and his sats (oxygen levels) would come back us to a good level.

Godfathers: Matthew Rolen (my brother), and Paul Ward (friend)
Godmother: Marisa Madsen (Mommy’s cousin)

The party started immediately following the ceremony. Brandon had some great times and loved seeing all the people. However, at about 5 PM, Mommy called me into the bedroom to suction out Brandon’s airway because it was not sounding clear at all. I ran into the room and noticed Brandon had begun to go into respirator distress. I immediately began suctioning to clear his airway. I was shocked by the amount of fluid I was getting and had Mommy call 911. I continued to suction and then give Brandon some breaths with the Ambu-bag with oxygen. I was able to keep Brandon from going unconscious and was able to keep is sats above 80, but it was a fight to do so. After about 4 minutes of suctioning and breathing for Brandon. He appears to become more stable, but I still needed to suction him about every 10 minutes to keep his airway clear.

Soon we are in the ambulance and on our way to the hospital. In the ambulance I was the one suctioning Brandon. I had to suction him about 6 times on the way to the hospital and while at that hospital the respiratory tech suctioned Brandon about 15 more times. We came to an estimate of 50cc of fluid was extracted from Brandon’s lungs. All of which appeared to be clear in color.

We were warned about the danger of going home and one day not being able to remove the fluids fast enough to put air into his lungs. However, we decided that we wanted to go home, because if he was to pass, we want him home with us so we can be a family as long as possible. We didn’t want Brandon passing in a hospital bed, but want it to happen in our arms where he is so happy and loved.

Mommy and me decided to pull overnight duties and it would start with me. So, for the next 48 hours, I didn’t sleep a wink. However, something awesome happened during this time I spent with Brandon. That very night when we came home form the ER, and after everyone was sleeping, including Brandon, I decided to ponder and analyze everything. It was simple really. After thinking about ever instant where Brandon had his toughest fights for life. I found they all had a common denominator. Saliva was the one thing that every episode had in common. So, I just simply rolled Brandon to his side and allowed all the saliva to exit is mouth and not to have it go back to his throat where it can and would be aspirated (inhaled into his lungs). I took his BiPAP off and suctioned him while he slept. I got about 5 cc of fluid. I then wrote down the time and placed the BiPAP back on him. Since that very moment, Brandon’s lungs have been crystal clear. Not only did I keep him on his sides, changing his positions every two hours from side to side, but I also took out the humidifier for his BiPAP, which just added moisture to an area that has too much moisture already. Simple things I thought; even though, it was never done in the hospital. The only time we have to suction him is after we do his therapies, but not even on every therapy. We are praying these simple things we do for him will give a longer, happier, loving, and joyful life with dignity, but most of all without suffering.

******
Special Thanks To:

The Lowden Law Firm: For creating the "Brandon Rolen Foundation" in my son's honor, to help Brandon and other children with SMA type I. - We passionately thank you.

Oberg's - for visiting and helping us keep in touch with our family in the Philippines. You guys are always kind to us, thank you very much for your thoughtfulness

Wussler's - for visiting and giving Brandon a suffed toy while Brandon was in the hospital. Jean, thank you very much for your concern and friendship.

Mike & Esmee, Mark & Din-din, Cecilia, Gigi for your prayers and support.

All our friends and family who visited us and brought us food while we were in the hospital at Brandon's bedside.

Luke Talbot, Matthew Rolen, Dan O'Reilly for helping us be able to bring Malune's mom here from the Philippines. - THANK YOU SO MUCH!!

Paul, Jolly & Sarah Ward for your friendship, sincerity and your support day after day and for even helping us create a special room for Brandon. You are like a family to us . THANK YOU SO MUCH!

Marisa Madsen, for spending time with us and helping us Brandon's Baptism party possible and for helping us create Brandon's room. Thank you very much my dear cousin. - Malune Rolen

JoAnn & Scott Anderson for your love, support and help for Brandon. Thank you very much and we all love you!

Mom Barb thank you very much for your never ending love to us and for Brandon.

Mama, thank you very much for coming back from the Philippines to be with us and help us with everything. Your presence really helps me to be strong and face this agony in my life. I love you mother! - Malune Rolen

Saturday July 5, 2003 Brandon left us for 10 seconds

Brandon left us for 10 seconds today.

We were all getting ready to pick up Grandma from the airport. Baby Sam was all buckled in the back seat of the van, and Brandon was just put into the van too with all his equipment (oxygen, suction machine, BiPAP, Ambu-Bag, etc.). As I was strapping in Brandon’s suctioning machine, Brandon’s Pulse-ox alarmed. Brandon’s oxygen saturation rate (Oxygen in his blood) was 91 and dropping fast. I just over to Brandon and placed my ear in front of his nose and mouth to see if he was moving air. HE WAS NOT BREATHING. Brandon just looked at me and tried to give a smile as he quickly became unconscious. I attempted to give a breath to him with the Ambu-bag, but no air would go in. I ripped open the car seat and got Brandon out and placed him flat onto the van’s bench seat. I attempted to mouth-to-mouth, but no air would go in. I then placed Brandon’s head over the seat’s end – hyper extending Brandon neck. I did mouth-to-mouth again and finally got air into Brandon’s lungs. I began CPR and watched the pulse-ox to verify my CPR attempt. Brandon responded beautifully and after about 2 minutes, Brandon was doing well on his own; even though, he was still unconscious. A firefighter and police officer arrived. I had the police office open up Brandon’s G-Tube to vent any air that was in his stomach and I had the firefighter assist me with bagging Brandon – I held the seal to Brandon and I just told the firefighter when to squeeze the bag. Mommy was there and was speaking with the 911 operators the entire time. Mommy’s speaking became screaming when she saw me taking Brandon out of the car seat, because Brandon had no color, not moving, and his eyes had the thousand-mile stare.

Before the Ambulance arrived (5 minutes after this all began), Brandon was already consciously breathing and looking around until he made eye contact with me and gave me a huge smile. Baby Sam was watching everything from the back seat as he was holding onto his pillow. When Sam seen Brandon smiles, Sam said, “Good job Daddy. Wow! Good job. Brandon is okay now.” Mom and I swelled up with sadness knowing that Baby Sam, being only 2 years old, appears to understand everything.

A few days at the hospital and we were allowed to go home with Brandon. However, there was just one major concern we had and that was with Brandon’s BiPAP machine. The one we had was not working nearly as well as the hospital one. So after 2 days of trying different brands and models, we finally found one that could deliver what is was supposed to.

Tuesday, July 1, 2003 3:01 AM CDT

Another chapter in Brandon’s life; even though, it is one I do not enjoy writing about.

