Friday, January 30, 2009

Tummy Troubles

We met our new, wonderful Gastroenterologist on Wednesday afternoon. He spent a lot of time with us, listened well, and came to two reasonable conclusions. I was so relieved that an infection wasn't one of them!

Problem #1 is that it seems that the pain meds Abbie needed after she fractured her femurs (much more than she needed after hip surgery) slowed down the rate at which her stomach empties. This allowed for a build up of acid, which appears to have really targeted the irritated area inside her stomach where the balloon that keeps the G-tube button in places rests. It is also giving her reflux at this point which explains the extra secretions, the vomiting at the end of meals, and why she can't tolerate her usual feeding volumes or rate. He started her on 3 months of Prevacid to give the ulcers a chance to heal and deal with the reflux. I am not fond of acid-blockers because they hamper nutrient uptake, but in this case we don't really have a choice. I did confirm with him that this is a short-term option. After her dose this morning, her muscle tone just about disappeared. She was so relaxed on my lap in the rocking chair that I didn't want to move, ever. So, it seems the acid, the ulcers and the reflux have been greatly increasing her muscle tone lately.

Problem #2 is that, as she has grown, her G-tube button has ended up right under her ribs. You really can't touch her button without feeling ribs. This means it is likely that the stomach lining is getting rubbed between her ribs and the balloon each time she breathes, move, coughs etc. It is worse when she sits up, which explains why she cannot tolerate sitting at more than a 45 degree angle, and even that is difficult after a while. What a conundrum. People with reflux need to eat sitting straight up, but her button pain prevents this...leading to worse effects from the reflux. The button has to be surgically moved. Ugh. Can I just admit that I am REALLY weary of seeing the OR recovery room, and of having to put Abbie under anesthesia.

We decided to try another type of G-tube button in her tummy to see if that would buy us enough time to coordinate this surgery with the trach closure surgery I was planning on scheduling later ,in the Spring, thinking that her ENT would not close the stoma during the winter.

Abbie was in so much pain last night, I called the ENT's office to schedule "sooner rather than later", thinking it would mean March. Iwas shocked when her nurse said, "Oh! I have a hole in next Friday's OR schedule. Let me see if I can get the GI and surgeon coordinated for that time as well." Ummmmm - hold on, let me gather myself. Back to the OR in a week? Another groan. But, it would be great to get our girl through this and out the other side.

I am still waiting to see if the docs can work their schedules out for 2/6, but if not it seems that we will certainly do it sometime in Feb. Would you please pray for Abbie's comfort until then? She didn't tolerate her first feeding, and then couldn't even keep water down when she was in the stroller for her appointment.

On the very bright side: we saw her orthopedic surgeon today and he was pleased with the Xrays, saying her bone strength is sufficient to start standing and going to PT again. I put her in the stander tonight, just to see how she'd do. She stood for 10 minutes, which was longer than I'd expected, and she stood at a higher angle than I thought she'd tolerate. She was VERY relieved and happy to be standing. Many smiles. Afterward, she fell into a peaceful and contented sleep, even with four noisy brothers in her room.

I think that what I see as mountains or hurdles, Abbie just sees as "the next thing" and is willing and anxious to get on with it. She humbles me.

Monday, January 26, 2009

Saying it out loud

I have to admit...I dragged myself to the computer to blog today. Nothing is dramatically wrong, but sometimes it's harder when things are just a little bit off, only slightly "not right." That's where it seem we are with our sweet girl. She still gives smiles by the buckets, is enjoying reading, painting, and her movies, but is just not herself.

I think it has to do with her tummy. We will see a new GI this Wednesday to see if together we can figure this out. To admit my paranoia, I must tell you that I've read of several families recently who've dealt with rather aggressive and totally unexpected infections around G-tube sites. One of the girls died. she refuses to sit in her stroller, whimpers as she reaches for her knees, and cries sometimes when her feedings begin my mind rockets off the launching pad directly towards the darkest thoughts and worst scenarios. I am just hoping for answers. By now, I can deal with just about anything as long as it has a face and name.

