Well, we almost made it a whole year without Nick receiving a shock from the ICD. ALMOST.
Yesterday, March 14th, his heart fibrillated again. Enough that he needed to be shocked. He wasn't doing anything that he shouldn't have... just walking around. The last time this happened was March 17th of last year.
It was fairly early in the morning, around 8:00 or so, and all of a sudden his heart must have gone into the fibrillation and he passed out (thankfully) & was "therapied". He hit his eye on the floor somehow so he has a little pink mark there, but otherwise wasn't injured. Josh sent a medtronics reading to PCMC and then called an hour or so later to see if they had gotten it. Because it was Saturday there wasn't someone there who could read it immediately, so they had to call someone in. They called Josh back a couple of hours later and asked some questions, then they instructed that we bring Nick to the hospital on Monday. There was no one there to schedule a time, and they're probably full already, but they said to bring him in and they WILL WORK HIM IN. So... That's the plan. I'll head down to SLC with the boys and we'll see what they find out and if there's something that they want to do.
Who knows? Maybe we'll spend St. Patricks there... We haven't been AT the hospital for that holiday yet.... =)
Sunday
Tuesday
We made it back from SLC, and overall I would say the trip was a success. We learned that Nick is using his pacemaker about 15% of the time; that his battery still has a good charge to it; that he is having VT (ventricular tachycardia) several times a day~ but that it's lasting only about 2 seconds or so at a time; and that we'll need to schedule a time to go back for another heart catheterization so that they can administer some adrenaline to his heart while he is sedated and put his heart into fibrillation on purpose to check whether or not the defibrillator is functioning properly, and if it isn't they will be there to rescue him from the fibrillation and correct any problems. The reason that this would be necessary is because as he grows, the leads that are screwed into his heart are being moved around a bit and in order for the ICD to work, the leads need to be in just the right spot. And now we're back, and if all goes well, we wont need to go back for SIX MONTHS!!
Nick was delighted to see Dr. Cowley (of course), and was treated wonderfully while we were there (of course).
I am always so impressed with how out of their way the staff at Primary Children's Hospital goes to light up these little one's days. It truly is a place where Angels walk.
Thursday
Well, as usual, we're headed down to Primary Children's to spend another holiday. : )
Nick is scheduled for just a check up this time-just your basic echocardiogram, ekg, x-ray and visit with the doc~ thankfully. And actually, he's pretty excited to see Dr. Cowley-- Halloween or not. In fact, instead of worrying about going trick-or-treating and showing off his Batman costume he's been telling me repeatedly that he wants to take Dr. Cowley a trick-or-treat!
Luckily, Paul and Andrew aren't too bothered about making the trip either, and we plan on doing a little candy-gathering in Utah.
Wednesday
Tuesday
Ask the Mayo?
After 8 days (and Easter) at PCMC we finally came home. There just was not much that they could do for him there besides try MANY different doses of this new medicine and watch him. His sweet little body did not know what to do with it. Too small of a dose and it did nothing, to high of a dose and it did FAR too much. Days of trial and error and we think we landed on an OK dosage but it must be given every 8 hours.
They approached the idea of a heart transplant (again) but we still don't want to do that, so that's out. They were also thinking about another possible surgery, but they needed to talk with Nick's regular cardiologist, Dr. Cowley, first and get his input and he was un-reachable for about a week. When they did finally consult with Dr. Cowley, he wanted to get another opinion from the Mayo Clinic in Rochester, Minnesota. Long story short, the Mayo felt that doing another open heart surgery would be worthwhile and they suggested trying to remove the entire tumor. Dr. Cowley again consulted with his colleagues and with us and we came to the decision that another surgery would not be out of the question, but that we should do some major information gathering first to see if it was really necessary at this time.
At the end of June we headed back down to Primary Children's Hospital for some tests/information gathering. In one day Nick had an Echocardiogram and EKG, and then a Heart Cath Lab (considered to be major surgery I was told), a CT scan, and an Angiogram. Then 6 hours of recovery and we were discharged.
As it turned out, our Wonderful Dr. Collin Cowley let us know that so far as the tests were showing, Nick is doing amazingly and surprisingly well! Although he has strains on his heart from crazy beating rhythms (bradycardia's and tachycardia's--arrhythmia's) the new medicine that they put him on in March (called Sotalol) is apparently working well. Also, Nick's heart is compensating for whatever reason. (I would say for God's Reasons).
