Nathan was discharged from the hospital on March 2nd, only a couple of days after the shunt revision. Besides a couple of days of soreness, crankiness, and lots of sleeping, Nathan recovered rather quickly from the surgery.
Once Nathan was feeling better, we decided that it was time to go ahead and wean him off one of his meds: methadone. Methadone is a synthetic narcotic drug that is used as an anti-addictive medicine to harder narcotic medicines like morphine.
From very early on in his life, almost since he was born in fact, Nathan had been a regular on morphine, including a time when he was on a steady morphine drip. As he got better though, the doctors in the NICU were able to wean down his morphine useand transfer him to methadone. Methadone helps to mitigate the withdrawal effects of morphine by producing many of the same effects on the body and mind that morphine does, but not quite as "harsh." But even though the effects aren't as harsh, patients can and often do develop a physical and psychological dependency to methadone and its effects.
Nathan only came home on 1cc of methadone, which is in the grand scheme of things is only about 1/30th of an ounce. So it's really not a lot. But to Nathan, it was quite a bit. When we had started to wean him off, we only dropped the dose by .1cc. And it was really rough on Nathan. He cried and cried and cried for about an hour. Inconsolably.
We tried soothing him in the rocking chair or walking around, and neither worked. The only thing that seemed to work was singing. Now Bekah knows a number of lullabies or little tunes from here and there. But me?...not so many. However, I do specialize in making songs up. So I would make up songs about things I liked to eat with mashed potatoes, or about Nathan being tired and sleepy, or anything else I could think of and put to a tune that would come to mind. And amazingly, most of the time, it worked brilliantly. It helped keep Nathan calm during the most brutal hour of the withdrawals.
Once Nathan would become used to the dose, we would give him a few days on it and then lower it again and go through it all over again. We talked back and forth about things that we could do to try and help Nathan better handle the withdrawals. Because sometimes even with the singing, it was horrible for Nathan and for us. Sometimes the withdrawals were so bad and Nathan cried so much. Sometimes we thought that we would go crazy from the non-stop crying. But most of the time we just felt so bad for Nathan. Being so young and having his body addicted to the medication. It was entirely heart-wrenching.
Then about half-way through the weaning process, it finally dawned on me, like a wave of inspiration. To help with the physical and emotional anxieties of withdrawal, Nathan had been prescribed an anti-anxiety medication called Ativan. However, when we had originally been discharged from the hospital, both the methadone and the Ativan were scheduled to be given at the same time!
So since there were being given at the same time, as we were coming down on the methadone, the Ativan didn't have a chance to get a "head-start" in heading off the withdrawal effects from the methadone. So we bumped the Ativan up half an hour. And it worked wonderfully! The withdrawal symptoms were clearly lessened. I felt so bad that we hadn't thought of it sooner. It would probably have saved Nathan and us a few restless nights.
The Family
For Christmas 2010
Sunday, April 18, 2010
Thursday, April 15, 2010
Shunt Revision
Dr. Riva-Cambrin's hunch that Nathan's body was unable to absorb all the cerebro-spinal fluid (CSF) being deposited in his abdomen. So instead of being reabsorbed into his system, the CSF was basically "pooling" in the pocket of his abdomen where the distal end of the shunt was placed. Once the "pool" was full, no more fluid could fit in the pocket. Since the shunt couldn't drain anymore, the fluid had no where else to go. So it stayed in the ventricles, which is what was causing Nathan's head to get bigger.
So we needed to find a new place for the shunt to drain.
In general, when a venticuloperitoneal (VP) shunt fails, the preferred next best location is a ventriculoatrial (VA) shunt. So instead of emptying into the abdomen, the shunt empties into the right atrium of the heart. From there it is carried through the bloodstream and is eliminated and absorbed throughout the body, not just in a single location.
It sounded like a a great plan to us. However, given Nathan's long history of heart issues, his cardiologist did not think that his heart would be up to the task. So he said "No" to the VA shunt. So that meant that we were looking for another location to place the distal end of the shunt.
Upon closer inspection of Nathan's body, Dr. Riva-Cambrin discovered that there was a large open area around Nathan's CDH repair, in the area around his left lung. This area is known as the pleural cavity. It is actually a space between the chest wall and the lungs. It is lined by a membrane along both the chest wall and the lungs. A fluid called pleural fluid is generally found in the cavity. The CSF is added to this fluid and is then absorbed into the body.
