June 5, 2013

From Mike to our family.

Dear Family,

For those that don't know, our little Nathan has long had feeding and movement problems.  Beth and Mike have been fighting to figure out what is causing Nathan's problems for many many months now, bringing him to different doctors and sub-specialities from Pittsburgh to Boston and back.  He was admitted to Children's Hospital last Wednesday and on Saturday we learned that the source of Nathan's problems was a large tumor on his brain.  This particular tumor originates in an important part of his brain, near the brain stem that controls many of our most vital functions. It was determined that immediate surgery is required.  We spent a few days consulting surgeons from many different places and Beth and Mike chose a wonderful pediatric neurosurgeon who specializes in precisely this area.  We met with him yesterday and Nathan went in for surgery this morning.  The surgery is very delicate because of the origin of the tumor and unlikely to be able to remove all of the tumor, but we pray for the best.  We do not know if the tumor is malignant (cancerous) or benign as yet, but all indications to date from multiple opinions are that it is what's known as a low-grade glioma, which is an absolute best case scenario and the surgeon is very hopeful for a good outcome, as are we.  

My mom will keep everyone updated as best she can.  Beth and Mike are unable to respond to emails for some time but I'm sure they will enjoy reading your responses at some point.  Obviously Nathan can't have any visitors for a long time as he'll go directly to the intensive care unit, but all of your thoughts are prayers are so welcome.  We have already gotten a first report and thus far Nathan is doing well.  He is a strong little boy and will continue to fight, as he has for all of this time.  His mom and dad have been as remarkable and resourceful as anyone could imagine in their wildest dreams.  Nathan is a very lucky little boy.  

I hope all is well otherwise. 

Mike

p.s. on a side note, Jaime and I had a baby two weeks ago, Alexa Teresa Talkowski, she's pretty cool.  I'm guessing my mom has already mentioned this.

June 5, 2012

We just talked to the surgeon. They believe they removed at least 75% of the tumor and the preliminary pathology report said the tumor is benign. We will not confirm the pathology for a few days. We knew 100% of the tumor could not be removed, so this is the best possible outcome we could have asked for. He is a fighter and the prayers are working.

Please continue to pray. He is still in critical condition and will be on a breathing machine for awhile, but our little guy made it through.

June 5, 2012

Good Morning!

As you know, Nathan was diagnosed with a substantial brain tumor that we believe is originating from the brain stem and reaching out to the cerebellum. He is in surgery right to remove as much of the tumor as they can safely. Safely is the key word. Because the brain stem controls breathing, they have to be very careful how much of the tumor is removed. We know there is a portion of the tumor they can not remove. The surgery is expected to last 7 hours. They have already inserted a tube in the top of the brain to drain the fluid and they just started the actual surgery.

Nathan is in excellent hands here. Dr. Ian Pollack is the Neurosurgeon performing the surgery. We pray that God guides his hands to safely remove as much of the tumor as possible. We also pray the tumor is benign. Those are the two main pieces of Nathan's journey we are currently praying for.

We know you are all praying for our little guy today. We can not thank you enough. Mike and I are truly overwhelmed by the care and concern you have all shown. We find comfort and strength in knowing so many people are looking afterNathan. The reason we chose the name Nathan is because it means, A Gift From God. We know Dr. Pollack will take care of our precious gift.

My sister-in-law, Kristen is going to help me give you all updates. Nathan is going to need every ounce of my time after he gets out of surgery. I know you are all waiting to hear how things go and I will not have the time to write individual emails. I apologize.

These words were sent from my brother this morning and I believe them to be true.

"Today is the first day we get up and don't have to try and figure out what is wrong with Nathan. Today is the first day we get to cure Nathan. Today he stops getting worse and starts getting better. We have the right pictures, the right diagnosis, and the right surgeon and a stronger 8 month old than anyone can imagine. Today he starts to get better."

Much love to all of you.

