A few weeks ago, I had requested for prayers for Marek from Canada, who was battling a failing heart. Tonight, I just learned that Marek passed away. His mother, Cathy, labels his passing not as an end, but as a beginning of a new journey. Please find a moment in your busy day to say a prayer for this family as they embark on this new journey.
Coming soon with pictures and stories. Love my Nathan, he’s getting big! He’s still into firetrucks, cars, and trains.
Here’s a quickie: Nathan found a tambourine somewhere on the ground, and quickly ran with it to find Loi.
N: Papa, where are the wipes?
L: Uh, let me see. Why do you need wipes?
N: Because I have to clean this for Pee Wee so he can play with it.
We have made it a habit to clean every single toy with an antibacterial wipe before allowing Justin to play with it. Nathan is learning as well. Really, though, how sweet and cute is this! He also sanitizes his hands before touching PeeWee (when he’s in a good mood), and gives strangers the evil eye if they crouch in to touch Justin. It may not seem like it, but Nathan is very protective of his brother.
Another quickie: While at the electrophysiologist’s office, Nathan noticed the nurse producing a pulse/ox, and a cuff from the little cart that carries the blood pressure machine. The moment he realized the nurse was putting the cuff on Justin, he looked at me and said in an uncertain tone, “Mommy?” The nurse and I quickly explained to him that she was not going to hurt Justin. I tried my best to tell him what was going on at each step of the way. He was much more relaxed for the rest of the appointment.
Nathan is really growing up.
*I haven’t been taking pictures. But, I do have some cute ones I’ll be uploading in the near future.*
Justin Update:
Justin’s Doctor’s Appointments:
Electrophysiology: Justin is using his pacemaker 90% of the time, up from 80% of the time from 6 months ago. His electrophysiologist is not too concerned about this because either way, he is using it pretty much all the time, and he still has his own underlying rhythm. If something were to happen to his pacemaker (i.e.; lead breaks), he’ll show symptoms of lethargy and limpness before his heart would completely stop. So, we would have time to call the docs or take him to the hospital (in theory :)).
This stuff seriously is way to complicated for me to even begin to comprehend. What I’d like to know is if being on the pacemaker would eventually make his body completely dependent on it that his own rhythm would go away. Does that even make sense? I’ll ask this at our next check up in 6 months.
Whatever the answer is, I suppose it does not change the fact that Justin needs the pacemaker. All I can do is pray for his heart to miraculously heal so that he doesn’t need it anymore.
Upcoming Events:
Another one of Loi’s cousin’s wedding on Thanksgiving weekend. Another reason for all of us to get dressed up, again. We already have a mini tux picked out for Justin, and a pin striped suit picked out for Nathan. Yes, my little darlings will be stylin’.
Justin and I met with ID to discuss his aplenia and a fever plan.
Meeting with the ID doc helped clarify my main concern of what to do when Justin develops a fever. We discussed how to get through the ER without having to wait if Justin develops a fever (by announcing that he has NO SPLEEN), what to expect at the ER (blood must be drawn for a blood culture and an antibiotic injection must be given to protect him over the next 17 hours as the culture grows to show if he has an infection). After giving him the antibiotic injection, we would be sent home to wait for the results. If there is an infection, he would need to be admitted to the hospital for treatment.
Of course, the ER is secondary to the doctor’s office. If we’re able to get to the doctor’s office, we should do so first. The same procedure would be done at the doctor’s office.
He urged us not to treat Justin with Tylenol or Motrin to reduce his fevers. Justin’s ability to produce a fever is like a smoke alarm telling us there’s something going on in his body. He does not want us to turn this off with medicine. It is crucial that he is seen right away when he does develop a fever so that the doctor can take the necessary precautions. It is also important to watch how his fevers develop. The fever should always improve, and not spike upward (let’s say from 101-104) in the course of 4 days. If it does, we need to report it to either him or his pediatrician.
I asked if the fever itself could harm Justin. He answered no. There are some children who develop febrile seizures with high fevers, but that does not necessarily damage a child and his brain.
Because Justin is up-to-date with his immunizations (minus the Hib booster and MMR), and is on a prophylactic amoxicillin, he is protected from the main forms of encapsulated bacteria, mainly, pneumococcal, meningcoccal, and influenza. However, not all. Prevnar (vaccine for pneumococcal) protects him from only 5 different strains.
The ID doc made a point to say that 99% of the time asplenic children develop fevers, it will not be a result of an infection. But, for that 1%, we must be careful all of the time. He stresses that once the child has an infection, and we do not take the necessary measures to care for him, he can go downhill very quickly.
This doctor is much more aggressive in his treating method than the other (not ID) doctors that I’ve encountered. As I listened to him, I understood why. During our meeting, he explained that he has been in the business for 17 years, and he’s encountered 2 asplenic children who have contracted an infection…one didn’t make it through. His perspective is that unless a doctor’s experienced how it’s like to treat a child, and watch a child with no spleen fight a bacterial infection…and see one not make it…they will not understand why it is important to be aggressive from the get-go with treating these children.
With that said, he also acknowledged how “intelligent” our pediatrician is, and will understand if he has his own method of treatment. Although the ID doc’s method is “extreme,” according to him, he’d rather be safe than sorry. But, each doctor will have his own opinion.