This type of shunt is known as a ventriculopleural (VPL) shunt. And with Nathan's wacky anatomy, this seemed like the best option available to us. All of the pieces just seemed to come together. Nathan's hernia repair was the answer to solving the hydrocephalus problem! Brilliant! We felt that this was Divine Intervention smiling down upon us again.
And the surgery went really, really well too. They had placed Nathan on a ventilator for safety precautions during the procedure. But he was able to come right off when the surgery was over.
So Nathan's shunt revision took place 9 weeks and 1 day from the placement of the original shunt. And considering how much we struggled with the first shunt, we felt a lot better about this one. We were hoping and praying that this would be it. Even though we knew that the odds of having another shunt revision were now dramatically higher, we really, really wanted to believe that Heavenly Father would bless Nathan to be able to heal and move forward.
So we needed to find a new place for the shunt to drain.
In general, when a venticuloperitoneal (VP) shunt fails, the preferred next best location is a ventriculoatrial (VA) shunt. So instead of emptying into the abdomen, the shunt empties into the right atrium of the heart. From there it is carried through the bloodstream and is eliminated and absorbed throughout the body, not just in a single location.
It sounded like a a great plan to us. However, given Nathan's long history of heart issues, his cardiologist did not think that his heart would be up to the task. So he said "No" to the VA shunt. So that meant that we were looking for another location to place the distal end of the shunt.
Upon closer inspection of Nathan's body, Dr. Riva-Cambrin discovered that there was a large open area around Nathan's CDH repair, in the area around his left lung. This area is known as the pleural cavity. It is actually a space between the chest wall and the lungs. It is lined by a membrane along both the chest wall and the lungs. A fluid called pleural fluid is generally found in the cavity. The CSF is added to this fluid and is then absorbed into the body.
This type of shunt is known as a ventriculopleural (VPL) shunt. And with Nathan's wacky anatomy, this seemed like the best option available to us. All of the pieces just seemed to come together. Nathan's hernia repair was the answer to solving the hydrocephalus problem! Brilliant! We felt that this was Divine Intervention smiling down upon us again.
And the surgery went really, really well too. They had placed Nathan on a ventilator for safety precautions during the procedure. But he was able to come right off when the surgery was over.
So Nathan's shunt revision took place 9 weeks and 1 day from the placement of the original shunt. And considering how much we struggled with the first shunt, we felt a lot better about this one. We were hoping and praying that this would be it. Even though we knew that the odds of having another shunt revision were now dramatically higher, we really, really wanted to believe that Heavenly Father would bless Nathan to be able to heal and move forward.
Wednesday, April 14, 2010
Readmitted to the Hospital
We made it up to see Dr. Riva-Cambrin the last Wednesday of February. During the previous week, Nathan had actually done pretty well. He was less cranky than the week before and he was vomiting less as well. But part of that we attributed to changing his formula to one that was a little less harsh on his tummy. On the other hand, his head had grown considerably and the soft spot on his head was bulging.
So the doctor requested a CT scan to get a better look at what was going on inside Nathan's head. After reviewing the results, he decided to admit Nathan for a shunt revision the next day. It was a bittersweet moment for us. It was really, really disappointing to be back in the hospital after only 36 days. But we had missed our friends at the hospital and it was going to be a relief to get Nathan's health back on track.
But to our dismay, Nathan was not readmitted to the NICU. Apparently he didn't qualify to be in that unit any longer. Instead he was admitted to the Neuro Trama Unit (NTU) for patients with brain and head injuries and problems. It was strange being in a new unit with unfamiliar nurses. But they were very nice and friendly, especially while we waited to find out about the plan for Nathan's shunt revision.
So the doctor requested a CT scan to get a better look at what was going on inside Nathan's head. After reviewing the results, he decided to admit Nathan for a shunt revision the next day. It was a bittersweet moment for us. It was really, really disappointing to be back in the hospital after only 36 days. But we had missed our friends at the hospital and it was going to be a relief to get Nathan's health back on track.
But to our dismay, Nathan was not readmitted to the NICU. Apparently he didn't qualify to be in that unit any longer. Instead he was admitted to the Neuro Trama Unit (NTU) for patients with brain and head injuries and problems. It was strange being in a new unit with unfamiliar nurses. But they were very nice and friendly, especially while we waited to find out about the plan for Nathan's shunt revision.
Tuesday, April 13, 2010
Shunt Problems
It wasn't very many days after Nathan's botched hearing test that we started to notice that his shunt was likely having problems. He began throwing up a lot more. And a lot more violently too. In addition he was almost perpetually cranky, and his eyes began sunsetting again.
