You can be part of a Miracle

This Monday, June 6^th, Shane and Wyatt will turn 15 months old.  (This Monday just happens to be my birthday as well and before you ask…. 47).

I am writing this because I am asking for your help while so many other children NEED your help.  Right now through tomorrow, Sunday June 5^th at 6pm, The Janet Weis Children’s Hospital at Geisinger is holding its annual telethon.  I am asking that you please make a donation in honor of my sons, Shane and Wyatt Waksmunski.  My boys, and especially Wyatt, are miracle babies and this is your chance to be part of a miracle as well.

Both boys were born on March 6^th, 2010 and were born ten weeks early.  Both have spent so many days, weeks and months in the hospital during the past 15 months.  Both Shane and Wyatt, still today are fed daily by a machine through a feeding tube, both have struggled through surgeries, infections and have had so many setbacks since birth that I have lost count.  Yet, through all the challenges and obstacles, their will to live has been truly inspirational.  However, that will alone isn’t enough and without The Janet Weis Children’s Hospital, they would not be here today.

Today there are currently 81 children in the hospital and Wyatt is one of them. A few months ago we shocked to discover that he was born without a diaphragm on his left side.  Wyatt is currently in PICU (Pediatric Intensive Care Unit) after his third surgery on his diaphragm in the past few months.  His recovery is taking a little longer than we were hoping for but “Super Wy” continues to fight and is improving on his timetable.  As if surgery wasn’t enough, he is also in isolation as he is suspected to have a virus.   

Let me ask you, if your child was sick, wouldn’t you do everything in your power to help them, no matter what?  I have been living everyday of the past 15 months with this exact thought.  I will do anything and everything to provide for my boys.  This also includes raising money for the Janet Weis Children’s Hospital and the Children’s Miracle Network.  I believe in the miracles and I believe in what they have been able to do for my kids. 

Even the smallest donation can make the biggest difference.  Your donation will help Wyatt, my boys, the 80 other children in the hospital and all those who will come after us.  Shane and Wyatt are Miracle Children and with your donation YOU will be part of the miracle as well.

Please make a donation by calling 1-800-322-5437 or by visiting http://www.geisinger.org/cmn/.  Please make your donation in honor of Shane and Wyatt Waksmunski, PO Box 214, Lehighton PA  18235.  (The address is so that they will send us a card telling us about your donation). 

Also, if you live in the viewing area of WYOU, central and NE PA, I will be appearing live on the telethon on Sunday, June 5^th at 1:30pm to present a check that will represent the donations made during the past year in honor of Shane and Wyatt.  We raised almost $2500.  THANK YOU!!!

Again, thank you for your support and your donation.

Wyatt is Back in the Hospital

Here we go again.  Back in January, while in surgery, surgeons discovered that Wyatt was missing the left side of his diaphragm.  A new diaphragm was constructed and attached.   We all thought finally that this is could be the last of the major medical issues for Wyatt.  Well, if nothing else, the last year has taught us to take one day at a time and to not look to far ahead.  We have also learned that sometimes we need to take the day hour by hour even when all looks good because with Shane and Wyatt, things can change quickly.

A few weeks ago, we started to see a change in Wyatt again.  Both kids were sick and Shane even spent a week in the hospital with a high fever and a UTI.  Wyatt never really became as sick as Shane but all along we knew he just wasn’t himself.  Then he became constipated and this caused much stress for the poor guy.  After five days we finally got his bowels moving again and finally some relief.  This was short lived as this past weekend Wyatt appeared to be constipated again.  On Wednesday, Wyatt and Shane both came to Geisinger Medical Center to see their GI Doctor.  During this visit, at the request (demanding!?!) of mom an x-ray was ordered for Wyatt.  Mary knew Wyatt wasn’t himself and knew there was something more than a cold or stomach virus making him unhappy.  BINGO!!  Wyatt has bowel up in his chest cavity and it appears that his diaphragm detached and he was immediately admitted into the Janet Weis Children’s Hospital @ Geisinger. 

