Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"

Tuesday, September 23, 2008

TPN or No TPN?!?!

So far Caleb is still off his TPN (intravenous nutrition). His blood work since we took the TPN away for the most part looks good. His body is not maintaining his protein level so we will probably need to add a supplement to his diet until he can manage that better. I, for now, am only drawing his blood once a week, unless he is symptomatic then I will draw and check his levels. I still have to flush and change the cap on the IV three times a week but it is definitely better than accessing that thing daily and hooking stuff up to it daily. He still needs that central line for his IVIG (fake immune system) infusions, so we cannot get rid of the line yet.

I talked with Dr. Markert and asked her if Caleb still needs the monthly RSV (bad respiratory infection) shots this winter and she, Brian, and I all agree that he should get it this winter, due to the immunosuppression. He will also be getting his tetanus shot tomorrow. Let's hope he responds to this one better.

Caleb did great this week with his therapy sessions. He is so amazing. He has now figured out how to get up on both his knees and hands, now we are just praying he starts crawling soon! This is unfortunately another delay due to his LONG stay in the hospital but we are amazed by this tough guy daily. He is overweight so we have cut his caloric intake from his formula (as he is still getting all nutrition via his g-tube/feeding tube) until he gets more mobile. Hopefully, he gets more mobile soon, so he can start being more independent and so he can start to burn more calories. We all continue to learn more sign language so that will help with the communication process.

Here is the video I promised a couple posts ago sorry, with a couple newer pics attached. Enjoy! OH a clarification on the gowns, masks, etc.,as people ask why some people are wearing some things and some aren't. Everyone except Brian and I wears a mask. The doctors philosphy is whatever we have been exposed to Caleb has already been exposed to. However, if either of us come down with something new then we would stay somewhere else if really bad or mask if not as bad. All people visiting except for the great grandmas change into clean uncontaminated clothes once they get here so they don't need to gown. Just a clarification as I know it may be confusing when you see the slideshow. Again enjoy! Thanks for checking in on us!

God Bless Caleb!!


Anonymous said...

Good luck with the tetanus shot tomorrow...can't wait to hear about the results!!! Awesome montage!! He is so handsome Sarah...not that I would expect any less of a child that you and Brian created...but wow...he's really a beautiful boy. I hope you have a great evening...love you and miss you guys so much!!!

Chris B said...

Precious, precious pictures! Glad to hear the good news - hope he tolerated the shot well and know that things will continue to improve. Love- Chris B XOXO

Sara said...

So...I'm sitting watching the Steelers v. Ravens game tonight (in Baltimore), and I can't help but wonder...does Caleb have his jersey on? I can still picture Caleb, Grandma,Sarah, and Bryan piled into your tiny room watching the games and cheering to your tiny tv. The other day I heard "Orange Lion, ROARRR", and had many fond memories flood my mind. Love the pictures...Caleb is SO adorable, and such a little boy now!!! Think about you all often, and I can't wait to see more pictures of Caleb as he grows! Many prayers for your family and all my love- Sara, 5100