How to carve a pumpkin

Tebowing

A craze that has hit the likes of those from Florida to Colorado and every where in between

A childhood rite of passage

Do you ever wonder why hotel rooms are so expensive? Is it the lush bedding, miniature shampoo bottles, or curvy shower rod that makes it seem like there is more space in the shower than normal? Is it the incredible view of the parking lot, the 2 creamers they include in the coffee packet, or the fact that you can sleep under 10 pounds of covers and keep the room as cold as you want without having to worry about the increased electric bill?

No. No, it's not. The reason hotel rooms are so expensive is mostly due to our family. Or at least families like ours.

A couple of years ago, we were staying at a really nice and new hotel outside of Macon, GA. Thanks to some Marriot points, the whole stay was completely free. Sah-wheet! Only, about 2 hours past lights-out, Emma crawls on her hands and knees and starts puking all over that nice, plush bedding. And then Abby starts the every hour of upchuck. And it wasn't long before it hit me as well.

Due to the ill state of every little thing about me, along with the somnolent effects of phenergan, I don't remember much else about that stay...only that I was completely confident that anyone within a 1/4 mile radius could smell the odors seeping from the cracks of our room (it was that bad!!) Well, and that my dear, well husband went to Walmart and bought gatorade and saltine crackers for our 4 hour drive home...and apologized to the front desk about the state of our room.

And remember, thanks to good ole' hotel points, we didn't pay a penny on that room.

Yes, we are the reason hotel rooms are so expensive. If I was the owner of the Marriot in Macon, GA, I would have burnt that room...perhaps even the entire hotel...and started over.

Our most recent stay in a hotel wasn't quite as "adventurous". However, within 5 minutes of putting the bags down in any room we are staying, the kids seem to have this unrelenting desire to jump from one bed to the other. Maybe it is because we don't allow this at home...maybe it is because they are so excited to be somewhere else...I don't know. What I do know is that I remember having this exact same uncontrollable desire to jump from one bed to the other in hotel rooms when I was little. It is most definitely a childhood rite of passage.

Wordless Wednesday: Fall Festivities

Random thoughts of a tired mind

I've had either a little virus or a rather small alien attacking my voice box over the past week. It has given me that deep, sexy smoker's voice most of the week that has come in real handy when the kids are in trouble. They seem to respond quicker to a deep voice. I've felt fine...just a raspy voice and the feeling that I have been run over by a Mack truck. I can't tell if the incessant exhaustion is from the cold or from the fact that abundant sleep has been pretty scarce over the past couple of months. Its amazing how little sleep you can get by on when you are stressed out...and how much your body craves that rest when the stress load minimizes.

Seriously though, I have felt like a walking zombie most of the week...or a teenager. They're kinda the same thing, if I remember those years correctly. I have adopted the 80-year old ritual of tucking myself in each night by about 9:00 and have used the cheap babysitter of DVR to my napping advantage more times than I care to mention this week.

Living life a bit on the edge last night by staying up past my new bedtime, I met an out of town friend for coffee at 8:30 last night...decaf coffee. Meeting at a spot close to the university, we were easily the oldest people in the building by about 8 years...and the placed was quite packed. The surrounding conversations consisted of mid-terms, weekend parties, and which dorm that so-in-so from economics lives and how it is so much cooler than "our" dorm. Man, did I feel old.

I was about half an hour early for our coffee date, so I listened to a lot of conversations surrounding me in the mean time. They were all pretty comical. It was quite entertaining hearing the running commentary of the brand new "adults" who sat close to me. Undergrad students are at such a tough age...old enough to make life changing alterations and decisions, but young enough that they are mostly still under the ultimate direction of their parents. Old enough that they are experiencing life's trials and triumphs on their own, but young enough that they still mostly have a net to catch them when they fall. I sat there wondering what these youngsters would be thinking and talking about 10 years from now.

