Friday, July 29, 2011

The next step


Seems I posted the "paci bon voyage" post about a week too soon. The good news is that all this talk of getting rid of the plug is helping the little guy deal with it better. The other good news for him is that he gets to keep it for about a week longer than we had planned with a new date of riddance for next weekend...Nathan will be admitted to Shands again on Monday for a few days.

It has been a bit difficult to know which way to go with his treatment at this point. Some days he does okay with the g-tube...some days he looks really good. But then there are other days where he clearly struggles with pain and horrible reflux and feeling "sick", like he describes it. He understands now that zofran helps him when he feels sick, and he'll ask for it when it gets pretty bad. The bloating is still tough on him at times...usually if he eats something by mouth or is having an especially rough day with motility.
His reflux has gotten pretty bad. Our wonderful surgeon did the surgery in a way that should not cause any additional reflux, so the consensus is that we are just pumping him full of so much more volume with no where for it go but refluxing up until it finally starts to empty. This would be why he is gulping and coughing and hiccuping so much. We've doubled his reflux meds and are at the highest rate of his motility med, even though that has shown that it really does nothing to speed things up anyway. He has recently started complaining that his meds taste nasty and requesting something to drink to wash away the taste, even though I give them through the med port of his g-tube.

The good thing is that he has put on a little weight! One scale showed that he put on a pound since his surgery and the other showed that he put on 1/2 a pound, but it is weight gain nonetheless. I just hate that it requires so much daily discomfort and pain to get the adequate nutrition into him. I have mentioned before that one of the hardest aspects of this disease is that Nathan and others suffering from mito have to learn to live with a degree of daily pain and discomfort. There are so many times that Nate says that he hurts, and all we can say is "I'm sorry, hun." So it is difficult to know when to continue to say "I'm sorry, hun" or when to intervene with the next step of trying to help bring relief...all while not knowing if you are making the right decision or not.
So, we are at a crossroads, as our surgeon put it. We know that in order for Nathan to tolerate all of this better, we are going to have to make some changes. Our GI doctors were completely correct in their prediction that he wouldn't tolerate just a g-tube, but everyone was supportive in us trying...I appreciate that. And I am extremely thankful for the next step in this journey...

Our children's hospital is one of two hospitals that is currently offering a gastric stimulator for peds patients: a pacer device that helps to stimulate contractions in the stomach to move food. Like I had written earlier, I didn't think that Nate would be eligible for it, but our surgeon said that he wants to try it for him. The success rate for the kids that responded favorably to the temporary pacer is remarkable. The question is whether Nathan will respond to the temporary pacer or not. We are optimistically hopeful and prayerful that this will be the treatment that helps with his struggles against dysmotility...all while being realistic that it may not bring the relief. But we, our surgeon and GI team, and numerous other docs that we have talked to have all said that it is worth a try. Due to the nature of mito, it may work...or it may not.If it doesn't work, our surgeon said that we need to make the decision to either do a fundoplication (where Nate would undergo a surgery that would essentially squeeze the top of his esophagus to prevent reflux) or go ahead and switch to the GJ-tube...the fork in the road if the pacer doesn't work. Honestly, I don't want to do a fundo based off two main reasons...1) Nate's lungs sound good, so it doesn't seem like he is aspirating, and 2) when you have dysmotility on one end of the GI tract, you really don't want to almost close up the other end. So, if the pacer doesn't work, we will more than likely switch to a GJ tube and get his GI system in better working order before the illness season strikes again and we lose more ground.The plan is for Nate to be admitted on Monday afternoon for IV fluids through the night, then he will go down to the OR on Tuesday to have the temporary pacer implanted. The leads of the stimulator will go through his g-tube stoma and attached to his stomach. The actual stimulator will then be taped to the outside of his belly. Our surgeon said that they typically see improvement if it happens within the first 24 hours, but he wants to give Nathan a good 1-2 weeks to see how he really responds to it. If all goes well after the placement, we should be able to head home within a day or two. Once we know how his body is responding to the extra stimulation, we will then be able to make a better decision of the next step.
We are at a difficult spot in caring for Nathan in that we don't exactly have a rule book or set treatment that will make him better. I had a good conversation with his pulmonologist the other day where we discussed that taking care of Nate from a medical standpoint in more like an art rather than a science because his body and this disease don't play by a set of predictable rules. That is tough to approach at times when we are trying to figure out what to do.

