Tuesday, April 24, 2012

Swamp Dash & Bash


I knew it would be a fun day, but I honestly didn't expect the day to be as incredible as it truly was. I didn't expect it to strengthen the bond most of us already had with each other even more. I didn't expect to think about every aspect of the day later on and just smile remembering it all. And I didn't fully expect being so sore the next day that every movement was met with pain, showcasing that my body is getting older when my mind still feels young.

The Swamp Dash was truly an amazing experience with women on Team Natester that I feel so very blessed to call "my friends". The run was physically challenging, but nothing was too hard to handle with the physical and emotional support from each other.

Team Natester won first place for team fundraising, which was such a special honor. One of the incentives for raising the amount of money you all helped us raise was that we had a couple of race volunteers follow our team around and take pictures of us at many of the obstacles. Obviously, pictures of life mean so much to me, and these pictures that represent the teamwork and effort we experienced that day are so very special.

For the fundraising efforts, Team Natester received the best trophy ever...a gator head attached to a plank of wood. How much more Florida can you get? It's new home is on one of the walls in the Natester's room.

Thank you, from the bottom of our hearts. Thank you for your support...both monetarily and emotionally. You all helped us raise almost $3000 for Shands Children's Hospital...something I can't think about without grinning from ear to ear and thanking God for surrounding us with so many that care for Nate and our family. Thank you all so very much.

It was an incredible day...with some really incredible people. I can't wait to do it again next year. Go Team Natester!

Wednesday, April 18, 2012

Gettin' muddy for a cause!


I should have known that the appointment would take a lot longer than I anticipated. This one always does. The little guy is quite an enigma in so many different aspects, and not seeing many (or really any) quite like him, our local doctors often try to soak up as much information as they can about him each time we visit. He's quite used to these long, arduous appointments, but he is still a 4 year old who gets a bit stir crazy from time to time.
In the midst of the seemingly endless conversation between me and his doctors about his life, a mischievous and ornery glint in his eye made me realize that Nate had reached that point where he was about to start bouncing off the walls. One of our favorite nurses poked her head into the room at the absolute perfect time, asking if her buddy needed a break and could take a walk with her. They know him so well...and seem to love him so much. These are just a couple of the many reasons why we love Shands Childrens and everyone associated with this hospital system.
He returned to the room some time later with a rejuvenated patience and arms completely full of toys and stickers to take home. I laughed as soon as I saw him and uttered the same phrase I have uttered countless other times we have been to doctor appointments and hospital visits: "My goodness Nate, they spoil you here!"
In the true definition of the word, Nathan is not really being "spoiled", but the numerous gifts, toys, stickers, crafts, games, and stuffed animals he has received from care givers associated with Shands over the past 4 years have made the hard times much easier for him to handle. IV pokes and blood draws are usually followed with trinkets or toys, enduring scary tests usually prompts a new stuffed animal, stickers are given at the end of vitals, and toys or games are given to him to help him endure the countless hours of sitting between 4 white walls during appointments while doctors try to figure out how to give him the best life possible. Most of these precious little gifts...gifts that are so big and rewarding to a little boy...are often made possible by donations to Shands Hospital through the Children's Miracle Network, whose funds are appropriated to "research, state-of-the-art medical equipment, patient education, and diversionary items". It is an organization that truly affects Nate and our family personally.
Over the past couple of months, we have been involved in a fund raising effort for the Children's Miracle Network, specifically donating all proceeds to Shands Children's Hospital. The fund raiser ends in a mud run...4 miles, 20 obstacles...a race that will make us push ourselves through pain and exhaustion in order to cross the finish line, much like a metaphor for children treated at Shands.
Our team name even stems from our many days spent with Nathan inpatient...Team Natester. You see, one of Nate's favorite nurses has always calls him "Natester" when he is there, and the name has stuck. The funny thing is that he doesn't like it when anyone calls him that outside of the hospital walls...its his "hospital name". We thought it was quite fitting to use this as our team name as well.

