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

The Waksmunski Family: Eastern PA Down Syndrome Holiday Party

The Waksmunski Family: Eastern PA Down Syndrome Holiday Party: "Thank you to the Times News for traveling with us to the Eastern PA Down Syndrome Christmas Party. Here is the article that appeared i..."

Eastern PA Down Syndrome Holiday Party

Thank you to the Times News for traveling with us to the Eastern PA Down Syndrome Christmas Party.  Here is the article that appeared in today's edition.  Also feel free to read the other articles that appeared in the Times News by selecting the chapter or article on the right side of the page. 

http://tnlife.wordpress.com/epdsc-hosts-annual-holiday-party/

Spend a Week with Shane and Wyatt

I have decided that I would write about this past week in hopes of sharing with you what we do on a weekly basis.  Granted, not every week is exactly like this but this has become more normal and not unexpected.  I realize that many have it far worse than we do and I am in no way trying to minimize what others are going through but only opening up my family to those who are interested in reading about our Journey. 

The week started on Monday morning when my wife, Mary, took the two hour drive out to The Geisinger Medical Center (http://www.geisinger.org/) in Danville PA.  Both Shane and Wyatt had regular doctor appointments with their Pediatric Gastroenterologist and to complete some routine lab work.  As Mary went out to the medical center with the twins and one nurse, I worked from home to stay with Jesse.  Monday was a long day and some ten hours later Mary returned to a starving husband and child.  I guess a box of Girl Scout cookies and bag of potato chips only held us for so long.  It was a long day for everyone and I know we were all exhausted when we all went to bed. 

Tuesday started just like any other day, well the waking up and taking a shower part anyway.  It was shortly after 8am, I was getting ready to leave the house for work when the phone rang.  When the phone rings first thing, rarely is this good news.  Wyatt’s lab results had come back and his White Blood Cell (WBC) count was very high.  The doctor requested that we see our pediatrician immediately and that he was already faxing to them the results of the blood tests.  So now at 9am instead of heading to work, I was with Wyatt and his nurse heading back to the doctor.  The doctor was very concerned as his platelet counts were off as well and we were sent to the hospital for additional tests and lab work.  It was at this time we again discussed the fact that he might have Leukemia.  For Wyatt, this would now be the third time in his short life that Leukemia has been discussed.  The first time was right after birth and then again a few months after that.  Both times because his WBC counts were so high.  Both times he was treated in the hospital with medication and one blood transfusion and both times it was determined that he did not have Leukemia.  Here we go again, strike three???  Later that afternoon, the call came that we have survived another scare and that Wyatt did not have Leukemia.  The cause of his high WBC count was still unknown.  We would have to wait until all the lab results were in.  Here is an article for additional reading on Down Syndrome Leukemia.  http://www.disabled-world.com/health/cancer/leukemia/down-leukemia-cancer.php. 

Tuesday evening I made the drive to Allentown PA to Walters Pharmacy to pick up some prescriptions for both Shane and Wyatt.  There were thirteen in total.  I wish I could just stop by the local pharmacy but some of the medications they take are compounded meds that need to be made or mixed or something that the local pharmacy cannot make.  I was ready for bed when I returned home that evening.

Is it Friday yet?

Wednesday morning and we were back to normal with no doctor’s appointments and everyone seemed healthy.  We were still waiting on Wyatt’s lab results and this would be the day that both Shane and Wyatt would be introduced to rice cereal.  Up to this point the twins have only had formula.  They both have G-Tubes and take bottles during the day with continuous feeds overnight.  Both boys have also had Fundoplication Surgery as eating and reflux has been problems for them since birth.  Here is some additional information about Fundoplication; http://www.medicinenet.com/fundoplication/article.htm.  But today was rice cereal day.  Around dinner time, Shane and Wyatt ate some cereal and both seemed to enjoy it.  They were given a small amount and ate it up.  As the nurses were getting them ready for bed Shane started to have some problems.  It was now 9pm.

I was on the road Wednesday as I left in the morning on a business trip that would take me to Boston for a few days.  I spent the day traveling and made stops in Westport CT and South Windsor CT.  It was 7pm when I arrived in Boston and checked into my hotel room.  I had dinner and just after 9:00pm, my wife called and my three day visit would turn into a three hour visit. Shane was in trouble.  He was trying to vomit, which he can’t do because of the fundoplication.  He was wretching, gagging and in respiratory distress.  Shane was becoming very lethargic and nearly unresponsive.  He was having a very difficult time.  Mary called Stacy, one of the nurses who had just left and she returned to assist.  They suctioned him, tried to relax him and called 911.  There was also fear of aspiration, a situation that we experienced before with Wyatt.  My wife gave me an update and then went with the paramedics to the hospital.  I called Nana, my mom to come and watch Jesse and Stacy the Nurse stayed to watch Wyatt.  It was now close to 10pm and my three hour trip was now over as I began the five hour drive to Allentown and Lehigh Valley Hospital.