On June 26, 2003, Thursday, Malune (“Mommy”) was just finishing up Brandon’s feeding when shortly after he began to show some distress. Mommy yelled for me. It was a yell that put me into a reaction mode and before I knew what was going on, I was already at her side and observing Brandon. I started an Albuterol nebulizer immediately, but it was obvious that Brandon was going into respiratory distress. Brandon’s face was just slowly showing signs of digression into a pale and slight blue-ish color around his lips, eyes, and nose. I told Mommy to call 911. I grabbed the Ambo-bag and assisted Brandon with his breathing. Mommy handed me the phone and took over the administration of the Albuterol neb while I talked on the phone and continued to help Brandon breathe. Brandon was trying his best to breathe on his own, but was quickly becoming exhausted. We could see Brandon digressing slowly, breathing less and less on his own. So my assisted breathing for Brandon became to a point when I was doing all the breaths for Brandon. After about 2 minutes of this, Brandon ever so slightly, teeter-tottering on the edge of losing consciousness, he began to regain his color back. Brandon was taking a few breaths on his own too. Brandon soon became fully alter and was breathing on his own and he looked up at me and gave me a huge smile. His smile light up my heart and also broke through the worried and tormented look on Mommy’s face. Mommy even showed a smile through her tears of worry.

A Lino Lakes Police Officer was the first to arrive, and I was happy to see he at a medical bag with oxygen. I connected the oxygen to the ambo-bag and gave Brandon a few full breaths with the ambo-bag. I’m sure it felt like a cool, crisp, and refreshing moment for Brandon. I was happy to see Brandon’s color and strength quickly return. Before long, there were 10 strangers standing around us shooting out questions. It was immediately obvious that when I stated Brandon has SMA, and everyone gave me the look of “huh” that not a single person had a clue what SMA was. So, after a quick SMA-101 to them, we all seemed to be on the same page. Brandon was now stable, so I placed him into his car seat and carried him to the ambulance. Mommy and Brandon rode the ambulance together and Sampson and I took our van. We made sure it was clear to the ambulance paramedic and driver that Brandon was to go to the Children’s Hospital of St. Paul.

In the ER, x-rays were taken. The x-rays showed only a slight pneumonia in his right middle lobe. However, a blood culture was drawn, but later revealed nothing, indicating that the pneumonia may not be bacterial, but perhaps viral. It was not a good thing to hear, but I’m sure it was just that we caught it this so early that the bacteria just wouldn’t be found in his blood yet. It is so sad to see that no matter how careful we are, Brandon is going to have respirator problems because of his inability to cough strong enough to remove mucus or anything from his trachea. We can only help Brandon the best we can symptomatically. Also, because of this, I spoke with Dr. Ilko and asked if we could be prescribed a suction machine to help Brandon remove these secretions for him, hoping to prolong his life and his time between hospital stays. Dr. Ilko agreed and prescribed it. Thanks Doc!

The following two days at the hospital Brandon had a few episode of respirator distress that lead to apnea (stopped breathing); however, I was there for him on each and every episode. I was fortunately enough to identify and treat Brandon immediately when each of these episodes began. On all the occasions I just provide Brandon some breaths with the ambo-bag with and oxygen to it and at the same time giving an Albuterol neb going too. I just simply asked the nurse to go get the doctor. Unfortunately Brandon had 2 of these episodes in one day, so the doctor moved Brandon into the ICU for continuous monitoring. The doctor told me that she wanted me to be able to be a father for Brandon and not have to be his doctor here at the hospital and then commented on my work and said that I’m not a common father. It seem that the doctors and Mommy believe that I have saved Brandon’s a few times, but I do not think so because it is just simply all God’s will.

After Brandon’s two days in the hospital with antibiotics, nebulizers, and under close watch in the ICU, Brandon’s pneumonia spread to every lobe on both sides in his lungs. The BiPAP machine was a vital part of keeping Brandon from being intubated. Brandon walked on a fine line from having to be put on a respirator (a device for administering long-term artificial respiration) and keeping only the BiPAP (non-intubations, mask like respirator that only assists respirations). He walked this line for two and half days.

All in all, Brandon is doing very well now. This is due to Mommy’s support and love to Brandon. Even with all the tubing and monitoring devises, Mommy holds Brandon in her arms and rocks him with her in the rocking chair. The monitors illustrate Mommy’s great gift of healing. Once Brandon is in Mommy’s arms, he immediately responds taking deeper and more relaxing breaths, reducing his heart rate from being 200 to a normal 140, and Brandon’s complexion and smiles come to full life. Because of all this, the resent x-rays taken today show that Brandon’s pneumonia almost completely gone. And that Brandon’s partial collapse of his lower lobe on the left has re-inflated. Brandon is getting better so quickly, we are hoping to be home this weekend, or even sooner.

Thank you everyone for your support and prayers.

Thank you Matthew (my brother), Grandma, and Grandpa for visiting so often and giving us your support in so many ways. It means everything to us!

June 16 – 22, 2003 2:46 AM CDT

Monday started off by a Social Worker coming to our home first thing in the morning and spending a few hours with us on programs and services that can be delivered to us in our home for Brandon. We learned about nurse visits and volunteers to programs to help us if we want Brandon to pass away in our home instead of at a hospital. They are even going to have the doctors write letter to aid Mom (Malune) in getting her sister to come and visit from the Philippine for support. I know it may seem hard for Mom to be going through all of this, but I just can’t imagine what it is like without any family. My family has given us awesome support and even our family at Progressive Insurance, but we all know, nothing is more therapeutic that a hug from family.

PROGRESSIVE! There is just no way any combination of words could show you how thankful we are and how proud we are to in your family. Ever single prayer, through, and ever ETB minute donated to us has lifted so many burdens and has given us time to spend with Brandon when he needs us most. We thank you, thank you, and thank you so very much! We truly love this company - our Progressive family.

Paul and Jolly Ward brought over their X-Box gaming console for Dad and Sam to play. It really helps me during my sleepless nights like this one. I know I should be updating this page on a daily bases, but I just found playing the game sometimes give me a small break from reality. And, Baby Sam loves to just see that he is in control of what is happening on the TV. Sam doesn’t care at all about any outcome, he just thinks it is so cool to move something on the controller and see the TV illustrate his command. Mom, well, she just doesn’t want me to play the game to late.

This week went fairly well; even though, Brandon did have a rough and tough day on Tuesday. Brandon actually stopped breathing for about 15 seconds during bad and painful flatulence episode. These episodes just appear out of thin air and last unknown amounts of time. Our best method to help is to give meds in the G-tube as quickly as possible and do any and everything to comfort him, such as bicycle exercises, rubbing the belly (not over the suture of course), and holding him. Unfortunately, Tuesday was just a day that nothing seemed to work.