The Lord is SO good to us. And we are so THANKFUL for his mercies upon us and our family!
They approached the idea of a heart transplant (again) but we still don't want to do that, so that's out. They were also thinking about another possible surgery, but they needed to talk with Nick's regular cardiologist, Dr. Cowley, first and get his input and he was un-reachable for about a week. When they did finally consult with Dr. Cowley, he wanted to get another opinion from the Mayo Clinic in Rochester, Minnesota. Long story short, the Mayo felt that doing another open heart surgery would be worthwhile and they suggested trying to remove the entire tumor. Dr. Cowley again consulted with his colleagues and with us and we came to the decision that another surgery would not be out of the question, but that we should do some major information gathering first to see if it was really necessary at this time.
At the end of June we headed back down to Primary Children's Hospital for some tests/information gathering. In one day Nick had an Echocardiogram and EKG, and then a Heart Cath Lab (considered to be major surgery I was told), a CT scan, and an Angiogram. Then 6 hours of recovery and we were discharged.
As it turned out, our Wonderful Dr. Collin Cowley let us know that so far as the tests were showing, Nick is doing amazingly and surprisingly well! Although he has strains on his heart from crazy beating rhythms (bradycardia's and tachycardia's--arrhythmia's) the new medicine that they put him on in March (called Sotalol) is apparently working well. Also, Nick's heart is compensating for whatever reason. (I would say for God's Reasons).
The Lord is SO good to us. And we are so THANKFUL for his mercies upon us and our family!
Another holiday, another shock.
I guess we'll have an easy way of remembering what day's Nick has shocks from his ICD.. Holidays. He received another shock yesterday (St. Patricks Day). This time he was awake again, and felt it. NOT GOOD.
We called the cardiologist at Primary Childrens Hospital, and it looks like we'll be there for the next few days, starting tomorrow, to try to change heart medicines and see if it makes a difference. The new medicine they want to try is apparently a stronger medicine, but also more dangerous, so they need him to be in the hospital while they put him on it.
He seems ok now, but he for sure is aware of what happened. That stinks. Nobody, especially a tiny little 3 year old should feel 35 joules of electircity slammed into his heart. He continually amazes us. We are so blessed to have him!!!
We called the cardiologist at Primary Childrens Hospital, and it looks like we'll be there for the next few days, starting tomorrow, to try to change heart medicines and see if it makes a difference. The new medicine they want to try is apparently a stronger medicine, but also more dangerous, so they need him to be in the hospital while they put him on it.
He seems ok now, but he for sure is aware of what happened. That stinks. Nobody, especially a tiny little 3 year old should feel 35 joules of electircity slammed into his heart. He continually amazes us. We are so blessed to have him!!!
Saturday
Leap day
Leap day now means more than an extra day in February at our house. On Feb. 29, 2008, Nick received his first "therapy" shock from the ICD (outside of the hospital). Nick was standing in the front room watching a kids show on TV with Paul and Andrew, Josh and I were in the other room and all of a sudden we heard a thud and then a second later some crying. Normally this wouldn't alarm me too much because boys are boys and there are noises and cries, but it was a one person cry (which usually means 2 boys are NOT just arguing) and that's what alarmed me. I ran in to investigate and found Nick on the floor crying. I picked him up and probed 6 year old Paul for answers. Apparently Nick was just standing there and suddenly fell. He hit his mouth on the table (or maybe bit his lip?)and was beginning to bleed. I asked him if he had received a shock (from his ICD) and he said no. He told me that his head just wasn't feeling good and he fell. Josh and I suspected that he had passed out and then been defibrillated by the ICD so we took him to his room and manually sent a Medtronics reading to PCMC and called cardiology at the same time. Sure enough, according to the reading, Nick's heart had been beating 400 beats per minute. (that's not a typo) His heart went into ventricular tachycardia and fibrillated and caused him to pass out and receive a shock. (He only didn't feel it because he was unconscious.)Since we're 3 hours from the hospital and he seemed to come out of it OK, they told us to up his meds, keep an eye on him, and send them some more manual readings more frequently.We are so thankful that Nick has this pacemaker/defibrillator in. That situation could have been fatal. So often we feel so bad for him that he has to have it in him because it's awkward and protrudes, is unattractive, and a little painful for him, but on a day like yesterday... you think of it differently.I tried to explain what had happened to him and then later asked him if he could tell me what he thought had happened. This was his sweet little 3 1/2 year old reply:
"My heart was beating really fast. It made my head get really tired like this." (he lay down on the floor with his eyes shut tightly)"My little computer said 'Hey! Wake up!' and my heart said 'Oh! I better get back to work!'"