Thanks to the generous donations of others, Team Natester is currently the top fund raising team for this event. Seeing how many people have given so graciously to this cause has been quite humbling and exciting. If you desire to help Shands Children's Hospital and Team Natester, you can donate here or here


Thank you so much for your support!

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Translation: My name is Nate, and I love Shands Children's Hospital. Thank you for supporting Team Natester in the swamp dash and bash. Gettin' muddy for a cause!"

Thursday, April 12, 2012

Last of Houston pics and med updates


These pictures of a bit of the downtime when we were in Houston are some of my favorites in a while...they seem to sum up the simple joys of childhood. No matter what is happening, no matter what news we are given, no matter what tomorrow holds, these kids seem to always find ways to enjoy each and every day...and so shall we. 

We had about a day of rest when we got home from Houston (and after Easter) before we hit the ground running again with more dr appts for the kids. The first on the docket was Emma, funny enough, seeing one of her best friends' dads (and ENT here in town). Emma has been the unfortunate victim of "sister of a medically complicated brother" in that I have known for a good while now that she has more than likely needed her tonsils out. Once we started finding Abby sleeping on the couch every once in a while because Em was snoring so badly, I finally decided to bring it to everyone's attention. 
 
The kiddo was put on better allergy meds and referred to ENT for rather large tonsils. The funny part was that A) she was so excited to have something medical pertain to her and B) she was really, really hoping that she could do a sleep study. Hence works the mind of a child who has only known medical oddities most of her life.
Turns out that she fits most all the qualifications to take out her tonsils and adenoids without a sleep study, so she was a bit bummed. Hopefully this surgery, scheduled for this summer so she doesn't have to miss so much school, will help the poor kiddo stop sounding like Darth Vader when she sleeps. And I do have to mention that it is funny to have doctor visits with people that you know on a more casual basis beforehand. And by casual, I mean that Emma has had numerous playdates with his kids at his house...and even jumped into their pool fully clothed a few months ago...purposefully. He totally knows what he is getting into with this kiddo.
We had an appt with Nate's home pulmonologist the next day to review everything we did in Houston and all the new info. He did his second ever PFT and did outstanding with good results as well. I never would have imagined that he could perform a PFT at 4 years of age, and his pulmonologists here were pleasantly surprised as well. We are going to perform more extensive PFTs in the future (with mep, mip, and laying down) to hopefully see how much respiratory weakness we are dealing with here. The appt was a long, but really good one. We met with the fellow we have worked with for some time and love immensely, and we also saw an attending who we haven't seen in a little over 4 years. In fact, she was the very first pulmonary attending we saw the very first time Nate was hospitalized when he was 2 weeks old, and she remembered him so well. Turns out that he was quite the enigma then and this attending was so excited to see how well he is doing with the oxygen therapy now. It truly was an incredible visit with these doctors...a visit that encompassed quite a bit of medical talk with a lot of personal emotion talk of what is happening with our son and family...it was exactly what I have needed lately.
We thought we rounded out the marathon of appointments as of lately with a visit with Nate's surgeon today. This was, by far, the appt that he was looking forward to over the past few days. He genuinely loves his surgeon...so much that I can't adequately explain his admiration for this doctor in words. Nate spent a good amount of the appt just draped over his lap while we talked...it is something that is so heart-warming to see as a mother. I can not help the fact that my child has to sit hour upon hour in these white-walled rooms, listening to his mother talk about his life and medical oddities with countless doctors...so to witness him actually enjoying and looking forward to these interactions every once in a while is so touching in many aspects. 
This surgeon was happy with Nate's continued response to the GI stimulator but also said that due to his response to having the stimulator turned off for about 24 hours last week for the heart cath, we need to try really hard to not have to turn it off again. It took the little guy a good week to return to his baseline of eating and tube feeds, which I thought was pretty incredible (it used to take forever before the stimulator was placed). I am so pleased with the response our little guy has had to this stimulator...it has truly been life-altering for him.

