Saturday, June 21, 2014

Halo in the Home


Things have settled down into a new normal now after being home a week from the hospital. Besides some few post-surgery areas that have needed tending to, the halo and vest have proved to be both a challenge and easier than expected. Nights are still our most challenging times, which makes the days a little harder, but I can say that grace has abounded so that we are all doing quite well. Please read to the end so you don't miss an important medical update!

How we both felt on the way home.
We had a sweet welcome home by brothers and Dad on Saturday (6/14) and have really appreciated the wheelchair for getting Henry around the house. The halo is definitely awkward, so I have to be careful not to get hit by it when moving or hugging him. Henry's pain has decreased tremendously and he made it through last night without any medicine whatsoever for the first time. Last night was also big progress as he slept in his own bed in his own room. The previous weeknights, he had been sleeping in his bed at the foot of our bed so that we could quickly tend to him and not keep waking up his brother. But, we started to notice that perhaps Henry was taking advantage of our nearness with unnecessary noises for attention and keeping us up way too much, so we decided to try the move. It went so much better for all of us. Henry cannot turn himself so needs moving periodically during the night when he gets uncomfortable, and occasionally loses a sheet or blanket and needs those pulled back up. I can't imagine not being able to move or reach things. He is adjusting and accepting this halo and vest more each day, and though he can go overboard or be demanding, we are glad he has no problem telling us what he's feeling or needing. How much harder it would be if more guessing was involved.

There are little adjustments that we have had to make for Henry's comfort and our ease of caring for him, like keeping the rooms cooled as much as possible, adjusting the heights of things, and being creative during bath time. A portable A/C was given to us and we need someone to come put it in for us, but praise the Lord, it has been pretty cool outside and we haven't needed it yet. Henry was frustrated the first few days as he realized how little he could do that he did before, but he is now understanding better that that will all return when the halo and vest come off. We are finding new and definitely more interactive things for him to do, and we are watching the countdown calendar. Henry is seeing how quickly the weeks go by and is already talking about what he wants to do when the equipment comes off. However, he does think he looks kind of cool, like an astronaut or firefighter with their gear on:). 


We have a fun list of "To Do's" and have already gotten out a couple times this last week. We had a special celebrative dinner on Monday for Father's Day, my 40th birthday, Henry being home, and for the last day of school. We do get a lot of stares when we're out but we know the halo and vest are as foreign to most people as they were to us, so we don't mind. We talk about how interesting surgery and this equipment must be to people and that we can help them learn more about them. Henry kind of tires easily but is definitely increasing in stamina, and he is definitely back to his normal chatty, curious self. When he is not talking away, he is usually pretty tired so we know it's time to rest. We also have a wonderful family reunion trip planned for July, and Henry is especially excited about riding an airplane again and meeting a lot of his family. Everyone is sure excited to meet him! 

MEDICAL NEWS
During our hospital stay, the doctor mentioned that Henry diagnosis is now Metatropic Dysplasia instead of SED. This is a very rare form of dwarfism with specific joint and spine challenges that can affect breathing, the brain, and many areas along the way. Less than 100 known cases currently exist but the information available is helpful. An easy-to-read description can be found HERE.

We have a follow-up visit at Shriner's on Thursday, 6/26, to check the incisions and change bandages. Around six weeks, we will return for an x-ray to check how the fusion is healing and then know better when the halo and vest will be removed. Please continue to pray for our adjustment and Henry's care at home during this time, especially for his healing, and for the doctor's wisdom going forward. No doubt we have many surgeries and challenges ahead, but continue to trust the Lord for day-to-day grace. Please also pray for our family as we seek the Lord concerning the future, any changes we need to make to better care for the changing needs of our family. From the small details to the large picture, everything is different now and requires evaluation and adjustment. Henry is such a joy in the midst of it all and I cannot tell you how much our lives have changed for the better because of him. We are ALL blessed! Thank you all for journeying with us! Blessings.

Friday, June 13, 2014

The Great Physician

I've labeled this post "The Great Physician," because God has truly been holding and healing our precious son. The last two days have seen great progress already and it looks like we are headed home tomorrow. We can't thank everyone enough for lifting us up in prayer. The outpouring of love and support has been overwhelming. So, thank you with all our hearts!

A quick update before I sleep while Henry sleeps...Henry is now off of all IV fluid and meds, has passed two stools, has kept some food and oral meds down, has regained his color and some of his personality, and rarely complains of pain. We have had some fun in the play rooms and he is really benefiting from his little wheelchair that we get to take home. Though he has moments of panic or fear or annoyance at the halo and vest, he is growing used to it more each day, as am I. It is quite bulky and awkward, heavy but not too much, and hard...so as I learn to lift, hold, and transfer him in it, I have to be careful for both of us. I may have to see the chiropractor a little more frequently:).