Al Filipiak gave us a visit at our home on Friday. He came with Krispy Crème donuts and our personal stuff we had at our desk at work since Progressive is moving to a new location, he didn’t want anything getting misplaced or lost. – Thank you Al.

Saturday we went to St. Joseph’s church to get our family photo taken for the church’s directory. We only had to juggle Brandon’s feeding time so we could accommodate the 3:00 PM photo session. All in all it went well. We got our family picture for the church directory and we went ahead and got a few more photos taken for our home. However, due to the bright lights and the heat, we noticed Brandon fatigued rather quickly so we worked quickly. So, because of this, we asked Brandon’s Grandpa (Dan O’Reilly) to come and take some pictures at our home on Sunday.

Our Sunday photo session at the house went great. Brandon enjoyed seeing Grandpa and Grandma. Grandma has this special connection with Brandon and can get him to talk and talk until he slowly fades his talks into smiles and then gently drifts off into a deep and pleasant nap in Grandma’s arms.

The front-page photo and our family photos on this webpage are from Grandpa on Sunday. Thank you Grandpa and Grandma for visiting us!

Sunday, June 15, 2003 11:42 PM CDT

WHAT A GREAT FATHER'S DAY!!!

No gift is better that having one's family! I’m so happy to have such a wonderful family! I was taken out to eat today. Brandon loved getting out; even though, it was not for a long time. We spent about an hour at Joey’s Seafood. Brandon got to do some sight seeing too. He enjoyed the view, but most of all he loved being held by mommy in the restaurant. Also, Brandon loves to ride in the van. He just falls right asleep in the van so easily.

Brandon loves to listen to music. So, while he is with us in the living room we always have the satellite TV radio station on “easy listening.” Brandon just smiles and likes to watch the TV too from time to time, but he really likes to receive smiles and to hear his brother talking. It seems that every time Baby Sam in around, Brandon is just fixated on him and welcomes Sam to play with him. Baby Sam likes to touch Brandon’s hair and also likes to show and tell Brandon where Brandon's nose, eyes, ears, mouth, hair, and chin are. We can see Brandon doing his best to move and to play with Baby Sam too. Brandon appears to be left handed as his brother.

It is just a wonderful day. We took some video and pictures of Brandon today while he was playing and while he was sleeping. We are going to take pictures and video a little bit everyday. We are also looking at getting some family pictures taken at a studio.

Saturday, June 14, 2003 11:18 PM CDT

It is Brandon's first full day home. Brandon received a surprise visit from Aunt JoAnn and Grandma. Aunt JoAnn and Grandma both took turns holding Brandon. And Brandon showed everyone how much he loved the visit by giving out smiles all day long.

We also received a visit from a nurse to follow up on Brandon’s status and to answer any questions we may have developed. Well, we did have a question. We found it hard to find any formula that the nutritionist prescribed for Brandon. The issue is that we can only get the Enfamil Lipil 20 cal and can’t seem to find any Enfamil Lipil 24 cal as prescribed. We asked if it was okay to by the 20 can and some concentrate and to just add a bit of the concentrate to the formula to boost the calorie content. We didn’t get an answer, but she says she we need to speak with the nutritionist on Monday. We will. However, we place a call into one of the doctor’s on the discharge papers and they said it was a good idea and it was okay to raise the input just a bit if Brandon was still hungry. – Awesome! We also noted a calculations error when adding Brandon’s total volume input. The numbers were run on two 12hour runs. Meaning, bolus feeding every 3 hours for 12 hours and then drip feedings for 12 hours. However, one can see that 4 feedings in the 12-hour bolus feeding is not possible if we are turning around and giving drip-feeding in the beginning and end of the bolus feeding. So, only 3 feedings can be given out of the 12-hour bolus. This is a large issue too. Brandon needs his calories to stay strong. We are doing our best by just slightly increasing his feeding volumes around the clock, so not to put any stress on him with large bolus meals or feeding to much at night were he can’t sleep well.

Baby Sam just loves to play with Brandon. We are just so impressed and happy that Baby Sam is not jealous. Baby Sam even tries to help with Brandon’s nebulizer treatment and feedings. Sam even wants to turn the BiPAP machine on for Brandon. Oh, and Brandon is never without a toy with Baby Sam around. It is so wonderful to see them playing. We can’t wait for Baby Sam and Daddy to get rid of their colds so they can play even more.

Paul and Jolly Ward came over and visited with us. Paul mowed our lawn and Jolly made Mom some Philippine style soup. Brandon gives them both big smiles. – Thanks Paul and Jolly!

Brandon is sleeping well now.

Friday, June 13, 2003 10:52 PM CDT

6:00 PM Brandon made it home!!!

The day started out on a fast and furious pace. Doctor after doctor and specialist after specialist came in to examine Brandon. We know this is a good sign because it usually means each doctor is signing off on their approval for discharge and to right up their portion of the discharge order (such as, medications, treatments, follow ups, etc.). Everyone who examined Brandon provided us with a “doing good” feedback. This feedback just got our expectations even higher. Then this was confirmed when the charge doctor (in charge of that hospital wing/ward) advised us that Brandon will be able to go home today; However, we are going to have to learn how to use the equipment and learn how to administer the medications Brandon will be needing. “Not an issue!” We answered immediately.

It is about midday now and the training has started. It was a variety of classes; feeding pump for night time use and bolus feeding for days, BiPAP (respirator type thing-a-gig) for breathing, nebulizer and inhaled medication, and even G-tube maintenances and medications. It is really easy to learn, especially when you have such a deep desire to learn it. The only surprises to us were the number of equipment needed. We barely got it all to fit into the minivan.

The ride home started at 5:05 PM on Friday. So, I’m sure everyone knows from this leaving time, we didn’t get home for over an hour. But, we already had the van full of gas and the AC kicking to accommodate Brandon and our needs. We must have done it right, because Brandon and Baby Sampson were sleeping at about the 4-mile mark from the hospital.

At 6:00 PM WE MADE IT HOME!! It was a great feeling to have our family together again and being home altogether. We are treasuring even minute we have together as a family, something we usually take for granted.

Daddy and Baby Sam have to sleep in a different room since we are sick, but are both on antibiotics. It seems that cold that brought Brandon into the hospital in the first place was no simply cold. Mom is doing great and it not sick. We are all doing our best to keep our hands washed.

Brandon’s crib is now a mini hospital bed with an IV pole and everything. But, we know it is best for Brandon. It is really hard knowing that we do not know how much time we have, but we are willing to do what we can for him.