Thinking about those college students a lot today, I realized that my daily thoughts and actions are all over the place most days in my life...wondering why my girls like to keep their favorite undies tucked away inside shoe boxes tucked in their dresser drawers to quickly panicking about not paying Emma's ballet tuition and realizing that my best friend already took it by for me and will remind me when it is due again (seriously, the gal has reminded me when it is time to pay numerous tuitions for various "things" the past few years, and I don't know what I would do without her!). Remembering to wipe the floor beside the toilet due to the young "poor aimer" in the house to getting excited about plunging through the box of candy I hid from the kids on top of the refrigerator. Stacking today's bills on top of the rest that need to be paid and writing a note to "pay bills today!!!!" to wondering what funny face we are going to create when carving our pumpkin this weekend.

I find it enlightening and a bit comical how much 10 years will change you in your youth. As a society, we don't see much difference between the ages of 70 and 80 or 80 and 90...but contrast that to 10 and 20 or 20 and 30, and that is seemingly a world of difference in age. I can't imagine how these college-aged kids will be when my kids are inhabiting the seats that they now inhabit.

Home

Snuggled in between the two side rails of his hospital bed today, my little man snuggled tight against my left side and rested his head on my chest. "I yuv you, Mama!" passed from his lips as I could feel his rhythmic heart beat against my ribs. Unusual tears filled my eyes and spilled over, and all I could do was barely whisper an "I love you too" back.

I am not an overly emotional person. I do not cry on a regular basis. I don't know whether that is good or bad...it's just a fact. I know the stress...the statistics...the pain...the real circumstances of our life as a family...but its just "part of it" to us. I rarely get overly stressed out or emotional anymore.

But there is something about being in the hospital, especially for an extended period of time, that seems to make those tears flow a little freely. I think most of it stems from the lack of sleep and excessive stress...it just puts you over the edge. But part of you looks around at the beige walls, stale curtains, bio-hazard containers, and incessant alarms at all hours of the day and night and wonder "what happened?" And when you get to that point in your stay, its nearly impossible to keep the tears from flowing.

As the girls were all snuggled under the covers with Nathan in his hospital bed today while we were awaiting the discharge papers, Abby asked an inquisitive question: "How many times has Nathan stayed here?" We've been to our local children's hospital countless times...literally, I could never remember how many times we have gone for appts, tests, labwork, and admissions. But for how many times he has been "admitted" to our hospital, the answer was 11 (I think)...and 6 within the past year. We now know most of the nursing staff and everyone else on our favorite "side" of the floor. That definitely makes the stays a lot more comfortable. We have been blessed immensely during each and every stay we have had to make there.

 

Its the little things that make the stay monumental...one of our favorite med students seeing a guy dressed as Buzz Lightyear and specifically asking him to visit Nate...one of the front office clerks requesting that the Florida Gator sports players see Nathan and then repetitively talking about how fun his reaction was when seeing the college students...one of the food service gals peeking her face in with an everlasting smile and greeting to the little man each time she passed by his room...therapy dogs coming for a therapeutic pat on the head...personally made smiley-faced bandaids on old IV sites. Its the little things that mean so much.

Most of the nurses we had this visit were regulars that we have had before, but there was a brand new one we had for 2 days that we instantly fell in love with...she will go far in this profession. She instantly molded into our family of sarcasm and fun and spent a good amount of time tickling and playing with Nathan. The PCAs were equally important, as they brought a special spark and love into our room each time they visited.

 

And we can't forget the entire surgery team that came to see the little guy each day...a team of professionals that we have dearly loved all summer and enjoy each encounter with them. Our surgeon wore a special character tie specifically for Nate yesterday (like he promised him)...a Hulk tie, since the little guy is so into superheroes right now. You can't help but love a doctor who emits laughter from your child by repetitively attacking the kid's face with his Hulk tie...that is someone who truly understands "pediatrics" and how to win the hearts of his patients. We are exceedingly thankful for our team here.

Nate is home tonight. He woke with great energy and little pain. I always know that it is time to go home when he starts to unhook his pulse ox wires and play with the up and down settings of his hospital bed...in other words, when he gets ornery. He walked a lot this morning and visited the playroom twice. Although he was quite exhausted and cranky this afternoon from the morning adventures, it was also a sign that he was ready to be home. 

