Monday, February 23, 2009

A Big Step

As I sit on the couch to finally write a more in-depth update about Abbie's surgery and recovery, I sigh and smile at all that has happened in the last few days. As usual, leading up the surgery I didn't realize that I was operating with a large weight on my back, and on my spirit -- my self-awareness is a work in progress. Now that it has been lifted, I can see in hindsight how very stressed I was, and now it feels that I am flying through each day!

This is a picture from my phone of Abbie in the pre-op area (sorry it's a little blurry). Can you tell she was ready for her hole to be closed?? For the first time they let me walk with her all the way into the OR and then talk to her while the anesthesiologist put her to sleep. What a challenging blessing. I was so happy to not have to leave her until the last second, but seeing the OR, the equipment, the staff, the very white walls made what was about to happen to her very, very real.

Dr. T, the ENT did a scope of her throat first to ensure there was not any blockage that would prevent closure of the hole. When I didn't hear anything from the OR for an hour, I knew they'd gone ahead with the surgery. Fortunately, my faithful friend Katie arrived in the cafeteria to wait through yet another surgery with me -- and she brought great food!!

A couple hours passed, and as Abbie moved from the ENT team to the GI/General Surgery team I was thrilled to see her ENT come into the cafeteria carrying photographs of the procedure. As I mentioned, this is a very new technique, so they took pictures to better describe how it's done. Looking at an open wound on my daughter's throat is not something I'd readily do every day, but I was thrilled to see how the closure of a large (3mm by 15mm) hole was done so beautifully.

We met the GI and surgeon in the recovery room, and they, too, had pictures -- again, none that we will frame and place on the piano, but interesting none the less. The endoscope showed some irritation on the esophagus, which we'd expected given her reflux lately. The stomach looked fine -- the area where there may have been an ulcer was caught up into the closure of her previous G-tube site, so we couldn't see anything there. But, then we saw lots of small bumps at the beginning of her small intestine, which the GI biopsied.

I have to admit, at seeing those, I thought, "Sheesh -- I really don't want to deal with abnormal intestinal growths, too. Can we just stick with the current buffet of challenges without adding more to our plate?" The results of the biopsies came in a couple days later, and are within the normal range - so for now we can just remain seated at the table, working through our entree of bone density/hip recovery, and the side portions of respiratory, spasticity, and diet issues.

We stayed in the hospital until Saturday morning, because after the trach surgery, Abbie had two little soft tubes sticking out of the incision, to drain air that may have collected in the area. One was removed on Friday, but the surgeon wanted to wait until Saturday to remove the second. Ray and our nurse, Rae, helped get Abbie settled at home while I went directly to the twins' school for a volunteer shift. I'd had to cancel my last one, so I didn't want to flake out twice in a row. As soon as I arrived home from the school, I changed clothes while Ray patiently paced, and then we headed out the door for Waikiki. We had a black tie event that evening, so he surprised me by booking a room in the hotel hosting the ball.

I felt like an almost-put-together grown-up wearing heels, jewelry AND make-up at the same time. We got to catch up with many good friends. It was especially encouraging to run into people who were completely up to date on Abbie -- one said, "I was in Cancun this week, but was able to check in after is she doing now??" Amazing. Then, Ray and I both got to sleep all night. THAT was the real treat of the event. We came home completely refreshed, all the stress and worry of the week completely washed away.

Abbie is not needing any pain meds now, and slept through the night, satting 98-100 last night. It seems that she's turned the corner pain-wise. She is not hesitant to cough, and is no longer complaining when she does. We made it back to the beach this morning, for the first time since her surgery. God met us with the perfect weather -- we could see Haleakala on Maui, as well as Lanai and Molokai. The air was still, but cool, the mountains were unshrouded and it seemed, for those moments, that all was right in the world.

Thank you for praying our girl through yet another obstacle. Waiting in the pre-op area, I reminded her that she would never be alone, and that many, many people were praying for her. The smile you see on her face above matches the reaction she gave me to that reminder. Bless you all!!

Thursday, February 19, 2009

Abbie is Awesome!

Just got home to take a quick nap while Ray watches over Abbie, but wanted to give a quick update before I head off to sleep.

Abbie did amazingly well through the 3.5 hours of surgery, and even in the recovery room was coughing all the mucous and blood up herself. That allayed my only fear about closing her trach stoma. If she is willing and able to cough so strongly right after surgery, I have no doubt she will be more than able to take care of her airway independently when she is healed. HURRAH!

Her G-tube button was moved more towards the middle of her belly, and is already much more comfortable than her old site.

It seems now that she will be an inpatient until Saturday. But, she is comfortable, and doing well.

Thanks to all of you for your prayers -- they were powerful, and God just HAD to listen. Abbie was grinning in the pre-op area as we changed into the hospital gown. She knew it was time, and had no fear. Thanks to knowing all of you were praying for her, I didn't either.

God is good!

Friday, February 13, 2009

Perfect Timing

So many days when my heart is hurting or my spirit is weary I plead, "Hurry up, Lord...please." Yet, even while the petition is leaving my lips I am reassured that everything is happening at exactly the pace it is supposed to, even when that is to my disappointment.