Friday, June 12, 2003 11:57 PM CDT

Thank you:

Barb & Cassandra Witzke (my sister and niece) for coming to spend time with Brandon and for brining Sampson a toy puppy at the hospital today. Thank you for lunch, your prayers, your hugs, and you loving support.

Grandma thank you for the morning baked sugar cookies Sampson loves so much. Thank you for visiting everyday and for your boundless support.

Pat McCann thanks for your endless support, offers, prayers, and guidance.

Progressive Insurance Company, thank you so very much for your friendship, prayers, support, gifts, and for donating your own vacation time to us. You are single handily allowing us to spend more time with Brandon. You know, it is true what they say, "It's not what you'd expect from an insurance company." I just didn't expect so much on so many levels. Thank you so very much. You're priceless!!
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Brandon is doing well enough to come home!!

The doctors know how much we want to spend as much time with Brandon as possible. So, we will more than likely be going home tomorrow; however, there are some issues. We are going to have training on how to use the BiPAP machine, assisting Brandon with breathing at night, how maintain the G-tube, and the best methods, food, etc. for Brandon's nutritional needs.

The hardest thing is when we are often reminded that no matter how good we are and how clean we are, we are not going to be able to prevent Brandon from getting sick again. It is just one of those things that just doesn't settle well inside our stomachs. We know he has SMA Type I, but we only want to love, care, and support Brandon. We are not looking at Brandon as a person with SMA, but simply as our son. We know what the outcome is going to be one day, but we only want to live in the now with Brandon and enjoy every minute. We know this is what they are trying to tell us, but just do not have any better words for it.

Brandon's feedings are up and sure enough Brandon's sleeping is getting better. They are feeding him pure formula now by bolus (large quantities like regular feedings). Brandon is now playing more with his hands and is sleeping in much longer spurts. Both are a miracle in our eyes. And another good thing is that Brandon is really filling is diapers, both by defecation and by weight. These are both huge leaps for Brandon. With all this good news the doctors are moving forward on getting us the education, equipment (rentals), and supplies for caring for Brandon.

Family services brought Sampson a baby doll with a g-tube. They also brought Sampson a doctor's lab coat. The idea is to help Sampson understand Brandon's special needs and not to fear Brandon. We think this is a great idea and are excited to see if it helps.

Brandon is sleeping well tonight. He is only slightly awakened when the nurses come in for the check-ups and vital signs.

Thank you everyone for all your prayers. We know that the time we are being giving is nothing short of a miracle. Only a few days prior we had to have Brandon baptized in an emergency. Miraculously, after baptism that night, everything has been getting better. It reminds me of the moment the geneticist stated there are auto-deletions of the gene on the chromosome, and I asked her if she know of any auto-completion of any gene restoring itself. She didn't know of any, but she says she hopes for it. I said, "I pray for it."

Wednesday, June 11, 2003 10:41 PM CDT

Thank you:

Father Tim of St. Joseph Church in Lino Lakes, MN for the emergency baptism of Brandon. And thank you father for your continuing visits!

Scott, JoAnn, Gary, Cody, Brady, and Pepsi Anderson for the balloons and bear for Brandon!

Richard Stempel & Stempel & Assoc. for the flowers and visit!

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Some great things happened today.

Learning about our genes:

It was interesting to meet the geneticist this morning; even though, there were no clear answers for anything. The discussion started out by explaining what a gene is and chromosomes and so on. Cool looking drawings and all, and it did help visualize it all, but we want to know what is going on with our family.

They (a geneticist and the genetic counselor) delicately answered our first question; however, with an obvious lack of any absolute assurance. We just wanted to know if Sampson (2 years old) could have this S.M.A. in a different form, meaning it would develop at a different time. I have ready a lot about SMA recently, and have not found any answers. They answered this questions something like this, "The onset of this disease is the identifier of the type of SMA it is. And, that type is then to be expected as the type carried and or passed on." So, it may appear as the question was answered, but not to us. We asked, "Is there any test to identify what type or types we carry and what Brandon has without knowing the onset time. So, to be certain we only have type I we are dealing with." We were both hoping for an awesome answer, but we got nothing like awesome. It was explained that sometimes there are auto-mutations or auto-deletions of these chromosomes and thus only a pattern of onsets is the defining type. No test is known to differentiate the severity of the deleted information from the chromosomes. Only a type of titration can be clinically examined for quantities. The meeting went on for over 1 1/2 hours with us asking everything from gene therapy (only ones known ended in fatalities) to genetic screening (can be done). All in all, we need to have our blood examined because even the geneticist mentioned during our meeting that it has also been found, even though it is extremely rare, for a parent to have multiple version of the same chromosome. The most ever seen were 3 completely different pairs (found in only one person to date).

We had our blood drawn at 1:00 PM today. Dad got 10 tubes and Mom got 5 tubes drawn. They say the testing with be done in Chicago, the only advanced lab capable to handle this and this is also the place where genetic screening has been successful. We are told the tests will take about a month. And only until the results are in, will it give then any real idea of what we are dealing with.

We only wished that there were a system in place where couples could send their blood for testing and to provide screenings (or give on the top 50 fatal genetic diseases. We are sure that if there were such a system, one day, everyone would have this done as part of the marriage package.

Brandon was transferred from the PICU to the 4th floor (getting better ward). He came up around noon. He is looking so good. The g-tube feedings have started today too. They are starting him off on pedialyte at 30 cc's/hr (about an ounce and hour) and ever so slightly changing to percentage to pure formula. The rate of change over ever 3 hours calculates out of being at full formula tomorrow at about dinnertime.

Grandma (Barbara O'Reilly), has given Brandon a nickname of Rocky (Brandon Rocky-Rolen) for being so strong and going through so much, but yet Rocky still gives out tons of smiles and tries so hard to talk to you.

Brandon's sleeping has not been extraordinary, but we think it is because he is just so hungry. Even though they are feeding constantly 1 oz an hour by drip (machine slowing administers the food/drug evenly over the hour), we think that he will sleep and feel better once he gets a chance to have a full belly. We will see tomorrow.

Tuesday, June 10, 2003 11:00 PM CDT

Brandon's day started pretty early. 7:30 AM the surgeon came by and gave a look-see. His report was that Brandon was doing excellent and we should be able to try his new feeding tube (g-tube) tomorrow. 9:00 AM Brandon was taken off the respirator and has been off ever since. Brandon was taken off oxygen supplementation at 9:30 AM and he has been holding his own ever since!

