Right now I feel as though I'm ready for a fight and just waiting to be attacked. Hope is so close to coming home and there are talks of her being discharged on Monday! At the same time, the slightest set back or upset will change that and could delay us for days or weeks or months. I want to trust God completely and believe that He is in ultimate control and will do what is best for our family. Although I know that is true, I want Hope home and fear that His plan may not fit with my own. This causes me to want to tell Him to let me have control for a few days and then I will give it back after I've gotten what I want. I obviously know it doesn't work like that and it's not an option. After 7 long months of living at the Stollery and Alberta Children's Hospital, my patience is completely gone.
I've said it before, but we are truly exhausted. I am more over the hospital and this split lifestyle than ever before. Now that the idea of being home on Monday has been presented, I can't imagine the heartache I will feel if this doesn't happen. I just keep pleading, "God, please do not take this from me. Let us bring our baby home." I have prayed and asked for God's will to be done in the past. I believe that God knows our hearts and the desires within. He knows that I'm over delays, set backs and bad news. I want to come home with Hope on Monday and I'm pleading with God to step in and stop anything that would get in the way of that. I guess I'm hoping that IS His will.
Hope is officially off TPN as of 3 pm today! She is almost at full feeds and should be there completely by morning. I am thrilled to be at this point and so thankful that we will not have to go through the 4-6 week training on Home TPN. That would keep us in hospital for much longer and would also be a great deal of work.
Hope is not doing so well being weaned off the IV Lasix (a diuretic). She is on another diuretic already, but it is given through her NG tube. The Lasix that goes through the NG tube is not as strong and Hope doesn't respond to them as easily. Each time they increase her dose, it causes her potassium to drop and makes other problems for us. Today they started Hope on a third diuretic in an effort to get her to start peeing off the fluid in her body and not hold onto it. Please pray that with these 3 drugs, we can get her body balanced and will not have to continue giving her IV Lasix. If Hope can go all weekend without the IV Lasix, they will pull her PICC line on Monday and send her home!!
Another potential set back is teething. It doesn't seem fair that we have to deal with the regular problems on top of our irregular ones. Hope is breaking another two teeth and is extremely cranky. Today she had a fever, but it was not found when her temperature was taken in a different way. They decided it was a false reading, but warned that a fever will set us back another 3 days or more.
Please join us in pleading for protection over Hope as we work to have her home on Monday. Pray against fevers or infections of any kind. Pray that her little kidneys would do their job and that she would pee and not hold on to all her fluid. Please also ask the Lord to give us peace, as my stomach is constantly churning and I'm stressed out. I can see the end and I'm so close to it, that it feels almost painful to see it in the distance and not know that I'll ever reach it.
I am not under the illusion that Hope will never be hospitalized again. We already have a Varices surgery booked for April 30th. I just pray that going forward we have brief hospital visits that are inconvenient for a time, but not all consuming in our lives. Life isn't fair and there are no guarantees. We choose to love God, not because He gives us good things, but because He first loved us. Saying that and doing it are very different. Loving God when you know He is able to take away all of Hope's pain, and yet doesn't, can be difficult. I know that in eternity with Christ, she will be whole and I have to choose to believe that she will be healed, it simply may not be here on earth. I don't like that, but I have to find peace in that and know that God's ways are greater than my own and one day He'll show me how this painful journey has impacted the kingdom of God. One day we may walk through Heaven and have the opportunity to meet people that are only there because Hope's pain drew them to Christ. For every life that is saved, every tear we have shed through this hellish journey will be worth it. Salvation is the ultimate goal, but it is not always the easiest road.