While Henry has made great and quick gains already, he also continues to struggle with nausea causing vomit, swelling from his waist down, and pain here and there. They were going to release us this evening but his throwing up was especially cause for staying another night. Hopefully medicine will get him settled and home tomorrow, but whatever is best for him is what we certainly want.

It has been an amazing thing to experience this week- God's sufficient grace through it all. And though it has been really hard for me to watch Henry go through this, I can't help but think of all he has gone through in his short life so far: abandonment the day of his birth, three years of life in a Chinese gov't orphanage, transfer and 1+ year in a private (wonderful) foster home in another China city, all the challenges and treatments for his special needs, adoption by strangers, moving to a whole new country, the process of adjustment to countless changes and attachment to a family, and now major surgery which he knew about but didn't really know what it would mean. All before his fifth birthday. This child is dearly loved and truly being held in the hands of His Creator, the Great Physician.  He represents countless children around the world who endure so much yet are not forgotten or forsaken by the One who calls them by name to Himself.

Someone once said that it is not only important to love much but to love well. I love this little boy more than I can say, and my heart has felt ripped out at least a few times this week, but what I am really coming to grasp is that I need to learn better how to love him well.  No doubt this will be a lifetime endeavor and the needs are great, but I find a great source of strength and hope in knowing our Father in heaven has already shown the way and will provide all that is needed. And His love is absolutely enough.

We are not only going to make it, we are going to make the best of it. And surely our great God will shine through our cracks as He makes beauty out of ashes, turning sorrow into joy. Our verse this week? "The joy of the Lord is your strength" Nehemiah 8:10. And, yes, it is available to all of us! Blessings!

Wednesday, June 11, 2014

On the Mend

Day two has already seen great improvement for Henry. The night was rough for he and Daddy as the nurse came in every two hours which woke them up. At one point, Henry cried for me, and then at 4 a.m., was wide awake so they read and talked, etc. After some more sleep, the doctors made rounds and then Henry threw up his apple juice. He has had a bit of nausea from the meds but actually kept down a bit of popsicle and four saltine crackers a little while ago. His catheter has been removed and he is now doing well in diapers.  He is much better concerning pain and the reality of the halo; is alert, talking and playing more; and wants to take another wagon ride today. He has a reputation of being so cute and polite...even in post-surgery, he's a charmer:).

I crashed in the guestroom last night and woke up around 6 a.m. feeling rested...praise the Lord! After breakfast, I stayed with Henry and Randy went to the guestroom to rest. It is lunchtime now and I am having a last break before he leaves this afternoon. Henry is being so well monitored and cared for by all here. We are really thankful for such a great place and staff.

I am really thankful for the strength and grace God provides, and for His presence with us in all the highs and lows. He has beautiful purpose and meaning in it all, and it's beyond precious to see Henry begin to really see and experience these things. That makes it all worth it. Blessings!

Tuesday, June 10, 2014

Henry's First Surgery - Update


Henry's surgery has begun! We had a nice evening last night and a decent night's rest. I got him up and washed early this morning, then registered at 5:30. He was in good spirits as we played, sang, and prayed together in his room waiting for anesthesia. Once they gave him a little medicine to relax him and he got a little loopy, they took him on to the surgery area. Randy and I have eaten breakfast here in the cafeteria with a pastor friend who came to support us this morning. I will post updates here on this particular blog entry as we get them, about every hour or so. Henry will be in the operating room for 4+ hours. Thanks for prayers!


UPDATE: The surgery went as smoothly as it could have gone and after five hours, we were able to go in to see Henry. He was waking, breathing, and responding as needed so was not taken to ICU at OHSU for the night. This was a really good sign. However, he also woke up in a panic and in pain so I laid with him in recovery as he cried and cried until the pain med was sufficient. It was heart wrenching to say the least. Once all was stabilized, he and I were wheeled to his inpatient room where he has slept most of the day. He has started watching a couple videos but soon fell asleep. He also had a little wagon ride around the unit while his bedsheets were changed, but slept most of that as well. He has cried a few more times, complaining about the vest being too tight and hot, and about certain areas itching or hurting, but otherwise, has done amazingly well considering all he has gone through today.


The Shriner's staff has been wonderful, and the quiet, personal attention has been so helpful. We are very thankful for God's provision and for His strength today. Thanks again for prayers! We expect tomorrow to be a better day.