Our weekly meeting with the pediatrician showed that Nathan's head had not grown any since out last appointment, but the soft spot on his head did look a little more bulgy. So we called the neurosurgeon's office and Dr Riva-Cambrin happened to be out of the office that day. So we had our next follow-up appointment bumped up a from the first week of March to the the next week, which was the last week of February.
We were very nervous about Nathan's shunt because we had been told that once you have a shunt revision, the likelihood of future shunt revisions increases dramatically. So we were hoping that Nathan wouldn't need a revision, but deep down we knew that it was the most likely scenario.
Our weekly meeting with the pediatrician showed that Nathan's head had not grown any since out last appointment, but the soft spot on his head did look a little more bulgy. So we called the neurosurgeon's office and Dr Riva-Cambrin happened to be out of the office that day. So we had our next follow-up appointment bumped up a from the first week of March to the the next week, which was the last week of February.
We were very nervous about Nathan's shunt because we had been told that once you have a shunt revision, the likelihood of future shunt revisions increases dramatically. So we were hoping that Nathan wouldn't need a revision, but deep down we knew that it was the most likely scenario.
Monday, April 12, 2010
Hearing Test Follow-Up
Some babies who have been on ECMO have experienced hearing loss. So before Nathan was discharged from the NICU, as part of standard procedure, he had a hearing test to check if he was suffering any hearing loss. The test showed that Nathan may have had partial hearing loss in his left ear, mostly for sounds about as loud as a whisper. But because his shunt was left-sided, there was a possibility that the shunt may have interfered with the results, so they recommended that we have Nathan retested. The re-check was scheduled for the second week of February.
We weren't really worried about Nathan's hearing at this point. We knew that he could hear since his favorite toys were rattles and noisy things. And even if he did have partial hearing loss, at this point there wasn't a lot that we could do about it. So we felt that the hearing test was a little unnecessary at this juncture, but we went ahead with it anyway just to get it out of the way.
In addition to the standard hearing screening, Nathan was also scheduled to have a brainstem auditory evoked response (BAER) test as well. The BAER test measures brain wave activity in response to certain tones.
For the test, the patient is to be reclining and remain absolutely still. Electrodes are then placed on the scalp and on each earlobe. The earphones give off tones or clicks that stimulate the hearing nerves that run between the brain. The electrodes pick up the brain's responses to the sounds and records them.
The responses are involuntary, so it is an effective way to test the hearing of those who are unable to respond to a hearing test -- such as babies. And since the responses are involuntary, the patient does not have to be awake during the test. Since the audiologist has to place electrodes on the patient to measure the responses, they prefer that babies be sleep deprived, so that they can place the electrodes before he or she falls asleep.
A day or two before Nathan was scheduled for his hearing test, the audiologist's office called with instructions on how to deprive Nathan of sleep. Basically, we were supposed to keep him up an hour or two longer than normal and get him up an hour or two earlier than normal. Then we had to keep him awake until we got to the hospital...about a 45 minute car drive away.
So to keep Nathan awake during the car ride, Bekah sat in the back seat next to his car seat. She shook every rattle we owned and would shout his name every time it looked like he was starting to fall asleep. Or she would shake his arms and legs like they were dancing. Nathan did pretty well for the first 30 minutes. But then he had had enough. Fortunately we made it to the hospital before he became too cranky!
We only had to wait about 15 minutes before we were taken back to meet with the audiologist. She performed the standard hearing screening on Nathan and he passed perfectly! She then said that we were cleared to go. We said that we thought that Nathan had to take the BAER test as well, but the said that since he passed the first test, the second one was unnecessary. So we headed home, happy and relieved that Nathan's hearing was fine.
A couple of days later, someone from the audiologist's office called and asked us if Nathan had been on ECMO. We told them yes, to which they responded that in that case Nathan would in fact need the BAER test.
To say that we were annoyed or that this was an inconvenience would be an understatement. We were so annoyed! It had not been easy to keep a 5 month old baby awake for an entire 45 minute car ride when we'd kept him up late and gotten him up early and all he wanted was to go to sleep. It felt like torture trying to keep him awake, and we were in no hurry to repeat that process. So we just told them that we would get back to them and left it at that for the time being.
We weren't really worried about Nathan's hearing at this point. We knew that he could hear since his favorite toys were rattles and noisy things. And even if he did have partial hearing loss, at this point there wasn't a lot that we could do about it. So we felt that the hearing test was a little unnecessary at this juncture, but we went ahead with it anyway just to get it out of the way.
