Well the second part of the Duke Conference Call happened yesterday. We reviewed the consent papers and understand all the procedures, medicines, etc. that will be used. The papers will actually be signed once Caleb, my mom, and I arrive at Duke.
Unfortunately, Caleb's 4th central line worked it's way out yesterday. Therefore, they put another line, broviac, in lastnight that is a deeper and hopefully a more permanent line. This line allows the tissues to grow around the line to hold the line in better. This is also the line Dr. Markert wanted for when he is sent to Duke. Now, lets just pray that there are no line infections. He was uncomfortable lastnight and very dehydrated because he did not have any IV for several hours before the line placement, as he has no veins left for even a temporary peripheral line. So he had many boluses (larger quick amounts) of fluid lastnight to rehydrate him. In addition, he was given Tylenol and Dilaudid to help with the pain.
This morning he is still thirsty but needs lasix so he does not have fluid overload on his heart. In regards to his heart his hemoglobin levels have to be a little higher than normal to prevent his little heart from working a little too hard. He has already had two transfusions and they are ordering one for today. The good news is that Brian and I are a match to Caleb's blood type so we can donate. However, since he has the immune deficiency there are many viruses that people can carry that pose no risk to people with good immune systems. So the blood he gets is radiated and checked and double checked. There is one virus that 70% of the population carries that cannot be removed by radiation so all donated blood is checked for this virus, CMV. This virus can also pose risk at the success of the transplant so the blood he gets is very thoroughly examined.
These are the only updates I have at this time. As soon as I get more I will post them.
5 comments:
Thank you for the update...keeping you in my thoughts.
Amy and Max
keeping u in ;the hole of my c harge brain LOL well if that didnt make sence its this way i think of many chargers every day and ull b another one and asfor cvls ive had numerous probs witht hem to no veins and such
Hello my name is Crystal and my daughter Eva has CHARGE, Amy and Max told us about you and just wanted to let you know you are all in our thoughts and prayers.
Crystal and Eva
www.babysites.com/sites/crystalm1476/
Dear Sarah- I learned of your blog from a post Amy placed on the CHARGE list. Your son is gorgeous :o) And very smart looking too! Your blog is amazing - how you balance the medical information with your concerns about your son are amazing. Already you could provide great support - and you aren't quite through the thickest part of the forest yet yourself. I wish the beginning wasn't so complicated and difficult. Our symptoms were similar - and different. We did not have the thymus issue - which seems so complicated and all new to me. It does get so much better after the health issues are stabilized. I remember when our son was little my day was in twenty minute increments for years. Now our son with CHARGE is 17, accepted into two colleges, and tube feeds himself for all his meals. I can't believe it myself. There is part of me that still feels he is so little and frail. I wish you, your son and your family all the best - know we are rooting for you- Yuka and family
p.s. I was horrified that you were fired on a voicemail after being told to go take care of your family! I am sooooo sorry! That is just horrible to the third degree! More awesomeness to you to take it with such a healthy attitude. You are awesome!
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