livingwithevan.com | We have a 6 month old!!!

We have a 6 month old!!!

Posted on January 21, 2012 by Sarah 5 Comments

Oh Evy I wish so much that we weren’t spending this day in the hospital. I was so looking forward to having a nice 6-mo picture of you propped up in your chair, smiling away. I am so sorry that you are laying in the hospital, doing better but feeling crummy. Ever since the Hemi-Fontan surgery you have been a completely different little boy. I expected some, but I thought we would have you back by now. You sleep a lot, you puke a lot, you stare off, and you rarely smile. I can’t wait until we get over this hurdle!!

Since being admitted on Thursday and having the chest tube put in there has been a total of 180 mL of fuild that has drained out. Nothing has drained for the last 24 hours. Tonight they will close the drain, take a chest x-ray and pull the chest tube in the morning. They will hold him for at least 48 hours and take another chest x-ray to see if any fluid reaccumulates. If the chest x-ray looks good then we might be able to take him home. We will continue feeding Evan the low fat Enfaport formula for at least 6 weeks to give his pressures time to settle out and his thoracic duct time to heal if it was indeed damaged. We started a new medicine called octreotide. Typically this medication is used to decrease the amount of growth hormone produced in people with acgromegaly (a growth disorder) but in the past several years it has also been used in children with Evan’s condition (chylothorax) to reduce the flow of chyle through the thoracic duct. This medication is only available as an injection so before we leave we’ll need to be trained to give the daily shots. We’re not looking forward to that.

Evan has also been very gassy (he normally is but it seems like a lot more lately) and his belly has become distended at times. He has developed what appears to my untrained eye to be a hernia at his g-tube site but we were told it was just granulation tissue formation. We were also told that maybe the tissue could be because he has a lot of digestive pressures and it is pushing some tissue out. That sounds crazy to me. He is not tolerating his feeds very well which is not surprising. He is very touchy as far as feeding goes and so far every time I change his diaper and lift up his bum (which compresses his abs and squeezes his stomach) he has barfed. Since he is on continuous feed he doesn’t have much in his stomach but it seems like when he is on a roll he will empty out the little bit that is in there. I think he is feeling hungry because he is starting to chew on blankets more (which is what he did a couple weeks ago while on continuous feeds and it wasn’t enough and he would chew on everything in sight) but he is still getting oral morphine so at least it isn’t painful. His rash is also quickly improving thanks to the Magic Butt Cream.

To have some fun for the day I bought Evan balloons for him to watch and they make his room more fun. All it does it remind me of his 1-month birthday celebration and it makes me sad to remind me of the past and feel like we have made zero progress. I brought in some cupcakes to share with the nursing staff and Nana and Papa came by and hung out for a bit. After the chest tube is out it will be much easier to hold him and I am very much looking forward to that. I hope he can get some of his urpyness under control. I think digestively he is uncomfortable and its just not making him feel very good.

We compiled a list of some figures estimating some data concerning Evan’s care. All of them are approximations and many figures do not include his most recent heart surgery nor hospitalization as these claims have yet to be filed. At the very least Evan has had:

2 Open heart surgeries

1 Pacemaker surgery

1 G-tube surgery

1 stroke

1 round of chest compressions

1 heart cath

1 swallow study

1 milk scan

2 Upper GI scans

2 CT scans

24 x-rays

3 ultrasounds