He also told me that he is publishing the data on Nate and 4 other kiddos with neuromuscular disorders who have had positive responses to gastric electrical stimulation. I am so very excited about this!! And a second mito patient has responded quite well to the temporary stimulator and is having the permanent stimulator placed tomorrow. I am very excited with the fact that this information is being published as a positive therapy for kids with mito and other neuromuscular diseases!
I thought we were done with dr appts for a couple of months after this morning's appt, but Abby told me on the way home from school that she didn't feel good...and upon returning home, we realized she had a fever. When she complained of lung pain later, I checked her sats and saw that she was sitting at 94-96 and then listened to her chest and heard the distinct crackles that signaled the need to get her into our pediatrician's office. A bit later, we left with another pneumonia diagnosis and a script for an antibiotic. Who knows why the kiddo has pneumonia again?!? It really is quite strange. She has had a cough since I have been back from Houston, but she has seemed fine until today. For goodness sakes, she had the best soccer game she has had all season 3 days ago and ran a half-mile at morning mile yesterday. The appts never seem to end with 3 kiddos.

But it has truly been amazing to be reminded of God's bountiful blessings amidst everything. The friendships and relationships we have formed over the past 4 years in this medical world are such incredible blessings from our Lord. We have numerous nurses who treat Nate like their own child...giving him gifts, loving on him, and taking care of him when I need to talk to doctors. Each and every one of these people we encounter hold such a special place in our heart, and I am so very thankful that we have had the privilege to know and love each one of them. Like I told our pulmonologist yesterday, I truly wish life was different for Nate, but I wouldn't trade what we have learned and who we have met through this journey for anything. It is such a strange emotion.

Monday, April 9, 2012

A girlfriend in every state


Pics of the little guy after his heart cath last week...the anesthesia really took a lot out of him, like usual. But I don't think it helped this time that they gave him an extra hefty dose of precedex to keep him sleepy for a lot longer due to having to stay still for a few hours. It just took him a while to perk up this time around.
Asking Amy to be his "Texas girlfriend"...so that she may always smell his stinky feet when he is in Texas. :-) I kid you not, this kid is working his way to have a girlfriend in every state. He loves the attention of his favorite ladies.
  Ready to leave...still really tired and not feeling too great, but doing leaps and bounds better at this point...


Saturday, April 7, 2012

Samuel


A picture truly is worth a thousand words sometimes...
Another touching aspect to the photo above is the fact that it was in no way posed, prompted or encouraged. In fact, I had kept Nate close to a nearby bench so the family could visit the headstone for a good amount of time. Once every one started to meander around, Nate took the initiative to pull his heavy oxygen backpack across the ground until he reached his buddy. This is what we saw when he reached Samuel's headstone...a moment between these two precious souls who shared so much in common.

I couldn't be there for Samuel's funeral for a couple of reasons, one being that we were scheduled to be there 3 weeks afterward for appts. But I really hated missing his funeral...more than anything, I hated not being there for his family. So, I instantly thanked God when I found out that Samuel's headstone was placed the day Nate got out of the hospital this week. I was so thankful to be there for this time...so incredibly thankful.

It was an emotional night, to say the least. The headstone and bench were designed by his father, and they were absolutely perfect in every aspect. We ate "Cars movie" decorated cookies in memory of Samuel and released balloons with messages from all of us. Nate even drew a smiley face and wrote his name so Samuel would know it was from him. And then after we released the balloons, he yelled up at the sky "Catch the balloons, Samuel!!" It was a good evening...and emotional one, but an amazing one as well. I miss this little fella...my heart is still sad that he is not here with us but elated that he is experiencing complete happiness and joy in heaven. 

I look forward to the day we meet again some day, sweet boy...


Friday, April 6, 2012

Oxygen


It has been quite the week full of emotional highs and lows. Like every other time we have come to Houston, we have made some incredible and lasting memories...even more so this time than others, which I will write about in a few days. And like every other time, leaving the city limits gives mixed emotions.

