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Tuesday, November 24, 2009
The good thing about being the first on the schedule is that there is a very low likelihood that you will be bumped.
But it also meant that we had to get up at 5:30am in order to get ready and be there in time to be with Nathan before the procedure.
In order to close the VSD, the plan was to insert a catheter into a blood vessel near Nathan's groin and then advance it up to one side of his heart, through the hole into the other side of the heart and then advance it out through Nathan's neck.
Half of a closure device, or occluder disk, is then inserted in through the catheter in the groin and the other half through the catheter in the neck. They are then advanced toward the VSD where the disks are connected to close the hole. Over time, the heart tissue would then grow around the occluder making it a permanent part of the heart.
We arrived at the hospital and got to spend about 20 - 30 minutes with Nathan before the medical team began to arrive to take him down to the Cath Lab. It took nearly a whole team to transport Nathan from his room on the 4th Floor to the 1st Floor where the Cath Lab is.
We followed them down to the entrance of the Cath Lab where we gave Nathan our love and told him that we would be back to see him once the procedure was over.
They gave us a restaurant-type buzzer and told us that they would page us when the procedure was over.
And then we waited.
Obviously, doing nothing was not an option. But did this have to be done right now? Couldn't we have more time to think about it? Nathan was stable, but still seemed so fragile.
The medical staff were highly in favor of the Cath Lab procedure over open heart surgery.
So after 2 days of thought, discussion, and prayer, we decided to go ahead and have them close Nathan's VSD in the Cath Lab. We informed them of our decision on Friday, October 19th, and they scheduled Nathan for the procedure on Tuesday, October 23rd.
It wasn't a decision that I was very comfortable with, but it seemed that it was the best option, considering the alternatives.
We had had only 1 day to decide on the procedure and over 3 days to agonize over it. And agonize I did. I worried all weekend if we had made the correct decision. There was still time to back out, but if we did, would that be the best decision for Nathan? Nothing seemed to calm my fears or ease the burden I felt upon me.
After more discussion, we decided that it would be best if Nathan got a blessing some time before the procedure on Tuesday. With no family in the area, I thought it would be nice and appropriate to ask the leader of our local church congregation if he would be able to assist me in the blessing.
So at church on Sunday, I explained to him Nathan's situation and our fears over the procedure and asked if he would be able to come to the hospital either that night or the following night to help give Nathan a blessing. He said he would check with his wife and get back to us.
Later that evening (later than I anticipated), he called and informed me that due to prior commitments, he would be unable to come to the hospital and assist.
Due to the lateness of the hour, that left us scrambling to try and find someone who could help. With really no one that we knew very well or that we thought would be able to drop everything and come up to the hospital on such short notice, I was thankfully able to get in touch with a friend from work and asked if her boyfriend (whom I had never met but that I knew was from the Salt Lake area) was available and willing to help. Thankfully, he was!
They met us at the hospital later that night and he helped me to give Nathan blessing. I appreciated the help. And while not completely assuaging my fears and forbodings about the procedure, I was very grateful for friends and the Priesthood that night.
Sunday, November 22, 2009
A VSD is a hole in the wall of the heart (the septum) that separates its left and right sides and occurs between the two lower chambers (ventricles).
In a normally functioning heart, the left side of the heart only pumps blood to the body, and the heart’s right side only pumps blood to the lungs. When a VSD exists, a large amount of oxygen-rich blood from the heart’s left side is forced through the defect into the right side. This blood is pumped back to the lungs, even though it has already been refreshed with oxygen (see diagram above).
Unfortunately, this causes the heart to pump more blood. The heart, especially the left atrium and left ventricle, will begin to enlarge from the added work. High blood pressure may occur in the lungs’ blood vessels because more blood is there. This increased pressure is known as pulmonary hypertension. Over time, increased pulmonary hypertension may permanently damage the blood vessel walls.
