We are home from the hospital!!! So thankful to be home!
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Hope had a so-so night of sleep, but still much better than the first night post-op! Her pain was a little more than the night before last without the IV Morphine and with needing to get up to the bathroom. But she is quite comfortable in bed and is still moving better on the whole. She had no issues of oxygen levels dropping last night and didn't even need the oxygen mask by her, so that was a huge praise! She just had a really hard time falling asleep and didn't finally conk out until about 1 am, and then was up off and on through out the night. I'm hoping for a GREAT night of sleep at HOME tonight!
Hope's bloating is gone since getting up to the bathroom now! This definitely helps with the discomfort. We even went for a 45 min walk last night to help daddy carry some things down to the vehicle to take home, and to see how she did in the wheelchair, to make sure she could make the 30 min drive home from the hospital in her wheelchair. Then afterwards we stopped on Hope's old unit #4 and visited with the nurses there for a bit, which Hope was excited to do! Another check mark to be able to go home!
This morning we waited for the doctor to come by and let us know if he was good with us going home today. He came around noon and finally gave us the go ahead to start getting ready to go home. . . we were so excited to hear. He actually asked Hope first if she was well enough to go home, which Hope responded to with an enthusiastic, "YES!" They are concerned about the fluid accumulation in her old pump site. It has not grown worse, but it also has not grown any better. He said that he didn't want to keep us though in the hospital for the next week, just to watch her tummy. I quite agreed! So we are to be watching Hope closely for any signs of infection, as that can happen when a large amount of fluid just sits there in a surgical site. If it is not gone in about a week, then we are to call them. This would be our biggest concern too, and request for prayer! It also remains very tender to touch and makes movement painful for Hope. But Hope was able to sit in her wheelchair for an hour while preparing to go and then driving home with a blanket protecting her tummy area. Sitting up can cause a lot of pressure in that area and so is limited still at this time. Standing probably causes the most pain right now though, and so she has been pretty limited in this, although we've tried to sneak in what we can when she is going to the bathroom and such.
I removed the bandages on Hope's two incisions before we left the hospital. She does not like having tape removed but with the help of the adhesive remover at the hospital, I was able to do it without too much pain and Hope was a trooper. The front incision looks great. The back incision, which she has been complaining about hurting more often, does look irritated and swollen, with the stitches being quite tight. It is not infected, but we will need to watch it. I just gave it a good clean and we'll leave it open to air as she tolerates, and hopefully it'll start healing better. The front has dissolvable stitches that you can't even see. But the back I think maybe has regular stitches from the looks of it, and the stitches stick out and catch on fabric and rub and pull, which is also why it is painful for her and looking irritated. So just another area to keep an eye on.
Hope was thrilled to get her IV out this afternoon! Woo hoo. . . free hands! She's already had a bath/shower as soon as we got in the door at home, before her daddy left for the Secret Church event at our church this evening. She looks and feels much better! Now her sissy and I need to get clean! We were laughing that poor daddy came home with three stinky girls!
We were sad to miss the Good Friday service at our church this morning, but we did watch the service online at the hospital this morning and that was the next best thing! It was a blessing, even at the hospital, to be able to worship the Lord and think more on what He has done for us through His death on the cross. Trevor spoke on how Jesus is the only one who could ever pay for our sins because He was perfect. Even though He was tempted in all the same ways that we are tempted, He still did not sin! Jesus is the perfect Lamb of God sacrifice for the debt that we each have, and what a miracle of grace and mercy in our lives because of what He did for us. It was a wonderful opportunity to remember what He has done for us, worship and thank Him for it, and consider how the cross should impact our daily lives (this is the topic of the Secret Church event tonight taught by David Platt. . . I'm sad to miss it!).
Hope was also blessed to have her buddies Isylla and Maddie stop by with their little sister to welcome us home with some supper and some homemade treats. . . she was tickled with their sweet visit! I was reading Hope all the messages that people have left over the last few days and there was even a really fun video message that a sweet family sent from Oregon! Hope was thrilled and wanted to listen to it again to hear the sweet kiddos encouraging her with the verse that her daddy preached on this morning! She thought that was pretty cool! : ) She loved every single message, especially as I explained who many of the people were, where they were from, and some who we have never even met. . . what an encouragement to our little girlie of the many faithful and loving prayer warriors that God has lovingly and sovereignly placed around her to be part of this journey with her! Thank YOU for taking time to bless our girlie, dear ones!