We saw GI this morning for a routine appt where we primarily discussed Nate's stimulator. It is quite exciting seeing how interested everyone is in this treatment. We really enjoyed meeting the Houston Medtronic rep when Nate was in the hospital here. He was such a kind man, who told Nate after he turned back on his stimulator that he and his own 4 year old had prayed for him the night before and were going to continue to pray for him. It was such a touching comment from someone we had just met for a few minutes the day before.

He also mentioned that Texas Childrens is starting a peds GI stimulator program very soon and asked if I would mind if the doctor starting that program could contact me sometime in the near future about our experience. Of course I said I would love to help in any way I can. It is pretty exciting that other hospitals are seeing the benefits of this therapy and wanting to start their own programs.

Anyway, the appt that I was anxiously anticipating was today as well: our first visit with the pulmonologist who sees most of the mito kids in the clinic. She was such a great doctor who completely lived up to the wonderful comments I have heard about her. Being well versed in mito and in pulmonary disorders/breathing abnormalities, I have a feeling she will be a huge asset in Nate's care from now on.

We discussed so much information throughout the long and thorough appointment. And even though I had a feeling that I knew what her answer was going to be, it was still a bit disheartening to hear her say that she did not recommend we try to wean or trial down Nate's oxygen use. Due to the way his body is affected by this disease, we run the risk of making things worse by stressing his body more. Not only can we not taper down his O2 supplementation, but we are going to do additional testing in October to determine if he may need additional respiratory support at night in the form of a nasal pillow that gives positive pressure in order to help inflate his lungs better. Only, the nasal pillow is pretty new and has not had a pediatric design created for kids as small as Nate yet. Hopefully his testing will be normal and he won't need this equipment, but at least we know they are working at creating this design for peds in the near future.

It was good to get this pulmonologist's take on what is happening with the little guy's respiratory system, and it turns out that the theories our home doctors have had all along have been correct. It seems that Nate has a couple of things against him in regards to his breathing abnormalities. The first is the exact theory that our very first pulmonologist had...and how he has gotten insurance coverage of the oxygen and supplies for the little man all this time. You see, in order for mitochondria to make ATP (energy molecules), it needs food and oxygen. A big problem in Nate's body is that even when he has normal saturations on room air, his "work of breathing" is significantly increased. His body is trying desperately to get more and more oxygen into his cells by breathing harder and faster. Since he can not do so without exhausting himself, his lactic acid rises in order to provide more energy for the body. This is called anaerobic metabolism, and that term is often referred to when you talk about someone "working out"...except that Nate does not have to work out to experience this type of metabolism. Its the unfortunate effects from deficits in his mitochondria.

But when he is given extra O2, his work of breathing normalizes, he does not retract as much or as deeply, and his lactic acid normalizes. He has more energy for the rest of his organs, and he just feels and looks much better. Oxygen supplementation seems to keep Nate's cellular respiration in a more normal aerobic metabolism. This theory is not new to us, but it is nice to hear it pretty much confirmed by our new pulmonologist in regards to why Nathan responds the way he does. Some mito kids don't need extra oxygen at all, and for some, O2 doesn't seem to help at all...while some only require it at night for optimal effects, and then a few others, like Nate, require it most all of the time in order for their bodies to handle the other stresses from this disease.

The other thing working against the little guy in the respiratory arena is the fact that he is "quite neuromuscular", as his new pulmo put it. Even though he seems to be quite strong in his extremities, his trunk and respiratory muscles are weak, so that also increases his "work of breathing". It is just harder for him to take deep breaths. This is why he may need additional positive pressure help at night at some point in the future.

I asked point blank if it was possible for Nate to be off O2 for enough time during the day so that if he is healthy enough, he may attend school without the oxygen supplementation. She just shook her head back and forth and said that she did not want him attending school without oxygen. It will be too mentally and physically taxing on his body to do so without the added support. She did give permission to keep letting him have time off in small spurts to play outside or go to the park, just like we have always allowed him...he needs to have a little bit of time to run around like a regular kid without being attached. But it is very clear to her that Nathan's body needs extra oxygen to work as well as it can.