In order to have the heart function properly and reduce the pulmonary hypertension, the VSD needs to be closed. VSD closure is usually performed by sewing a patch over the hole to close it completely. Eventually the normal heart lining tissue grows to cover the patch and it becomes a permanent part of the heart. This option requires open-heart surgery.
A second option for closing the VSD involves "plugging" the hole with a special device through a procedure in the catheterization lab. The procedure is less invasive than open heart surgery, but had never really been tried on someone as tiny as Nathan before. So there were inherent risks involved with this as well.
Talk about being stuck between a rock and a hard place and a fire breathing dragon!
If we did nothing, Nathan's heart would sooner or later over work itself and eventually stop.
Or we could subject him to the rigors and risks of open heart surgery.
Or we could try a new procedure that has a small proven success rate, but absolutely zero results (good or bad) for someone Nathan's size.
So we were again left with an extremely important decision to make regarding Nathan's life.
Saturday, November 21, 2009
As each day went by, Nathan continued to make slow, but forward, progress. But up until this point, it had never really crossed either of our minds to ask to hold Nathan. With ECMO and the silo and and everything else, it's sad to say that holding Nathan wasn't even a passing thought.
That all changed on the night of October 10th, exactly 5 weeks since Nathan was born.
From the second or third week after Nathan was born, we had tried the best we could to live as much of a normal life as we could. Thomas tried to work normal shifts (there were still bills to pay) and Bekah would spend as much of the day as she could with Nathan. Then at night we would return home, sleep, and do it all again the next day.
The longer Nathan was in the hospital, the better we came to known the nurses and doctors responsible for Nathan's care, especially his primary care nurses, those nurses who were assigned to Nathan whenever they were on.
On the night of Wednesday, October 5th, Thomas was working late while Bekah was with Nathan at the hospital. That night, one of Nathan's primary care nurses, Ashlee, happened to be assigned to care for Nathan. As Ashlee came on duty, she asked Bekah is she had had the opportunity of holding Nathan yet. Sadly, Bekah reported that she had not.
Then, most unexpectedly, Ashlee asked Bekah if she'd like to. Was she serious? Really? Do you mean it? Of course!
Bekah called Thomas with the good news, which prompted him to immediately leave work and head up to the hospital. Bekah patiently waited for him to arrive before holding Nathan. Since we didn't know how Nathan would react to being held, there was no guarantee that we would both get the opportunity. So it was decided that Bekah would go first and if that went well, then Thomas would also have a chance.
Now, holding Nathan was not an easy task. You couldn't just pick him up and cradle him in your arms. Because he was still on the ventilator, it was considerably trickier than that.
After Bekah had comfortably positioned herself in a rocking chair, Ashlee called for the Respiratory Technician to come and help transfer Nathan to her. The RT held the ventilator tube in place while Ashlee gently picked up Nathan. In tandem, they moved over to Bekah and gently placed Nathan in her arms.
And both Nathan and Bekah loved it! Because of the ventilator tubes, Bekah had to remain quite still. And so she did -- for nearly an hour! -- enjoying the first real mother-son bonding time they had ever had.
But after an hour, Thomas was nearly begging to have a turn. So the process with Ashlee and the RT was repeated with Thomas taking Bekah's place in the rocking chair. He also doted on Nathan for nearly an hour with some much needed father-son time.
And even though we had to sit there nearly motionless while holding Nathan, for each of us the hour with Nathan seemed like no time at all. It was the best hour we'd spent in more than a few weeks.
Now that Nathan was off ECMO, the doctors could focus on getting all his insides back inside.
Every couple of days or so, a surgeon would come in to Nathan's room and perform a "reduction" on Nathan's silo.
In other words, the surgeon would basically "squish" a portion of Nathan's guts back into his abdomen and then sew off the silo in order to prevent them from working their way back out.
They would then give him 2-3 days to rest and recover from the reduction. I'm sure you can imagine how awkward and painful it would be.
The whole process took about 2 1/2 weeks to get everything back inside. When they were finally able to get everything back inside, Dr. Scaife was finally able to close Nathan's wound.
