PRAY FOR TANNER
Donation protected
Tanner Barborak is a precious 5 year old little boy, and the son of Jason & Jamie Barborak. Tanner was born with a serious heart condition and has endured more than you could possibly imagine. Due to his heart condition, he has a serious condition called PLE.
Tanner went into hospital nearly 8 weeks ago now, for what they were hoping was a somewhat straight forward treatment to get the PLE into remission.
Unfortunately this has not happened and he has become much worse.
PLE is a disorder characterized by abnormal and often profound enteric protein loss. It’s a relatively uncommon complication of the Fontan (Tanner’s heart) and other congenital heart disease (CCHD) procedures. Jamie says that she is frequently asked about Tanner’s care and why the doctor’s are not finding a solution. These are Jamie’s actual words: “PLE is a very complicated, complex condition with no set treatment and no cure. There are many different treatment options that can be tried, but not all treatments work for some kids. It is basically all trial and error and can take months to find what, if anything will work. How long it will work is also unknown. If no treatment is found to work, a heart transplant will be the only option. There is a hospital in Philadelphia that is working on new techniques to try and get PLE into remission. Our cardiologist has contacted them to see if Tanner might qualify for this program.”
On 10-26-18 A decision was made to put Tanner on 100% TPN (total parenteral nutrition). This was to help increase his albumin levels, amongst other low levels. This meant Tanner only being allowed to have ice chips & clear liquids.
After a few days of Tanner being incredibly brave and strong he began suffering from anxiety and depression. He told his mom he was “sad”. With full time TPN also came other problematic situations. Tanner’s PICC line leaked/bled constantly. His blood soaked dressing had to be changed more frequently than it needed to be. This came with the worries of line infections. It also meant sweet Tanner enduring the pain of multiple dressing changes. Eventually both lumens were failing and the clotting only worsened. On 11-8-2018 Tanner was sedated and sent to IR (interventional radiology) for a new PICC.
Due to the anxiety and depression, Tanner wasn’t sleeping. The dr’s opted to give a small dosage of ambien (a sleep aid) and this resulted in yet, another nightmare. Within about 15 minutes, Tanner’s heart rate shot up, he was slurring his words, he was very pale and dusky in the face, and he was not making sense. The doctor was immediately called. The doc figured it was just a reaction to the Ambien, but since he had never seen a reaction like this to Ambien, and due to the fact that Tanner’s blood clotting levels are extremely low he wasn’t sure. He wanted to make sure that Tanner wasn’t having a brain bleed (as the symptoms are similar), so Tanner was whisked down to radiology for a CT scan. Luckily the results were negative for any bleeds.
As if all of this hasn’t been enough Tanner suffered a horrific stomach virus known as C-Diff that made him very sick. The C-Diff had to be treated with antibiotics and this interfered with Taners many infusions. All of this causing overwhelming turmoil of miscommunication amongst nurses regarding surprise schedule changes to various infusions. Thankfully, Tanners C-Diff was eventually treated and some of the antibiotics were able to become a thing of the past.
To keep Tanner rested (mind and body) his doctors have him on a schedule full of PT, homeschooling, rest, reading time etc.
On 11-9-2018 the family got news from CHOP (Children’s Hospital of Philadelphia). CHOP informed them that they felt Tanner is a good candidate for their Lymphatic Embolization Procedure. While GREAT NEWS AND AN ANSWER TO SO MANY PRAYERS...it could take weeks for Tanner to even be scheduled for this procedure and while waiting he will continue to be hospitalized in ICU as they still have a very long road ahead.
While Tanner improves in some areas everyday, he is still retaining a lot of fluid. He is able to get out of the ICU room from time to time with PT. He is being allowed to drink various broths with a few different flavors and this in itself makes for a happier Tanner.
It has been confirmed that Tanner’s admittance to CHOP has been accepted. Today Jason & Jamie will be having a conference call with a nurse practitioner from CHOP to discuss the future. They have been in contact with a social worker who will be working on lodging, transporting etc.
As many know, hospital stays are expensive. Not only the continual pile of medical bills, but the day to day expenses. The expenses to make the next move for Tanner will not be small. This family would never ask for help. If they were in the other side of something like this they would be the first to lend a hand. If you feel led to do so, please join in with us as we help Tanner and his family in their time of need.