In addition to the standard hearing screening, Nathan was also scheduled to have a brainstem auditory evoked response (BAER) test as well. The BAER test measures brain wave activity in response to certain tones.
For the test, the patient is to be reclining and remain absolutely still. Electrodes are then placed on the scalp and on each earlobe. The earphones give off tones or clicks that stimulate the hearing nerves that run between the brain. The electrodes pick up the brain's responses to the sounds and records them.
The responses are involuntary, so it is an effective way to test the hearing of those who are unable to respond to a hearing test -- such as babies. And since the responses are involuntary, the patient does not have to be awake during the test. Since the audiologist has to place electrodes on the patient to measure the responses, they prefer that babies be sleep deprived, so that they can place the electrodes before he or she falls asleep.
A day or two before Nathan was scheduled for his hearing test, the audiologist's office called with instructions on how to deprive Nathan of sleep. Basically, we were supposed to keep him up an hour or two longer than normal and get him up an hour or two earlier than normal. Then we had to keep him awake until we got to the hospital...about a 45 minute car drive away.
So to keep Nathan awake during the car ride, Bekah sat in the back seat next to his car seat. She shook every rattle we owned and would shout his name every time it looked like he was starting to fall asleep. Or she would shake his arms and legs like they were dancing. Nathan did pretty well for the first 30 minutes. But then he had had enough. Fortunately we made it to the hospital before he became too cranky!
We only had to wait about 15 minutes before we were taken back to meet with the audiologist. She performed the standard hearing screening on Nathan and he passed perfectly! She then said that we were cleared to go. We said that we thought that Nathan had to take the BAER test as well, but the said that since he passed the first test, the second one was unnecessary. So we headed home, happy and relieved that Nathan's hearing was fine.
A couple of days later, someone from the audiologist's office called and asked us if Nathan had been on ECMO. We told them yes, to which they responded that in that case Nathan would in fact need the BAER test.
To say that we were annoyed or that this was an inconvenience would be an understatement. We were so annoyed! It had not been easy to keep a 5 month old baby awake for an entire 45 minute car ride when we'd kept him up late and gotten him up early and all he wanted was to go to sleep. It felt like torture trying to keep him awake, and we were in no hurry to repeat that process. So we just told them that we would get back to them and left it at that for the time being.
Saturday, April 10, 2010
Nathan Laughs!
There are a lot of things you don't think about your child doing, unless they don't do them. And then when they finally do them, it's like the biggest celebration and party you can imagine. For us, laughing was one of those things.
Following his shunt surgery, as he started to feel better, Nathan became a really happy baby. As we would play with him, he would get really, really excited: his eyes would get really big and happy, his mouth would open wide, and he would wiggle crazily. It was awesome and adorable!
But he never made any sound. And honestly, that was more than a little disappointing to us, to have your 5 month old not really make any sounds.
And then one night it finally happened! As I was playing with Nathan, he made..a happy noise! I turned to Bekah and asked her if she had heard it too, which she had. I excitedly said that I thought it was a laugh. Bekah wasn't so sure.
I was 90% certain it was laugh though, and I really, really, really wanted him to do it again. So I tried to remember exactly what I had done to cause it and tried to repeat it again. And sure enough, he did it again. Now I was 100% convinced that it was a laugh.
I felt like Super Dad! I had made Nathan laugh. I was so happy. There were times that I felt left out because I had to go to work all the time and Bekah got to stay home all day with Nathan. So being the first one to make Nathan laugh was such a thrill for me.
But not so much for Bekah. She felt just the opposite of what I felt. In fact, she felt really bummed out.
Bekah felt gypped for exactly the same reason that I was so thrilled. She got to spend all day at home with Nathan, so why didn't he laugh for her.
It was a growing experience for both of us as we learned to better appreciate each other and the joys and downers that were going to come along as Nathan grew up.
Thankfully, Nathan started laughing for Bekah in a couple of days, too. So that definitely helped!
Following his shunt surgery, as he started to feel better, Nathan became a really happy baby. As we would play with him, he would get really, really excited: his eyes would get really big and happy, his mouth would open wide, and he would wiggle crazily. It was awesome and adorable!
But he never made any sound. And honestly, that was more than a little disappointing to us, to have your 5 month old not really make any sounds.
And then one night it finally happened! As I was playing with Nathan, he made..a happy noise! I turned to Bekah and asked her if she had heard it too, which she had. I excitedly said that I thought it was a laugh. Bekah wasn't so sure.