Beth, Mike, and Nathan

May 31, 2012

Hello Everyone!

I want to update all of you on what is going on with Nathan. Yesterday morning we went for our routine appointment with his feeding team at Children's. It is an amazing pediatrician (dr.choi...i know some of you know her kids) and 4 different therapist who have been following Nathan for 4 months now. After watching him eat yesterday they determined that he is still having significant aspiration of the milk. They feel it is unsafe and too difficult on Nathan and us to continue on the feeding path we are currently doing. On a good day, Nathan is still only getting about 1/2 of what he needs. They decided to admit us yesterday and they put an NJ feeding tube in his nose to supplement his feedings. We will be here awhile until they do an MRI of the brain, scopes for GI issues, and work out the feedings.  Unfortunately the tests require general anesthesia because of Nathan's risk of aspiration, so it is very difficult to coordinate everything and have him fast for 8 hours with each test.

The large team of specialists we are working with all feel there could be a strong chance something is going on in the brain that is causing his feeding troubles and possibly the lack of movement on the left side of his body.

The tube feeding is going to take awhile to get worked out. We feed him as much as we can and what he doesn't take we give through a tube. It is an extremely frustrating process and Nathan is struggling to accept the bottle. We now work hour by hour and take each step as patiently as we can.

We have learned to ask a thousand questions and take each challenge as it comes. You never want your child to struggle like he has had to and I know we are in good hands here.

Please pray that Nathan starts to accept the bottle and that we get a clear MRI.  Those are our biggest challenges right now.

Thank you all for your thoughts and prayers. Nathan needs them right now.

Love,
Beth

Nathan Loved Strooler Rides on the 7th floor. 

Although he was going through so much, he still wanted to play with his toys. 

May 7, 2012

Hello Everyone,

I am sorry for the mass email.  We just got home from our trip to Boston Children's Hospital and  I wanted to give you all an update on Nathan.   You have all been so kind to ask about him every week.   I thought it would just be easier to tell you through email.    

We saw a Brachial Plexus specialist today and all of your prayers must have been working because Nathandemonstrated more today than he has ever done.  There are four key motions that Nathan has to demonstrate to show that the nerves in the neck and shoulder are firing to the muscles.  Nathan has been doing two of them over the past few weeks, but we have not seen the other two.  Just last Friday we were at therapy and we were trying so hard to getNathan to lift his arm in a sitting position and Nathan was not even close to demonstrating this.  He has never shown signs of lifting the arm unless he is laying down. Nathan was completely off his schedule today and rallied to the occasion.  You would never know that this little boy hates to eat or sleep because he was so pleasant for all the doctors.   He was evaluated by four different people over a two hour period today and for every one of them he showed that he could lift his arm while sitting.    We were shocked!!!  It was just unbelievable that today was the day he was going to show us that he could do it.  He demonstrated everything that he is capable of doing today.  That was what was so difficult about this appointment.  If he was not in a playful mood and did not feel like lifting his arm, they could not get an accurate assessment of which nerves were working.

After todays assessment, the doctor does not feel that he needs reconstructive nerve surgery at this time.  That is the surgery that is extremely time sensitive and would need to be done immediately.  With Nathan's feeding problems and recent diagnosis of aspiration, it would be extremely difficult to operate right now. There is still one more movement thatNathan needs to be able to do, but time is on our side.  If he needs the nerve transfer surgery we can do it any time up to 12 months and still get the same results as if we did the surgery tomorrow.  The doctor is very optimistic that Nathan will continue to improve with therapy and not need the surgery at all.  This is a completely different outcome than both therapists we work with suspected as of last week.  We will follow up with the team of surgeons here in Pittsburgh on July 9th and the team in Boston on July 23rd to reassess his progress and make a final decision on the surgery.  I just know my little guy is going to once again show us who is in charge!  

