Summary of Data on Joshua

April 5, 2010

I wanted to summarize all that I know and all that I am being told by some of the best doctors in world regarding Joshua.

1)  He has CDH.

What does this mean?  Well, for starters he has a hole in his diaphragm that has allowed one kidney, some intestine and liver to move into the thorax, or chest cavity.  First, this has caused pulmonary hypoplasia.  This is a complicated medical term that means that his lungs are not formed correctly.  Why are his lungs not formed correctly you ask?  Because the organs have compressed both lungs, the right lung being much more severe than the left lung.  Expansion of the lungs is not the problem.  The real problem is that since the lungs were compressed, the lung FUNCTION was severely hampered because the lungs stopped growing small blood vessels that capture the oxygen out of the air (gas transfer).  This has caused something called pulmonary hypertension because the same amount of blood wants to go to the lungs yet there are not enough blood vessels to handle the same amount, thus increasing pressure.  This is the simple concept of hydraulics.  You have a certain mass that wants to move through a big pipe (fully developed lungs) but Joshua has a very small pipe (severely undeveloped lungs about maybe a 4th the capacity of fully developed lungs).  What happens to the small pipe versus the big pipe?  The pressure is much greater in the small pipe plus it causes a backup.  Think of his heart and lungs as a bathtub.  What happens when you turn the faucet on without even closing the drain?  It fills up.  Why?  Because more mass is coming in than going out.  This is what is happening to Joshua’s heart and lungs.  It is already causing his heart to become sicker as we speak.  And to top it off, medicine has not solved how to grow more of these tiny blood vessels in the lungs.  Once the baby is out of the womb, they no longer grow.  So, what does this all mean for Joshua as a whole?  It means that there is no rushing into surgery to fix the diaphragm simply because it will not help the lungs.  This means the amount of pulmonary hypertension will not go down enough to where he will be able to live on his own system.  I asked if there are medicines that could help his hypertension and the cardiologist stated that no amount of medicine could bring it down far enough that he would need to live.  In his report, he states there are, “no good options for Joshua.”

2)  He has AV Canal Defect.

This heart defect is one of the most common, most fixable heart defects that a person can have.  Good news right?  Right!  If this were the only problem Joshua had, he would have about a 98%-99% chance of successfully repairing the heart and living a normal happy life after that.  Sounds great!  Well, in conjunction with the pulmonary hypertension, this surgery is exponentially more difficult to operate on because of how the body is working now versus the major change that will occur after the surgery.  Because of the severe high blood pressure in the lungs, the blood is now being diverted from the right side of the heart directly to the left side simply because the body is now the low pressure side.  Normally, the lungs are the low pressure side so the blood enters the lungs from the right side of the heart with minimal work and then enters the left side of the heart which then pumps much harder to get the blood to the outer extremes of the body.  This is the same concept of the bath tub analogy I used above.  Normally in a full bath tub, the water will go down the drain because it is easy via gravity for the water to enter the drain.  To get the water over the top of the bath tub and onto the floor would take additional pressure via a pump.  It takes a ton more pressure to get the water over the side of the bath tub than for it to go down the drain.  What is happening to Joshua is that getting blood to go to the lungs is like getting water to go over the side of the bath tub.  It is much easier to enter the left side of the heart via the defect than to go to the lungs.  If doctors are to operate on the heart to patch the hole, the blood is now forced to go to the lungs with no reprieve.  This will cause a tremendous increase in pressure to the right side of the heart causing a backup of blood.  This backup causes strain on the heart and causes heart failure.  So, in fixing the heart issue, it really creates another problem which will end Joshua’s life.  This is why the cardiologists from UNM, Cincinnati and Stanford University are all saying that his heart is inoperable.  The surgery, they say would most likely kill him but the heart failure surely would.

3)  Meconium Pseudocyst and Peritonitis.

This very rare (1/35,000 birth occurance rate) problem is caused when the intestine ruptures in utero (in the womb called peritonitis) and the body builds a wall of fluid filled tissue (pseudocyst) around the meconium that seeps into the body.  This is the body’s way of protecting itself.  This is a very serious problem that requires multiple dangerous surgeries to repair.  They have to go in to see how much of the intestine was affected before proceeding further to put a tube in the side and hook it up to the good intestine leading from the stomach.  If he doesn’t have enough intestine, they will end the procedure right there.  If they are able to repair some of it, this will help him be able to eat but he would have a bag on his side that the poo would go into.  Then later, they would try and see if they can hook him back up to the good intestine that connects to the anus so that he will be able to poo normally again.  This is a surgery that will likely cause a baby to have a blood transfusion because they lose a lot of blood in the process as well as making the baby very sick.  Mortality is high with this surgery alone being healthy.  It is a very nasty procedure.

