A Christmas Story of Hope

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My Christmas story is one of hope, but regardless a sad one. I have never displayed a personal story on any of my websites, but this one leaves me wondering the future of my newborn nephew.

I myself have a newborn son, a little over two months old and have been so excited to also be welcoming my first "baby nephew". I have a niece and nephew, twins, now through marriage that I am extremely proud of, but didn't come into their lives until their 11th birthday. So I know what it is to be a proud uncle, just not to watch them grow up gradually.

My sister is seven years younger; however, life's events have us having our first children at approximately the same time. Her original due date was December 25th until she got the news at a routine doctor's visit. Everyone who has had a child, and I only know this from recent experience, has felt the dread of each visit waiting for the "everything looks okay" from the nurses and doctors.

About two months prior to her son's birth, she and her husband were alerted of a possible heart defect. The next sixty days were filled of up and down news of possible hurdles and complications. Future visits brought things to a more positive note when less invasive surgery was suggested.

Originally, a series of open-heart surgeries were described as the most likely actions. One at birth, another at 6 months, and most likely one at four years would all ensue along his path of childhood. Too many memories of my sister in the hospital for birthdays resonated in my head. These occurrences were totally unrelated to these reasons, but ironically relevant.

This particular heart defect has been ruled out as a genetic carrying issue and simply one of chance. It is incredibly rare, but not the rarest either. Therefore, doctors have been performing surgeries of this kind for some time, just not as routinely as one would like when faced with this dilemma. However, living in the vicinity of one of the most renowned children's hospital in the world has given my young nephew the best of chances.

One week ago this past Wednesday, young Caleb had his first surgery, the less invasive one. Although the surgery was a bit more difficult than the doctors anticipated, it was a success; in what it intended to do, just not a success in curing Caleb's issue.

This surgery was a cardiac catheterization whereas a small plastic tube is inserted through an artery or vein in the leg and routed upward toward the heart. In this case it was done to poke a hole through the blocked portion to allow blood flow more efficiently to the rest of the body. In Caleb's situation, this did not create a sufficient opening. Surgery two, back to the original game plan, was eminent.

During the recovery period, one of young Caleb's legs began to turn blue. Lack of blood and oxygen to the leg could cause irreversible effects, including fears of things I won't mention as it turned out okay. After the doctors provided blood thinners to my newborn nephew, color returned to the leg after a few hours and all was okay.

A week has since passed and although numerous little hiccups have occurred, we await the scheduled surgery. One such hiccup was a feeding tube was inserted unnecessarily, as a matter of fact against explicit orders that one should not be used. Others have been minor infractions such as nurses taking away and replacing the breathing bucket, as it has been called from members of our family, at incorrect times. Sometimes nurses would replace it right after one just removed it, all against the documented orders.

This second surgery is a bypass surgery to allow Caleb's blood flow to bypass the solid mass which currently prohibits his blood from supplying his body with the necessary life he needs. It will take place in a matter of minutes from this article release.

If the heart is not functioning properly, how is he surviving you might ask?

Caleb has been able to survive to this point due to medical marvels. When a fetus relies on its mother for nutrients and fluids, there is an open valve that allows free flow from mother to baby. Normally after birth that valve closes and baby takes on life of his/her own and begins to breathe and pump blood under its own power. When a baby suffers from a defect of this kind, medicine is given to keep that valve open.

Earlier this week, Caleb was taken off of the medicine to see how he would do on his own. The risks are that if he cannot handle it, he could go into cardiac arrest and have to be revived immediately while reissuing the medicine. Caleb did start to show significant stress when this test was given and he was reissued the medicine immediately and did not suffer any of the possibly harmful side effects.

Now, the big wait. Surgery will take place today and hopefully I will be updating this posting with good news. He is being given a 95% success rate for this particular surgery, but a less than happy road ahead.

For the next 9 months, he will have to be monitored closely, and yes including that second surgery. At every sign of a cold he will have to be taken to the hospital immediately for treatment. No treatment for even the simplest cough or sneeze should be done at home.

He is not allowed to attend daycare under any circumstance during this nine month period. I imagine my sister will have to take a prolonged absence from work. They have recently sold their home to move into a slightly larger one as they did not have a bedroom for their newborn son. It is unknown at this time as to how both situations will pan out.

I have never done this in my ten years as a webmaster, but this article closes with requests of any donations you see fit to help out my sister. $1, $2, whatever is possible will all be given directly to her as a sum along with a card with each name of the donating.

To those that cannot donate, your prayers are appreciated. I am not a religious person myself, but my sister and her family are regular church goers.

This article will be updated periodically with a status of Caleb and the donation tally (which starts at $100 for my donation to this campaign - of course my wife and I have already given much more in items they will all need during the recovery process).

All webmasters interested in sharing $5 will be given a link for the entire 9 months of Caleb's recovery. Also make sure to notate that on the donation submission.

Thank you all ahead of time for your help.

Donation Tally

$220

Placeholder for Caleb's Updates

I have decided to place the updates below the donation links as I am very appreciative of the support. The first donation amount will be given to my sister at our family's postponed Christmas celebration just for Caleb upon his hopeful arrival home.

Link to this article:
<a href="http://www.allaboutchristmas.info" target="_blank">A Christmas Story of Hope</a>

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Caleb's Updates

Friday, Dec 28th 8:18 PM EST
Just arriving home from the hospital visit, I am happy to announce the surgery, overall, was a success. I state overall for this reason, adding to the unbelievable nature this develops to be.

Doctors came into the waiting room shortly after surgery had been completed. They began to explain the complications that took place during surgery. I will precede this, as they didn't, with the fact that surgery had an end result anticipated by the surgeons, which is great news.

