Focus

It seems that lately I only have enough in me to write updates.
Today, Liz and I spent seven hours at the hospital's Infusion Center for her monthly transfusion. IVIg runs for about five hours and then she is observed for two hours after that. Last month, she had an issue during the infusion, but today she did really well. Tonight however, she is having a difficult time. Headache, fever and retching...all effects of the IVIG. Remember, IVIg is made up of blood product from many, many donor blood samples; her body is reacting to the foreign blood. Adult recipients have described the effects as feeling like a horrible hangover. I feel horrible for her, especially since she is physically unable to vomit, so she can only retch and not get relief from vomiting. Hopefully the Zofran will kick in very soon and she will be able to rest.

We got yesterday's lab results. We are happy that Liz is handling the TPN and Lipids well. Many times, the Team needs to alter the mix of TPN, as a patient's body needs more or less of a certain thing (sugars, carb, ect.). Also, her liver and kidneys are monitored during the time she is on TPN. Everything looks good after two weeks of it.

Unfortunately, her other blood counts don't look very good. On Sunday, when she had labs drawn at the ER, we knew they came back low and her doctor was hoping that maybe Liz had a diluted blood sample, which could have caused low counts. Yesterday, the home health nurse drew labs and that blood also shows her counts are low. So, Sunday's results were not a fluke, she really does have some of the lowest counts she's had in a while, and certainly it has been a very long time since all three cell lines were this low at the same time. Frustrating! Tomorrow, her Pediatrician will speak to the Hem/Onc doctor and see what they want to do. Sigh.

I am trying to focus on the positives, but it is very discouraging to see her counts like this. Frankly, it makes me nervous.

Since I am trying to stay positive tonight, I will focus in this little guy....

...... who spent the afternoon at CEC with Daddy, for some much needed man time.
My angel of a boy has had some difficulty controlling his temper lately- a result of being bounced

from house to house and having me away for three weeks, I am sure. He has always been such a good little boy, and Walter and I know he just needs a little TLC and routine right now.

Hug your healthy kids tonight.....and keep praying for my Liz, please.