On another positive note, Nathan has not had a major vomit in 6 days.  This is huge for him!!!  He has not gone more than 2 days without vomiting in 7 months.  In addition, he opened his mouth to eat solid foods for the first time today.  For the past several months we have been trying to feed him and he would lock his lips and scream.  We truly believe the new medications are working and hopefully this little guy is starting to turn the corner.  He is still eating very little and not gaining weight at healthy rate, but over time we hope that he is not afraid to eat because he will learn that it does not hurt him.

Mike and I can not thank you all enough for your thoughts and prayers.  Nathan is so lucky to have you in his life.  You are not just part of the studio, you have become part of our family over the years and we have all been through many ups and downs together.  He has no idea how much he is loved and how many people are supporting him.  We are not out of the water yet, but today proved to be a positive step in the right direction for many of Nathan's challenges.  That is all we can ask.

We will keep you posted.  In the mean time...keep the prayers coming!

Beth

April 16, 2012

I just got back from Children's and I think we have found some answers to Nathan's eating trouble.  They did a swallow study on him which means he had to drink barium while they x-ray his throat.  They determined that he is aspirating thin liquids.  That is why he is coughing and choking during the feedings.  He is aspirating the liquid on the way down and then aspirating it again on the way up when he refluxes.  She compared it to when people get drunk and vomit and then choke on their vomit...I know...nice analogy.  Nathan has actually been doing a fantastic job of protecting himself against the liquids going into his lungs.  When he coughs throughout the day and at night he is protecting himself from aspirating.  Many babies who have this are sick all the time from the liquid going into their lungs.  When he is gasping for air that is him working through the reflux and the aspiration that is occurring on thew way up.   We have been very lucky so far.  If we would have gone much longer we probably would have started to see weight loss and him start to get sick.  

This is explains so much of what he is going through.  The crying and fussiness is all a defense mechanism.  Babies are soooo smart.  She said to keep him upright as much as possible.  She was so happy when I said I had him napping in a swing....unfortunately we just stopped that habit.  We have to thicken his feedings at a specific rate until we see the symptoms diminish.  Hopefully, that will stop the aspiration on the way down, diminish the coughing and crying which will help the reflux.  It is all a process, but we will get him on the right path soon.  It is much easier to deal with the day to day when you know what you are dealing with.  I just hope he gets better because it is scary to know his crying is choking is because he has been choking on his food.  We now have to work with the delayed gastric emptying to see if how he handles the rice cereal in the bottle.  That will give us more information.  

I feel like I finally got some answers today.  She gave me a big hug once we saw the aspiration on the camera and said we finally found an answer! 

March 17, 2012

We changed his medication to Prevacid and Zantac which seems to be making a difference.  He is also on straight Alimentum formula for now.  I did go to my pediatrician about Nathan's shoulder.  She ordered and MRI and we set up an appointment with Neurology.  After my physical therapy appointment last week with my therapist from children's the plan changed quite quickly.  She has been looking at his shoulder closely over the past month and she really thought he might have brachial plexus.  She is on the team of doctors in the brachial plexus clinic and she got us in to see them this past monday.  Unfortunately, he does have it and we are looking at operating in July or August.  We will hope and pray that there is improvement over the next few months, but it is highly unlikely at this point of his injury.  Needless to say, that was a tough blow.  We are dealing with it much better now that we have had time to digest all of the information and start processing the idea of putting our 9 month old through a fairly major surgery.  I just hope that it works, but I know that he will never have full mobility in his left arm.  Maybe he will surprise us and prove us all wrong.  Thank you so much for pointing it out and encouraging me to have it checked and not let it go.  Time is on our side right now and it may not have been if you didn't say something and if Meg did not get us into the clinic.  I am in very good hands with her.  She is AMAZING with Nathan!  In addition, the alliance approved two days a week of therapy, so he is getting two days through the alliance and 1 day with Meg at Children's.  He is going to be rolling over all the kids when they are done with him...haha.

