Info for Visitors and Well Wishers

It is so good to be home! We have been truly blessed! However, the journey continues and there are still many challenges to overcome, by God's grace we will continue to move forward.
We need your help with this as well---there are a few do's and don'ts for friends and visitors.
1) Please do not send flowers-Belinda's immune system has been intentionally confused/shut down, so it won't reject the new organs. Flowers and house plants are not allowed because of bacteria they carry. Belinda can't even water the plants that are already here.
2) Please call before visiting--if you have a cough, cold, or allergies please know we love you but we ask that you stay away.
3) No hugs or physical contact while visiting--with Belinda anyway, I'll take all I can get!! :-)
4) Please do not bring pets, and don't get offended if we don't visit you if you own pets--again her immune system is compromised. Cats and birds are a definite "no contact" animal-even to the extent that if I am working in a home with these I need to undress outside and shower before contacting Belinda.

Lastly--if you really wanted to send flowers, instead may we suggest a donation to Servants in honor of Belinda's recovery. We are truly blessed to be cared for by so many people!

Goodbye Gown

Guess What?????

Finally--Goodbye Gown!!!!

Friday Evening Update

Belinda had a good day today. We both got good rest last night. She finally got relief from her indigestion and food started tasting better today. She was able to drink her required 96 ounces of water, and we walked about 3/4 of a mile total today (not all at the same time).

Her strength and her appetite are coming back!  The medical team is talking about a potential Monday discharge. They want to monitor a few changes they made recently and if everything is stable we are on track to head back to York early next week! ;-)

God is so good!!

Wednesday Morning Update

We both had good rest last night. Pain levels regulated. We are eager for the promise of a new day.

OT started this morning. When the walker arrived she wasn't too happy--when he showed up.... She is thinking "surgery, what surgery" she did a non-stop lap around the entire unit! 

Once again we are blessed by our Amazing God! 

Tuesady night update

Today was a challenging day. The beauty of the red sky after the storm tonight reminds us that God's promises are new everyday. We trust a fresh start tomorrow and a new day. Praying for a good nights rest tonight and the nausea to remain controlled. We are truly blessed!

I think it is Monday...

Monday 6 PM--What an amazing 6 days! Belinda has had some bumps in the road but overall she continues to improve. Today the last of her abdominal drains were pulled, her last neck port was pulled and the catheter is now out. She only has 2 IV ports in her left arm anymore. Walking has been a challenge as she can't get stable on her feet, the doctors are tweaking some blood pressure meds this afternoon to see if they can get this on track. She & I went through training today to prepare us for life with a new liver and kidney. There will be changes we need to make but we are super excited for the possibilities God will open for us through this. Continue to pray--we covet them!

Sunday June 21 Happy Fathers Day

Happy Fathers Day--Today is another amazing day--I am truly blessed! Belinda continues to do great and is getting stronger every day. It is hard to believe she is only 3 days post op and was up and walking this morning! Yesterday when she was a bit frustrated her surgeon reminded her that she had just undergone one of the most invasive surgeries they do at Hopkins. She has about 100 staples in her abdomen, externally, and who knows how many internally. To help her walk this morning was truly a blessing from God! I am amazed at the strength He has given her on this journey. Prayers have truly been answered!

I am going to include a few pictures of the liver being removed, don't look if your not curious. There is one I will not include because I don't have the medical departments permission to use it; however, it really gives perspective to the size of her diseased liver. The person in the OR holding it is not a tiny person. She is holding it in front of her own belly and it stretches the entire way across her abdomen and from her rib cage to her waist. It is clear to see why Belinda was in such discomfort and had digestive challenges. There simply wasn't room for her stomach to do its work.

The picture above is removing the liver from Belinda. Her incision runs from her breastbone down about 6" and then turns left and right about 8", it makes a Mercedes symbol. She has a second incision about 8" long below that and to the right. This was for the kidney transplant.