For the first couple of days, it was red and very "angry looking." But Nathan's body responded very well once everything was finally inside and it began to heal very quickly. By the end of the month, they were also able to take out his chest tube, which was in to help drain fluid and blood that had been accumulating in his chest.
And so we came to then end of September. Nathan was not quite a month old. He had made it through 4 surgeries, including ECMO and he had miraculously gone nearly 20 days with a gaping wound that never got infected.
It was a relief to have made it through the month, but we knew that there was still a long road ahead of us still. We just didn't know how long -- or how emotionally excruciating it would be.
Friday, November 20, 2009
As Nathan passed Day 7 on ECMO, the doctor's words about the 14-day "safe window" ran through our minds many times a day. While ECMO itself is very dangerous, the odds of survival decrease greatly after 14 days. So having Nathan pass into the second week lit an urgent little fire under us.
And as if that wasn't urgent enough, Nathan still had the open wound where the silo was and it continued to bleed daily requiring daily transfusions.
So each day was critical -- HIGHLY critical. But, fortunately for us, we didn't realize just how critical his situation actually was. Really, only now as we discuss and write this does the entire criticalness of the situation actually hit us. Nathan truly was watched over and blessed with Divine protection during this time.
One of the difficult things about ECMO is that there is no prognosticating when it comes to trying to figure out when a patient is ready to come off. No one can tell you, "Well, if things continue like they are he should be ready by such-and-such day." It's really a day-by-day, hour-by-hour wait.
On Day 9, there was finally talk about "trialing" Nathan off ECMO to see how he would do. To trial someone off ECMO, the machine is turned off and the patient is given the opportunity to circulate and oxygenate their own blood. The length of the trial is determined by how well the patient does. The goal is to have them make it an hour. If they can make it an hour, they are usually ready to come off.
As the morning went on, there became more talk of trialing Nathan off and it looked as if it was going to happen sometime that afternoon.
While the family was off to lunch, the medical team "secretly" trialed Nathan off without any of us knowing.
When Bekah and the grandmas returned from lunch, everyone was surprised by the news that the trial had already taken place -- and Nathan had passed!!!!!
That evening, during a 2-hour operation, Nathan was taken off ECMO. It was both relieving and exhilerating. But most importantly, it was a giant step forward for Nathan.
With ECMO now behind us, we could now focus on other aspects of Nathan's health.
Thursday, November 19, 2009
As we mentioned in the previous post, when Dr. Scaife performed Nathan's hernia repair, he discovered that all of Nathan's insides that he had taken out of his chest (liver, stomach, intestines) didn't fit into his abdomen. Since they had never been in there in the first place, his abdomen hadn't grown to fit them.
As a result, Dr. Scaife temporarily housed a portion of Nathan's "guts" in a surgical silo, a polypropylene mesh covered on both sides with a sterile transparent adhesive film that is constructed right there in the operating room. The silo is sterile, soft, flexible, sturdy, internally smooth, provides a reasonable barrier, and allows visibility of the bowel. The silo is inserted to an open wound in the patient's abdomen and "reduced" as the patient tolerates. The patient is also given a large number of antibiotics to prevent infection since the silo is in an open wound.
However, because Nathan was still on ECMO, the silo posed a another potentially dangerous problem in addition to possible infection:
Patients on ECMO are given blood thinners to help prevent the ECMO machine from clotting. However, the blood thinners also prevented Nathan's wound from clotting, meaning that it was constantly bleeding. A a result, Nathan's silo was heavily bandaged with gauze. The gauze was replaced as needed as it became saturated with blood. He also received regular blood transfusions to replace the blood he was losing.
But with all the gauze, there were times that Nathan's tummy looked like a giant snow cone. Hence, we called him our Snow Cone Belly Baby while we waited for the day he would come off the ECMO.
**For those brave souls, you can view pictures of the uncovered silo, by clicking here. But I caution you, they are NOT for the faint of heart or stomach!