That pretty much sums it up. So not only was it a calender leap day, but a day that Nick's little ICD had all of our hearts leaping!
"My heart was beating really fast. It made my head get really tired like this." (he lay down on the floor with his eyes shut tightly)"My little computer said 'Hey! Wake up!' and my heart said 'Oh! I better get back to work!'"
That pretty much sums it up. So not only was it a calender leap day, but a day that Nick's little ICD had all of our hearts leaping!
The ICD
In November of 2007 Nick was at PCMC for a scheduled check up. Things seemed fine. We came home. About 10 days later Our cardiologist, Dr. Cowley called us and told us that some of nicks EKG/holter monitoring results looked very... sporadic... spastic... irregular. He told us he wanted Nick back down in SLC in a week for a heart Catherization to see if there was something that they could do to make it more regular.
It was a general anesthesia thing, and they sterilized the room they used just in case they needed to use it as an operating room. (comforting thought?)
The procedure was supposed to take anywhere from 1-4 hours. At 6 hours they told us that when they had given Nick's heart tiny dosages of adrenaline type drug it fibrillated a few separate times for more than a few seconds. They felt that it would be in his best interest to implant in him a cardioverter defibrillator (pacemaker/defibrillator). Since he was already there and under anesthesia, they suggested doing it then. So, 4 more hours later little Nicholas was wheeled out of the "operating room" and up to recovery.
It was kind of amazing. 1 1/2 years prior to this, August 2006, Nick had been scheduled for this exact surgery. He had been prepped for surgery, had all the tests done and was ready for the word "Go!", when Dr. Cowley spoke with me and told me that it was a hard thing for him to tell me, but that he just didn't feel right about having the surgery done. For months the team of cardiologists (and we) had been planning on this surgery. Dr. Cowley asked me if I was OK with that and all I could say was yes. If he felt that it wasn't the right thing then we would go with that. There were countless people praying for these miracle working specialists to have inspiration and to know what to do, so we would most definitely go with his feelings.
I can't say what might have happened if they had done the surgery then, but we are so grateful that these phenomenal doctors listen to not just science but GOD. In Nov. 2007, it seemed to be the best option, so that worked out for us.
We had a little trouble with the ICD the morning after it had been implanted. It needed some fine-tuning. It shocked Nick while he was awake and seemed fine. In all actuality, the machine did what it was supposed to- Nick's heart had fibrillated- but Nick hadn't felt the effects of the fibrillation and ideally he should be passed out before he receives a shock or else it feels like he's just received a hard kick in his chest. Poor little one was scared half to death and afraid to move for a day or two because he thought it would shock him again if he did. They changed the parameters on the device and so far things have been mainly good.
It was a general anesthesia thing, and they sterilized the room they used just in case they needed to use it as an operating room. (comforting thought?)
The procedure was supposed to take anywhere from 1-4 hours. At 6 hours they told us that when they had given Nick's heart tiny dosages of adrenaline type drug it fibrillated a few separate times for more than a few seconds. They felt that it would be in his best interest to implant in him a cardioverter defibrillator (pacemaker/defibrillator). Since he was already there and under anesthesia, they suggested doing it then. So, 4 more hours later little Nicholas was wheeled out of the "operating room" and up to recovery.
It was kind of amazing. 1 1/2 years prior to this, August 2006, Nick had been scheduled for this exact surgery. He had been prepped for surgery, had all the tests done and was ready for the word "Go!", when Dr. Cowley spoke with me and told me that it was a hard thing for him to tell me, but that he just didn't feel right about having the surgery done. For months the team of cardiologists (and we) had been planning on this surgery. Dr. Cowley asked me if I was OK with that and all I could say was yes. If he felt that it wasn't the right thing then we would go with that. There were countless people praying for these miracle working specialists to have inspiration and to know what to do, so we would most definitely go with his feelings.
I can't say what might have happened if they had done the surgery then, but we are so grateful that these phenomenal doctors listen to not just science but GOD. In Nov. 2007, it seemed to be the best option, so that worked out for us.