Please continue to pray for Tanner and his family, as they have a long and unknown road ahead of them. To each of you, I know they thank you and are forever grateful.
Tanner went into hospital nearly 8 weeks ago now, for what they were hoping was a somewhat straight forward treatment to get the PLE into remission.
Unfortunately this has not happened and he has become much worse.
PLE is a disorder characterized by abnormal and often profound enteric protein loss. It’s a relatively uncommon complication of the Fontan (Tanner’s heart) and other congenital heart disease (CCHD) procedures. Jamie says that she is frequently asked about Tanner’s care and why the doctor’s are not finding a solution. These are Jamie’s actual words: “PLE is a very complicated, complex condition with no set treatment and no cure. There are many different treatment options that can be tried, but not all treatments work for some kids. It is basically all trial and error and can take months to find what, if anything will work. How long it will work is also unknown. If no treatment is found to work, a heart transplant will be the only option. There is a hospital in Philadelphia that is working on new techniques to try and get PLE into remission. Our cardiologist has contacted them to see if Tanner might qualify for this program.”
On 10-26-18 A decision was made to put Tanner on 100% TPN (total parenteral nutrition). This was to help increase his albumin levels, amongst other low levels. This meant Tanner only being allowed to have ice chips & clear liquids.
After a few days of Tanner being incredibly brave and strong he began suffering from anxiety and depression. He told his mom he was “sad”. With full time TPN also came other problematic situations. Tanner’s PICC line leaked/bled constantly. His blood soaked dressing had to be changed more frequently than it needed to be. This came with the worries of line infections. It also meant sweet Tanner enduring the pain of multiple dressing changes. Eventually both lumens were failing and the clotting only worsened. On 11-8-2018 Tanner was sedated and sent to IR (interventional radiology) for a new PICC.
Due to the anxiety and depression, Tanner wasn’t sleeping. The dr’s opted to give a small dosage of ambien (a sleep aid) and this resulted in yet, another nightmare. Within about 15 minutes, Tanner’s heart rate shot up, he was slurring his words, he was very pale and dusky in the face, and he was not making sense. The doctor was immediately called. The doc figured it was just a reaction to the Ambien, but since he had never seen a reaction like this to Ambien, and due to the fact that Tanner’s blood clotting levels are extremely low he wasn’t sure. He wanted to make sure that Tanner wasn’t having a brain bleed (as the symptoms are similar), so Tanner was whisked down to radiology for a CT scan. Luckily the results were negative for any bleeds.
As if all of this hasn’t been enough Tanner suffered a horrific stomach virus known as C-Diff that made him very sick. The C-Diff had to be treated with antibiotics and this interfered with Taners many infusions. All of this causing overwhelming turmoil of miscommunication amongst nurses regarding surprise schedule changes to various infusions. Thankfully, Tanners C-Diff was eventually treated and some of the antibiotics were able to become a thing of the past.
To keep Tanner rested (mind and body) his doctors have him on a schedule full of PT, homeschooling, rest, reading time etc.
On 11-9-2018 the family got news from CHOP (Children’s Hospital of Philadelphia). CHOP informed them that they felt Tanner is a good candidate for their Lymphatic Embolization Procedure. While GREAT NEWS AND AN ANSWER TO SO MANY PRAYERS...it could take weeks for Tanner to even be scheduled for this procedure and while waiting he will continue to be hospitalized in ICU as they still have a very long road ahead.
While Tanner improves in some areas everyday, he is still retaining a lot of fluid. He is able to get out of the ICU room from time to time with PT. He is being allowed to drink various broths with a few different flavors and this in itself makes for a happier Tanner.
It has been confirmed that Tanner’s admittance to CHOP has been accepted. Today Jason & Jamie will be having a conference call with a nurse practitioner from CHOP to discuss the future. They have been in contact with a social worker who will be working on lodging, transporting etc.
As many know, hospital stays are expensive. Not only the continual pile of medical bills, but the day to day expenses. The expenses to make the next move for Tanner will not be small. This family would never ask for help. If they were in the other side of something like this they would be the first to lend a hand. If you feel led to do so, please join in with us as we help Tanner and his family in their time of need.
Please continue to pray for Tanner and his family, as they have a long and unknown road ahead of them. To each of you, I know they thank you and are forever grateful.
Organizer and beneficiary
Heather Bing
Organizer
Jewett, TX
Jamie Barborak
Beneficiary