We also discussed Justin’s immunization schedule which he will dictate and send a copy to our pediatrician. He explained that Justin will be on amoxicillin until he’s 5 years old. Between the ages of 5-17, his immune system will still be weaker than normal, but strong enough to fight off the bacteria, so, he does not recommend the amoxicillin during those years. If he does develop a fever, then we are to take him to the doctors or hospital right away. The course of treatment at that time will depend on how he is from a clinical standpoint, and we’ll discuss further as we approach that point. By around 17-20 years old, we can worry less, though the risks are still there. His body, by that time will be a little stronger (not taking into account his heart condition).
He gave me a copy of his “bible” that he refers to on treating asplenic children (photocopied pages from his reference book) that he told me to give to every single one of Justin’s doctors, and all those who are treating him. He asked me to bring it to the hospital as well.
I am grateful for having met this doctor. He had great compassion and imparted me with more knowledge than I had before meeting him. I hope by sharing it with all of you, you’ll gain a better understanding, and encourage you to ask more questions.
From the beginning, doctor after doctor have shied away from having discussions with us about Justin’s asplenia. I would ask, and they would tell me that it’s not a big deal, essentially. According to them, the immunizations and amoxicillin are enough to protect him.
Perhaps it is part of my nature to always want to know more so that I can prepare. I was on the brink of annoyance with the brush off, but really pushed the issue and was referred over to infectious diseases by Justin’s cardiologist.
Will all this information and fever plan completely shield my child from harm’s way? No. Does it allow me a better understanding of how to care for and protect my child in the best of my ability? Yes.
I’m a mom, and I’m just trying to do my job.
We ended the meeting with the ID doctor telling me this: “The best way to protect your child is to have a good mom. And, you’re a good mom, a terrific mom. Keep him up to date with the immunizations and keep up with the amoxicillin. He’ll be fine.”
I don’t like being called “super mom” or being told how great of a mom I am (because I’m not. Let’s face it, we all have our moments). But, from him, I’ll take that remark as a compliment because it is coming from a medical professional who acknowledges the role of a parent in her child’s care, even if she’s not a doctor. Thanks, Doc.
Nathan crafted his artistic pumpkin at a friend’s birthday party.Â
I’ve been MIA lately because Nathan’s been sick. He even missed out on his class Halloween celebration (that included him participating in a parade don in costume and everything! Boo hoo.) He caught some virus that caused his fever to go up to 103 degrees, stomach aches, and vomiting. According to his ped, it takes about 3-4 days after he’s contracted the virus for symptoms to show. First thing that came to my mind was JUSTIN!!! Of course, I was worried sick about Nathan, with him being so groggy and miserable and sedentary…so unlike his usual self. But, the thought of Justin having to go back into the hospital made me even sicker…intubation, IV’s, poking, prodding, and who knows what else…you know how it goes.
I hoped and I prayed.
Two days go by, and I thought we were in the clear. Justin had a little cold that he was getting over, but other than that, he was his usual happy self. Then, at 1AM Saturday, out of no where, Justin wakes up vomiting. Not once, but repeatedly. Loi and I were freaked out! I kept him upright, watched a little TV with him, fed him pedialyte and water. Two hours go by, he seemed to calm down with the gagging, and we put him to sleep. We contemplated going to the hospital, but used our best judgment, and decided not to. It was a weekend, in the wee hours of the morning, and while Justin was vomiting, he looked, and acted as usual. He did not seem to be under much distress. We tried to keep him hydrated the best we could until morning.
Justin was being watched and cared for from above.
We made it through Sunday with purely pedialyte, water, and some solids. By Monday, he was back to formula and his usual pureed diet.
Nathan took a little longer to recover. In fact, his temperature went up that Monday night to almost 104, and he continued to complain about his stomach pains. I was worried that it was some sort of bacterial infection. With some rest, and more fluids, by Wednesday he was back to his rambunctious self…you know, the one that causes tornado like destructions throughout the house?
Today, Nathan enjoyed a game of rolling his CARS and Bob the Builder vehicles through “mud”, aka, Playdoe.Â
With all the sickness going around, though, they both had a little opportunity to celebrate halloween and went trick-or-treating.
Nathan pointing out where he’d like to go next as Justin hangs onto his Kit Kat and Crunch bar. The Kit Kat was the first candy he received and refused to let go of it. When I asked for it, he brought his hand behind his back with the intention of hiding it from Mama.
Justin as a football player because it was cold out and his dinosaur costume was a little dirty. I don’t think anyone knew what he was supposed to be, but gave him candy anyway because he is so darn cute!
Fireman Nathan enjoyed a few rounds of MarioKart at his Grandma’s house after trick or treating.
Justin at physical therapy dressed as a floppy eared cat with sequined ears…too cute, couldn’t resist!
Justin the Dinosaur. Enough said.
 Until next time, I hope you all enjoy the change in seasons! I certainly am loving the cool, crisp air of Autumn that is now upon us.
Little Marek, a little boy with heterotaxy and several heart defects, is fighting for his life in Canada right now. He just had his catheterization today that showed his pressures are too high for the Glenn or a transplant. Please pray for him, and continue to believe in miracles. Follow his blog here.His mother and I met through the blogosphere while I was battling with Justin and his issues during the first open heart surgery (BT Shunt). Though we’ve never met in person, or have even heard each other’s voices, we share a bond that is unique to those to have children with CHD. Her heartache is like mine. Please pray for her and her family.Â
