Not as much goo is spewing from Elijah's eyes and nose (yum! you're welcome!), but the coughing has gotten worse and he has practically no appetite. Overall he looks and acts like he is feeling a little bit better. Yesterday morning I came downstairs to go to work and Elijah was sitting on the living room floor looking up at me. One eye was completely matted shut (Dan was in the kitchen getting a warm wash cloth for it), but he didn't seem bothered in the least. One-eyed, he smiled his big beautiful grin and welcomed me with a HIIIIiii! That's my boy, smiling through it all.
Last night Dan met some friends out (it's been a long week of caring for a sick boy for him, so he mucho deserved it) while Elijah and I chilled at home alone. At 6:30, which is about 30-45 minutes before his usual bedtime, he started to look extremely tired. I asked him if he wanted to go to bed and he pointed upstairs and said GOGO! So GO upstairs we did, where he promptly fell asleep.
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We had heard some mixed reviews about good old Dr. Nagib (E's neurosurgeon), so we weren't sure what to expect when we met him last week. We loved him! He is super intense, very quirky and it is evident that he is exceedingly good at what he does. He has been performing neurosurgery since I was born (21 years ago! Okay, maybe a little longer than that.). He has a very gentle nature, he was great with Elijah and he made it clear that he would have sat there for as long as it took to answer our questions. Once again we have evidence that Elijah is in very good hands. The best hands.
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I forgot to mention that Monday of this week was Elijah's 2-year anniversary for Heart Surgery #1! Happy (belated) day, little one.
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I am not exaggerating when I say what I'm about to say. MAYBE TWO TIMES in Elijah's life has he slept past 7:00 a.m. 99.98% of the time, he wakes up anywhere between the hours of 4:45 and 6:00. So. Last weekend at Grandma's house? Here were his three wake-up times: 7:20, 7:30 and 8:15. WHAT?! She put him to bed at the same time we do, his room at home is just as dark and quiet as hers. I can't figure it out! It makes me feel bad, like I don't have the perfect combination of factors in our own home that can get Elijah the best sleep possible.
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I promise I'll post vacation pics this weekend! Sorry I'm a slacker. I've been catching up on sleep. Have I ever mentioned how much I love our bed?
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June 18th, Elijah's upcoming surgery date, has triple significance. It falls just before Father's Day weekend, which is also the summer solstice. I just realized today that June 18, 2003, was my start date for my current job. Elijah's big dates always have other significance, but triple?? Personally I think it's assurance that this surgery is going to do amazing things for Elijah. I love that.
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It has been a very long (yet short) week. I'm happy the weekend is here. Dan might work at the dropzone if the weather cooperates and Elijah and I have, um, let's see..oh yeah, NOTHING on our menu.
Showing posts with label tethered cord. Show all posts
Showing posts with label tethered cord. Show all posts
Friday, May 29, 2009
Wednesday, May 27, 2009
Surgery date
Looks like Father's Day and the summer solstice are our holidays to spend in the hospital this time! Surgery has been rescheduled for June 18. Elijah will need to remain flat on his back for two days after surgery (which means he will be heavily sedated during that time), and mostly on his back (and still in the hospital) for another 3-5 days.
Elijah is feeling crummy. It's so sad. Goop is oozing out of his eyes, his tummy is upset, he grabs at his ears a lot and his cough sounds just awful. He smiles through it all, though. Our tough boy. The goopy medicine we have to put in his eyes three times a day is torture for him, and it is awful to see him so upset.
Dan will be spending the majority of the week caring for the little sicky, so keep his well-being in your prayers, too, along with Elijah's health. Thank you!!
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Despite being ill, he is still progressing really well with his communication. Yesterday he started saying TRUCK (kuck) and STRAW (aw). Then he showed me one finger and said UH, two fingers and said OO and so on, all the way to five. I didn't even prompt him with this, he just started doing it. Go Elijah!
Elijah is feeling crummy. It's so sad. Goop is oozing out of his eyes, his tummy is upset, he grabs at his ears a lot and his cough sounds just awful. He smiles through it all, though. Our tough boy. The goopy medicine we have to put in his eyes three times a day is torture for him, and it is awful to see him so upset.
Dan will be spending the majority of the week caring for the little sicky, so keep his well-being in your prayers, too, along with Elijah's health. Thank you!!
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Despite being ill, he is still progressing really well with his communication. Yesterday he started saying TRUCK (kuck) and STRAW (aw). Then he showed me one finger and said UH, two fingers and said OO and so on, all the way to five. I didn't even prompt him with this, he just started doing it. Go Elijah!