As hard as it was to hear her thoughts and recommendations, it was not something that I wasn't expecting. The question right now is how high of a liter flow he actually needs. Previous sleep studies have shown that his heart rate and respiratory rate normalize once we give up to 1L. However, he will still retract fairly often during the day unless he is on 2L, more than likely due to activity level and need for more energy. We will do more testing when we come back in October to determine what liter flow is better for Nate's body. It may even be that we have different flows for day and night.

It was a long day. We left directly after the appt (well, after a chest xray), and headed east toward home. Nate instantly fell asleep once we got in the van, so I had a lot of time to think...and pray...and experience all of the emotions you expect when you are disappointed and a bit sad. I wish it all was different some days. This doesn't change anything we have been doing already, obviously, and Nathan never knew of my desire to see if it was possible for him to discontinue the oxygen therapy, so he thankfully shares none of the disappointment of the conversations during the appt. Nate is incredibly resilient and none of this seems to bother him too much or slow him down...but I just wish he didn't have to be endure it all. I pray he remains resilient and as happy as he continues to be. I know God is with him always.

Wednesday, April 4, 2012

Heart cath


Sitting at a desk and facing a window overlooking tower after tower of medical facilities and hospitals that make up "hospital row" in Houston, I can't help but get lost in thought about the people behind the windows of the giant buildings I am facing. Its a beautiful sight in a sense, especially at this time when the Texas Children's, MD Anderson, Methodist, St. Lukes, and several other signs are lit brightly for everyone to see in the dark of night. There is so much knowledge and potential under the roofs of this incredible skyline.

I sit in front of this window, blankly staring at the enormous sight ahead, trying so desperately to wrap my thoughts around the events of the day. It was day met with an incredibly wide range of emotions but ended with more laughter than I have experienced in ages. That is always a great way to end a tough day...by laughing until your stomach hurts. We had a couple of good friends come spend most of the afternoon and evening with us, and I honestly thought they would have been thrown out of the hospital because they were laughing so loudly. One of them was Nate's new "Texas girlfriend". I knew the little guy was back to himself when as she was leaving, he told her that he had "one more question"...and then proceeded to quite innocently ask why her boobies were so big. And that he wanted to take a nap on them. It sure was an entertaining way to end a somewhat stressful day.

We started the day off super early, and everything went along quite nicely. The local Medtronic rep arrived at the hospital in time to turn off Nate's stimulator for the surgery, and the little guy was given a dose of versed that made him quite hilarious. He was whisked away to the cath lab, and I went to the waiting room and anticipated the updates they would give me periodically.

There is something so lonely about waiting for your child when their health is in the hands of someone else. I hate that feeling each and every time Nate is in an operating room. It literally feels like my heart is trying to run away to scoop him back up so I can just hold him. I can run errands and leave him with others for hours on end and not miss him, but when he is in the OR, I miss him so badly that it literally hurts.

After a couple of hours, Nate's cardiologist came to talk to me about the procedure. Via catheritization of his femoral arteries on each side of his groin, he was able to locate and test the hole in Nathan's heart. He injected a bubble solution to determine in there was excessive shunting happening through the hole, and the results were negative. He tried 3 different methods of this type of testing, and all were negative, so it was declared that Nate's ASD was not in need of closure and was not causing any negative symptoms in his body.

That was great news, in and of itself. The structure of his heart is sound, and that is now such a relief to us after this extensive testing. However, our hope was that the hole was the answer to why he struggles when he is off oxygen supplementation for a prolonged time. Our hope was that an easy fix...a patch on that hole...would help the little guy come off O2 supp all together. We knew it was a long shot, but it was so hard to not get our hopes up. To hear the cardiologist say that he really believes Nate's respiratory issues are central and autonomic in nature was quite disheartening.