This is the liver removed. I think Dr. C told me it weighed over 7 pounds, more than double the size it should be. The best I can figure this is about a 2 gallon bucket they have it in. You can see her liver was covered with hundreds if not thousands of cysts.

I was blessed by some scripture a good friend shared with me this morning as I drove home, it truly sums up our journey.
"I waited patiently for the Lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along.  He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the Lord." Ps 40:1-3

If you don't believe in miracles and the power of prayer--call me, we need to have lunch together.

Saturday June 20 Morning Update

What a difference 24 hours makes! God is so good!  We truly cheerish the prayers of everyone that has  been lifting Belinda and our family to God.  He has heard your prayers and continues to answer them.

A dear Brother texted me at 5:30 this morning reminding me of a verse on his heart-Romans 12:12 "Rejoice in hope, be patient in tribulation, be constant in prayer". Be assured God hears our prayer and we rejoice in His hope of healing for Belinda! This morning I am rejoicing with her as she is feeling a great deal better than yesterday and we are eager to get her up and walking today.

Last night we were blessed with a restful evening where we could both sit and talk as we overlooked the beautiful night sky of Baltimore, it was our "date night" and we truly were blessed as we reflected on God's grace and provsion in our lives. Belinda was able to share with me her emotions as she stepped up onto the operating room table. I won't expand on this but will allow her to when she has the strength to post her own post. Be assured it was an amazing time as she was able to proclaim everyone's prayers over the medical team in the room, she said there was a very positive response and they were clearly grateful to have hundreds praying for them.

I need to back up a bit because, in my fatigue, I realize there are gaps in the blog. I was sending lots of texts and did Facebook posts as well, it got confusing and I missed things in various places.  Thursday night Belinda was transferred out of ICU, we rejoiced in the upgrade but it took a toll on Belinda as well. The move was exhausting and the orientation to the new staff wore her out. New meds were introduced and the chemical changes created hallucinations and stress on her body. In the early morning hours her BP elevated, breathing was labored, and her oxygen levels diminished so the team needed to restart her oxygen assistance. On top of this her pain levels, because of the stress, were requiring much more pain meds. It was a long night.

Dr. Cameron stopped in Friday morning. This was definitley God's perfect timing, Kairos Time, as he was able to encourage and affirm Belinda. He explained that the hallucinations are normal because of all of the steroids and the pain meds. He said in fact, at times, they have had to send security into rooms to help restrain patients. I am glad she was only delivering pizza, seeing dogs on the floor, sailing on a boat and other not so scary things. She was frustrated because she couldn't control the situation. He assured her she is days ahead of other double transplant patients. His calming nature and confidence was very reassuring. They adjusted some meds and changed some things around.

Shortly after these changes Belinda's parents arrived with our daughters. We had to cut their visit short because Belinda was again exhausted and not really able to communicate, she clearly needed more rest and the new pain med was going to allow that.

She fianlly slept for 3 hours! By 4 PM the nurses were able to get her out of bed and transferred her to a chair again. She began sipping water and ice chips and her kidney really kicked in and she started passing water again! 

We were able to sit up and talk into the evening and then she slept for several 3 hour periods through the night. This morning when the doctors checked in they are really excited. She will have more tubes removed today, she will be allowed to get washed up and she is encouraged to be up and walking today! We are pumped!

If today goes as anticipated we are hoping to see a few visitors tomorow and in the coming days. People have been asking about cards and flowers. We cannot accept any flowers. The potential for bacterial is too high and Hopkins will not allow them in the rooms and advise us against them in our home. Instead of flowers an email or card to the house would be fine. Thanks everyone, we treasure you joining us on this journey.

Thursday was an incredible day

9:45 PM Thursday- I will try to capture the events of the day today but so much has happened that I may have trouble keeping it straight.  That on top of the fact that I haven't really slept for about 40 hours may give some room for grace as you read this post.

