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Friday, January 9, 2015

More Insight

Waiting for pre-op
The girls and I were in the car and driving to Seattle at 5:20 this morning. I was surprised all of us stayed awake for the entire drive. Check in went smoothly and all of the staff were amazing; so adept at letting the patient dictate the pace! Evelyn tried hard to steal the show with her big cheeks, bright eyes, and radiant smile but Anellah's sparkle didn't let Evelyn take over entirely. I was surprised that Evelyn and I were invited right into the Operating Room where Anellah's 30-something surfer anesthesiologist agreed with Anellah that she could stay awake the whole time and cheered her on as she struggled to keep her eyes open while the anesthetic took over.

Evelyn and I left to get some shut-eye for her and breakfast for me. I intended to do a bit of reading and walk out to the car but I had hardly started eating when my pager went off calling me back to the waiting area, the doctor was already done! Her doctor was pleased to have visualized much better findings than had been expected. He treated a few of the varices (bulged vessels) and noted that they were all in the esophagus (which is better than in the stomach). Whereas he went into the procedure considering not if but what type of surgery would be needed in the future, he came out of the procedure with the opinion that surgery may not be necessary! He explained that if other vessels in Anellah's body around her spine, kidneys, and belly button open up to relieve pressure as the ones in the esophagus did that will be the body's way of doing what a surgical stent would do. I questioned the safety of letting this happen and he informed me that it is entirely safe. He also explained that her liver is currently functioning well, it just does not allow blood flow through it very easily but as long as some blood is still flowing through it and the rest of the blood is naturally rerouted around the body Anellah will be safe.

We discussed what may have happened last month and we came to the conclusion that it may have been related to a viral illness. While Anellah was in the hospital in Spokane she became very sick with vomiting and diarrhea which stumped the doctors who did not expect this reaction after the procedure. Today's doctor and I put it together that perhaps she was starting to get sick on Christmas day, this illness irritated the esophagus causing the rupture of the weakened vessel in her esophagus and the bleeding she experienced. The life-threatening side effect distracted us from the fact that she had a virus just like a lot of other people have been getting this winter.

As far as long term outcomes, they are looking much BRIGHTER than they were. She will have another endoscopy (the same procedure she had today) in about one month. The findings of that procedure will determine when she will have another procedure, if they have not returned then surgery may not be necessary because it means her body is accomodating this higher pressure. Although surgery is still a possibility it is not necessarily inevitable and the discussion of transplant has moved to the bottom of the list.

I will see Anellah soon, she is still in recovery and I am hopefully that God's peace is surrounding her so that she feels calm and is not agitated as she normally is when waking up from anesthesia. Thank you so much for your thoughts and prayers. I believe God had His hand on this little girl and perhaps the reason the results today were so different than 13 days ago was because of His healing.

Thursday, January 8, 2015

Quick Update

Tomorrow I will bring Anellah to the hospital for another endoscopy to look at the damage and do more repairs in her esophagus. They will also do a CT scan and some other tests and she will stay overnight. I am hopeful that tomorrow afternoon we will be given some sort of idea regarding the plan for her as it relates to her liver. Please pray that we all sleep well tonight as we need to leave our house at 5:15am and I want Anellah to be well rested.
Proof that Anellah is a super-stellar patient and will sit still for blood draws even though she is a "hard stick"

Be Bright

Last year rather than making a New Year's Resolution I chose one word, the word was "Listen." Throughout the year I tried to focus on that word and it made a difference. I actually listened to strangers rather than just half-heartedly chit-chatting. I listened to my kids and tried to really understand what they were telling me both with their words and actions. I also tried to listen more deeply to what God was telling me. In a way I think I should choose the same word this year since I still have so much room for growth in this area but it really is time for a new emphasis. Perhaps each year I will continue to reflect on past words while adding a new focus.

This year I had been thinking of what word I would choose however then Anellah's school asked each family to choose a word and the school made a display with all the various words chosen by families. As a family, we chose the word "Bright." Matthew 5:14 tells Christians that we are "the light of the world" and sadly not all Christians act as such a light but this year our family chooses to brighten our light for all to see. This year we seek to "shine light stars" in a "crooked and depraved generation" (Philippians 2:15).

What a beautiful word for Anellah, she is such a dazzling light to those around her from the clothes she chooses to her smile that lights up the room. I also feel like every time Evelyn smiles it is so genuine and pure everything is more sparkly and everyone who sees her face light up can't help but smile themselves. And Capper, his ENERGY just fills the room! The amazing thing about Capper is that although he is just shy of 3 years old he already has an impressive ability to see a need and help! This means anything from running into the room with a baby toy when he hears Evelyn fussing to holding a door for someone whose hands are full, to curling up beside Anellah when she is pouting and gently saying, "What happen 'nellah? What's wrong? Are you sad?" I am blown away by these daily gestures.

Being a light is something I have been thinking about for myself too. How can God most use me? How can I make my light shine brighter? How can I share this light with others? I have some thoughts but I need to mull over them a bit more before I am able to type them out. I am also excited to see what God teaches me about being BRIGHT and illuminating the world around me.

I think this radiant journey has already begun as I struggled from a point of discouragement and disappointment when Anellah was unexpectedly hospitalized after Christmas and we were suddenly faced with the "next step" in her liver's deterioration to a place of acceptance. There will be many times when I am faced with the struggles that Anellah has to go through due to her medical issues and I am sure I will often meet them with sadness. I will not deny myself the opportunity to grieve by ignoring the feelings; by "just trying to move on;" or by "trying to stay positive." So there will be days that I feel sad but even in the disappointment I think God can make my brightness shine through. Who knows perhaps he will bring new people into my life to share their light with me on the days when mine is but a dim flicker and I need some help to see.