We had a little trouble with the ICD the morning after it had been implanted. It needed some fine-tuning. It shocked Nick while he was awake and seemed fine. In all actuality, the machine did what it was supposed to- Nick's heart had fibrillated- but Nick hadn't felt the effects of the fibrillation and ideally he should be passed out before he receives a shock or else it feels like he's just received a hard kick in his chest. Poor little one was scared half to death and afraid to move for a day or two because he thought it would shock him again if he did. They changed the parameters on the device and so far things have been mainly good.
Time Marches On
It would be difficult to go through in detail the many, many, many hospital visits and stays we have had. Most of them consisted of sedating Nick (until he was about 2 1/2), which for us was a long and awful process.
Nick has teeny tiny veins and after being denied liquid for the hours leading up to sedation, were even harder to use. We only use the IV Team with Nick, and even these amazing specialists usually took about 5 tries to get a good stick. It was a hard thing to watch and restrain him while they did what was necessary. You have to listen to the pleading, scared, angry screams of your baby and try to be calm and soothing while they do their job. You hold your child down and beg in your own mind to Heavenly Father to "PLEASE let them get it this time!"
After the "sticking" would come the temporary relief of the drug that would lull the baby off to sleep. And the doctors and nurses would do their best to work fast and do the many tests that they had to whilst he slept.
Suffice it to just say that there were MRI's, Echo's, X-rays, EKG's, I believe a CATSCAN, blood draws, ultrasounds and so on. Most all of these done on more than a few occasions.
Most of the time we were only in the hospital for 6 or 7 hours at a time. There have been times when we thought things were going along fine and during a visit the doctors would inform us that we needed to stay for a while, there are times when things don't go as planned. We learned to ALWAYS pack an overnight bag and plan on the visit being longer, because even a routine visit can turn into something more.
But, time does march on, or rather, slip through our fingers. You get through things. Every day is not bad. You try to take things one day at a time, and try not to be down-trodden and gloomy. If you are positive about all the blessings you are receiving (even through trials) you will find that most days are wonderful, because you appreciate what you have.
Simply stated: The key to happiness is to be thankful.
Nick has teeny tiny veins and after being denied liquid for the hours leading up to sedation, were even harder to use. We only use the IV Team with Nick, and even these amazing specialists usually took about 5 tries to get a good stick. It was a hard thing to watch and restrain him while they did what was necessary. You have to listen to the pleading, scared, angry screams of your baby and try to be calm and soothing while they do their job. You hold your child down and beg in your own mind to Heavenly Father to "PLEASE let them get it this time!"
After the "sticking" would come the temporary relief of the drug that would lull the baby off to sleep. And the doctors and nurses would do their best to work fast and do the many tests that they had to whilst he slept.
Suffice it to just say that there were MRI's, Echo's, X-rays, EKG's, I believe a CATSCAN, blood draws, ultrasounds and so on. Most all of these done on more than a few occasions.
Most of the time we were only in the hospital for 6 or 7 hours at a time. There have been times when we thought things were going along fine and during a visit the doctors would inform us that we needed to stay for a while, there are times when things don't go as planned. We learned to ALWAYS pack an overnight bag and plan on the visit being longer, because even a routine visit can turn into something more.
But, time does march on, or rather, slip through our fingers. You get through things. Every day is not bad. You try to take things one day at a time, and try not to be down-trodden and gloomy. If you are positive about all the blessings you are receiving (even through trials) you will find that most days are wonderful, because you appreciate what you have.
Simply stated: The key to happiness is to be thankful.
Smooth sailing...
We coasted along for about a month with few problems. Then in November 2004 Nick suddenly began having difficulty keeping any formula down. He would spew whatever he had been fed up and out within minutes. It was the most projectile I have ever seen any person throw up. The poor boy was so hungry and would try to guzzle anything we would give him, but we had to give him such tiny amounts hoping it would stay in him. After several days of this we had to go back to PCMC and try to find an answer.
They poked. They prodded. They ran tests, echo's, ultrasounds. They looked for more tumors. Nothing. After several days there (including our 1st Thanksgiving at the hospital), they finally threw up their hands and said "We don't know." So they put him on some Zantac (acid reflux medicine) for the next month and a light but regular feeding schedule, and somehow it worked. By January he seemed to be "normal" again.
They poked. They prodded. They ran tests, echo's, ultrasounds. They looked for more tumors. Nothing. After several days there (including our 1st Thanksgiving at the hospital), they finally threw up their hands and said "We don't know." So they put him on some Zantac (acid reflux medicine) for the next month and a light but regular feeding schedule, and somehow it worked. By January he seemed to be "normal" again.