We realized this morning that the little guy's belly button looked rather angry. The resident looked at it and called the fellow, and the fellow looked at it and called our surgeon. The consensus was that we just need to wait and see what it will do. Nate has been on IV antibiotics all week, so either the abx have been keeping the infection at bay, or it isn't an infection at all. Time will tell. The poor belly button is swollen and a deep red color, but there is no puss, fever, or streaking of color, so we were given the all clear to watch it at home. 

So, we are home and all the kiddos are tucked in bed right now. The Lord has truly blessed us this week. Its good to be home.

Trucking along

Its funny how the days of the week all seem to run together when you are in the hospital. Since we are not doing our normal routine of running the girls back and forth to their regular activities, I have to consciously try to remember the day of the week.

Nafey boy is still par for the course of recovery. His pain is getting less and less...Toradol is still being given around the clock, but he has only asked for "the good medicine" (oxycodone) once today. He has done well propped up more in the bed today and even sat upright for a couple of minutes tonight after I gave him a sponge bath and changed his sheets. He was getting pretty stinky. Additionally, he stood a few times today to use the urinal, as opposed to just laying down and going (one of the perks of being a boy). He was quite sore each and every time I moved him and was pretty shaky trying to stand, but he tolerated the changes of position fine.

We started feeds at a really low rate last night and allowed him to eat whatever he wanted by mouth. The food intake isn't going well, as he just doesn't want to eat, but we have been able to increase his feeds nicely today. He had a bit of retching last night after we started and asked or zofran, but he has been fine today. He has said that he feels nauseous off and on today but that it isn't bad enough for zofran. Each time we increase his feeds, we decrease his D10. So far, so good.

For tomorrow, I hope that we can get him up to 45ml/hr in his feeds and then start working on trying to get his bowels moving again. I think he will be ready to walk a short bit tomorrow as well...he needs to work those sea legs. There hasn't been talk about going home yet, but if everything continues to go as well as it is going, I think that we should be home sometime this weekend.

We had a lot of visitors today, so that made the day go by really quickly. Yesterday, a few of the Florida Gators came to visit Nate through a program they have here through the hospital. He had the privilege of talking to a swimmer and football, softball, soccer, and volleyball player from UF, and he is so proud of the posters they gave him. It was so fun to see his face light up when the fella beside him said he played football for the Gators. And it was equally funny to see their reactions when he told them that his stuffed puppy that rarely leaves his side is named Tebow. And today, he had 2 visits from the therapy dogs that he loves so much when he comes here. One was even able to climb up in bed with him, and a photographer for The Post (a magazine for Shands) snapped pictures of their interaction for a good 15 minutes. There is going to be an article on therapy dogs in the next magazine, and I am anxious to see if they are going to use any of the pictures they took of Nate and Rackley (the sweet dog).

So, everything is going well. The staff here is amazing, as always. I am anxious to see how this permanent stimulator is truly working, but I know it will take time and patience.

My little trooper

Today has been a good day.

I'm tired and a little emotional as the stress of today is starting to have its effect, but today was a really good day. Nathan is doing well as long as we stay on top of giving him pain meds every couple of hours. The poor little fella seems to be in a considerable amount of pain as the effects of his morphine starts to wear off, sending his heart rate soaring and giving him the shakes. Its tough to watch as I wipe his head with a cool, wet washcloth, but his nurses have been amazing at being quick to give him relief. Other than the expected pain he is experiencing, everything has gone very well today. Let me start from the beginning...

We arrived yesterday afternoon, and Nate was so excited to see all of his "friends". As soon as the doors opened onto our floor, Nate ran and jumped into the arms of one of his favorite nurses and started talking his ear off about being at Disney this past weekend. Since it was kinda slow on the floor, he and his "buddy" played superheroes and ipad games in between Chris (his nurse and "buddy") taking care of the needs of other patients. Our favorite PCA was also here, and it was so nice to catch up during the slow times on the floor. I have some really cute pictures of Chris and Jackie playing with Nate that I can't wait to get off my camera when I get home. Other than getting his IV, the little guy had quite a fun time yesterday. The amazing people here definitely make his stays easier.