Sunday, November 8, 2009
On the morning of Monday, September 10th, I received a phone call from the NICU letting me know that that they wanted to go ahead with Nathan's hernia repair surgery that afternoon and needed consent from us to proceed. I gave my consent and let them know that we were on our way and would be there within an hour.
The excitement of the moment was so intense. This was such an important event. There was no way that Nathan could start getting better without this surgery. We called everyone we could think of to let them know that this was the day.
As we would come to learn though, emergencies are the norm at Primary Children's and Nathan's surgery got bumped until the evening while the surgeon worked on other patients. Thankfully, that gave us the opportunity to have a friend come and assist in giving Nathan a blessing before the surgery.
By late afternoon/early evening, everything and everyone was ready to go. Because of the ECMO and the oscillator, Nathan was unable to be transported to the Operating Room. So they brought the OR to Nathan. They sterilized his room and closed the door to anyone not needed in the room.
Bekah, myself, and our mothers hung out in the waiting room and played games to try and keep our minds off of the surgery.
More than 2 hours into the surgery, one of the attendants came out to give us an update. It turned out that Nathan's hernia was worse than they had expected. Our hearts sunk into our stomachs at that news. She explained that Nathan basically had no left side of his diaphragm at all and that Dr. Scaife was working hard to repair it. It was likely to be another hour or so and he would be out to give us more details.
Frankly, we could have done without the update! It made it hard to focus on anything else!
Another hour or so later, we received another update. The procedure had gone well, but Dr. Scaife was having troubles re-inserting all of Nathan's "guts" back into his abdomen and Dr. Scaife was trying to decide what to do next. He would be out as soon as he was done to give us the final update.
At last--close to 4 hours after the surgery had started--Dr Scaife came out and explained the surgery to us. To repair the hernia, he had to cut away part of Nathan's oblique muscle, fold it over, and use that as the new diaphragm.
And, as it turned out, since there wasn't much in there while Nathan was in utero, his abdomen had not grown to accomodate everything that needed to be in there. As a result, he was unable to close Nathan's incision. Instead, he had temporarily housed a part of Nathan's insides inside a "silo" and every couple of days or so they would work to reduce the silo by "squishing" his insides back inside his body.
All of this news was extremely weird to us. Since know one had told us differently, both of us were more or less expecting the doctor to try and place everything back where it was supposed to be. So when we found out that everything was basically just in there "wherever it would fit," it threw us for quite a loop. In retrospect, we now realize of course how difficult (if not impossible) it would be to wind and layer the intestines and try to actually put things together "the way they're supposed to be."
After hearing the report, I asked what his overall prognosis was. His response was that Nathan was "stable, but critical." Very somberly he told us that even though the surgery was successful, because he was still on ECMO it presented problems that made his condition still serious.
We thanked him for his work and once he had left the waiting room, we gathered for a prayer and gave thanks to Heavenly Father for the successful surgery and prayed that He would continue to watch over Nathan in his critical condition.
We spent what time we could with Nathan over the next few days.
Bekah was still recovering and had to split Nathan time between his two grandmas.
I tried as best I could to balance work and being at the hospital.
When we were able to be with Nathan at the hospital, it was hard not to feel helpless and in the way.
The ECMO machine took up the entire right side of Nathan's bed area. The oscillator and nitric gas took up the entire foot area of the bed. There were also two medicine pump poles that were usually squeezed in somewhere. In addition, Nathan had two full-time nurses -- one to care for him and one to monitor the ECMO macine for problems like clots.
That left us a small (for 2 people) area on the left side of the bed where we could sit and be with Nathan. Bekah would sing to him. I would read to him. Mostly we would just be there and tell him that we loved him.
Nathan would just lay there. The monitors would beep frequently. And sometimes the nurses would ask us to move for a few minutes so the could give meds, change a diaper, check his vitals, etc.
And then each night we'd drive 45 miles back home so we could rest and do it all again the next day.