We are rebounding from a tiring and emotional week. Ray was out of town, so of course the stomach flu came to visit. First RJ swooned, then Matt swayed, and by Friday afternoon I collapsed in a dysfunctional heap. Matt (recovered by then), stayed awake in Abbie's room until after midnight so that I could rest on the floor. He ended up sleeping in the recliner - my loving, caring hero that night.

Saturday brought to the fore the emotions Ray and I had been sorting through all week. That evening was a wonderful event celebrating Kapiolani hospital's 100th birthday. This is where Abbie's life was saved, and where Ray serves as CEO. The program was all about the impact of the hospital -- from being greeted by young children in t-shirts reading "Beating Leukemia" or "Born Under 2 pounds" (my tears started early), to vignettes from families who received life-saving care. It was finally Ray's turn. He usually only speaks as CEO, but this night he was also Abbie's dad, which required me to find photographs to accompany his short speech.

This task broke my heart. As I wrote to a friend, "Time has helped dull the razor edges of our loss, but seeing her pictures from before makes us think, once again, what could have/should have/would have been." Honestly, I was dreading seeing her bright, shiny, sassy picture on those giant screens.

Flash - there she was - brand new yellow sandals with white flowers, a dress with the connected panties unsnapped and hanging down, smile to light a stadium. Flash - on a ventilator, wearing her Elmo hospital gown. So small, so hurt, so helpless. One more flash brought our smiling girl back, in the pool in the arms of her Daddy. Older, different, but as beautiful and precious as ever. I held my breath through the whole speech.

In the darkness I sat in vulnerable silence, only crying on the inside. Then, the Mayor, who was sitting next to Ray's chair reached over and pulled me into a hug, at which point the tears came. After living this story for so long, I didn't know that it would be so hard to share, face-to-face, with that many people. It's hard even writing about it now -- being so exposed, I guess. Showing people, through the photographs, exactly what we lost, and what we have been given.

But, the last thought that comes to my mind is, "I couldn't be prouder of her."

Thursday, January 22, 2009

Rich in Friends

We have never had to suffer the isolation that often accompanies an injury like Abbie's. This, perhaps, is the most profound evidence of God's grace in our lives. We are utterly surrounded by people who care, who listen, who quietly come alongside and shoulder our burden. Abbie, as I often tell her, is the richest little girl I know. She is wealthy in friends... the best kind of friends: tender-hearted, considerate, joyful, patient, kind. Words cannot express the depth of gratitude in my heart for the precious little ones who care about Abbie, and let her know it.

Cassidy is the daughter of one of Ray's co-workers. She has followed Abbie via the blog for a long time, and kept bugging her mom about meeting Abbie. She was already one of Ray's little sweeties, as he took special delight in giving her quarters -- until one day she opened her wallet to reveal several dollar bills! We have loved watching her grow since she arrived home from China at one year old. She has blossomed into quite a personality, so I was excited to have her visit Abbie one evening.

Abbie still had her casts on, so Cassidy was a little shy, and overwhelmed with the sights at first. But, once she warmed up, she was off to the races...or perhaps, the theater -- this girl is made for drama! She read many books out loud to Abbie, and even did the voices of those silly monkey jumping on the bed just the way Abbie used to. It is possible to smile through tears!

Abbie hadn't yet had anyone sign her casts, so I asked if Cassidy wanted to do this. Of course! She signed her name on BOTH casts, so that "one wouldn't be lonely." She then also put Abbie's name on there for more company. Abbie delighted in having another little girl in the house, especially one as animated and friendly as Cassidy.

Last week the Cheshire family stopped by to make up for Abbie not being able to go to church on Christmas Eve. Not many families could stage a re-enactment of the Christmas story, complete with all the characters including a live "Baby Jesus."

Little Iliana was the youngest of the three wise "men", and played her part beautifully, with Christa the Angel, and Isaac, Wise Man #2 adding their joyful smiles to the mix.

The kids acted out the whole Christmas story for Abbie, then Katrina and Christa danced for her. The visit ended with Christmas gifts of crowns and an angel. How completely blessed we were. It is a major troop movement to take eight children anywhere, let alone having everyone's costumes and props. Unbelievable. As they drove away into the night I wondered aloud, "What have we done to ever merit such kindness and love?"