Brandon was scheduled to be moving up to the 4th floor, the normal wards, today at 7:00 PM. However, there was a bit of a staffing problem for nurses on the 4th floor. So, Brandon will remain in the PICU until the morning shift (7:00 AM).

After fighting off the pneumonia, and now 2 surgeries, it is just simply amazing to see Brandon with such strength and joy. Every time he’s awake, he just gives us a huge, glowing, warm smile and his eyes open so wide as he looks into your eyes. We just melt on the spot. Brandon even is trying to talk to us by showing us his tongue during his noises he vocalizes. It is just so darn cute. We owe everything to GOD for allowing us time to spend with Brandon. Our family, friends, and co-workers are just so supportive, we feel as though GOD is helping us on all levels of our life. We continue to pray for a miracle and give thanks everyday for the time we are given and the family, friends, and co-workers we are so blessed with.

We are going to meet with the Geneticist, Dr. Pierpont and Genetics counselor Mary Ann Fox, tomorrow at 9:00 in the morning. We are anxious to discuss everything about SMA. Boy-oh-boy do we have a lot of questions for them. We only hope they have answers.

On a side note, our new, 2003 Dodge Caravan – just weeks old, was struck was parked in the red parking ramp on the second floor. It isn’t a huge hit, but it sure is one with bad timing. At least the “Hospital Security” placed a note on our window to contact them. We just hope they have the other car’s information.

Thanks Mom for visiting today.
Thank you Christy & James Raley for visiting us on Saturday.

Monday, June 9, 2003 10:04 PM CDT

Brandon’s morning chest x-ray showed a cleared chest – no more pneumonia. This was great news for us; however, it also meant deciding on what surgical procedure, if any, is best for Brandon. After thinking about this and discussing our thoughts with our family physician, surgeons, and ICU docs, we came to the decision to give Brandon a reflux and G-tube operations to help him be at his best.

This decision appears simple, being correct what is wrong, but it wasn’t easy at all. This is because during surgery Brandon will be placed back on the respirator and will be drugged up for a good day after the operation. And in Brandon’s weak condition, SMA, it will just be another large obstacle he has to jump through before he can come home. But, our thoughts are that if we do not help him with this reflux and just keep with the NJ tube (bypasses the stomach), what pleasures will Brandon get. He will not ever get the “full” feeling of having food. He will not be able to taste any small amounts of flavors (after surgery Brandon could consume about 1 oz during his feeding and the rest would be put into his stomach by us via the g-tube), giving him some satisfaction and joy because we all know that at his age, nothing is fun unless he can taste it.

Well, Brandon got these two surgery procedures done today. My Brother Matthew was with us at the hospital before, during, and after surgery giving us his support. Thank you Matt! After the surgery Brandon was immediately brought to the PICU, which startled us a bit, but the surgeon reassured us this is the protocol. Brandon has a 6-inch incision down the center of this abdomen – from above his naval to the beginning of his sternum. Brandon also has a button like object extruding out of this left upper region on his abdomen where the feeding tube is attached. We were told that Brandon did great during surgery.

Now, Brandon is back in the PICU and is at Bed 4. What hurts us most about this surgery is that Brandon has to suffer again. He awakens from time to time and cries, but you can’t hear them because the Endo-Tracheal Tube is in (ETT) and doesn’t allow any vibrations with Brandon’s vocal cords. All we see are the tears, the mouth moving, and his eyes reaching out to us. Brandon is then given medication to ease his discomfort. The only thing standing in our way to bringing Brandon home is just how fast he can recover from this surgery. We find ourselves dreaming of brining him home, but we also find ourselves looking at the respirator that is indicating Brandon is not breathing much on his own. We only hope this is due to his sedation and that tomorrow, when the respirator is expected to be removed, will show how strong Brandon is.

We are extremely excited to see how tonight goes and how Brandon does off the respirator tomorrow.

Baby Sampson has not beaten his cold yet (the one that brought Brandon to the hospital). He is vomiting is showing signs of weakness and fatigue. The Dr. prescribed antibiotics a few days ago... We pray that Baby Sam will not have a different type of the SMA. We are going to be meeting with the geneticist tomorrow hopefully to see what exactly is going on with our family.

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Later entries:

Thank you Matthew and Terri Rolen for being there with us on Sunday. We had a great time at the MOA. THANK YOU!!

Thank you Pat McCann and Al Filipiak for spending your time with us on Friday and bringing all the great goodies. It was great to talk about work and being able to bounce some thoughts we had about Brandon's possible surgery procedures.

Sunday, June 8, 2003 11:21 PM CDT

Spending the day with Sampson was great, but also very tough. It was like a strange feeling like Brandon has already gone from us, and that it is only going to be us three from now on. Mommy lost control of her emotions a few times today, especially when we made a stop at the house. Nothing has changed in the house. Brandon’s toys, diapers, clothes, and everything are all on emotional display. These feeling are ones I have never felt before and it was tough trying to deal with them. We just brought Brandon into the ER a while ago only for a fever, and now we have all this to deal with. We really didn’t enjoy these soon to be a reality type feeling. We simply acknowledged the feeling and then turned our focus and attention with Sampson.

Grandma (Barbara O'Reilly), my mom, spent the midday with Brandon while we were with Sampson at the MOA. THANKS MOM!

Well, we better get some rest; it may be a long day tomorrow. We are praying for a good x-ray that will show Brandon is winning the battle with the pneumonia.

Thank you everyone who has written us, called us, supported us, and befriended us. There are no words to give to you the feelings you have lifted us up with. Thank you so very much!!!!

Saturday, June 7, 2003 11:07 PM CDT

Well, we lost all control of our emotions when I received a copy of the actual laboratory test in my hands for me to keep. Brandon doesn't just have the deletion of the position 7 on chromosome-5, but also on position 8. And each of these positions is paired (one from dad, and one from mom). So not only is this fatal for Brandon, but we knew instantly that Sampson has a 50% chance of being a carrier and only a 25% chance of not having these gene. We have a lot of questions for the geneticist.

We are now looking at having Brandon undergo surgery to help him live a healthier life. Our thoughts at this time are to have the reflux fixed and a G-tube. Our decision is tentative set pending the outcome of Brandon’s fight with pneumonia. The Monday Morning x-rays will be the deciding factor. Because, we feel there is no need to put unnecessary stress and pain on Brandon if he is not able to defeat the pneumonia, and without defeating the pneumonia, this surgery may just push him over the edge for the worse.

We have decided to spend to the day with Sampson tomorrow. We have been unable to spend a lot of time with Sampson because he is currently on antibiotics in attempt to beat this cold that gave his little brother, Brandon, pneumonia. We are going out to dinner with Sampson tonight and will have Sampson say with us all night tonight, tomorrow, and tomorrow night. We are so excited. It is a battle to no lose two sons; even though, a great pull is to be with Brandon.