I was 90% certain it was laugh though, and I really, really, really wanted him to do it again. So I tried to remember exactly what I had done to cause it and tried to repeat it again. And sure enough, he did it again. Now I was 100% convinced that it was a laugh.
I felt like Super Dad! I had made Nathan laugh. I was so happy. There were times that I felt left out because I had to go to work all the time and Bekah got to stay home all day with Nathan. So being the first one to make Nathan laugh was such a thrill for me.
But not so much for Bekah. She felt just the opposite of what I felt. In fact, she felt really bummed out.
Bekah felt gypped for exactly the same reason that I was so thrilled. She got to spend all day at home with Nathan, so why didn't he laugh for her.
It was a growing experience for both of us as we learned to better appreciate each other and the joys and downers that were going to come along as Nathan grew up.
Thankfully, Nathan started laughing for Bekah in a couple of days, too. So that definitely helped!
Thursday, April 8, 2010
Follow-Up With the Neurosugeon
A couple of weeks after Nathan had been discharged from the NICU, we were scheduled for his first follow-up with Dr. Riva-Cambrin, the neurosurgeon who had installed Nathan's shunt. It had been 6 weeks since the surgery, so the follow-up was routine and had been scheduled since before discharge.
This was our first trip back to Primary Children's and our first time taking Nathan anywhere other than the pediatrician's office. And it was quite an adventure!
Not only did we have to take one of the portable oxygen tanks and Nathan's pulse oximeter, but because PCMC is an hour from home, we also had to pack an extra oxygen tank (just in case) as well as Nathan's feeding pump and any meds that were due while we were to be gone. And to top it off, we had a small gym bag that we were using as our diaper bag that was packed full of supplies, including numerous burp rags and a change of clothes or two for Nathan (also just in case).
So as we walked down the halls of Primary Children's, we're sure we looked like quite the parade, toting all of Nathan's supplies and carrying him in his car seat carrier. Thinking back now, it's too bad we didn't take a picture of it!
The appointment with Dr. Riva-Cambin went pretty well. He asked how Nathan was doing, how his eyes were behaving, and how much he was throwing up. We let him know for the most part Nathan was doing quite well. There weren't really any issues with his eyes like there were a couple of months ago, but he was having some issues with vomiting, especially in the mornings, including one really scary one where we think he choked on it and aspirated a little bit.
In addition, since we had last seen Dr. Riva-Cambrin, Nathan's head size had gone down a little bit, which was a good sign that some of the fluid had drained from his head. However, his head size had not gone down as much as the doctor had wanted, which made him wonder if the shunt might be blocked. In fact, Dr. Riva-Cambrin actually hypothesized that because of all the scar tissue in Nathan's abdomen, that his body just might not be absorbing the fluid as quickly as it should.
So with the vomiting and the head size issues, Dr. Riva-Cambrin decided that he wanted to keep a close eye on Nathan and asked us to come back in 4 weeks for another follow-up.
This was our first trip back to Primary Children's and our first time taking Nathan anywhere other than the pediatrician's office. And it was quite an adventure!
Not only did we have to take one of the portable oxygen tanks and Nathan's pulse oximeter, but because PCMC is an hour from home, we also had to pack an extra oxygen tank (just in case) as well as Nathan's feeding pump and any meds that were due while we were to be gone. And to top it off, we had a small gym bag that we were using as our diaper bag that was packed full of supplies, including numerous burp rags and a change of clothes or two for Nathan (also just in case).
So as we walked down the halls of Primary Children's, we're sure we looked like quite the parade, toting all of Nathan's supplies and carrying him in his car seat carrier. Thinking back now, it's too bad we didn't take a picture of it!
The appointment with Dr. Riva-Cambin went pretty well. He asked how Nathan was doing, how his eyes were behaving, and how much he was throwing up. We let him know for the most part Nathan was doing quite well. There weren't really any issues with his eyes like there were a couple of months ago, but he was having some issues with vomiting, especially in the mornings, including one really scary one where we think he choked on it and aspirated a little bit.
In addition, since we had last seen Dr. Riva-Cambrin, Nathan's head size had gone down a little bit, which was a good sign that some of the fluid had drained from his head. However, his head size had not gone down as much as the doctor had wanted, which made him wonder if the shunt might be blocked. In fact, Dr. Riva-Cambrin actually hypothesized that because of all the scar tissue in Nathan's abdomen, that his body just might not be absorbing the fluid as quickly as it should.
So with the vomiting and the head size issues, Dr. Riva-Cambrin decided that he wanted to keep a close eye on Nathan and asked us to come back in 4 weeks for another follow-up.
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