Much hasnt changed from yesterday. Jane continues to show signs of stability as her medication is weaned (and replaced with other meds). Oh yeah, so heres a funny one…Jane is taking Viagra!!!! I had to laugh when the nurse told me what it was. Oh this girl, experiencing so much at such a young age! LOL!
I had a nice, long discussion with Beverly, the nurse in charge today. I asked her why they havent done surgery and what EXACTLY it is that the Drs are looking for. She said overall they are hoping and waiting for more forward blood flow through the pulmonary artery to the lungs. All the med changes, oxygen adjustments, nutrition changes, etc. are constantly being manipulated to try and increase that flow and allow Jane, on her own, to do this. IF, I repeat, IF that happens then we can try and avoid surgery all together or for a great length of time until she is older. That is why it has been a waiting game. My next question was- how long will we be here? She looked at me sincerely and said probably at least until Easter or longer…and my heart dropped. But then she reminded me that Jane is mine forever, we have a long road ahead of living in the medical world, and we need to do all that we can now. So, I picked my heart back up and decided it was time to prepare myself mentally. She said she hopes I can laugh in her face when she is proven wrong, but we need to be realisitic. The next big question was when can I hold her?? She told me probably next week sometime we can re-evaluate and look into making that happen for me. She realizes how important it is to me to hold her, but as they wean her from her medications she needs to prove her stability. Beverly said that people with heart failure can plummet at anytime so we want to be sure that she candle handle the move before taking the risk.
Daniel and I continue to enjoy each and every moment with her…one day at a time.
***Beverly told us that Jane’s case has been sent to Stanford for a second opinion.
Daniel just changed Jane’s diaper for the first time!!! It was so cute and he was so nervous. Way to go Pops!!!
This was written and sent to me. Please pray this for us. I need it.
Prayer for Siapins
Lord, let your mercy come down from the heavens like rain, and touch Daniel, Elisabeth and Jane. Do not let them continue in this grievous situation, but save them from this. Save them from this tragedy, save them from this misery. Grant them deliverance in this hour. Lord, forgive us of our sins and allow us to shine with your love and your glory. Let us be radiant with joy and gladness. Send your Holy Spirit to strengthen us, lift up our eyes so we do not despair, enliven our souls so we do not fall, bring us up off the ground so that we do not grieve. Send a healing spirit to work on Jane and give her whole being strength and power. Work on all of her organs so they promote her health in all ways. Strengthen her lungs, each little tube and sac, each artery and vein, so they can work more efficiently. Heal her heart, every artery and vein, every flap and chamber, so that it pumps blood properly, and let it be that she does not need the surgery. Lord, you are our healer. Heal Jane’s heart and lungs so they work perfectly. Fortify every cell in her body with your Holy Spirit that she may be rejuvenated. Let your presence be with her completely and let your healing come downs like rays of sunshine to warm her, strengthen her and enliven her. Guide the doctors in all of their thoughts and feelings, through all of their discussions and meetings. Let your wisdom guide them through everything they do for Jane. Give Daniel & Elisabeth an understanding of what needs to be done so they can be in agreement with the doctors and make the correct decisions. Give them an understanding of your plan, so that they turn away fear, and live in hope. Lord, hear them in their grief, guard them with your Holy name, the God of Jacob, the Eternal Creator, the All-Powerful, the Almighty, send them help from your sanctuary, surround them with our people, Zion itself. Send them people to support them and encourage them in this time. Remember all of their prayers, all of their sacrifices, all of their offerings. Give unto them unto their hearts desire, and make their plans succeed. We praise you for the deliverance you give, and we lift up your banner, the name of our God, in front of all people, and we proclaim your power, your might and your glory. Lord save us in this hour.