But it is times like these that I am indeed thankful that we have the love of our heavenly father who created our precious son...who has numbered every hair on his head, who is familiar with each cell in his body, who has the foreknowledge of the course his life will take. And we continue to pray that he will give us guidance in knowing how to proceed in the care of our child...of his child. Please keep my little man in your prayers next week...that this pacer will work, and that God will give him grace through another procedure.

Wednesday, July 27, 2011

Paci


He has such a tender heart...I laid beside him last night...crammed on the bottom bunk between the little guy, Tebow (his beloved stuffed dog), Mousey (his stuffed mouse that he won in a "The Claw" vending machine at Marco), and Mito, (his stuffed turtle that Dr. Koenig gave him a couple of years ago). It was a tight fit. As I stroked his hair toward the right side of his forehead, I told him stories of how all little children have to pass from babyhood into childhood by giving up their most treasured comfort items: their sucking habits. His parents did it, his sisters did it...and now it was almost time for him to give up his beloved paci.
What I didn't expect was the little chin quiver and tear-filled eyes with each and every story. Each time I explained the scenarios of one of his loved ones giving up their "lovies" and passing into childhood, tears would stream down the little guy's face...not in an audible cry, but in the kind of silent heartbreak that most experience at the movies or church or on their pillows as they cry themselves to sleep. That was why it was so hard to witness. He was genuinely sad for the ones before him to have to give up such treasured items. It broke me...it made me want to let him suck on that dang paci for as long as he ever wanted. It made me want to completely ignore societal accommodations on such added "appendages" on our kiddos and just let him set his own time frame of when he wanted to give up the paci.But it needs to happen. The paci needs to go. As much as I realize that society will probably give the little guy a pass at keeping the attachment longer due to his circumstances, and as much as I LOVE that little plug that is often attached to my littleun's mouth, I have also come to the realization that it needs to go. I have always said that apart from letting him have a paci longer than anticipated, I would treat Nate like a regular kid, despite what he has to deal with on an everyday basis. Well, now it is time to treat him like a regular growing kid without a paci. It makes me sad to say goodbye to it...but like I tell him, he is such a big boy now.If only he didn't have such a tender heart about it...

Monday, July 25, 2011

Book Club


We've met some pretty incredible people the past few years through the school system and created some wonderful friendships through these encounters. I think it is important to get to know the families of the kids my little hooligans like to hang out with, so we are pretty much out in the open at school often. That is one thing I miss about the summertime...not getting to see everyone regularly like we do during the school year.
Anyway, in an attempt to keep the friendships of our chiltlins kindled through the weeks of summer break...and in a bigger effort to get their noses out of the copious rerun episodes of Phineas and Ferb and into books where they can practice all that good learnin' they learned at that place they do all the learnin' stuff during those learnin' months, one of the moms started a book club for the kiddos.
The kids choose a book to read and then we all take turns hosting the book club. We chose Charlotte's Web for our shot at hosting. Well, let me rephrase that to I chose Charlotte's Web because I am not too crafty and fun with this kinda stuff and I knew a movie of the book would take up a good amount of the time. And we already had the book, so I wouldn't have to buy it. I took the easy way out.
The girls loved reading the book! Abby and I took turns reading it out loud to Emma so she could participate in the book club as well. When the girls arrived, they made a door hangy thingamajigger craft that had absolutely nothing to do with the book, but I did tell them they could draw a pig or spider on it if they wanted to stay in theme. They put flowers and pom-poms on it instead.

We did decorate sugar cookies with icing in the shape of spider webs. And I asked them questions I lifted from the web about the theme of the book and main characters and all that jazz that totally used to bore me to tears in school. I hated English. Mr. Cliff deNotes was my best friend in high school.
We ate sugar cookies and pizza, where it took everything in me not to burst their little innocent bubbles by mentioning where their precious pepperoni originated. Little did they know that they were eating a deliciously ground concoction of Wilbur. Wilbur sure is tasty.

We settled in to watch the movie, which held their attentions for all of about 20 minutes before they erupted into massive games of hide and seek and rearranging every square inch of the house that had been carefully cleaned in preparation for the party. But they did have fun. They were especially surprised by an impromptu visit from their 1st grade teacher (well, the teacher to half of them) and all screeched and ran for hugs when she arrived.

