Thursday, August 11, 2011

Where we stand now


Tomorrow, I'll turn 30 years old. The smells of the cake my sister and the girls are currently cooking waft through the house as they hurriedly put together what they had planned to do later. The sweet card and gift they gave me made me cry. But the best gift I have had was having my little sister here for 2 weeks. We've laughed until it hurts to laugh, had some really great conversations, and just genuinely enjoyed each other's company. I will miss her greatly when she heads home.
30 years old. I have high hopes that I will now no longer be referred to as "the baby" among the group of moms we spend so much time with through the school year. And maybe now, I won't be gawked at when people find out my age and the fact that I have 3 kids...2 of whom are now in school. 30 just seems so much older. There are days where I still feel like I'm 12. But there are also days where I feel much older than I am...continuous stress will do that to you.
Its funny how life goes on despite the seemingly momentous milestones that take place. Tomorrow, we'll be in the hospital once again. Actually, we'll start that way in just a few short hours...

It took a few days, but Nathan responded very well to the temporary stimulator. He started eating so much and not complaining of pain or nausea or discomfort at all. He had more energy and seemed improved overall more than we have witnessed since starting oxygen therapy 2 years ago. He was a different child...happy, playful, not sleeping as much, hungry, and so very sweet. He felt great!! With Jay and I being each other's checks and balances to hopefully keep the placebo factor at bay, we both were in complete agreement that it was indeed working well for Nate.However, something had happened within the past day. He just didn't seem as good last evening than he has this entire week. And when he woke this morning, he was really bloated. I felt a bit defeated and really confused going into our appt with our surgeon this morning, but I also could not deny the fact that he has had one of the most incredible weeks he has had in a very long time. We also couldn't ignore the fact that he has gained .8kg in a week...almost 2 pounds. Granted, I think some of that was due to his bloating this morning, but I know from weighing him at home that he has gained a good pound at least...in a week!! Eating will do that to you! And that's something he hasn't done much of in the past few months.Our surgeon checked the pacer and realized that the impedance had changed quite a bit and was almost at the level where the pacer would stop sending electrical signals. This could be one of the reasons why he is so bloated today. A couple of things come into play here...when he placed the temporary stimulator last week, he noted that the angulation of Nathan's stomach was unusual and made placing the leads rather difficult. This could be why the leads are coming loose. But also, Nate took a big fall yesterday morning directly on the stimulator taped to his belly, and that could have jostled everything enough to loosen the leads. Regardless, we know it is about the stop working entirely and could potentially be seeing the effects of it losing its signal already.However, we need a little more time and information to make sure that this stimulator is working as well as we need to warrant the placement of the permanent pacer. The placement of the permanent one is a bit more in depth of a surgery that we don't want to put Nate through unless we know without a shadow of a doubt that it is working really well for him. This type of treatment is usually done on older kids and teenagers in the pediatric population, and they can give numerical values to their symptoms to be able to accurately portray how they are responding. Obviously, Nathan can not do that, so we are hoping that giving him longer time with the temp can help all of us tell completely how he is doing for more consecutive days. Additionally, since this treatment in pediatric patients is still in the experimental phase, insurance coverage is a bit difficult to achieve, so we need a longer trial to warrant the coverage.
Since his current pacer is almost kaput, we would need to insert a new one to continue with this trial. So, Nathan will once again be admitted to Shands this evening and go in tomorrow morning for the placement of a new temporary stimulator. Since our surgeon is familiar with the odd angulation of his stomach now, it should be easier to apply the electrical leads. Hopefully this will be a quick 2 day stay and be home by Saturday.

One thing we have learned since having Nathan in our lives is learning to fly by the seat of our pants fairly regularly. I think that's how that saying goes. But the emotional roller coaster of doing so is tough at times. Nathan is doing great! Sad to say, he was so excited when I told him he was going back to the hospital today, as he started talking about all the movies he would watch and the toys he would play with in the playroom and being able to read his favorite books the hospital provides. This would all be infinitely harder if he weren't so adaptable and easy to please.

7 comments:

Dianne on August 11, 2011 at 1:04 PM said...

Amber, I hope it's as encouraging to you to post these journals as it is for me to read them. You are an amazing 30-year-old (almost). I'm sixty-something and I've never had the trials you've experienced with your little guy. He's precious to me and I've never met him. I SO hope the new temporary apparatus will bring back the appetite, the weight gain, and will be "sound" enough for the insurance company to give you all the go-ahead. May God continue to give you and your husband wings to lift you above the rocky places in your way. Your sister is a DOLL! Glad you all could share this time. Praying always for you all.

Kyla on August 11, 2011 at 6:31 PM said...

Good luck! And happy almost birthday. I just turned 28 and am looking forward to 30 for the same reasons!

I hope the new pacer continues to help him. KayTar is have some gut troubles right now and we're in e midst of testing and trying to figure out what might come next.

Dawn Sutphin (Sara Mom) said...

Happy Birthday Amber! Praying all goes well.

Gatormomx3 on August 11, 2011 at 11:47 PM said...

How did a "baby" like you get so mature? I love the way you write & the beautiful way you capture moments with your photos. I love you all so much and will keep you all in my prayers tomorrow especially. Happy Birthday to my very dear friend! Let's celebrate Wednesday :-)

Clara-Leigh on August 12, 2011 at 12:16 AM said...

Gal, you have packed a HUGE amount of learning and love and experience into your 30 years!!! I was always the baby of the bunch of friends since getting out of college....not necessarily a bad thing!!! Hugs, prayers and thoughts for you guys as you return to Shands.
CL

Anonymous said...

If you thought you got looks being seen with 3 kids trailing behind you before you hit 30 then you should have seen the mouths drop open when we were seen with 5 trailing behind us before we both hit 30 and we already had 3 of you in school. Time flies when you're having fun. Happy Birthday darling and I'm so glad that Bethany was such a great help and companion the past 2 weeks, but we miss her and are looking forward to her getting home to spend her last week before she heads back off to college. Give my grandbabies a big hug & kiss and tell them that their Nana really misses our water fights. Love you!

Jen on August 12, 2011 at 9:07 PM said...

Happy Birthday Amber! Praying all went well today and that you will be home tomorrow to continue celebrating the big 3-0. I'll be joining you in just a few weeks :)

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