You meant 5 WEEKS, right?
The doctors put Nick on his 1st heart medicine- Amiodarone. It was necessary after having worked with his heart. It's not a drug you want to be on, and if you are, not for long. But you do what you have to. (About a year and a half later he was changed to Atenolol, and in November 2007 was changed again to Nadolol.)
Anyway, after 5 days we were discharged from the hospital following Nicks heart surgery. Our cardiologist was off duty. There was some attending physician who shoo-ed us on our way, all the while our minds were racing and bewildered. They assured us that 5 days was a perfectly normal amount of time for an infant to be released after open heart surgery. So we left. I remember wanting to scream at someone that I wasn't ready to leave! But hadn't learned yet that you can actually TELL them that. We drove the 3 hours home and tried to be normal. IT didn't last long. Soon after getting home Nick began struggling. We're talking the SAME night we got back. He was screaming uncontrollably and having trouble breathing. We tried our best to soothe him, trying medicine, bottles, holding/walking, priesthood blessings, and after a short while KNEW that he needed medical attention. So we raced him to Eastern Idaho Regional Medical Center (EIRMC). They admitted him and put him in their NICU. They diagnosed the problem as a pain control issue and possible pneumonia (according to x-rays). We stayed a few days there until Nick seemed stable.
Anyway, after 5 days we were discharged from the hospital following Nicks heart surgery. Our cardiologist was off duty. There was some attending physician who shoo-ed us on our way, all the while our minds were racing and bewildered. They assured us that 5 days was a perfectly normal amount of time for an infant to be released after open heart surgery. So we left. I remember wanting to scream at someone that I wasn't ready to leave! But hadn't learned yet that you can actually TELL them that. We drove the 3 hours home and tried to be normal. IT didn't last long. Soon after getting home Nick began struggling. We're talking the SAME night we got back. He was screaming uncontrollably and having trouble breathing. We tried our best to soothe him, trying medicine, bottles, holding/walking, priesthood blessings, and after a short while KNEW that he needed medical attention. So we raced him to Eastern Idaho Regional Medical Center (EIRMC). They admitted him and put him in their NICU. They diagnosed the problem as a pain control issue and possible pneumonia (according to x-rays). We stayed a few days there until Nick seemed stable.
Transplant or not?
We fasted. We prayed. We went to the Temple. Our family and friends also did these things for us. We were fervent in our efforts to get an answer that was right for our family. I think we wanted the answer to be a transplant because at least we would be doing everything that we could to "fix" things. Ultimately, the answer that we both undeniably felt, or rather, knew, was that we should NOT do the transplant. It was a hard answer to receive, but there was no way that either of us could deny that THAT was the right answer for our family.
We never knew how to tell people that we had opted out of that possibility, because we feared that they would not understand our choice. The easiest way to put it into one tiny little nutshell was that we wanted him to have a happy and pleasant life as long as he was given life, versus a hard and tiring life full of Dr. visits, needles, pills, and blood draws for as long as he lived. Quality vs. Quantity.
We knew then, as we know now, that not all transplants are so painstakingly difficult. Transplants are the absolute RIGHT thing for some people. We just knew beyond any shadow of a doubt that we should NOT list OUR son for the procedure at that time. There may come a time that we feel differently. We just need to listen to the answers that we have NOW.
It's a hard thing to make a decision like that. Even knowing that it was the choice we were supposed to make, we still struggled with it.
We never knew how to tell people that we had opted out of that possibility, because we feared that they would not understand our choice. The easiest way to put it into one tiny little nutshell was that we wanted him to have a happy and pleasant life as long as he was given life, versus a hard and tiring life full of Dr. visits, needles, pills, and blood draws for as long as he lived. Quality vs. Quantity.
We knew then, as we know now, that not all transplants are so painstakingly difficult. Transplants are the absolute RIGHT thing for some people. We just knew beyond any shadow of a doubt that we should NOT list OUR son for the procedure at that time. There may come a time that we feel differently. We just need to listen to the answers that we have NOW.
It's a hard thing to make a decision like that. Even knowing that it was the choice we were supposed to make, we still struggled with it.
