Tuesday Update-Day #7

Kaleb went without fever since late afternoon yesterday. His tummy is feeling better and he has eaten small bits today. He is acting better and feels better.

The respiratory tests came back negative. That means no flu, rsv, or any other respiratory virus.
I posted yesterday that on his blood tests, his lymphocytes are low indicating viral infection but his bands came back high indicating a possible bacterial infection in his blood, so they are waiting until the cultures come back in 3-5 days from yesterday's draw.They took blood from the port and hand so we will know if there is infection in his blood or in his port. Meanwhile, we started Vancomycin last night which is a very strong IV that would help if he did have some kind of bacterial infection. He has to take Atarax an hour before the IV dose to prevent allergic reaction and another problem is that this IV can cause toxicity in his kidney's so we have to do levels before and after his 5th dose to make sure it is in the correct range(how his body is metabolizing it). If it is high or low, they adjust and retest the levels again after the 4th or 5th dose. This involves getting blood from Kaleb's peripheral (cannot use port because that is where the meds are going in and it won't give an accurate level) and that means the only good veins left in his hand. He has already had 3 draws in 7 days and he was not happy about this. It will be tomorrow morning at 6:30 am and then again at 9 am. We will do this until the level if right or we find out we don't need to be on it anymore. As soon as we know his blood is ok, we will stop it because of its possibility for toxicity (kidney damage or failure).

We can start having visitors Wednesday so if you want to visit just let me know and we can arrange a good time. Please be sensitive if you have been sick or don't feel well. Kaleb's immune system is fighting the junk in his lungs so he catches other stuff really easily.

Doctor Lee said we will be here through the weekend and will re-evaluate on Monday our time frame. This is because of the setback with tummy and fever and waiting on test results and the new IV. I hope to go home sometime next week which would put us at our 2 week average. Hoping he won't have to be on IV's much longer so he can do basketball. If we have some kind of bacterial infection in port or blood we will have to change our timeline and treatments. So, praying that is not the case.

Kaleb is in good spirits with all the setbacks, tests, and needle sticks. As long as I tell him ahead of time, he can process it. He has a nursing student today and taught him all about taking blood pressure, pulse ox, and IV's. The student seemed surprised Kaleb knew what he was talking about. I heard him talking to his teacher outside about how Kaleb was only 11 and was right. It made me smile.

I am struggling. I know a lot of it is lack of sleep and lack of contact with humans besides medical staff and Kaleb. I am also having a hard time with all the extra stress and pressure this puts on David and Hannah and how they are coping with us all apart.

Hannah is REALLY having a hard time. She is just not herself and little things are upsetting her. She talks to us on the phone and I can hear it in her voice. She asks brother when he will be better and then talk about playing when he gets back. My heart is broken. I feel so torn. I know I need to be here with K, but it isn't fair for Hannah. This all isn't fair. I am afraid she is being permanently damaged by all this. The stress, the emotional heartache. I am crying just typing this. I was not prepared for the impact this would have on her and us dealing with how it impacts her. The things she has had to deal with and process at her young age....no one should have to.

Please continue to pray for our family. For each of our individual struggles. For Kaleb's lungs and no scarring. For my sweet Hannah. For Dave. For us to be together soon. Pray for answers for his blood tests and that he doesn't pick anything else up.

We are also continuing to collect coins, actually Hannah is. She has filled up a huge coffee container and is moving onto the next. You can bring her/us baggies of coins at school or church or let me know and we can arrange to pick it up. It all adds up so every little bit counts AND it really is helping Hannah to feel like she is doing something and she is so proud of this.

TEAM KALEB has raised $4,000 so far!! We have a donation for every day we are here and still looking for one today. You can donate anytime in any amount. NOTHING is too small. Will you be our donor today for Day #7?

http://www.cff.org/Great_Strides/teamkaleb

All of these funds and the coins are for TEAM KALEB Great Strides Walk in May.

Thank you for your support

~Kristi