Apparently the assisting, whose only job it is to initiate medicine distribution, made a mistake in his calculation of the much needed epinephrine. In this case the drug was used to thin the blood as I understand it. Thinning the blood during this procedure allows for the free blood flow through the newly inserted shunt. As the body recognizes the foreign object, it tends to clot the blood surrounding it as a reaction mechanism. Caleb was given ten times, that's right 10 times the dosage requested by the leading surgeon.

This caused an abnormal thinning of the blood for this case and preventing them from closing, as the blood would not clot properly now for the closing of the wound. Therefore, additional medicines had to be issued to counteract this effect. Numerous attempts were made until the appropriate clotting was taking place.

This of course added to the growing situation of "what could happen next".

In short, for now, Caleb is doing okay. The next 48 hours will be used for close monitoring of oxygen levels in the blood. I will be sure to update the situation upon hearing more news.

Monday, Dec 31st 11:42 AM EST
Prognosis is very positive but seeing Caleb at this stage is tough. No one has wanted to take pictures of him like this. He once had a full head of hair, but now half is shaven to insert a tube. There are additional tubes directly into his neck and into his leg.

The tube into his leg is in case of complication. If the neck tube were to close, medicine would need to be injected immediately. Therefore, right now he has tubes everywhere, all necessary but troublesome to imagine.

Caleb is also sedated as he has been since surgery. Doctors want to minimize movements so to limit any entanglement of these multiple tubes. His eyes barely open because of this and his face is still quite swolen, however due to the positive prognosis, we all know he will be coming home soon!

Wednesday, Jan 2nd 10:55 PM EST
Not the best news...Caleb's breathing tube was taken out yesterday but had to be put back in this morning. His limbs were turning blue and they identified his lungs as partially inflated.

Later we found out that this was due to excess fluid in and around his organs. They are draining the fluid and will try again to remove the breathing tube tomorrow. The goal here is to get him breathing on his own, obviously, so we are hopeful tomorrow will bring better success.

Wednesday, Jan 9th 2:18 PM EST
Caleb is now in his own room, but we aren't sure that is a good thing. Most wires and tubes are out of him, so he is looking healthier from that fact alone, but nowhere close to out of the woods yet.

The current issues are that he is in a room with one other child the same as an adult would be recovering. Nurses' rounds are every 4 hours for check-ups. While visiting, the accompanying child cried for 30 minutes prior to a nurse entering to check.

Yes, hospitals in this country are overcrowded and nursing staff is low, however for a child with issues breathing on his own, this becomes of great and obvious concern. If Caleb were to cry for 30 minutes without attention, breathing would be a difficult multitask.

My sister is remaining there, or has until this point, to be a manual alarm in case Caleb needs the attention. Updates to come..just awaiting for him to come home!

Monday, Jan 14th 9:58 PM EST
There have not been many updates in the past week. His feeding has been slow which is preventing him from coming home. Since he is still so young and been fed through tubes his entire life thus far, his natural feeding instincts are not present. The only requirement is that he keep up 75cc of formula down so he can proceed home. However, the feeding tube will remain.

Now that he has been stabilized, a revived attention is being given to the fluid in his head. The fluid does have some blood and is surrounding his brain. Some doctors believed this is caused by the earlier overdose during surgery, however, others have opposed that thought. Regardless, they do not know how it will affect his learning. They are in hopes that the fluid will subside within a month.

For now he remains hospitalized with my sister and brother-in-law by his bedside.

Monday, Jan 21st 10:58 PM EST
Wow, the little guy finally came home tonight. He is finally taking his bottle and if all goes well, could have the feeding tube removed if he continues this path.

Nurses will be visiting periodically I believe and now it is just watchful eye time. Hopefully all will go well in the weeks to come.

Friday, Jan 25th 10:50 AM EST
The road continues to wind...and the next surgery is inevitable. The hope was that the shunt that was inserted would take pressure off of the heart. Since the heart is a muscle and was overworked during his growth inside the womb, it becomes partially enlarged (in his case just on one side). With the release in pressure the muscle would hopefully reduce in size from the natural process of atrophy. This has not happened.

Therefore, he will have to endure another surgery in the immediate future. This will be an actual open-heart surgery where they will attempt to cut away portions of the enlarged side of his heart, reducing it to normal size.

This surgery will take place within the next week or so.

Monday, Feb 11th 10:41 AM EST
A long list of updates...first the reasoning behind the lapse was that some of the original surgeries were postponed. Since the last update Caleb went through another catherdization in an attempt to open things up a bit better and preventing the open-heart surgery. It was successful in that in that the surgery completed, however, did not come with the full outcome they wished for.

The open heart surgery took place last Thursday at 7AM and also was a successful surgery in the fact that they were able to open the valve more and close the shunt partially to prevent any overflowing. However, this did not ultimately meet the needs and they had to go back in for a third surgery this morning to open the shunt back up.

I also need to make a clarification (remember I am getting some of this info secondhand). They did not actually trim any of the muscle away. That procedure is done when the issue arises on the left side of the heart, however this is on the right and has a different and more complicated, therefore more risky, muscle construction.

As of this morning all is well, besides some mass swelling from three surgeries in a week.

Monday, July 28th 10:00 AM EST
This is actually a post of thanks to all that have shown support via emails, etc. Caleb is 7 months old and went in for his routine checkup today at the hospital. Although the doctors would always like to see more improvements, he seems to be doing well (considering). There is more to come, but for now they have elected to hold off on any additional surgeries (well, immediately). They anticipate if he maintains this recovery path, that his next surgery can be held off until he is 4 years of age.

They will continue to monitor him as they have been to this point for learning disabilities and growth abnormalities.