The attending anesthesiologist came to the room before surgery this morning and spent a good amount of time with us trying to formulate a plan for the anesthesia used in today's surgery. In fact, that was one of many times he came to talk or check on Nate throughout the day...we were thoroughly impressed with him. Due to some bad reactions that were getting worse with each admission, he encouraged us to add sevoflurane as one of Nate's allergies in his medical file...not that he has an actual allergy to it, but that his body definitely does not recover well when it is administered. That's one of the hard lessons we have learned the past couple of months.

This anesthesiologist researched mito and any info on anesthesia in patients with this disease that he could find, and he even tried to call our team in Houston for their input, but they were not able to be reached. His desire to do everything in his power to keep Nate safe and comfortable was heartwarming. We've always had wonderful eagerness and receptiveness from our anesthesia team, but this doctor was even above and beyond what we have previously experienced. He even came by tonight to check on the little guy and tell him "thank you" for being such a good patient. Working with this doctor today was an incredible blessing.

We had a great talk with our surgeon before they took Nathan back to the OR. He said that he recently spoke to the doctor who is essentially the grandfather of these gastric stimulators and was our surgeon's mentor. This ground-breaking doctor in Mississippi implants gastric stimulators in adults, whereas our surgeon is the initial doctor who started implanting them in peds. He said that in speaking about Nathan's case to this leading researcher and doctor in gastric electrical stimulation, this doctor said that he has actually implanted stimulators in a couple of adult mito patients and they have responded very well. That eased all of our minds that Nate was not the first "mito patient" to have this procedure done, though he is seemingly the first child with mito to undergo this treatment. I can not explain how encouraging it is to hear that this treatment has been and continues to be quite successful in a couple of adults with this same disease. Hopefully, Nathan will experience the same results for a very long time.

Surgery went well. Our surgeon tried to do it laproscopically because it is less painful and the risk of infection in lower, but due to Nate's odd stomach angulation and the fact that he is quite a small kiddo, he eventually had to just work through incisions. Nathan came out of surgery and anesthesia better than he really has ever done. Aside from spiking a pretty high lactate on his VBG during the procedure, he did very well.

He's in quite a bit of pain, but our team and nurses have been on top of it all evening. Our surgeon just came by again a little bit ago and ordered more pain meds to keep him comfortable for longer and some IV antibiotics as a precautionary against infection. The little guy has a little bit of a temp tonight, but that could be from the stress of surgery. We'll be here for a few days, it seems. We are taking his recovery slow, as we have seen in the past that pushing him too quickly causes more problems. Hopefully the little man will start to perk up in a couple of days.

Thank you all so much for your prayers. I am constantly amazed at how God blesses Nathan with the amount of strength and courage that most of us can not fathom. Its a humbling experience to see God's grace seeping through the heart of your child. Our sweet warrior is an amazing blessing in our lives.

Friends becoming like family

It continues to amaze me how God places people in our lives at the perfect times that will become incredibly influential in many aspects of our lives in many different ways...and we don't even realize it at the time of the initial meeting...

At the end of last year, I was made aware that a family that I had kind of known from an online medical forum were coming to our city for an experimental treatment for her daughter's severe gastroparesis. We met and took them from their hotel to their first appt with a surgeon that we had never met or even heard of but would later become an integral part of our son's life...little did we know what was to come.

When the daughter, who shares the name of our oldest: Abigail, was hospitalized for an extended time in January/February, we took the son (Noah) under our wings and into our home during that time because he could not spend the night in the hospital. He quickly became part of our family.

Looking back over that time when the Millers were introduced into our lives, I am amazed at God's hand in our meeting. You see, Abigail was having a new treatment implemented...a temporary and later, a permanent gastric stimulator placed. Her mom and I talked extensively about the ins and outs of this new device and treatment, and we literally walked this journey with them during the weeks they "lived" in our city. Although Nathan and Abigail shared the same diagnosis of gastroparesis, this treatment was seemingly only used on kids with idiopathic and viral-induced gastroparesis at this time, so I knew he wasn't a candidate for it. I never ever imagined that just a few short months later, we would meet the exact same surgeon for a tube placement, and that surgeon bring up the possibility of trialing Nathan with the gastric stimulator. I never expected to have that same opportunity.