So thank you to each and every one of you, for following our week and Hope's recovery. We had a little home celebration planned but did not have time before Trevor had to leave for Secret Church, by the time we got home from the hospital. So I will share some pictures from this home celebration that we'll wait and do as a family tomorrow!
Until then, I'll close with sharing about a little visit that we had with the pump nurse yesterday. She stopped by to see our family and check in on Hope. We used to see her regularly to have the pump turned up/down, and to have the medicine refilled. So she's been with us since pretty close to the beginning. I wanted to share something that she said. . . I think I've already shared this with you, but it was amazing to hear it coming from her and just reminded us how much God has His hand of grace and healing mercies on Hope and how evident His power to heal is, along with the reminder that God is in control ALWAYS!
Sweet Valerie, the pump nurse, has called Hope their "one of a kind" girl for a long while now. She added yesterday, "We have learned a lot from Hope. We thought that we knew the way it always went for these kids, especially ones with brain injuries as severe as Hope's. But we've learned that healing is a possibility and will now keep that in consideration as we continue to treat these children. We had another child and mother insist that the Baclofen pump needed to be turned down recently, and so we did try it. However, after turning it down, the child became more noticeably stiff and so even they agreed that it was necessary to turn it back up. But Hope got better and now we know that's possible." WITH GOD, ALL THINGS ARE POSSIBLE!!! And our biggest prayer, in all the ways that God has touched Hope's body and mind with healing, is that people would KNOW that God is the One healing her, making the seemingly impossible, possible! Hope is not just lucky, she has not worked hard and made these things happen, we have not found some miracle treatment or even some miracle-working doctor or therapist. . . Hope has experienced God's hand of healing and He deserves ALL the glory and praise for what He has done in her body and mind, according to the plan He has for her life. He has used some wonderful caring people in her journey to accomplish His plans for her. . . even this neuro-surgeon who felt that Hope would ALWAYS need this Baclofen pump was part of God's plan for Hope. God used this brilliant neuro-surgeon and his "hockey puck" to save Hope's life on February 7, 2012. . . I'll never forget that day. . . and then He showed us all that He could do the impossible through the life of a little 11 yr old girl and her "hockey puck," when He again used that very same brilliant neuro-surgeon on April 15, 2014 to take it back out. . . another day I will now never forget! Another day where God took care of another one of Hope's "NEVER's" according to His plan for her life! Amazing! God is amazing!!!
We are going to continue to pray that God would now deal with the next NEVER on Hope's list. . . her scoliosis and upcoming back surgery, most likely this summer. However as we do this, we also trust His sovereign plan for Hope's life and want to submit to His will, and not ours. Please continue to keep this in prayer, along with us. We anticipate more great works of God in Hope's future, and we also anticipate God continuing to grow our trust and obedience to Him as we submit to things we "don't want," like that Baclofen pump so long ago. I'd love to close with this awesome Psalm that reminds us who is deserving of all the praise and glory, especially on this Easter weekend when we celebrate the greatest gift we have ever been given, our Risen Lord and Saviour!!!
Oh sing to the Lord a new song;
sing to the Lord, all the earth!
Sing to the Lord, bless His name;
tell of His salvation from day to day.
Declare His glory among the nations,
His marvelous works among all the peoples!
For great is the Lord, and greatly to be praised;
He is to be feared above all gods.
For all the gods of the peoples are worthless idols,
but the Lord made the heavens.
Splendor and majesty are before him;
strength and beauty are in His sanctuary.
Ascribe to the Lord, O families of the peoples,
ascribe to the Lord glory and strength!
Ascribe to the Lord the glory due His name;
bring an offering, and come into His courts!
Worship the Lord in the splendor of holiness;
tremble before him, all the earth!