Tuesday
Open Heart Surgery
The day for the surgery came. All in all, it's kind of a blur now. The things that I do remember are: Not wanting to let the doctors take him from my arms to do the surgery... but knew that we had to try this. Josh and I were on pins and needles and stayed as close as possible in case there was any news. Once or twice someone would come out and let us know things were ok. But the wait seemed unbearable. Once they had finished, the surgeon came out to discuss things with us. He took us into a private room, sat us down, and tried to explain what he had done. He had managed to clean out some of the tumor in the main arteries, and was also able to get a sample of the tumor to biopsy, but he was not able to get much of the tumor out because the heart tissue and tumor tissue look so similar and he didn't want to cut any of the heart. I remember the surgeon, Dr. Hawkins, seeming so disappointed and apologetic that he couldn't do more. He told us that this was basically inoperable and about our only option would be to wait and see where things went or to list Nick for a heart transplant.
We waited for Nick to come out of anesthesia. We watched him... a tiny 5 month old boy who had just endured a major surgery, lying sprawled out on the hospital bed with wires and tubes all around him. We could not hold him and there were few places we could even touch him. The nurses informed us that it would take hours for him to come around. It made us just ache inside just being there and so helpless. We soon decided that we needed to take a break from the hospital and absorb some of the days happenings. With a promise from Nicks private nurse to call us immediately if he awoke or if there was any problem, we headed down towards Temple Square and the mall a couple of miles away. As much as we tried to clear our minds and relax for a few minutes, nothing seemed to help. I remember walking into a hair salon and telling someone to cut my hair drastically, thinking that surely this would take my mind off of things for at least the length of the haircut. I was wrong... and ended up having about 9 inches less hair.
We headed back to the hospital, conceding that we were not going to be able to avoid all of the thoughts and the pressure we felt upon us. We met with the transplant team to discuss the heart transplant option. At first we leaned strongly toward the idea of a heart transplant. "Anything to save my baby!!", and then, the more we heard-- the less sure we felt. There was so much to consider. So many negatives and some MAJOR positives--IF the transplant worked and his body didn't reject it. One thing was certain, we would have to put a lot of thought and prayer into it.
We waited for Nick to come out of anesthesia. We watched him... a tiny 5 month old boy who had just endured a major surgery, lying sprawled out on the hospital bed with wires and tubes all around him. We could not hold him and there were few places we could even touch him. The nurses informed us that it would take hours for him to come around. It made us just ache inside just being there and so helpless. We soon decided that we needed to take a break from the hospital and absorb some of the days happenings. With a promise from Nicks private nurse to call us immediately if he awoke or if there was any problem, we headed down towards Temple Square and the mall a couple of miles away. As much as we tried to clear our minds and relax for a few minutes, nothing seemed to help. I remember walking into a hair salon and telling someone to cut my hair drastically, thinking that surely this would take my mind off of things for at least the length of the haircut. I was wrong... and ended up having about 9 inches less hair.
We headed back to the hospital, conceding that we were not going to be able to avoid all of the thoughts and the pressure we felt upon us. We met with the transplant team to discuss the heart transplant option. At first we leaned strongly toward the idea of a heart transplant. "Anything to save my baby!!", and then, the more we heard-- the less sure we felt. There was so much to consider. So many negatives and some MAJOR positives--IF the transplant worked and his body didn't reject it. One thing was certain, we would have to put a lot of thought and prayer into it.
Monday
How it all began..
On May 14, 2004 Nicholas Stephen was born into our family. We were thrilled to have our second child arrive! He was by far the fastest and easiest birth we have had. He seemed perfectly healthy and fine. The nurses took him to the nursery to check him all out, and the next thing we knew, they had found a problem. He had a very strong heart murmur. They couldn't find the problem there at that hospital and the pediatrician decided it would be best if we hurried him down to Primary Childrens Medical Center in SLC, UT.
At first I was shocked and horrified that ANYTHING was wrong. The next emotion I felt was denial. Surely it was nothing and these doctors were over-reacting. Still, we drove Nicholas to the hospital going I'm sure a good 80-90 mph. We raced in through the ER as we were told to do, and asked for the cardiologist who was supposed to be waiting for us. It seemed like an eternity before we were seen, but after only a few minutes with the cardiologist and his nurse doing an electrocardiogram, the news was given to us that Nick had a massive tumor inside of his heart.
A tumor. A big tumor in our newborn son's tiny heart. We were able to remain calm while they told us that we would be staying at the hospital for a while and then while they made the preparations for us. The instant they left us alone in the room however, I tried to make a call to let the rest of the family know what was going on. I was able to speak the first 2 words into the phone "Hi... Todd..." and I broke down sobbing. Thankfully, Josh was able to finish for me and asked Todd to call my mom and have her spread the news to everyone.