Wyatt is currently being evaluated and it looks as though he will spend another night here in the hospital again.  His situation is serious but he is doing well and appears to be stable.  Tonight the plan is to see if he can tolerate his regular overnight continuous feeds, remain pain free and not need oxygen beyond his normal overnight requirements.  If he passes all three tests he might be discharged to spend Easter at home with his family.  This would make us all very happy.

Wyatt will be having surgery again next week to reattach his constructed diaphragm, again.  This is a major surgery that will require his chest to be opened again.  We have been through this before and we will get through it again.  Right now, I just want to make sure he is well enough to come home and spend this weekend with us.  I will stress about next week, next week. 

Before I end this, one last thought.  Moms, trust your gut and force the issue if need be.  I have come to realize that no one knows their kids better then a Mother.  If you feel that something isn’t right just done settle for what a doctor or professional tells you.  Wyatt is his own medical journal and doesn’t follow normal behaviors in terms of medical procedures.  Twice Mary had demanded more be done and both times a very serious condition was discovered after it was thought he was clear to go.   

As always, Mary and I thank you for your support and prayers.  You are very important to us and you all give us strength.  Happy Easter and God Bless.

Please feel free to contact us at ericwaxy@ptd.net

Shane's Condition

Shane’s condition improved today.  His WBC dropped in half from where it was yesterday which tells me the antibiotic is working.  His tests came back positive for a UTI and for the Rhinovirus.  I am more concerned about the UTI because he has had them before and was hospitalized last summer after an UTI lead to an e-coli infection which made him very sick.  His Urologist will be seeing him tomorrow to evaluate his condition but I suspect that he may have a drainage problem causing urine to escape and thus causing the infections.   It will be very interesting to see how this plays out over the next day or so.  Shane is also requiring O2 to help him breath and I suspect that this is more related to the Rhinovirus and nasal congestion and thus not an issue with his lungs.  Multiple X-rays this week continue to show that his lungs are fine yet the difficulty to breath continues.  He is suctioned multiple times a day and they have taken so much mucus out of this little boy of mine.  They have called in an ENT specialist to evaluate him and he should be seen by him tomorrow as well.  He has had no fever the past 2 days which is good news as it reached 104.6 on Sunday when he was in the ER.

Tomorrow will be a new day and let’s hope that Shane continues to improve.  The doctor said maybe he can come home tomorrow but thought that most likely he would need to spend a few more days in the hospital.  One thing we know about both Shane and Wyatt, they are fighters but they play by their own rules.  They enjoy keeping the doctors guessing as to what will happen next.  As always, Mary and I appreciate all the thoughts and prayers that are being said for our boys.  It means the world to us.  Thanks.

Please feel free to contact me at ericwaxy@ptd.net.

Wyatt's Struggle

Here is an article that appears in today's Times News.  This chapter documents Wyatt's most recent struggles and what he has gone through this past December and January.  He is a fighter!!  Thank you again to the Times News for following our family through this journey.  Thank you to Karen Cimms for writing the story, Bob Ford for the pictures and Amy Miller for adding the medical information that brings awareness to the issues.  Also a big thanks to Dr Chris Coppola and to the Janet Weis Children's Hospital. 

I hope you enjoy the story and it made me cry today as I read it.  Please check out the other stories that have appeared in the Times News as they are listed on the right side of the page after you open the link. 