Its amazing how God prepares you in intricate ways to tackle the trials of your future.

The Millers made another trip to Gainesville a little over a week ago. Unfortunately, Abigail's permanent stimulator has failed...a physically and emotionally taxing phenomenon that we know can happen for reasons no one truly knows. Our surgeon has said that it seems to happen after a really bad virus or for unknown reasons in his very few kids who have more going on than just gastroparesis (meaning a different disorder is causing the paralysis of the stomach). We know that Nathan is at an increased risk of not responding to the permanent stimulator...or responding for a while and losing that response. This is what happened to Abigail. She initially responded and then lost the response after a few months and after a tough virus.

After implanting a temporary stimulator again to test the response of the leads placed in the mucosa of the stomach as opposed to the outside of the stomach with the permanent placement of the leads, Abigail started responding again. This is the second patient of our surgeon who has done this, and it has prompted he and the doctor who essentially created the GI stimulator to start the works of creating a new permanent gastric stimulator where the leads are able to be placed in the mucosa of the stomach. Hopefully, this new way of placing the permanent stimulator will be in the works in a few months.

Anyway, we had a great week with the Millers. It was a wonderful time of  reconnecting and talking about anything and everything under the sun. I genuinely love her kids and enjoy having her, Abigail and Noah here with us. My Abby and her Abigail have become very close friends over the past few months, and Nathan looks up to Noah as a big brother and loves every little thing about him. I thoroughly enjoyed having another mother who understands the details of raising a child with multiple medical complications and "gets" the unusual workings of this gastric stimulator. This week was much needed for both of us, I believe. Please be in prayer for Abigail. The temporary stimulator will only last for about a month before the leads become dislodged, and when that happens, she will have to stop eating again and rely on j-feeds for nourishment until she comes back for another temp stimulator...this scenario will continue until the docs are able to figure out how to create the new stim.

And speaking of this, Nate will be admitted to Shands tomorrow and have the permanent GI stimulator placed on Tuesday. His response to the temporary one has been amazing to witness. We are quite confident that the leads of this last temporary stim came dislodged on Wednesday, prompting his symptoms to come back with a vengeance. The poor guy vomited 4 times on Wednesday and has done the same at least twice a day since then, along with lots of retching, pain and quite a lot of bloating. The sudden onset of symptoms always gives us peace of mind that we are making the right decision for Nathan...its literally incredible to see how well this has worked. We pray that the permanent placement will work just as well.

Octoberrrrrr

Halloween is always a fun time around our house. Once the magazines start piling up at the first of August, the kids are all on a quest to find their perfect costume of the year.

 Like this weekend, we usually try to visit the Disney's Not So Scary Halloween Party one evening to have a fun night of family togetherness. The kids love to dress up for the event and ride all the rides in their costumes. It seems that there are several opportunities for them to be costumed up and having fun over the course of the next month.

 

 Early in the summer, Nathan kept insisting that he wanted to be his surgeon for Halloween. Nate has attached himself to this doctor in a way that he hasn't with any other doctors we have...he simply loves this dear man. I think it is because he gets down on Nate's level and actually plays with him. All of our docs are friendly and sweet, but none treat Nathan quite the way this one does, and it has formed a bond between the two of them. 

So, when it was time to order costumes, Nathan flipped right past the super hero costumes and Toy Story and Transformers and said he really wanted to be his surgeon. The outfit was simple enough, except for one special request from the peewee surgeon...that he must have "a beard" (actually a goatee) like his beloved doc. After a little searching, the ensemble was complete. He, perhaps, may be the cutest little surgeon I have ever seen.

This is always a fun time around here for the next month...festivals, carnivals, trick or treating, and the air cooling off just a bit so that it isn't quite so stifling. We are all looking forward to our evening at Disney...a time of fun and carefree attitudes before the chaos of next week unfolds.