Home for the Weekend

Annabelle is getting her IV re-taped after becoming loose.



We made it home Friday around 3:00 pm. We are so glad to be home. Annabelle was fussy all evening. She didn't want to eat, play or do much but be held. We gave her some Tylenol and after her evening shot she perked up and laughed. We were relieved to see some joy come back. She has had so many people doing things to her that she is a bit spooked I think. A couple of nurses came this morning to watch us administer the shots. She gets two shots a day through Monday and then we drop to one a day for a week and then every other day for the rest of the year. I can't wait to be done with this already, but the Lord is helping us get through each day.

Her surgery for the central line went well, and other than being in pain she is doing well. Please pray that it doesn't get infected. This port is under her skin in her chest and won't be visible except a for a little bump. Hopefully, this port will be less traumatic than getting an IV for her IVIG infusions and blood draws. The main drawback to a port is that if she gets a fever for any reason we will have to go to the ER to have a blood culture to make sure that the port is not infected. The nurse said that any illness can send bacteria in the blood which love the plastic in the port. This is how the port can get infected. Since the port is a central line running directly to the heart, if it gets infected, it has to be treated immediately.

We will go back to the hospital on Monday for two days. She will receive a blood product called IVIG. She will get these infusions monthly for the next year. These shouldn't have many side effects. The IVIG is basically a bunch of antibodies that will help neutralize her own antibodies and help stop the attack on her brain. Please pray for these to work and that the infusion will go smoothly.

One more thing - While were delayed from leaving by about 3 hours for some unknown reason, we had an opportunity to give Peter's Bible to the 20 something year old next door to us in the hospital. He is on experimental chemo because he is terminal. I was very touched when his mom told me a little about his condition. In that time I was able to write a letter to him (I don't even know his name) and share about Julie Halsey and the hope she had. I also gave him some encouraging words that Denise Harless had given me to meditate on. Please pray for him also. I do not know if he will still be there when we go back on Monday.

One more thing really - a couple of praises here-
- Our insurance approved the very expensive steroid drug Annabelle is on.
- She is sleeping well so far.

Please pray for:
- us as we head back to the hospital on Mon. and Tues. for IVIG and possible side effects.
- Annabelle's fussiness - probably a result of the steroid.
- continued wisdom in her treatment.
- opportunities to show the love of Christ with others.
- protection from germs coming in and out of the hospital
- patience for all of us as we adjust to the lifestyle changes and Annabelle's irritability.