Wednesday March 19th

Today is Wednesday March 19th and is our son’s 4 month birthday!  Happy Birthday Thomas!  I cant believe it has been 4 months already. I know parents always say that their children grow quickly , but I feel like it has FLOWN by since we have been in the hospital for much of his life.   I constantly feel guilty about having him spend so much time in the hospital at such a young age, but my optimistic side  says this is making him more “flexible” 🙂   He is a trooper.  Just like his daddy.  And who knows…. maybe he will grow up to be a doctor 🙂

So here we are, back in the hospital.  the remainder of our last stay at CTCA was full of ups and downs and finding solutions to one problem, which then would cause complications to another issue.   We spent the end of last week battling a low Hemoglobin issue which was thought to be caused by the fluid that we have to pull from Hayden’s abdomen daily.  Hayden was on blood thinners for his clots which was causing more blood to escape and therefore pulling down his hemoglobin levels.  The IV nutrition he was on was causing him to produce more fluid, so we made the decision to take him off IV nutrition (he can eat orally just fine) so that he does not have to take off as much fluid and therefore not loose as much blood.  We also had to take him off blood thinners which is running the risk of future clots, but felt we could not afford for him to continue to loose blood.

We got some good news on Friday in that they are  considering doing 2 procedures that we did not know could be done.  They found a couple dilated biliary ducts in his liver which they can place a stent in to unclog.  We heard back from the liver specialist in NYC and this is the only visable liver issue right now.  The theory is that if we unclog these ducts, the bilirubin level will lower and everything else will fall into place.  They are going to also place an IVC filter in his vein to block any clots from entering the lungs or heart.  We have also reached out to the CTCA in Philadelphia about traveling up there to do a hyperthermia treatment on his abdomen once we get everything else under control.

Hayden was discharged on Saturday after his sodium and hemoglobin levels came up.  He was getting around pretty well at home.  We scheduled a pre-op appointment for today and were here to do that when we were admitted into the hospital again.

You know we always like to start out with the good news — so the good news is that his hemoglobin levels are up and his is not nauseous or in much pain.  The challenge is that his bilirubin, kidney function, White blood cell and Potassium levels have shot up.  He is very lethargic and dehydrated so they decided to admit him for close monitoring in hopes that they can continue with the procedure tomorrow.  Ideally, tomorrow they will unclog his liver without any complications and then his liver, kidney, and other labs will improve.  The white blood cell count rising usually indicates an infection (could even shoot up from a small infection from a cut) , so they are doing cultures to determine the type of infection.

As I am writing this, I pray that the thousands (yes, thousands!) of people who follow this blog will choose to pray for us tonight.   Specifically, we pray that they are able to do the procedure on Hayden’s liver tomorrow without complications and that they are able to get his bilirubin levels down to a normal range.  We are praying for strength, both mentally and physically, and for the guidance of our doctors to help Hayden get on the path to recovery.   And of course, we always pray for complete healing and for the cancer to disappear!

Before I conclude this post, I want to share with you an incredible gift we received from a friend the other day.  I thought this was so amazing and remarkable :


Though Hayden’s mom did not initially plan it that way , the meaning of Hayden’s name is “TWIN : VICTORIOUS”.  It is amazing how much comfort I got from this, especially when victory seems so far away.  Hayden has already lived up to his first name, and I know he will live up to the second.  I believe.





4 thoughts on “Wednesday March 19th

  1. Praying for continued strength for Hayden, praying his procedure tomorrow is successful and that as a result his liver, kidney and labs improve. Prove the infection cause is discovered so he can receive treatment to heal the infection. For heaven sake, he has enough going on, he doesn’t need an infection, too. Praying for complete healing for Hayden, that treatment will finally be successful and the caner disappears.Sending love to Hayden, you and all your family. Enjoy that baby boy … nothing shows the passing of time like a baby. It seems sometimes as if they grow bigger while we are watching! Love, Sherrill

  2. Please know that the love that you all demonstrate for each other is the most wonderful gift you can give Thomas….regardless of the setting or circumstances, that Love will give him not only flexibility, but strength, caring, positive development and more. Prayers are with you all as you face yet another challenge. Let faith and Love sustain you on the successful journey.


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