We may have lost much, but for us, the Lord has replaced "normal" with "extraordinary". Thank you, Cassidy, Christian, Katrina, Caleb, Christa, Ian, Isaac, Iliana, Ilisha, and each of you who show amazing love to a little girl for whom you are the whole world.

Tuesday, January 13, 2009

First things first, Abbie got her casts off on January 8th! The nurse asked if we wanted to keep these casts, and I quickly said, "No! I have zero emotional attachment to them...once they are gone, this is all going to be a bad dream that never happened!"

I learned the lesson that Hollywood is still studying. Some movie sequels ought never be made, thus there is no "Cast Off Movie 2" on YouTube. This one would have had much less sound effects, however. After last time, I was prepared to the hilt. We had Traumeel cream at the ready, legwarmers to slip on as soon as the casts were removed (thanks, Auntie Debbie), and many forewarned hands on deck to help with the distressed cries of Abbie....which never came.

Not even one whimper. She grinned slightly as the saw's vibrations tickled her, but that was it. It would've been anticlimactic, but then Abbie put on a show. As soon as the casts were gone, she began lifting her little legs off the table. This was three weeks after breaking both femurs, mind you. Then, she began doing circles with her feet, something she has never done! She was just so happy to be free again, I'm not sure if I would've been appropriately shocked if she'd jumped off the table and said, "Let's go!"

All the way home she lay in the backseat, (which she thinks is the greatest) and continued her lower extremity aerobics. I'm glad there were lots of red lights along the way so that I didn't rear-end someone while peeking at her. She does have leg splints to wear through the 18th, but only when she is in her stroller or being positioned in a way that could put stress on the fracture sites. The Xrays that day looked great, and she has "made a lot of good, new bone." Hurrah!

We will go back on the 28th for another set of Xrays to ensure the thickness of her bone is sufficient to begin weightbearing. I am confident we will get the green light to get going again.

In addition to the joy of freedom, these have been exciting days because Abbie is just doing so darn well. I actually have a little tracker now on her whiteboard, like the "days since a safety incident" at construction sites, to advertise how long she's gone without needing any oxygen at all. This was Day 16. I hate to say that's the longest we've gone since I can remember. The open hole in her throat predisposes her to lots of irritating junk. I am praying we can get it closed up this Spring.

She is also sleeping through the night, a MAJOR victory for us all! She then awakes refreshed and happy, with smiles to beat the sunrise. Her vision, cognition, and motor skills seem to be coalescing into new gains. The other day she was laying on her side, watching her reading video. I had just moved her up to "Level 3", which brought proud grins from her. At this level the viewer is often presented with three or four words or shapes on the screen and asked to point to the correct one. If the weight of her arm was supported at the elbow, she reached and pointed to the correct ones! If she can do this consistently, and build up strength, this would be a big step toward a better communication system, like a touch-screen computer!

Although, at the rate she's using her voice, I don't know if she'll need one. That girl is getting downright bossy at times, calling me from the other room, irritatedly informing us that she has a monster wedgie, or telling us to be quiet for a while! I leaned over her and said, "You are so close, Abbie! All we need to do is get that tongue moving, and you will be making words again." Big grin.

But, then I wondered if I was being fair by saying that to her, making it sound like a simple proposition, when actually it's a pretty complex operation. My mommy-guilt passed quickly when I realized all the steps of language production she DOES have, with understanding being the primary, and least-expected one. She knows how to use her breath to produce sound (even bypassing that hole in her throat), she uses her language at appropriate times, and boy, does she know WHAT she wants to say. So, we really have lots of the big pieces...would you just pray for her tongue to get with the program?

She has been absolutely blessed by visits from friends lately, but I want to dedicate a separate post to that. So, I will just close by saying that I am amazed, even now, even after all this time, that things can feel like they are happening so quickly and suddenly. I often say I find comfort in "having read the end of the book" so I know that all of this will end well. However, I was cheating myself of the blessing of actually memorizing the final red words in my Bible.. They seem especially appropriate for this new year, with joy coming down in buckets, as we continue to trust in the One who never changes.

"Yes. I am coming quickly" - Revelation 22:20