As I mentioned previously I had a call from Dr. C around 2:30 AM and he told me everything went very well. He also told me where to wait for someone to meet me to visit Belinda. Around 4:30 this morning I was allowed into her room. To my surprise she was awake and communicating. The breathing tube had already been removed and she was very stable. She was in a lot of pain but her medical team was always on top of it and helping her to mange it. (We have been very impressed with every staff member we have encountered. Hopkins really excels in excellence when it comes to patient needs.)

I was able to be with Belinda throughout the day and she made great progress all day. At this point of the night I would estimate that she is 24 hours ahead of schedule on her recovery plan! Today about 60% of her supply tubes were removed, I estimate that there were about 30-40 of them initially. She was able to stand up and transfer to a recliner for part of the day, and we are still hopeful that we will leave the ICU unit sometime tonight!

She is still managing a lot of pain and they have warned us that the next 48 hours are critical and may be the toughest. The team is really pleased with her progress. Tonight her BP escalated and for a brief time her kidneys quit making fluid. After a few adjustments the team appears to have her back on track. We also started integrating some of her new anti rejection meds that will be a lifelong journey for her. The next week or so will be a steep learning curve but we are confident we will adjust to our new normal.

Belinda may be ready for some visitors Friday afternoon but we ask that you call before coming and we may need to keep these visits short.  She really needs her rest at this point. We rejoice in all that has transpired on this journey and truly rest in the palm of God's hand.  We are blessed!

The Unveiling of Meg

Conference with Dr. C

At 2:00 AM I had a call from Dr. C with an update on Belinda. He said the surgery went amazingly well! He said she only needed 3 units of blood and her body was very stable. New organs are in and everything seems to be functioning at this point. He said they may even be pulling the intubation tube tonight as well!

Belinda had stated, several times through this, that her only concern was waking with the intubation tube inserted. Even with the medical team's affirmation that she wouldn't be aware of it she was still questioning that this morning.

God--in all His grace--even took care of that concern for her!

God is good! We rejoice and praise Him for His love and care for Belinda.

Please continue to pray for the donor family. We rejoice--and we mourn.

Peace & Blessings to all of our prayer partners. "For where two or three are gathered in my name, there am I among them"....or 200 or more!!

TJ's Ramblings at 1:00 AM

It is now 1:00 AM on Thursday. I sit in a waiting room with 2 other families. It is dark and rainey outside. I look over the lights of the city. A good friend has just left and I am alone to ponder--and be grateful for all that is going on, and for all of my blessings.

My thoughts have gone everywhere in the last 18 hours, and the last 2 years. This journey has been a roller coaster but God has given me a peace that passes understanding. I truly rest in His arms knowing that He loves Belinda more than I can imagine and that He wants the very best for her. I have faith that He will care for her and restore her.

I grieve for the donor family. Someday I hope they realize the impact of the gift they have given to Belinda. Someday I hope we can say thank you to them. I pray that they too will feel the peace of Christ on this journey. I trust God will soften the sting of death as they mourn their loss.

I look over the city, into the darkness, and am reminded of the darkness in our world. Like others in this waiting room, and the city, we deal with crisis points in our lives not knowing what the outcome may be. Some days can look very dark. I have sat here and reflected on this city and prayed for healing for it's residents. I recognize that we don't always have the priveledge of knowing the answers, but I pray there will be peace for everyone. 

I am reminded of a Man who knew the outcom of His journey, knew the pain He was to endure, and still was faithful to carry on. He was willing to give up His freedom so that others could live. His sacrifice provided hope.

In this journey, like all of our journeys, the pain of death must be experienced to recieve life, true life. I am thankful for the one who paid the price so we can have life--and have it abundantly! Tonight I mourn--and I celebrate. To some this will sound odd. Some day I hope all will understand. I am truly blessed!

New liver in place!

It is 12:01 Thursday morning. I just had an update from the operating room. They said the new liver is in place and they are now starting on the kidney transplant. They said Belinda is doing well. 