The news made me sad, worried, and confused. It didn't help that the exhaustion of the past few late nights had set in and "something" was keeping the nurses from letting me go back to see Nate in recovery...I spent the next hour and a half in the waiting room, trying so desperately to keep the tears from leaking out the corners of my eyes and swallow the lump that kept popping up in my throat.

The prolonged waiting was due to the fact that the little guy had a fever when he reached the PACU. The nurse was trying desperately to pull his temp down by packing wet, cold washcloths all over him. After an hour and a half, his temp was finally under 100, so they called me back then. He does strange things with anesthesia...his body truly responds differently every single time in some kind of negative way. It took him several hours to really wake up due to a hefty dose of precedex they gave him to keep him asleep for longer. It was imperative that he lay still for several hours so that there were no complications with the catheter sites in his groin. It doesn't matter what you give him, he never moves all that much for several hours after anesthesia. It just takes a toll on his body.

We came up to a room mid afternoon where he continued to look quite puny. We tried to start feeds at 10mls/hr but had to turn them off a few minutes later as he was crying and complaining that his belly hurt really badly. As an oversight, they did not have him on IV fluids, and he was looking more and more puny. Once fluids were started and IV zofran was given, the little guy perked up quite nicely. We started feeds again later and are sitting at 20mls/hr now. He even ate a few fries and a good amount of dry cereal tonight. The effects of the stimulator usually lasts for 2-3 days even after it has been turned off, so his symptoms shouldn't get worst between now and tomorrow when the Medtronic rep comes to turn it back on. Things are slow, but steadily improving.

Hopefully we will be out of here tomorrow morning. We have a couple of appointments on Friday before we head back home to Florida. I am anxious to meet with a new pulmonologist who sees several of the mito kids out here and get her take on everything. I would really love to know if Nate can safely spend several hours a day off O2 without it being detrimental to his health. It would be so incredible if he could accomplish that. He never complains, and it doesn't seem to limit him nearly as much as you would think, but we would love for him to not have to be tethered to it so much. Since he is doing so well in so many other areas, I would hope that he could spend some significant time off O2 without detrimental effects to his body. But unfortunately, we still see negative reactions to even short amounts of time off on some days. I am anxious to get her opinion and suggestion.

Nate has been amazing through all of this...simply amazing. I feel extremely privileged to witness his bravery and strength through every aspect of his life. Seeing how he deals with these tough times with such grace and contentment is simply awe inspiring. God has blessed me exponentially with the gift of being his mother and walking alongside him through this life.

Many pics will come when we return home.

Monday, April 2, 2012

The heart of the matter


The little guy and I made the long trek to Houston again this past weekend. Others often seem appalled when they find out that we drive this 14 hour journey most of the time when we come out here. In all honesty, driving this trip is much, much easier than flying...it's a whole lot cheaper and a bit less stressful with all the "equipment" the little man needs each day. And after making this long drive quite a few times, it is actually a bit enjoyable most of the time. Nate is the absolute best traveler imaginable. I truly do enjoy this one on one time I have with my sweet boy.

But, these trips are always quite exhausting. I spend most of my days in Texas surviving on ridiculous amounts of caffeine and motrin, prompted by long and often stressful days at the med center or hospital and long evenings spending much needed time with our second family here in Houston. I find solace in watching how much Nate feels at home here. He has been here so many times now that he feels quite comfortable during the entire trip each time.

Please be in prayer for our little guy tomorrow. He will go under anesthesia for a bubble test and potential closure of the ASD in his heart. He is only a little apprehensive, but mostly excited to get his "heart fixed". Surgery time is set for 9:00 and should only take a couple of hours. We are looking forward to meeting the Houston Medtronic rep early tomorrow morning, as his stimulator will have to be turned off for the surgery and turned back on afterward. Nate will be be admitted after the procedure and should spend about a day/night in the hospital is everything goes well. Hopefully we will be discharged Wednesday mid-morning.

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