Friday, June 6, 2003 10:51 PM CDT

Mostly uneventful for Brandon; however, it was pretty demanding on us parents. Brandon is still slowly-but-surely beating pneumonia. His next set of x-rays will be taken on Monday morning to evaluate his progress.

We spoke with the ethics department head - Donald. What a great guy. He reassured us in our parenting and that nobody is perfect and all the decisions are ours to make and no doctor or nurse has any major control of Brandon's treatment. Such as no surgeries can be done without our consent and so forth. It was good to hear because we were getting to the point were they are so many specialists and what appears as a sold path his is traveling; we just needed to know we control the tempo.

The laboratory result are not in yet, but will be getting faxed in tonight. Dr. Ilko will be meeting with us tomorrow AM to discuss the findings.

Thursday, June 5, 2003 10:31 PM CDT

Only an NJ tube now is assisting Brandon, which is just for feeding (35 cc/hr). His is showing a good defecation process, which makes his daddy proud. Today was the day we are to get the laboratory results to confirm SMA; however, they were delayed.

2 surgeons came to our room and discussed with us surgical options for Brandon that they feel will help him live a longer and healthier life. Our options are as follows:

1. NJ tube as is.
2. NG tube (surgically - from a small incision from his stomach to the outer part of this body just below his left ribs – directly into his stomach)
3. Narrowing of the upper valve/sphincter of the stomach to reduce reflux.
4. NG tube & Narrowing to reduce reflux.

We only listened to the doctors and asked then a lot of questions. We told them we are not making any decisions until we have a copy of the laboratory test confirming the neurologist diagnosis of SMA. Both of the surgeons agreed with our decision and also emphasizes that no decision has to be made immediately. However, it is important to know that if Brandon has SMA, then his condition will only digress and one day if we want to have these surgeries for Brandon, the doctors may refuse do to Brandon being too weak.

Brandon’s biggest pains at this time are the obvious ones of having withdraws from food being in his stomach and the stomach acids having nothing to digest because of Brandon’s NJ tube. So we just make sure that Brandon gets his doses of Prevecid and Tylenol in his NJ tube to ease his acid production and the pains with the tube in place.

Wednesday, June 4, 2003 10:13 PM CDT

We called our church at 11:00 PM on June 3, 2003 and requested Brandon be baptized as soon as possible.

Father appeared at 11:30 PM on June 3rd, and Brandon was baptized. Paul Ward drove to the PICU to witness and be Brandon's Godfather. Thank you Paul. Paul not only watches over our son Sampson for us, but also jumped forward to be Brandon's Godfather. From the bottom of our hearts, THANK YOU PAUL!
.

This day was to become a great turning point for Brandon.

Brandon was given a workout over the night being on the BiPAP all night long. And for the technical ones, Brandon was set with an IPAP of 14 and EPAP of 6, which later evaluated by the pulmonary doctors as too aggressive and they ordered it to be backed off to 10/4. However, during the pulmonary specialists evaluation, they reported that as per the x-rays, ones upon ER entry and the resent on today at 4:00 PM, that Brandon appears to be making progress against the pneumonia. They ordered a change in Brandon's medications. Brandon's nebulae’s treatment with now contains not just Albutral, but now a Pulmacort (a steroid for his lungs).

Brandon responded well to the new treatment today. Brandon has approved so much today that at 6:00 PM he was transferred out of the PICU and up to the 4th floor for routine care. Brandon continues to get his RCP treatment every 4 hours, and is being fed by his NJ tube of 35 ccs every hours (about 7 tablespoons of formula an hour). We are in room 4234; phone 220-7100.

Tuesday, June 3, 2003 9:30 PM CDT

Today has started for Brandon in a not to pleasant manner. At 6:00 AM Brandon was placed on an order of no food until the testing that starts at 1:00 PM in over. This was not an easy thing to go through for Brandon and not good at all for us to witness. Brandon is fighting pneumonia and is now showing pneumonia in the central area of the chest in right lobes of the lung and now even some pneumonia in the bottom lobe of his left lung. Brandon is working so hard to work, especially since Linda – Respirator Care Practitioner “accidentally” pulled Brandon’s Nasal-Trachea tube out. So Brandon was crying all day long and did not get a single nap before for the testing. Brandon appeared to be very fatigued before the test ever started at 1:00 PM.

The test started by having Brandon sit in a car seat like devise, making Brandon sit upright. This seat was in a position where the x-ray machine was to Brandon’s left side, about 1 foot away from him. The technician prepared a batch of a bottle of a white chalky substance (not barium, but another metal material that is absorbed in the body). This chalk-like substance was placed into the baby bottle and the technician fed it to Brandon while the radiologist started and stopped the video fluoroscopy study. Brandon did not aspirate his feeding until the consistency of the chalk was thickened, making Brandon work hard to feed. Brandon then aspirated on his 10th swallow.

The next test was having Brandon lying down and being strapped down this his arms pulled straight up and his legs pulled straight down. It was obvious Brandon did not feel comfortable in this unyielding position. The x-ray unit is now being placed above him. The Nasal Gastric Tube (NG Tube – Nose to stomach) is being used in this study. 5 oz was administered into his stomach, Brandon held his own. Then the Radiologist slowing retracted the NG tube out of Brandon’s stomach and into his esophagus. 2 more oz’s are added and Brandon then has an episode of reflux.

We cried when he failed both studies, even if we feel it was extremely stressful for him, because we know that the epiglottis should protect him. But, it didn’t, which brings us closer to the reality of the Brandon having a weakness in his bulbar nerve – classic in SMA.

Brandon was very stressed out from these testing and this was complicated by not being on any oxygen, suctioning assistance, or given any food since 9 hours prior. The testing lasted over 2 hours and at that end of the testing a NJ tube (nasal duodenum) bypassing Brandon’s stomach.

After all this and once Brandon made it back to the Pediatric ICU, Brandon lost his fight to maintain his oxygen saturation rate (oxygen in the blood). It dropped into the 70’s in a flash and stayed there. Brandon’s lips turned blue and his eyes opened wide and searched frantically for Mom and Dad. We were there for him. The doctors rushed over and so did a few nurses and RCP’s. Suctioning to clear his airway was success the first time, but later, about 3 hours, Brandon had another episode and he had to be placed on a “BiPAP” machine that places positive assistance for his breathing. That too was an obvious battle for Brandon, for it is much like sticking your head out of the window while the car is traveling about 50 mph.