http://tnlife.wordpress.com/chapter-3-breathing-a-little-easier/

Please feel free to contact me at ericwaxy@ptd.net

Wyatt's Condition

Wyatt is doing much better. This morning he didn’t look good and was struggling to breathe. He had a lot of fluid around his lung as his chest tube wasn’t draining properly and that was causing him some problems. Since then they repositioned his chest tube and his 11am x-ray looked better and now his 6pm x-ray even better. His lung fully expanded and he seems to be doing better. He should spend at least one more day in PICU. I am hoping that tomorrow he is back to formula again as he still is only taking only IV Fluids. I was talking with his surgeon today he told me that Wyatt was something else.  He said this birth defect of no left diaphragm is usually seen on ultrasound or discovered immediately after birth and is corrected between weeks 2 to 4 after birth.  He said in many causes the babies need to be on a ventilator.  He has heard no cause where a baby has lived for almost 11 months with this condition and in Wyatt's case, he didn’t even need oxygen until recently and even then it was only at night.  I am trying to do some research on this condition and to validate what I was told but so far I have found next to nothing on this subject.  Any readers of this blog have a baby born missing half a diaphragm?  If so, I would love to hear from you. 

In case you missed what happened with his surgery yesterday, when Wyatt was opened the surgeons were surprised to find that his left diaphragm was missing.  I wish I was there as this was his fifth surgery and the diaphragm, or so they thought, was seen on the previous four.  The surgeons built him a new one and attached it so that now he has the separation of stomach and chest.  Wow, I was stunned to hear that this was the case after surgery.  I suspect that now his breathing should be much improved as well as his eating and hopefully finally put him on tract to spend more time at home and less time in the hospital. 

SUPER WY!! 

"Super Wy" - Wyatt is facing surgery again.



I think one of the most difficult decisions a parent has to make is a decision concerning medical treatment or surgery for a child when he or she is unable to tell you exactly what hurts or how they are feeling.  The decision is easier to make if the situation is dire or that person is in immediate danger or if it involves life or death.  The situation with Wyatt is very complex and involves many issues.  I am trying to process each issue to make the decision that will provide the best care for him not only today but for the rest of his life.  Wyatt is having multiple issues right now from feeding, diaphragm, lung and others.  All or some may need to be surgically repaired.  Wyatt has proven after each operation, even minor, that he struggles to recover and the post op has proven to be a critical time for him.  His diaphragm repair is a major surgery that will require his chest to be completely opened and his recovery will be painful and take days afterwards.  I have requested a surgeon who has operated on him in the past.  Due to the complexity of the issues and the fact multiple concerns may need to be addressed during surgery, at least two pediatric surgeons will be needed.  As all of this is being evaluated with multiple specialists, this process it is taking a few days to complete.  Wyatt may not be fit to go into surgery several times and the load on his body and recovery also need to be considered.  He is in pain from time to time and I feel that the doctors are treating his pain as well as possible.  Unfortunately, pain is present. 

Wyatt has eventration of left Diaphragm.  What this means is that part of his Diaphragm is not working properly and needs to be repaired. 

He has lung disease related to atelectasis and also has moderate pleural effusion around his left lung.

Atelectasis is caused by pressure on the outside of the lung, this pressure on the lung is caused by buildup of fluid between the ribs and the lungs which is Pleural Effusion.  The result of this is difficulty in breathing and chest pain.  Wyatt had pleural effusion a few weeks ago as well had while in the hospital had a chest tube to drain this fluid.

Due to his feeding issues and related GI concerns, the doctors are also considering a J tube to replace his G tube.

Wyatt appears headed for surgery sometime this week.  He is struggling now and at times is real bad.  The nurses and doctors are watching him closely and doing all they can to keep him stable, hydrated, nourished and comfortable.  I am very happy with the care that he is receiving at Janet Weis Children's Hospital @ Geisinger.

Mary and I appreciate all the emails, responses on Twitter and Facebook and prayers that are being said for Wyatt and our family.  This is a difficult time for us and with your support, we will get through this.  I will continue to share our experiences as we go through this journey.  I hope that this experience helps educate some who read about us and helps others who may be dealing with challenges that may seem overwhelming.  Thank you for being part of our journey.

https://health.google.com/health/ref/Atelectasis

http://en.wikipedia.org/wiki/Pleural_effusion

http://huntingtondisease.tripod.com/feedingtubes/id1.html

http://www.geisinger.org/services/jwch/index.html

Please feel free to contact us at ericwaxy@ptd.net

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