Tuesday, May 26, 2009
What a mess!
Wow, welcome home, Us!
We just got done with Elijah's pulmonology appointment, which was scheduled months ago as a croup/asthma follow-up. The timing of this appointment could not have been more perfect, with Elijah being so sick right now (and especially since Dr. K is also an intensivist, which makes him a very smart guy).
Elijah has a double ear infection, double pink eye, bronchitis and a touch of the flu or some bug that is making his tummy upset. He has never had pink eye or an ear infection before, so this is crazy!
Because of all of the medications he will be taking for the next three weeks to cure all of these ailments, we are going to need to reschedule the tethered cord surgery. That's kind of a bummer (especially since this morning we were given the opportunity to do it two days from now), but we have to remember that our timing is not always aligned with God's timing.
Elijah's BIG event days tend to fall on or very close to days with other significance, so I have kind of been feeling like June 4th wasn't HIS day for surgery anyway.
Since Elijah gets sick so often, Dr. K wants to run labs to check his immune system while he is sedated for surgery. He seems to think things will check out normal and that we are just "unlucky." That's us! Except, I don't like to use that word. I prefer to say that we are just given extra challenges. So far, extra challenges have been good for us, so I guess we'll keep taking them!
We just got done with Elijah's pulmonology appointment, which was scheduled months ago as a croup/asthma follow-up. The timing of this appointment could not have been more perfect, with Elijah being so sick right now (and especially since Dr. K is also an intensivist, which makes him a very smart guy).
Elijah has a double ear infection, double pink eye, bronchitis and a touch of the flu or some bug that is making his tummy upset. He has never had pink eye or an ear infection before, so this is crazy!
Because of all of the medications he will be taking for the next three weeks to cure all of these ailments, we are going to need to reschedule the tethered cord surgery. That's kind of a bummer (especially since this morning we were given the opportunity to do it two days from now), but we have to remember that our timing is not always aligned with God's timing.
Elijah's BIG event days tend to fall on or very close to days with other significance, so I have kind of been feeling like June 4th wasn't HIS day for surgery anyway.
Since Elijah gets sick so often, Dr. K wants to run labs to check his immune system while he is sedated for surgery. He seems to think things will check out normal and that we are just "unlucky." That's us! Except, I don't like to use that word. I prefer to say that we are just given extra challenges. So far, extra challenges have been good for us, so I guess we'll keep taking them!
Monday, May 25, 2009
How to become Totally Exhausted Human Being (TEHB)
1. Leave for vacation an already sleep-deprived insomniac.
2. Wake up every morning at 4:00 while on vacation because that is when Elijah would be getting up (6:00 our time), and then remain unable to go back to sleep.
3. On the second day of vacation, after being tired of being tired, drink something called "Amp!" in an attempt to wake up because it has tons of caffeine and sugar and who knows what else in it.
4. A few hours after drinking the gigantic can of Amp!, lie awake in bed until 3:30 a.m. because the mystery contents are not allowing you to fall asleep.
5. Travel back home the next morning after only getting about 2.5 fitful hours of sleep.
6. Come home to very sick, coughing, vomiting, goopy-eyed, feverish, clingy little boy.
Ugh, we are indeed tired and sick here. Even so, Dan and I had an amazing vacation (and Elijah had a great time with Grandma and Grandpa)! I will update with a few highlights and pics later this week.
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A quick update on our appointment with Elijah's neurosurgeon last Friday...
Surgery to release Elijah's tethered spinal cord is indeed in the works, and soon. Like, next Thursday. That date could possibly change due to a piece of equipment not being available at the hospital, but we will find out for sure tomorrow. The thing about this surgery that we were surprised to learn is that recovery time is much longer than we expected. Dr. N estimated that Elijah will be in the hospital for a week following surgery.
The surgeon was unable to tell us that this surgery would help Elijah with his walking. It is possible, but there's no way to know until we do it. If left untreated, a tethered cord can cause a few different serious issues, so we want to get the surgery done as soon as possible.
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We have a previously scheduled appointment with Elijah's pulmonologist in the morning, which is perfect because it will be good to get him checked out since he is so sick right now. We're not sure what is going on with our little man right now, but he sure doesn't feel well. Please say a prayer for healing for him tonight! Thanks for checking in on him.
2. Wake up every morning at 4:00 while on vacation because that is when Elijah would be getting up (6:00 our time), and then remain unable to go back to sleep.
3. On the second day of vacation, after being tired of being tired, drink something called "Amp!" in an attempt to wake up because it has tons of caffeine and sugar and who knows what else in it.