These problems are the 3 main areas of concern.  They affect three of the major systems of the body, the Pulmonary system, the cardiovascular system and the gastrointestinal system.  The doctors would basically fix these systems so he can breathe, eat and pump blood properly.  Any of these surgeries he could easily die from and are extremely painful as you can imagine.  I felt I had to summarize this because the understanding of the severity is, I think, not quite there.  Right now the doctors have him on pain meds constantly so he is sleeping all day and hardly moves at all.  They have tubes down into his stomach and lungs.  They are constantly having to suction out his lungs because of the buildup of thick mucus that restricts his breathing even on the ventilator.  It is not a pretty picture.  Sure he appears to be stable on the outside but there is almost nothing on the inside that is working right.  He is in danger of liver damage because they are having to feed him through IV instead of through the stomach because of the damaged bowel.

I am a believer in a very powerful God that can heal Joshua at any moment.  He has chosen not to heal up until this point and I still pray fervently for this miraculous healing every second of the day.  However, I also am faced with a very serious and devastating decision.  By not making a decision, I am making a decision.  Again, there are at least 3 surgeries to repair 3 major components that every human being needs in order to live.  With his pulmonary hypertension, he is not likely to survive even the first one.  So again I ask, would it be the right thing to go against all the doctors and all their years of experience and say do the surgery?  Would that be the right thing to do so that I can say that I have done everything for Joshua?  Would that justification be for me alone?  A selfish desire to want to take him home or cover myself in the event he would die?  Again, once we proceed with one surgery, we have to do all of them because without just one surgery, it would prove to be pointless suffering if he were to die.

What if you put yourself in Joshua’s place?  What would you want done?  We all have voices to express our wishes but little Joshua does not.  If you knew that you had three very intense surgeries, one that is detrimental to your health (fixing the heart defect), that you knew you had to go through in order to live, would you take the chance of dying on the operating table?  Would you want to spend your last days enjoying your time with those you love instead?  These are the things you have to think about when dealing with something as hard as this.  How far are you willing to go praying for a miracle?  We all know that God is capable.  That is not the issue at hand at all.  What else do we know from scripture?  When we die, believers in Christ will be with him the minute they take their last breath on earth.  We can’t lose sight of the gift Christ gave us when he died on the Cross for mankind’s sin.  Taking all this into consideration, I ask again, what would your choice be?  It isn’t as easy as one would think.  We have to think about what Joshua would want in these circumstances and not what our desires or our justifications would be at this moment.  Obviously, we want Joshua to come home with us.  Obviously, we want to take away all the pain and suffering he already has gone through.  I wish I could take his place or give him my heart and lungs or something and it is frustrating that I cannot.  I have sought every type of human answer and quizzed the doctors on his condition.  There is nothing anyone in the world can do for him.  We must at this time, give him up to God.  We (man) are empty and have nothing to offer him.  I have emptied myself in the research and search for resources that I have done in order to make sure that no avenue is overlooked.  If there was even a glimmer of hope for Joshua, we would jump all over it.  There is nothing left to offer Joshua except to turn him over to God and say he is your child, do with him as You see fit.  I think of many stories in the bible when I think of this situation that I am in.  Some offer redemption for the child, most don’t.  We don’t know the ways of the Lord but they are perfect and holy.  We don’t understand why Joshua is so afflicted and broken.  All we know is that God knitted him in his mother’s womb and He knows the numbers of hairs on his head.  God loves Joshua and will receive him when the time comes.  Please God, give us direction and make it very clear the path that you would have us take with little Joshua.  He is yours now.


13 Responses to “Summary of Data on Joshua”

  1. Jennifer Tenney said

    My heart and mind are with you today! You all are in my prayers constantly!

  2. Reno and Penny Salazar said

    Our prayers continue to go out to God for a miracle for Joshua. In thinking what Joshua would want, we cannot forget one of God’s greatest commandments…to LOVE….just love and love and love on him.

  3. Beth Brown said

    I am so very sorry for you. I know this is the MOST difficult situation/decision you have ever had to make. We have been prayerful that you would know what to do.

    Having said this, I hope that you feel peace in knowing what you are doing is the right choice. I know how much it hurts, and its not going to be an easy road. We have a friend whose baby was born at Cincinatti hospital. They did several surgeries, and in the end were faced with the death of their son. I asked them the other day, if they had to do it over, would they choose to do surgeries. They said that while they were happy that they gave their son every chance they could…it did not help…and they would not do the surgeries over. They felt bad that he was in pain. They would have just spent the time they had with him, and loved him, and not put him through the pain.

