Lemons and Lemonade

I am sure you have all heard the phrase...
"When life throws you lemons, make Lemonade."  We are DONE with the lemonade at this point.

Needless to say, William has had more lemons thrown his direction in the past week.  Will was admitted to the hospital on July 5th and has remained here since.  Initially, he was to have a cardiac cath and stay 24 hours.  But, the cath was a no go.  And, he was showing some signs of worsening respiratory distress as a result of pulmonary edema.  The site of previous surgery is TOO small and he is holding too much in his lungs rather than pumping it through his body.  Think of a funnel--the initial surgery of his heart attached the confluence of his pulmonary veins to his left atrium.  Where the attachment was made is acting kind of like a funnel rather than a canal--small opening creating backflow into the confluence and pulmonary veins and back into his lungs.

Since they could not access any vessel with his previous cath attempt, a decision was made to proceed with a different method.  This is called a transhepatic cardiac cath.  In essence, the isolated a hepatic vein in the liver and then proceed to thread the cath to the heart through the major vessels.  Twenty minutes before the procedure when we were signing consent, the cardiologist tells us that they only perform 2-3 of these each year at Children's Mercy.  This is because it is so rare that they cannot access a femoral or jugular vein.  LEMON!!!  This past week, he had a transhepatic cath with an attempt at balloon angioplasty.  But, here comes another lemon..they were able to achieve access through the liver but could not get into his repaired defect with a balloon.  So, they got pictures but not complete pics and were not able to give him any relief by dilating the surgical site or any pulmonary veins.  The biggest risk of a cardiac cath thru the liver is bleeding....and (additional lemon) William developed bleeding during the procedure requiring a second blood transfusion (the first one of the day was at the beginning of his cath due to severe anemia).  Bleeding was controlled but addional fluid is not the best for his already wet lungs! After the procedure, he was admitted to the PICU and has been here since! 

Love from the daddy after surgery!

On the first night in the PICU, I slept on the "couch" in his room and Chris slept in the PICU waiting room chairs.  It is debatable who had the worst sleeping arrangments....comfort is lacking in this 5 Star Resort!!!  In the middle of the night, I was woken up by a resident asking for my signature for a blood transfusion as William's blood counts had dropped from 10 to 6.  So, LEMON!!  He was given yet another unit of blood.  This only complicated his already wet lungs....but, what else could you do?  After this bleeding, his blood counts are stable and the bleeding was controlled without any intervention in the liver...THANK GOD! 

But, now, we are playing catch up with his pulmonary edema--his lungs are so wet!  And, because they are so wet, his heart is working that much harder.  He is throwing extra beats and needing more meds to diurese (pull the fluid off his lungs).  So, LEMONS keep falling from the sky for Prince William and his parents.  He remains in ICU on the ventilator. 

After surgery.

His precious feet---and his Priceless tag (and his blood bank band)

See his puffy little self--can't hardly open those eyes...BUT, look at his pretty scar from his last surgery.  Doesn't it look great?

It is so hard to see your baby who you finally had time to bond with unable to respond or interact with you.  We get rare peeps with the eyes--but his little face is so puffy that he can barely open them!  Last week, Chris and I had our first out right giggles from Will..and now we wait for them to return.  In fact, last week, one of his nurses on the floor let me have more floor time with him rather than hook him up to meds and feeds because William was so happy!  Heartbreaking to see him in the bed with the ET tube in place!  But, we are making LEMONADE--and dancing a jig because he is finally peeing all the extra fluid out!  So, maybe our LEMONADE is coming soon!  We want him better when they extubate, but it is so hard being back in ICU after being at home and on the floor where we could interact with him and where visitors could see him (and visit us!).

The giggles during our playtime on the floor!!

Definitely looks the part of an Irish baby, huh??