Friday, June 6, 2014

Surgery A' Comin'

Things are about to get really busy in preparation for surgery so this will be my last update before the big day. Henry and I head to Shriner's on Monday, with Randy to join us later that day and getting the brothers settled after school. Check-in time is Tuesday morning at 5:30 a.m. following Henry's bath with a special soap. We had a very good pre-op visit at Shriner's on Wednesday with one of the surgeons, a nurse, anesthesiologist, and physical therapist. I got some questions answered and they got the information they needed to provide the best care for Henry. More details to follow.

But first, we had a good six-month post adoption visit with our home study social worker on Tuesday. We were encouraged to hear that it being only six months, Henry is doing amazing in so many ways and receiving what he needs to thrive. Even with our challenging times and days, we are well on the road to being an attached family. We have adjustments to make to further his sense of stability and security, as well as, to address some of his behaviors. I have been reading "The Connected Child" by Purvis, Cross, & Sunshine, as well as, "The Spiritual Art of Raising Children with Disabilities" by Kathleen Bolduc. These are proving to be just what we need to help both him and us through the challenges of the adoption and special needs journeys. God is good!

Yesterday was really special as I got to attend Henry's last day of preschool with him and see him perform in their program. He sure loves to sing and participated so well in everything. We are so thankful for the love and care he has received in the classroom. Henry will be going to the 4-5 year old preschool class for four days a week next year.

 The highlight of our trip to Shriner's on Wednesday was Henry's first test drive on a motorized scooter. He was so excited and already asking how fast it would go. He did really well maneuvering the joystick, with only a few crashes:). I wasn't sure what the scooter would look like, but it is not small at all as you can see by the photos. The current plan is to borrow one to begin school with in the fall, after Henry's halo and vest are removed and he has practiced a bit more. At that time, a customized scooter will be ordered for him and take time to come in, but eventually he will have his very own. The goals are to encourage Henry's independence, increase mobility, move him from looking like a toddler in a stroller to a five-year old with much more capability, and ultimately, to increase his confidence and opportunities. He will still be encouraged to walk and move his body as much as he is able, but this will be a great asset to his life, especially when out and about. There are a number of other details to work out, however, especially in transporting the scooter. We will have to obtain a foldable ramp and secure it for the van. This is a few months away so right now, we are focused on getting through our family's first big surgery!

Some of the things we know about the surgery are that while everything will occur at Shriner's, there is the possibility that he will spend at least one night following surgery at Doernbecher Children's Hospital's ICU for close monitoring of his neurological responses. He will most likely be released to come home Friday or Saturday. Randy will be with us for a couple days, then return to the boys and work. I will be on my own after that, so I especially ask your prayers for my stamina. I will have my own bed in Henry's room but probably have a lot of sleep interruptions as people come in and out to care for Henry. No doubt we will be exhausted when we return home, but until then, we will make the best of it and God will see us through. I just have no idea what it looks like!

Other than that, what I know is that Henry will have bone extracted from his lower back to be used in the fusion at his neck. They are not fusing to the skull but this is still a high-risk procedure. It could take or not take, he could lose a significant amount of blood and need transfusion, he could have intubation difficulties or negative reactions to medications, and/or there could be damage to pressure points. I don't understand it all but I do have total trust in the Lord and confidence in this surgery team. They do know what they are doing and have experience with his condition and the surgeries it requires. 

At some point, Randy and I will receive training on how to care for Henry in his halo and vest upon returning home. It might sound silly, but one of the things I think about is how his beautiful, smooth baby skin is now going to have incisions and then scars. The halo pinpoints at the skull will need special care each day, and Henry will not be able to have a full bath or shower while wearing these things. I am also concerned about the heat of the summer and how hot our house gets. Anyway, one day at a time so we'll cross these bridges when we get there.

I guess I should wind this up with specific prayer requests. We can't thank you enough for remembering us in prayer and encouragement. 
  • Surgery on June 10th @ Shriner's in Portland
  • Peace and trust throughout the process, especially for Henry as he becomes more anxious
  • Our stamina, health, and rest during the hospital stay
  • Our other two sons during the week
  • Clear directions and memory of post-surgery care
  • Adjustments upon returning home
  • Our wisdom as to summer activities and that we would still have a nice summer break
  • Quick healing for Henry and that the fusion would "take"
  • Details to come together for a motorized scooter for Henry
  • Some sense of normalcy for all of us in all these changes!
We are so blessed with this little guy and willing to go through whatever is needed to love and care for him. The Lord has gone way beyond what we each deserve to care for us, allowing His own Son to suffer and die in our place, so it is our privilege to keep discovering and growing in this great love as we care for our son, no matter what the cost. I know that I always feel that I receive more than I give, and we can truly never outgive God! Praise God from Whom all blessings flow. God's love and blessings to each of you!