It was a fun night. Exhausting...LOUD...but quite a blast.

Wednesday, July 20, 2011

Wordless Wednesday: Blue


Monday, July 18, 2011

More from Marco...


Many moons ago, I said I would post some more Marco Island pictures here. Honestly, it feels like it eons ago that we actually went...so much has happened since that time. Oh, how I wish we could be there again...in the warm sun and relaxing atmosphere. I miss it so much.

And since I am a woman of few words during these long summer days, here are some more pictures from our June trip to Marco Island...starting with one of my favorites (nevermind the fact that I completely cut off Emma's hand in this shot, though it is probably bothering me a whole lot more than you)...

Thursday, July 14, 2011

The last of grandparent month


We have had the wonderful privilege of having Jay's parents and my parent's with us for a good portion of June/first week of July. Since they all live a full day's drive and 3 states away, it has been difficult for us to make that trip north to see them all as often as we would like. So, it has been a wonderful treat to have them so much this summer. With these years in the kids' lives being such impressionable years in development, I am so thankful that they have been able to spend as much time with their grandparents as they have this summer.
Now that everyone is gone and our big summer plans are over, it has been a bit of an adjustment to get back into the swing of things around here. This week and next are some of our only true lazy weeks...meaning that barring the normal doctor appts and therapies, we don't have too terribly much planned. I can not explain how nice it has been to wake up and lounge around the house for a couple of hours with no specific place to be. Abby has played copious amounts of Wii, Emma and Nate have had their fair share of tea parties and playing "house" (with Emma always being the mama and Nate always the baby), and I have enjoyed a new book. Each day, we have met with friends or swam or gone to the summer $1 movie. It has been the epitome of summer vacation.
Nathan is doing really, really well this week! Its honestly the first time since his surgery that I can say that. I was pretty worried about him last week. He's still on a slow rate, but is tolerating it so much better this week. However, he has almost completely stopped eating. Yesterday, he ate a 1/2 cup of dry cereal, a handful of popcorn/pretzels and a cracker. That is about the max he eats now. He did tell me yesterday that eating makes him sick, so I am sure that he is realizing how much better he feels when he doesn't eat as opposed to being on his pump. He still has his favorites though...after only eating the marshmallows out of Lucky Charms and a few goldfish today, he ate a slice and a half of pizza tonight. I'm glad he can still eat his faves!
Anyway, he has lost a little weight lately...which I am sure is due to the lack of eating and us giving him some slack on the volume of formula due to the pain he was experiencing as his body was adjusting to everything. So last night, we added that second box of formula to his night feeding and he did great with it (he also receives one box during the day as well). When we did this previously, he would wake frequently, toss and turn and even had a couple of choking/retching episodes while sleeping. I am so glad that he is finally responding favorably to all of this. And the even better news is that he looks really, really good right now. He has enjoyed swimming and playing with the girls, and his little personality is back in full force. It is so good to have my sweet boy back.
So, that's about it for us. We are enjoying this summer and making the most out of it since it will be over before we know it. We're reading good books, watching cool movies, enjoying each other's company, and catching up on all the sleep we have lost the past few months.

Sunday, July 10, 2011

A short update


We have been really busy with family here and our annual summer meeting at church this past weekend, so I haven't had a chance to update since we got home from the hospital last Sunday. Many have asked how Nathan was doing, so I want to write a quick note to say that he is doing fine. Minus a 3 hour trip to our ER again on Monday because he stepped on his tube while walking up the steps of his bunk bed and pulled his entire g-tube out, he has done okay this week. *Just know that after crying when I saw Abby holding his g-tube in her hands because I was exhausted and didn't want to go back into the hospital, I was so thankful that the x-ray showed perfect placement when they were able to reinsert it in the ER. Phew!...and that the long tube has remained taped to his belly at all times since then.*Nate's had a big week with his grandparents (more pics to come later). He didn't feel good for a lot of it until we tweaked the volume of his feeds we were giving him. Once we cut down drastically on how much we were feeding him at night and worked with some other methods through the day, his little personality came back in full bloom. The short story is that 1)he can not handle bolus feeds at this time and 2)he can not handle 2 boxes of formula at night quite yet. But, as of today, he was able to have his daily rate increased to 45ml/hr with little issue! We have doubled his reflux med in hopes to curtail some nasty reflux he has had with all of this, and we hope to be able to reach his caloric intake goal by the end of this week if all goes well. It's slow going, but we are trying. The little guy is a trooper through everything.