March 15, 2012

Nathan's Feeding: We went to the feeding clinic at Children's two
weeks ago and a team of four people (Ped., OT, PT, and Dietician)
watched him eat and talked to us for about an hour.  After that, they
all left and met to discuss their recommendations for Nathan.  They
said he does have severe acid reflux and they are not sure what else
is going on.  They had me stop giving him breast milk and all solid
foods.  He is on a hypoallergenic formula for now.  I am still pumping
twice a day, but that ship has sailed. They
follow up with us every 5 days to see how things are going.  This team
is AMAZING!!!  He is throwing up a little less than he was, but seems
much more content.  They also switched his medication.  It is hard to
say what is working and what is not, but we are just going to keep
trying different things until he stops throwing up and continues to
gain weight.

In other news with Nathan:  We got some bad news on Monday.  Nathan
was diagnosed with Brachial Plexus which is a torn nerve from his left
ear to his shoulder.  It happened during his delivery.  They usually
diagnose this at birth or three months, but no one really tested for
it until we pointed it out.  We have noticed that he does not use his
left arm, but we thought it was just associated with the Torticollis.
After a month of therapy and closer examination of the arm, they
determined that he has a full Brachial Plexus tear.  We met with a
team on doctors on Monday (Neurosurgeon, Plastic Surgeon, and Physical
Therapist) who evaluated him.  There is actually a Brachial Plexus
clinic at Children's and they will follow and treat Nathan as a team
which is absolutely amazing.  Basically what this means is that over
the next three months we will hope and pray that Nathan starts to
regain some movement in the shoulder...it is HIGHLY unlikely that he
will at this point.  If we don't see improvement then they will need
to operate in July.  They will remove a nerve from his leg and replace
the torn nerve in the shoulder.  It is a 4-6 hour surgery with a 3-6
month recovery period.  He will lose all movement and function in that
arm for about two months and then he will slowly gain it back.  The
bad news is that even after the surgery, he will most likely never
gain full function back in his left arm.  If it is successful, he will
be able to move the arm and do most things that do not involve lifting
his arm above his shoulder.  When we asked if he will be able to swing
a bat or golf club they said that there is no way to tell if he will
be able to do those things.  Kids are extremely resilient and we just
have to have faith that he will be strong and surprise us all with
what he will be able to do.  There is still a slim chance that he
could start to regain movement in the arm over the next several
months.  That is why they are going to wait as opposed to operating
now.  I just have to stay positive and take one step at a time.

Most of my days are filled with physical therapy appointments, meeting
with doctors, and going through red tape on the phone with the
offices.  It is a good thing that I did not go back to work, because I
would have never been able to do it with the amount of time and
appointments we go to. He is a very happy little guy and is already
amazing us with his ability to adapt.

February 1, 2012

We went to the doctor today for Nathan's 4 month check up.  He got 3
shots and 1 oral vaccination.  We had to wait about 40 minutes for the
doctor.  Pap kept him laughing and happy for a long time, but by the
time the doctor came in Nathan had enough.  He was tired and crying
before the exam even started.  So you can imagine that once the
examination and shots came around everything went down hill.  Nathan
was not a happy camper.  Once we got him settled and in the car he
passed out for his usual 30 minute cat nap.  He is sleeping in his
crib now and seems just fine.

The doctor said he looks perfectly healthy.  He said that he is long
and lean...that clearly does not come from my side of the family (ha
ha).  His neck is crocked to one side because the muscles are tighter
on one side than the other.  It has been like this since he was born.
They call it Torticollis.  They will grow out of it, but he will have
to have some physical therapy or it will not loosen on its own.  Who
knew there was infant physical therapy??  We got the ok to start rice
cereal, oatmeal, and food so we will see how that goes.  Overall, we
got a good report so that was good.

Weight: 12.1 lbs (5th percentile)
Height: 25 1/2 inches (75th percentile)
Head: 41 1/2cm (35th percentile)