    We are here for you. Through every sadness that comes. Feel free to contact us. We will continue to pray for you. We hope you have all the wonderful time that is possible with Joshua.

    We hope you can enjoy these amazing days, with your chosen child. Who is a wonderful gift from God.

    Kyle and Beth Brown

  4. Tracy Meats said

    Praying for your family, for strength and understanding with what lies ahead for you. Cherish every moment you have with your beautiful son. You are great parents who have done everything humanly possible to fix his insides. When the time comes that Joshua is called to heaven, please contact Now I Lay Me Down To Sleep, for they will come in and photograph moments you will have with Joshua, without the tubes and wires and medical intervention. Hold him, cherish him, sing to him and most importantly love him. Surround him with the love you have given him since the day he was conceived.

    My heart is breaking today for your family. (((HUGS))),

  5. Jonna said

    Jeff and Kelli,

    I’m praying for you guys and little Joshua every time I pray, for God’s will, for a miracle and for clear direction.

    Love you guys.

  6. Justin and Jen said

    Praying for you guys.

  7. Jamie said

    Dear Jeff and Kelli,

    My heart absolutely breaks for the decision you are having to make. Joshua does belong to the Lord and as you surrender him to our loving Father in heaven, HE will give you the direction you need. I will continue to pray for you guys…especially little Joshua. The Lord is faithful ALWAYS but especially in these times when we cry out to Him. May the Lord God Almighty give you the peace you need; the quiet in order for you to hear His still, small voice; and His love to surround and comfort you as you seek Him and His will for Baby Joshua’s life.

    God bless you.

    Jamie Hare

  8. Sherry said

    Oh I came across your blog and couldn’t stop reading. Congratulations on your beautiful son.

  9. HShaner said

    Praying for all of you…

  10. Fran Ferard said

    Dear Jeff and Kelli,

    This child is truly loved. Not only by a merciful Heavenly Father, but also by an earthly mother and father who put themselves through the angst, anguish and pain of considering ALL of the angles… even in the face of the, seemingly, worst news. You are beautiful examples of what Christ wants us to be in compassion. You will never be the same again. You walk through the Valley of the Shadow and The Fellowship of Sufferings. The beauty of the minds that GOD, the sovereign GOD gives us, is the ability to be critical thinkers…and then to rest. We cannot know what GOD has for this child. But as you walk in this path of obedience and great faith, know that you are HIS children also. And HE will withhold NO good thing from you. HE knows your frame. HE knows that you are just one boy; and just one girl. And HE is GOD. In every question… rest; and let HIM be GOD. HE WILL bring the answers. Just rest. Don’t be pressured or rushed. HE is GOD. Let HIM speak while you are silent before HIM. HE WILL speak. Be still and KNOW that HE is GOD. Just rest.

    Now the GOD of hope fill you with all joy and peace in believing, that you may abound in hope, through the power of the HOLY GHOST. Romans 15:13

    With the love extended to me by an Almighty Father through times of great suffering, I pray for you all and am your sister in CHRIST,

    Francene Ferard

  11. Dear Jeff and Kelli,

    Am praying for His will, as I know that you are, His peace and specific directions, His wisdom for you and all the medical staff, and His comfort for all of you at this time.

    May you know that He has you in His hands and in His heart. My prayers continue.

    In His dear love,

  12. Dede Hilovsky said

    Dear Jeff and Kelli,

    A dear friend of mine shared your story and has been praying for you and your family fervently. She was right when she said your latest blog glorifies our Lord. My family will pray in agreement with all of our brothers and sisters for God’s miraculous healing and revealing of His plan.

    In His Love,

  13. Linda Mages said

    Dear Jeff and Kelli…

    I love you both and think you are the most loving, caring, patient, tender, gracious, thoughtful, sensitive, intelligent, wise, spiritual, and faithful friends, father, mother, husband, wife, daughter, son, brother, sister, Aunt, Uncle… and believers that I am privileged to know….

    …And thank you for explaining in such detail, exactly what baby Joshua’s conditions are and how they affect his little body… and what effect surgery would have…

    I support your decisions… and know that by putting Joshua Levi into God’s hands is the best way you can love your son… and giving him your love and “comfort care”… you are freeing his little body from the toils of this earth… and allowing, if God calls him home, to go from your arms, into his heavenly father’s arms… and this is how we all love our children anyway… as they are in reality, all in God’s hands… we only think we have control… but God is in control… and we know and believe that the best place any of us can be is in God’s Hands…

    I am so proud of the strength and love and faith you both are showing the world… May God’s LOVE and PEACE softly rain down upon you both and your precious son, Joshua (and baby Matthew too)… and fill your hearts and minds with His Comfort. Amen.

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