Our Quiverfull - Enigma Boy Strikes Again!

Mar. 5, 2008

Enigma Boy Strikes Again!

We are home - all of us! Noah's cardiology visit went well. His echo and his labs did not show any signs of heart failure - obviously good news. The other labs did not show any reason for his fairly dramatic swelling and puffiness. That isn't such good news because it leaves us not knowing what to do to help.

Because he is so puffy and swollen, there was a perception that his liver was being pushed out of place. It can be felt out of place and since severe edema can push the liver out of place, it was assumed to be the case. Some of his liver labs were slightly abnormal today and a closer look revealed that his liver can be felt out of place because it is enlarged, not because it is being displaced. This is a significant distinction, and the labs/enlarged liver are indicative of liver problems/damage from his TPN. We knew this would happen some day sooner or later. The doctors have been amazed that it hasn't happened sooner, but of course we have been hoping for much later. Liver tolerance to TPN varies widely from person to person and there is no way to tell who will do better and who will do worse, so even now we don't have any sort of idea what this really means for Noah . . . . except that the process of damage has started.

In summary, we have a very puffy looking little guy with an enlarged liver and who obviously just doesn't feel good, but there is nothing concrete that would justify hospitalization. He is going to have some thyroid tests run to see if thyroid problems are causing the swelling and weight gain, but the doctor suspects the tests will be normal and we are just seeing a case of "Noah being Noah." In the meantime, we are very glad to have him safe and sound at home with us!

We cheated a bit on his "house arrest" to take him out to lunch and to run into Babies R Us to pick up some spring clothes for him. He is VERY hard to shop for. He either needs shirts that snap at the crotch or one piece outfits or overalls and shirts - options that will prevent his shirt from riding up and exposing his broviac and g-tube. These are easy to find for little babies, but hard to find for size 18-24 months. Our local department store had some cute seersucker shortalls with shirts and my mom bought him one in each color. We were very tickled to find a few more suitable items in Babies R Us today! Pajamas are particularly difficult. One piece pj's in 18-24 month sizes ZIP, and that doesn't provide a way to run his line in and out. Two piece pj's can ride up and expose his tummy. I finally thought to look on eBay and found some Carter's 2 piece pj's where the shirt snaps to the pants. I don't think they make those in his size anymore (haven't seen them in stores or online expect in smaller sizes) but I was able to get several pair in 18 mo for now and 24 mo to save for later. It is a big relief to know that he has safe clothes to wear but am not not sure what we'll do when he gets bigger. Today at Babies R Us we saw snap-crotch shirts going up into toddler sizes. I don't know if they always carry them that big (never noticed them that big before) or if this is a new thing. I sure hope they continue to carry them.

Thank you so much for all of your prayers for Noah during these rocky couple of days. Please continue to pray with us that if it would be God's will that Noah would turn around or at least stay stable so he can stay home.

Love,
Kate

• Post A Comment! • Send to a Friend!

Comments

Mar. 5, 2008 - Glad to see you at home!

Posted by barrynmissy1972

I'm glad to see Noah at home with everyone. I will continue to keep him in prayer. I will look around here for snap up shirts and snap pjs. Please give Noah a big hug and kiss from us in Indy!