Anna is now up to 6 ng (nana grams) of Remodulin and 2 whatever's of cumidin-now she is showing side effects. Most of the time, we think of side effects as being bad; with the Remodulin it is an indication it is working. The side effects are treated and as they subside she will begin to feel better, after feeling better for a while her body will be ready for an increase. The side effect for tonight is a headache, similar to a migrane but not quite as bad. They have given her tylenol and will try tylenol 3 if the headache continues. At this time the plan is still to increase the Remodulin in the morning.
Today we trained on the sterile technique of changing her dressing. Anna got to change the dressing over the catheter-totally a doable thing at home. Stephanie (our trainer) will not be going to GJ tomorrow as anticipated, instead she will be coming next friday to work with Anna and I again on the dressing change. She is however, sending 3 boxes full of supplies (a months worth) home with us. So, I think I will need a Uhaul trailer to get her and her stuff home:)
We miss everyone at home. It has been a very busy, life changing week and now we are anxious to mix it in with normal everyday living. We will return to CU Med Center in 2-3 months at which time they will let us know if the Remodulin is working (but we will probably know before that). They have some oral drugs they can add to the mix, we could switch to the Flolan, and/or they may decide it is time to consider the options of a transplant. But we will cross that bridge in a couple of months.
Tonight is an emotional night for me, I had the first of the "momma bear" reactions. Anna may be 25, but I guess to me she will always be my baby. Seeing her with the headache, hearing the ill-informed nurse say it wasn't a side effect of Remodulin, I almost lost it. But...stubborness prevailed, I got the handbook out and showed him it WAS a side effect (listed as number one) and that he needed to note that. He tried to talk his way out of it, but agreed to call Dr. Bull. So, I'll bob my head and say "Hum, don't mess with me". I'm sure this is the first of many times I will need to be assertive and stand my ground.
Please know that we feel your prayers and love and look forwarding to see each and everyone of you when we return home.
Joyce, I'm glad you can be the "momma bear" and that you stand your ground. You have always been a strong one. Anna, I so sorry that have pain, you both have had way more than your share. I will continue to pray for both of you and hope you will have a good trip home tomorrow. May God bless you and watch closly over you. Please know that prayers and well wishes will continue to flow from South Dakota for you both. Anna did you ask the doctors if they have any strings that they can pull to help with your dissability? Anna it's great that you have a wonderfull Mom who is always carry, loving, and watchfull. I love you, Dad
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