We ended up staying about 2 weeks at the hospital that time. We spoke with literally dozens of doctors and specialists in many areas. We ran tests. We did MRI's and X-rays, EKG's, ultrasounds - looking for other tumors, I think there might have been a CAT scan, and any other test they thought could help in any way. All to no avail. No one knew what had caused the tumor, what kind of tumor it was, if it was cancerous, how to attack it, if they could operate, if he would even survive.
We cried. Oh, how we wept. There were even doctors who shared our tears. I remember being on my knees and pleading with Heavenly father to let me keep my baby. Josh gave Priesthood blessing after Priesthood blessing to me and to Nicholas, and was a constant strength to me. I remember at one time asking my mom why this would happen to us now... we had been striving to read our scriptures, pray often and as a family, attend church, pay our tithing and to do all of those things that we should be doing. She assured me that this wasn't a punishment! That perhaps I should try to be thankful that we had been doing those things because we needed to have the strength that doing those things brings... that we would be able to make it through whatever we were given.
They ended up sending us home with instructions to return in a few weeks. We did as they told us to, and the next visit there were more tests and then we were given the same instructions to return in a few weeks. This went on for a couple of months and then in October when we were beginning to get comfortable with things, we received a phone call from the cardiologist. He told us that the results from our last visit were not good, and that the tumor had grown considerably. He had discussed the case with all of the 14 cardiologists and the cardiothoracic surgeons several times and at length, and they were unanimous in thinking that an open-heart surgery would be a good idea. They didn't know what they might be able to accomplish, but they wanted to reduce the tumor as much as possible, and get a biopsy to see if it was cancerous and what kind of tumor it was. So, we were instructed to be back at the hospital in 2 weeks for the surgery.
At first I was shocked and horrified that ANYTHING was wrong. The next emotion I felt was denial. Surely it was nothing and these doctors were over-reacting. Still, we drove Nicholas to the hospital going I'm sure a good 80-90 mph. We raced in through the ER as we were told to do, and asked for the cardiologist who was supposed to be waiting for us. It seemed like an eternity before we were seen, but after only a few minutes with the cardiologist and his nurse doing an electrocardiogram, the news was given to us that Nick had a massive tumor inside of his heart.
A tumor. A big tumor in our newborn son's tiny heart. We were able to remain calm while they told us that we would be staying at the hospital for a while and then while they made the preparations for us. The instant they left us alone in the room however, I tried to make a call to let the rest of the family know what was going on. I was able to speak the first 2 words into the phone "Hi... Todd..." and I broke down sobbing. Thankfully, Josh was able to finish for me and asked Todd to call my mom and have her spread the news to everyone.
We ended up staying about 2 weeks at the hospital that time. We spoke with literally dozens of doctors and specialists in many areas. We ran tests. We did MRI's and X-rays, EKG's, ultrasounds - looking for other tumors, I think there might have been a CAT scan, and any other test they thought could help in any way. All to no avail. No one knew what had caused the tumor, what kind of tumor it was, if it was cancerous, how to attack it, if they could operate, if he would even survive.
We cried. Oh, how we wept. There were even doctors who shared our tears. I remember being on my knees and pleading with Heavenly father to let me keep my baby. Josh gave Priesthood blessing after Priesthood blessing to me and to Nicholas, and was a constant strength to me. I remember at one time asking my mom why this would happen to us now... we had been striving to read our scriptures, pray often and as a family, attend church, pay our tithing and to do all of those things that we should be doing. She assured me that this wasn't a punishment! That perhaps I should try to be thankful that we had been doing those things because we needed to have the strength that doing those things brings... that we would be able to make it through whatever we were given.
They ended up sending us home with instructions to return in a few weeks. We did as they told us to, and the next visit there were more tests and then we were given the same instructions to return in a few weeks. This went on for a couple of months and then in October when we were beginning to get comfortable with things, we received a phone call from the cardiologist. He told us that the results from our last visit were not good, and that the tumor had grown considerably. He had discussed the case with all of the 14 cardiologists and the cardiothoracic surgeons several times and at length, and they were unanimous in thinking that an open-heart surgery would be a good idea. They didn't know what they might be able to accomplish, but they wanted to reduce the tumor as much as possible, and get a biopsy to see if it was cancerous and what kind of tumor it was. So, we were instructed to be back at the hospital in 2 weeks for the surgery.
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