**Pics from the past week will follow sometime this week.**

Sunday, July 3, 2011

Home...again


I spent a good amount of time looking out our window last night. It was the best view we have had from the few room changes throughout the week. It seems that the longer you stay inpatient, the more emotional and sentimental you become...be it the lack of sleep or extreme awareness of the delicate state you live in...the emotions do seem to go into hyper drive during each stay in the hospital. I spent a good amount of the evening looking into the nicely manicured palm trees that peppered the entrance of Shands Hospital. Across the street stood the lighted windows of the VA hospital and the fairly new Cancer Unit for Shands. I spent some time wondering who may have been looking out of those other lighted windows onto one of the busiest streets in our city. Who else was laying their head on a pillow that was not their own?

I was also spending that time thanking God for placing us in a home just a few short miles from a wonderful Children's Hospital...a few short miles from numerous specialists trying to figure out a way to improve the life of our littlest Ferrell. A few short miles from nurses and PCAs and therapists who want our dear son to succeed to his greatest ability in this life. I am exceedingly thankful that God has placed us in this area of our country...that is where my thoughts were as I looked onto those perfect palm trees encircling our hospital's entrance last night.Nathan is home tonight. He is currently tucked in on the couch in our bedroom with his feed running. We finally convinced him of wearing a pull-up tonight. After being in big boy undies for a year and a half, that was a hard thing to do. However, when a child has almost 470mls of fluid running into his body while he is sleeping, he will indeed have to "void" some of that fluid during the night. A pull-up is a must at this point!
During our second stay inpatient this week, we realized that Nathan was not doing well because his feeding rate was set too high. After playing with the rate a little, we found that his magic number seems to currently be about 35ml/hr of feeds. Once his body starts responding favorably to the feeds without the aid of narcotics, we will start to increase his rate to see if we can get him at a higher rate.

However, due to his struggle with feeds, we realize that the need for a trial with the gastric stimulator is needed (with numerous docs agreeing), and that if the stimulator does not work, a GJ tube may be needed. But, we want to give the little guy a little more time to prove us wrong. The post-op period has not gone smoothly like we had hoped, but we are still hoping that his motility shows some improvement with the feeding change.Anyway, the little guy was discharged again this afternoon. He made the rounds of goodbyes and hugs to the nurses on the floor. It doesn't matter what nurses you have in a visit, you get attached to most all of the nurses on the entire floor. They are amazing little earthly angels in this unusual life...people who you become attached to due to their personalities and intense love and devotion for your own child. They are people who you trust and rely on for physical, mental, and even emotional help in a life that needs constant medical intervention.

For doctors, you are usually on your game...questions at the fore front of your mind, stellar attention at every word they say, astute biding to their requests...but for nurses and therapists and other helpers, our minds and tongues are more free to explain what is in our brain and thought processes. I have never cried in front of a doctor. There seems to be some sort of mind barrier that is automatically put up when a doc comes into the room that shields me and them from the emotional outpouring of a heartbroken parent. But in communication with nurses and PCAs and therapists, my motherly heart is touched in a different way.
Being in the hospital stinks, plain and simple. While in, we are continually exhausted, sore, and emotionally spent. I lost 4 pounds this week alone (I am one of those weird people who lose weight when under intense stress instead of gain it). But being in our hospital, where the people we encounter every few minutes bring intense joy to our day, makes it more palatable. I thank God for those precious doctors, nurses, PCAs, med and nursing students, therapists, janitors, and others who spend their days walking the corridors of a hospital. Relationships in our daily life bring joy...and this rings true even in circumstances where we normally wouldn't imagine. I am exceedingly thankful for the blessings of various people in our lives. And I am even more thankful that our little guy is home...and awaiting the arrival of his Nana and Pawpaw (my parents). Relationships with others mean so much to us...and grounding family relationships make us feel more secure amongst the daily struggles of this difficult life. God has given us so many tools to remain joyful and thankful during our days on this earth.

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