We praise God for the gifts and talents of the Surgical Team. We also continue to pray that He will continue to lift the team, energize them, and fill them with His wisdom. God is good!! Proverbs 3:5-6

The donor organs are a match!!!

I just kissed my girl and told her I would see her in a few days. She just went into the OR. Surgery will be about 12 hours and recovery will be another 24 hours or so until she is conscious again. Thanks for the prayers everyone! We praise God for the gifts He has given the surgical Team!

It's Time...Again

 Wednesday June 17, 8:30 AM

OK Team, God is answering prayers again! We just got another call and are headed to Hopkins for Belinda's transplant. As before; Please pray God's peace over the donor's family, we grieve with them over their loss- Pray for the Medical Team, for wisdom and endurance as this will be a very long procedure, pray that Go will guide their hands and hone their skills-Pray for Belinda, that her body will be strong and receptive to the new organs--Pray for Sara, Carly, and I that we stand strong and sense God's presence. Continually praise God as we all journey together. He is good and has provided absolutely everything we have needed! We truly rest in the palm of His hands. Proverbs 3:5-6 has been our foundation; we truly trust in Him.

Movin on up!!

Hello!

I haven't felt compelled to write for the past several months--partially because I didn't have anything new to share & partially because I've been more fatigued & uncomfortable most days so I didn't take time to write.

I recently was asked what I feel that I'm learning through all of this waiting time.  I am learning many things; however, I think I recently figured out the main lesson that God is teaching me.

As far back as I can remember, I have been a daily list maker.  It's not that I have to stick to that list--I'm usually willing to flex.  However, I use it to prioritize & focus myself so I don't ramble through my day.

During a recent message at church, we learned more about trusting God.  I questioned myself about whether I was trusting God enough through this waiting time.  Then it struck me that every day I could write "get new organs" at the top of my to do list, but I can never do anything (other than pray) to achieve that goal.  Only God knows when I'll be able to cross it off my list :)  When we are not in control of something, we need to trust someone else.

As I process this, I'm thinking of goals/desires/dreams that we can have--lose weight, get a new job, start a family, train for a marathon, etc.  Even though God ultimately would be the one who would allow us to achieve that goal (if it's in His will), there are steps that we can take toward it.  This process of waiting has no steps toward it.  After all my initial testing was complete in 2013, there was nothing else that I could do to work toward that goal.  So, God is saying "you have to TRUST ME to take care of this one.  I've got it covered."

It's stirring humbleness and submission and even more trust in me toward the One who is truly in charge.

A few days after processing this message & further releasing it to God, I got a call from my transplant coordinator.  Effective this week, I've been bumped higher on the list.  I imagine that a lot of you are thinking "I thought you were at the top of the list already".  Yes, I was; however, it's changed a little. 

Every 3 months my case is reviewed & a decision is made whether to keep me at the current level of points or grant me more points.  My coordinator said that they applied for more points & that now I'm being moved from a 31 to a 35.  She said this doesn't happen frequently in cases like mine. So, what does 35 points mean?  Previously, the search for possible donors for me were chosen from a local region around Maryland.  Now with a score of 35, they will look in a larger circle for possible donors.

She explained that the reason it is taking so long for me to get another offer for donation is the fact that they have been waiting for the perfect match for me.  Because I'm not the usual case (my liver function is still ok), they have the blessing of holding off until the perfect time.  Most others (about 99%) on the transplant list have failing livers & time is a critical factor for them.  So, they pass over me to give them the organs.  

We talked a little more & then she said "Get Ready!"  That phrase doesn't make my heart flutter as much as before.  I still get a little anxious; but as I mentioned above, there's nothing I can do to get ready--God is doing all of the preparing!

Thanks for joining us on this adventure!

Again--"For I know the plans I have for you," says the Lord.  "They are plans for good and not for disaster, to give you a future and a hope."                                                Jeremiah 29:11 

Belinda & Meg