My wife called me just prior to my arrival and told me that Shane was doing better and that he was being discharged.  It was around 3:15am when I arrived to find a very tired mama and a sleeping boy.  We gathered our things and went home arriving about an hour later.  Was it still Wednesday night or is it now Thursday morning?  Sometimes the days just seem to run together and this was one of those days.

Thursday morning started with a call to the Pediatric Gastroenterologist at Geisinger to provide him an update on what had happened.  The doctor was concerned about a possible intestinal blockage because bile was backing up and coming out his G-Tube.  He also suspected that Shane’s reaction could have been a reaction to the rice or simply just a stomach virus.  The plan for Shane was quite simple; he would be feed only pedialyte for his first feeding.  If he held it down or had no reaction he would receive the same three hours later.  If he was OK for both feedings, his third feeding would be formula.  If at any time he struggled with the feeds he was to be brought immediately to the Janet Weis Children’s Hospital at Geisinger for admission. http://www.geisinger.org/services/jwch/  Shane’s feeding went well and he remained home.  Both boys were taken off rice cereal until they could be further evaluated by the feeding clinic.  Thursday night, we all slept well.

Friday was a good day for all of us.  Everyone got a few hours of much needed sleep.  The pediatrician called Friday morning and said that Wyatt’s lab results were back.  They confirmed that he had a Urinary Tract infection (UTI).  This infection would be treated with an antibiotic for ten days and a return doctor’s visit in two weeks.  This was a welcome outcome considering what we were thinking earlier in the week but still an issue that we will need a follow up with his Urologist.  Shane had a UTI a short time ago that developed into an e-coli infection that landed him in the hospital for a week.  I wonder if we can get a two for one discount.

I did make another trip to Walter’s Pharmacy Friday evening due to the fact the local pharmacy did not have the antibiotic that the doctor wanted Wyatt to take. 

We also managed to have both physical and occupational therapy for the twins during the week.  I never mentioned my son Jesse, except for when Nana came to babysit for him.  He is in pre-school and attends twice a week and we managed to get him there and to spend time with him as well.  We had a full and busy week, but this is what we do.  It was now Friday evening, the week was over and the weekend had finally arrived.

On Saturday morning we packed the car and went to breakfast with the Eastern PA Down Syndrome Center.  This was the center’s annual Christmas Party and was hosted by the Allentown Brew Works (http://www.thebrewworks.com/allentown-brewworks/). There were 171 people that attended plus one Santa.  It was a great morning and a great ending to a crazy week.  The people that belong to this center have welcomed my family with open arms and welcomed us into their family.  It was great seeing people that we meet at the Buddy Walk and I love meeting new people too.  I just wish that I had more time as I wanted to sit and talk with everyone that was there.  I will post an additional link about the party later this week. 

Now as I prepare for a new week and the challenges ahead, I pray to God to give me strength to carry on.  I thank God for making Mary my partner in this Journey and I thank him every day for the people that are now part of my new family.  Well, I have to go as I need to get ready for a new week, a new journey with new challenges and opportunities. 

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

Please write Gov Beebe of Arkansas

I am encouraging everyone to write Governor Beebe at http://governor.arkansas.gov/contact/index.php. Please include in your letter that this baby boy is in Arkansas Children’s Hospital.  Also include that fact there is a DNR that was placed by the adoption agency and that a DS adoption network has already identified multiple families that are willing to adopt this child.  In the interim while adoption issues are worked out, this child needs a guardian ad litem appointed to protect him.

Any letter to the governor should also be cc'd to the hospital personnel below. This should get the hospital's attention immediately that a full scale blitz may be coming their way so the baby will receive ULTIMATE great care at that point, right?  The hospital main line and they said to send emails to info@archildrens.org but list out the recipient’s names in body of email.

Jonathan R. (Jon) Bates
President, CEO, and Director
Arkansas Children's Hospital

Dan McFadden
Director of Communications
Arkansas Children's Hospital

http://definitions.uslegal.com/g/guardian-ad-litem/