Hope had an ultrasound done on Tuesday this week, and then we followed up with the neuro-surgeon just yesterday afternoon, so here is an update on Miss Hematoma and how our sweet girlie is doing in her recovery from the baclofen pump surgery and the hematoma/infection complications. . .
The ultrasound showed a similar width but a decreased depth to the size of the hematoma on Tuesday. We were very encouraged by that! Up to this point, Hope has continued to improve. The hematoma is smaller in the morning and then seems to swell up as the day progresses, especially when she is up in her wheelchair for longer periods which is most days! Hope's incision was getting more red for a while last week, but it seemed better in the morning and worse in the evening after being up, and so we assumed that it was NOT infection, and rather just the pressure of the hematoma on the incision. The redness has slowly improved especially with the coconut oil and essential oils that a dear friend whipped up for Hope. It also helps soothe the irritating itch and sting as dissolvable stitches continue to work their way up through the incisions on the front and back, often leaving some small open areas! But overall, no signs of infection and decreasing swelling, so we were hopeful as we went to meet the neuro-surgeon yesterday afternoon, that no further treatment would be needed.
And that was exactly what our gracious Heavenly Father allowed! Hope did so well at the appointment that she was filling in answers faster than her mother! Such as answering "Clindamycin" to the nurse's question of what antibiotic she was on! Love it!!! They were impressed, to say the least! The neuro-surgeon assessed Hope's incisions and hematoma. He was concerned at first that her swelling seems to be less in the am and more in the pm, because of the risk of cerebral spinal fluid leaking from the back and following the track of where all the hardware was to the front pocket/hematoma. However a quick assessment made that highly unlikely as Hope has not had severe headaches and nausea and there is no swelling at the back incision which you would expect to find. Hope has continued to have dizziness and vertigo (but not as severe as before) and some bouts of insomnia and nausea, but overall, she is so very much better! She is very tired as her body has been through a lot. She keeps asking to go to bed early but then cannot fall asleep for hours. So you could continue to pray that she would be able to get the rest she needs for her body to fully recover.
As for Miss Hematoma, the neuro-surgeon feels that it is resolved, and if there is still some fluid there, it is serous or clear rather than bleeding continuing. The ultrasound shows evidence of the pocket that the baclofen pump created, starting to seal up or heal around the edges which is great! The swelling that does still appear is likely just soft tissue swelling of that pocket/pump area and from the trauma of surgery and slow healing and so will just take time to resolve. It is still quite tender for Hope, but she is one tough kiddo and did not make a peep while the doctor poked and prodded and pinched her hematoma area! I chuckled later as she told me this and said, "Why didn't you say it hurt, honey?" She said, "Because I didn't want him to know and then feel bad that he was hurting me!" Just love this precious girlie, God has blessed us with!
Soooo, it is official. . . Hope has now been signed off from another doctor's care and another clinic has been removed from the list, as she was first discharged from the hospital being followed by 12 clinics! It is a huge praise! It is an awesome miracle of yet another "NEVER" being dealt with by the Sovereign hand of God who is writing His own story for our Hopey girl's life, and all to His glory! As wonderful as this "good bye" was, it is bittersweet. God has so graciously surrounded us with amazing people that he has used to help us, comfort us, teach us, and sometimes even hurt with us and in that sweet friendships have been formed and deep respect and love for these professionals has grown in our hearts! We have prayed over these dear professionals (nurses and doctors, nurse practitioners, therapists, receptionists, unit clerks, housekeeping services, social workers, and more!). We have lived some of the darkest days of our lives, and some of the most triumphant miracles of God that we have ever seen, all with these individuals by our side. I cannot express in words how dear and very precious they have become to us, even in a professional relationship! So, with tears of gratitude, quick hugs, and a very meager verbal expression of thanks, we said our goodbyes to three more important people who will forever be a part of our dollie girl's journey and life story, but due to the grace and amazing power of God and His ability to heal, will no longer be a routine part of it. So, as Hope put it, "We'll be back to visit!" : ) Praise God for visits instead of appointments!!! : )
And following that, Hope asked to go down to the rehab school she attended at the hospital for about 10 months, to say HI to all her beloved friends there! All the re-connections we have had in the last month with this surgery then re-hospitalization for complications, and follow up appointments, has made me think more about this journey and how God is Sovereign over every single detail and as such, every single person who has been a part of it. . . and there are hundreds. . . even thousands when we include those of you continuing to follow her story and most importantly, to pray for her and our family! Some of the people we saw in the last 6 weeks have not seen Hope since her original hospital stay, 2 years ago, and they were moved to tears to see where she was at today! Some of these people we have disagreed with as we advocated for what we felt was best for our daughter through so many extremely difficult circumstances. The actions of many, literally, saved Hope's life. There are times where decisions made, even with the best intentions, created further difficulties for our daughter. The familiar faces, the new faces, the hugs, the smiles, the tears, the reminiscing old memories, the making of new memories, the hellos and the goodbyes, have all made me think about how amazing our God is! To stop and think about how much runs through His fingers as He holds each of us in the palm of His hands, to stop and think of how every person and circumstance is sovereignly chosen for His good and pleasing will. . . to change lives by the power of the gospel of Jesus Christ, to introduce or grow the created in relationship with the Creator, and to further reveal the wondrous character of God! Every joy and every tear has eternal purpose, and all I can do is sit in awe of the One over it all! At times we made mistakes and learned the hard way, and at times we were rescued through some brilliant thought of diagnosis or treatment. . . but over EVERY SINGLE DETAIL known and unknown, seen and unseen, physical and in the heart, God was over it all! He will take the seeds and harvest far beyond what I will ever know, I just want to praise Him, thank Him, adore Him and worship Him because HE IS OVER IT ALL!!!
In Ephesians 3:7-21, Paul compares his unworthiness with the unsearchable riches of Christ and the sovereignty and power of our God over all things. . .
"Of this gospel I was made a minister according to the gift of God's grace, which was given me by the working of his power. To me, though I am the very least of all the saints, this grace was given, to preach to the Gentiles the unsearchable riches of Christ, and to bring to light for everyone what is the plan of the mystery hidden for ages in God who created all things, so that through the church the manifold wisdom of God might now be made known to the rulers and authorities in the heavenly places. This was according to the eternal purpose that he has realized in Christ Jesus our Lord, in whom we have boldness and access with confidence through our faith in him. So I ask you not to lost heart over what I am suffering for you, which is your glory. For this reason I bow my knees before the Father, from whom every family in heaven and on earth is named, that according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith--that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge that you may be filled with all the fullness of God. Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen."
What an awesome passage to describe the works of our God!!! I was just talking to Trevor and he is going to be preaching on this very topic this Sunday as he continues to preach through the gospel of John! He is preaching through chapter 9 over the next two weeks. Here is the outline for this week. . .
Hope for the Hopeless -- Part 1
1. Sometimes Life is Hard (vs 1-3)
2. But God is Always at Work (vs 4,5)
3. Putting His Power on Display (vs 6, 7a)
4. Manifesting His Marvelous Grace (vs 7b-12)
You can listen to the message online live on Sunday morning at 10:00 am MST, or it will be posted at this same link following the service. . .
Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him."
Please join us in continuing to pray, not only for Hope and her recovery, but also for the many people (us included!) that God desires to do a work in their hearts as her life reflects His sovereignty, power and incredible grace to save both physically in healing and spiritually in salvation through Jesus Christ! And most of all, please join us in worshipping and praising our God who is truly over it all!!!
You are loved, dear ones!!!