Monday, June 2, 2003 9:41 PM CDT

Today was the day to evaluate Brandon’s strength, but most of all was to see if he has the endurance to be without the respirator. Since last nights unexpected exudation of his airway by the infamous Respiratory Tech, which seems to be a blessing today, Brandon has been holding his own today very well. His heart rate (HR) is in the 140’s, respiration rate (R) is from 20 to 50 ranges, and the oxygen saturation (OS) is running in the high 90’s. Brandon is looking strong; even though, his movements in his arms and legs appear to be less aggressive as days prior to this. However, an interesting thing we learned today from the new resident doctors (a total shift of new doctors reported to the PICU) were that Brandon may have been fussy all day today because he is only on Tylenol and no other pain medication. After speaking with the doctors, we performed a complete medication history of Brandon and the doctors believe that since Brandon has received Adivan and Morphine continuously for the days he as been in the hospital that he may be showing withdrawals symptoms. So the plan that started at about 6:00 PM today has really placed Brandon in the nice and pleasant zone.

Brandon is scheduled to undergo an examination tomorrow by the speech department to see whether or not Brandon can eat from a bottle. They need to make sure that Brandon is not aspirating what he is eating (coming out of the stomach and going down into his trachea –airway). This test will start at about 2:00 PM and will take a few hours. Brandon will have to drink a small amount of fluid that has a florescent dye in it that can be seen on x-ray. If Brandon fails this test (aspirates his food), they will immediately place a NJT (feeding tube running from his nose the his small intestines – bypassing the stomach) allowing Brandon to feed without worries of aspiration and getting pneumonia from it. In Brandon’s condition the swallowing muscle and sucking muscle are one of the first to be effected. So, it is important to see how he is doing in this area. Even though, Brandon will eventually have this N.J.T placed in him, since his condition is only suppose to worsen and be become to a point were Brandon will be too weak to swallow.

Malune got to hold Brandon for about 2 hours today and Brandon responded great to it. It was the best recorded vital signs ever. Brandon’s HR was 117, R 17, OS 99-100Awesome results. It goes to show the medicine of love should never be forgotten or underestimated.

Brandon’s coughing seems to be able to clear some of the mucus from his lungs, which is a great thing from a person with SMA and is normally too weak to even produce a productive cough. However, Brandon’s cry is very faint and weak from being so hungry and from the SMA disease. Brandon is only allowed one tablespoon every 3 hours, but I put an end to that. After a good discussion with the docs (same time when we talked about only have Tylenol after being on sedatives for a week) that Brandon has already proved he can handle food by the NG tube, doing so for a weak now, and thus shouldn’t be restricted now. The greatest thing here is the doctors listen and then provide their judgment. And luckily in this case, Brandon is now getting drip of 5 cc (1 tablespoon) per hour and not every 3 hours. A few wins for Brandon, but a lot more baby steps to go.

Monday, June 2, 2003 0:11 AM CDT

** SPECIAL THANKS **
OUR FAMILY IN THE PHILIPPINES:
Thank you for all the support; even though, we are so far apart. Knowing that you are offering church masses for Brandon is a great honor and we thank you all for every prayer and every kind thought you give up to the Lord for Brandon.

To my sister Gina - Thank you so much for the prayers and encouraging words.

To Mamma (Brandon’s Grandma) – Thank you so much for your prayers, support, and help during our time of great need.

..............
June 1, 2003 (Sunday)

Today is a day that we will remember for the rest of our lives!

The morning started rather slow and the ongoing respirator weaning was underway. The test is up to 30 minutes for Brandon to show off his strength without the assistance of the respirator. The morning test started at 9:00 am and finish at 9:30 am. Brandon's results were bland due to an increase in heart rate (heart is beating fast - 190’s) and his respiratory rate in the 80’s (too fast) and the oxygen saturation rate was slowly dropping (98 then 97...92) below the happy 95 (not a good exchange of oxygen and carbon dioxide).

The rest of this midday was without much change, but we did manage to 3 SMILES from Brandon today. Perhaps he was laughing at my singing, or he just thinks I'm funny looking. Either way, we are ecstatic to have seen and received them.

THE BIG EVENT!

10:00 PM is coming about and the nurse asked if Malune (Mommy) wants to hold Brandon. Silly question to hear, but I guess they ask because they must have heard some no’s before. Anyway, Malune of course jumped at the opportunity to hold her son.

The transition is underway and the Respiratory Practitioner (Tech.) was getting all of the breathing tube, feeding tube, and suctioning adaptor gathered while the nurse was working with all the IV lines (5), and feeding lines (1), ECG lines, BP lines, and more. I (Daddy) was assisting the nurse with the transfer of the lines. As the Respiratory Practitioner was picking up Brandon, she forgot about the breathing tube (in the nose and down the trachea and into the lungs) and feeding tube. And I was coming around with the lines and the pole, which carried all the IV medications and etc, I witnessed the RP picking up Brandon with the tubes being unsupported and was placing Brandon into Malunes lap where Brandon was to be rocked to sleep in her arms. During the placement of Brandon into Malunes arms, I noticed that the RP noticed her error and was reaching for the tubes; however, when she did this I clearly seen the tubes were about 2 ½ inches pulled out. Instead of the RP reporting this (I did) she reinserted them into Brandon. Brandon quickly became gasping for air and foam was coming from his mouth, such as if he was a blowing bubbles machine. Of course, now Malune felt everything was from her doings somehow; however, after about 15 minutes of Brandon’s struggling with the doctors’ trouble shooting what and how to help Brandon, Malune found out it had nothing at all to do with her. I immediate explained to the Docs what happened and they responded appropriately. Brandon didn’t go through his 10:00 PM respiratory test, because he is now respiratory-machine free and is doing great. This accident just may have become a blessing. Brandon’s breathing rate is in the low 30’s, heart rate in the low 160’s, and oxygen saturations are 99ith a 1.0 oxygen nasal flow rate (the O2 in the nose thingy). Brandon appears to be doing much better without the respirator.

Good tonight so far. He is resting now, fell asleep at midnight to my rocking of the the bed and Malune's singing. I hope he will last on his own. It is just up to how long Brandon can hold this good status. Oh, and the chest x-ray showed progress in the fight with pneumonia.

Sunday, June 1, 2003 1:46 PM CDT

** SPECIAL THANKS **

Dr. Ilko:
Dr. James Ilko is visiting us daily and giving us his unlimited support to us. We do not know how to thank you, but we want you to know that we have never dreamed that a family physician would be like family to us. Thank you.