We got a huge exclamation point to that thought today when we visited Abbie's ENT for her pre-op appointment. I was curious about how the surgeon was going to close a hole that is fairly big. I found out that normally it requires taking a piece of cartilage from the ribs (another incision...ugh), and then using it to fill in while the surgeon pulls both end of the hole together. The normal outcome is that a divot remains in the throat, and, even more importantly, the windpipe is often narrowed during the closure procedure, to allow both ends to meet. This narrowing can lead to respiratory distress either immediately after surgery, or down the line. Ugh again.

But, but, but...God's stopwatch for Abbie was beeping, "right time, right time" today. Finally. After scheduling this procedure four times in the last two years He showed us why we waited. Abbie's surgeon has recently begun using a resorbable material (meaning over time it disappears into the body) to do closure on large trach stomas. As far as she knows she is the first to use this material for this purpose. There are huge benefits for Abbie: no cartilage needed from the rib, no divot left in the neck -- it will be smooth with just a straight scar across it, and her windpipe will not be narrowed. It is likely that Dr. T. will publish an article in a medical journal after Abbie's surgery so that other surgeons could consider using this technique. All of the things that would have concerned me about this surgery vanished in an instant, thanks to the brilliance of Dr. T. I cannot explain how incredibly blessed I feel.

We'll plan on spending 2 days in the hospital (for her trach, not sure what the GI will say yet). So, perhaps at this time next week we'll be home with our ready-to-swim Abbie. I now that she'll be tremendously more comfortable. She cried in her carseat on the way to PT today, because her tummy just hurts so much. We had to lay her down the backseat on the way home. Please pray for her comfort for the next five days. It is stunning to watch one little girl endure so much, and yet smile and press on.

Monday, February 09, 2009

Revolving door

A day full of fruitful phone calls resulted in us being all set for the surgery to close Abbie's tracheostomy stoma and move her G-tube button to a new site. She will be going to the OR at 2:30 pm next Wednesday, Feb. 18. I found it interesting that, this being Abbie's third surgery in four month, she had one on 10/20, 12/19, and now 2/18...I told Ray, "I sure hope nothing happens on 4/17..because obviously we have a little pattern going!" It seems the Recovery Room has a revolving door with Abbie's name on it. Rest assured, next week I am ripping it out and burning it!

Each part of the procedure should take about an hour. I know we'll be spending at least one night in the hospital, but am unsure of the plan after that. Abbie was thrilled when we told her that she won't have a hole in her throat any more, but was apparently hoping that stoma-closure was the Tooth Fairy's side job, because she was extremely upset to hear that this involved another surgery. I tried to reassure her that this time she won't be waking up with huge casts, and that the pain won't be anywhere near hip surgery or broken femurs. Little consolation to a pretty traumatized little girl. Please pray for her to be physically AND emotionally ready for this.

I am not sure how to feel, either. Life, particularly fun things like swimming and going to the beach, will be so much easier without an open stoma. I was so excited to get everything coordinated, but now that the process is complete I find myself in tears with that now too-familiar knot of fear and foreboding in my stomach.

Two things (well, actually one in two different packages) save me.

The first is that Abbie and I have been taking morning walks to the beach. The beauty astounds me afresh each time we visit.

These are some pictures from my phone this morning, all taken from one spot:

Aside from getting some perspective on just how huge God is, being at the beach reveals other lessons as well. Like how the morning sun always glints across the water to land right at our feet. As we walk down the beach it follows us like a spotlight, as if we are the only visitors, the only ones worthy of its attention. I'm sure every person on the beach feels that same way -- as somehow the sun manages to focus on each of us individually. God is like that. Just because another is basking in the glow of His love, or resting in the calm of His protection, does not mean that His eye is off us for one second. We are each the star of the show.

The waves on the shore are small and calm, as bigger waves hit breaks a little ways off the shore. I love hearing the distinct sound of both, and realized I am so grateful that God speaks to us in both tones of voice. When we are young, new in faith, weak, despairing or weary, He is gentle, allowing His love and lessons to lap at the edges of our hearts until we absorb them.

When we are ready, He calls us out to the deep - to the spray blowing from crests of waves as they fight their way down to the sea again, creating the roar that never ceases. I am so glad that He is both gentle and wild, and that these qualities exist on a continuum. Those little lapping waves lead my eye, and my heart, right out to their fierce brethren. I can wade or I can dive in, but either way I find Him.

Abbie loves the beach as much as I do, and the morning light is precious time for us to be together in the unquiet silence.

The second saving grace is just once again finding God in His Word. My favorite teacher, Beth Moore, is taking me on another adventure -- "Believing God" -- boy, is this appropriate timing for this study! One thing that's hit home again is the utter effectiveness of praying God's words right back to Him. So, if you know any scripture that you think would apply to Abbie in the next week or two, may I be so bold as to ask you to pray it over her?

We went to therapy today for the first time since she broke her legs. It went well, and she stood beautifully. It's just hard knowing we are going to have another hurdle before she can really zoom. I am hopeful, though, that once her belly and throat are comfortable, it will be even easier for her.

I feel sometimes lately that we are constantly asking for prayer. As I typed that with a sense of regret, I realized, "We ALL need constant prayer!!" So, I just want to remind you that Abbie does love to pray for people, so please email any requests you may have for us to, and then let us know how things turn out. Almost as much as praying, Abbie loves to hear " the rest of the story."

As this Valentine's Day approaches, please remember, it doesn't matter if you are married or not, engaged or not, in love with another person or not -- there is Someone who is madly in love with you. Trust me, He meets me at the beach every morning.