............
May 31, 2003

Brandon has had his first setback. It wasn't a big one, but it was one that lengthened his respirator dependency for a short while longer. Brandon was scheduled to go down from 18 respirations to 11 respirations then to 8 respirations by the end of the day and all while being on room air (no additional oxygen). However, during the gradual removal of the respirator, sometime along the 8-respiration setting, Brandon began to fight a bit too hard. He began to have a high heart rate (190's) and a high breathing rate (60-70), which is obvious to see that he was adjusting and adapting, but appeared to be just working too hard to keep it up for any long period of time. So the decision was made to bring the respiratory assistance rate to 18 with a 30-oxygen flow (21 is room air, so a raise of only 9). Soon Brandon was back on track to normal respirations, heart rate, and strength.

There was a discussion on the best way to wean Brandon off the respirator and it was brought up to just give him test runs. These test runs are done by dropping the respiratory assistance rate to 6 for 15 minutes and then taking a blood gas (a test to assure adequate blood gasses - meaning he is breathing enough oxygen in and getting rid of enough carbon dioxide). This test occurs at 1:30 PM and at 9:30 PM everyday.

And on this day, Malune (Mommy) was able to hold Brandon from 5:20 to 7:50 PM. I (Daddy-Sampson), was able to hold Brandon 9:00 to 10:05 PM and this was during one of the tests Brandon went through. Brandon did so well on the test (reducing respiratory support) and blood gasses that tomorrow, Sunday, they have authorized the testing time to be increased to 30 minutes, up from 15 minutes.

HOLDING BRANDON: During the time we had to hold Brandon, we received handholdings, smiles, attempts to talk, and even good flatulence. Most of the time we were singing to Brandon and rocking him in the rocking chair while he was in our laps. Brandon would open his eyes from time to time to make sure we were there and then he would rest peacefully. The nurses reported that he didn't have or even need any pain meds or drugs during our time with him and that Brandon hasn't done so long without the aids of medications. It was truly the work of love. IT WAS TRULY A WONDERFUL EXPERIENCE. It was therapeutic for Brandon, but especially for Mom and Dad, but mostly one for our FAMILY.

Sunday, June 1, 2003 1:05 PM CDT

** SPECIAL THANKS **

FAMILY:
My sisters, brothers, Mom and Dan O'Reilly for visiting us so much and being with us in our deep sorrows and pain for our son Brandon.

WARD'S:
Our Son Sampson is being cared for by our dear friends Paul and Jolly Ward and their three daughters Sarah, Sharon, and Samantha. They treat Sampson as their own son. Thank you Paul and Jolly for everything! You allow us more time with Brandon, knowing that Sampson is so well taken care of.

FRIENDS:
Thank you to all our friends who have visited us and for all of you who have put Brandon Eugene Rolen in your prayers. We thank you!

PROGRESSIVE:
Late in the evening we were surprised by Wendy Hansen and her daughter giving us a visit and by Wendy sweating from carrying groceries she gave to us. Thank you PROGRESSIVE for everything and to all our co-workers, peers, friends, and superiors at PROGRESSIVE for everything. We just don't know how to thank you for such a great gifts in our time of need.

HOEL'S:
And thank you Sandy Hoel for watching Sampson in your daycare and allowing him to carry on with his normal routine as much as possible when his brother, Brandon, is not able to play with him for now. Thank you!

............
May 29, 2003

The x-rays of Brandon's chest that morning (4:00 am) showed progress to the re-expantion of this right middle lung from a partial collapse. His lung cultures showed positive for pneumonia.

Brandon had blood drawn at 2:00 pm for a laboratory test for genetic coding identification to confirm S.M.A. This blood test will take 7-10 day to complete and had to be shipped out to a special lab. This same day, in the evening, Brandon started tube feedings of formula.

............
May 30, 2003

At 11:00 am we spoke with a Genetics Doctor and discussed Brandon's current diagnosis by the Neurologist. We completed a family tree and discussed some things that she noticed; however, the doctor did not want to discuss too much because she wanted to wait for the blood test results to be completed.

Pat McCann, Mike Tomars, and Phil Nuccio took Me and Malune forcefully to lunch. It was a recharging of our batteries that we needed, but just failed to see our batterys were low. Thanks Pat, Mike, and Phil!

This day was also a day for Brandon to show off some of his strength by holding his own while the respirator was dialed down to 11 assisted breaths per minute. Brandon maintained a solid 30-40 breaths per minute.

Thursday, May 29, 2003 2:02 PM CDT

This page has just been created. Mom and Dad (Malune & Sampson) will keep updating this page on a regular basis.

Brandon is our second child. Brandon has an older brother, Sampson, who is 2 years old. Sampson love¡¦s his brother Brandon so much that when Sampson first ever found out about his brother when Mommy was pregnant, Mommy and Daddy immediately told Sampson that he is going to be a big brother. Sampson was so happy that he hugged and kissed Mommy¡¦s tummy and said, ¡§I love you baby.¡¨ And to this day, Sampson kisses Brandon every morning and watches over his brother with love and care by helping Brandon at his feedings to helping put lotion on Brandon and even making sure Brandon has a toy to play with.

5-28-03

Brandon is about 4 months old now and we found him coming down with common cold symptoms. Brandon had a weak cough and showed strength and awareness of what was going on. On Wednesday morning on the 28th Day of May 2003, Brandon developed a fever of 103.1„aF at 3:00 AM. We knew it was no longer just a common cold. We rushed him to the Children's Hospitals and Clinics Emergency Room in St. Paul Minnesota. There, the doctor¡¦s identified that the cold was becoming infected. Meaning, Brandon was too weak to clear the mucus from out from his trachea and throat, so that now that mucus is becoming a growing ground for bacteria. The bacterium has now spread the Brandon¡¦s second lobe of his right lung and pneumonia has developed. This pneumonia has made that second lobe in his right lung collapse. Brandon has since been placed on a respirator to breathe for him. Oxygen is also being given to Brandon to assist his recovery and to keep is oxygen saturation rate above 92, because without the respirator and oxygen, Brandon¡¦s breathing alone would not be enough to sustain his life very long. The doctors have been treating Brandon¡¦s pneumonia with several different antibiotics that appear to be working against the pneumonia infection very well due to the current x-ray images.

5-29-03 (2:35 PM)

Our Angel Brandon has started formula feeding by a NG (Naso-gastric) tube ¡V tube inserted into his nose and down his throat and into this stomach. Brandon is also being weaned off the respirator slowing by slowing down the respirator¡¦s assistance for Brandon every few hours. Such as, 38 res./minute, down to 34 res./min, then a few hours later, down to 30 res./min. and so on. Brandon is currently set at 30 respirations per minute and is breathing on his own for about 20 of those respirations a minute.

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