4. A few hours after drinking the gigantic can of Amp!, lie awake in bed until 3:30 a.m. because the mystery contents are not allowing you to fall asleep.
5. Travel back home the next morning after only getting about 2.5 fitful hours of sleep.
6. Come home to very sick, coughing, vomiting, goopy-eyed, feverish, clingy little boy.
Ugh, we are indeed tired and sick here. Even so, Dan and I had an amazing vacation (and Elijah had a great time with Grandma and Grandpa)! I will update with a few highlights and pics later this week.
-----------------
A quick update on our appointment with Elijah's neurosurgeon last Friday...
Surgery to release Elijah's tethered spinal cord is indeed in the works, and soon. Like, next Thursday. That date could possibly change due to a piece of equipment not being available at the hospital, but we will find out for sure tomorrow. The thing about this surgery that we were surprised to learn is that recovery time is much longer than we expected. Dr. N estimated that Elijah will be in the hospital for a week following surgery.
The surgeon was unable to tell us that this surgery would help Elijah with his walking. It is possible, but there's no way to know until we do it. If left untreated, a tethered cord can cause a few different serious issues, so we want to get the surgery done as soon as possible.
------------------
We have a previously scheduled appointment with Elijah's pulmonologist in the morning, which is perfect because it will be good to get him checked out since he is so sick right now. We're not sure what is going on with our little man right now, but he sure doesn't feel well. Please say a prayer for healing for him tonight! Thanks for checking in on him.
Wednesday, May 20, 2009
Wearisome worry-wart
Update:
I just spoke with a nurse from the neurosurgeon's office. Dr. Nagib wants to see Elijah soon. This Friday soon. I am taking Friday off work anyway since Dan and I are leaving for vacation that afternoon, so it works perfectly that Elijah's appointment is in the morning. Yes, I am a tiny bit freaked out about the surgeon wanting us in so quickly, but that just means the sooner we will know what is going on!
And, doesn't it suit Elijah that a big event (this appointment) would fall on another significant date (Leave For Vacation Day)? This always happens, and I believe it is one of the little things God does to remind me that everything is going to be ok.
Original post:
Elijah's newly acquired neurosurgeon has not had a chance to review the scans of his spine. I suppose he is a pretty important guy, so I'll cut him some slack. During this period of waiting for more information, I can't help but worry a bit. Have we caused damage to our little boy's body by taking 2+ years to figure out he has a tethered spinal cord? I know it's good that we are learning this now instead of later, but what if we had known about it a year and a half ago? Would Elijah be walking by now? I see the things he misses out on by not being able to walk and it breaks my heart to think that maybe we could have prevented this by catching the tethered cord earlier.
To add to my worries, Elijah has been refusing (screaming, crying, freaking out) to use his walker for the past week or so. I wonder if he is in pain? Discomfort? Being stubborn? Just not interested? Who knows.
I know what you're thinking because I'm thinking it, too. How silly of me to worry so much about this. Elijah will walk when the time is right. He is perfect. We couldn't love him any less than we do now. He is happy and healthy. God has taken, and is taking, very good care of him.
It has been a tired, tense past couple of days (weeks?) in our house. Nothing in particular has happened, we are just sleep-deprived (Dan and I have suddenly forgotten how to sleep, which is totally maddening) and we feel weary. That's why it is a very good thing that we leave for vacation on Friday! Elijah is going to stay with Grandma for a few days while Dan and I travel across the country to lay by a pool, soak up the hot sun, eat lots of yummy food and just spend some quality alone time together. I honestly cannot wait. It is always tough for me to be away from my little boy (wait until you see the flashcards I'm going to make that are going to help me with this!), but Dan and I need this right now. When we get home, we will be a much better couple and much better parents because of it.
On a positive note, Elijah is saying new words left and right. It is just awesome to see (hear) this. Last night I heard him say TEETH (teet), MAP (ap) and DONE (duh). I love it! Keep it up, my amazing little boy.
Oh, and Elijah is 27 months old today!
I hope you all are having a good week. Thank you for checking in..
p.s. Miraculously, Elijah's croup didn't turn into anything at all last week. Not even a cough!
I just spoke with a nurse from the neurosurgeon's office. Dr. Nagib wants to see Elijah soon. This Friday soon. I am taking Friday off work anyway since Dan and I are leaving for vacation that afternoon, so it works perfectly that Elijah's appointment is in the morning. Yes, I am a tiny bit freaked out about the surgeon wanting us in so quickly, but that just means the sooner we will know what is going on!
And, doesn't it suit Elijah that a big event (this appointment) would fall on another significant date (Leave For Vacation Day)? This always happens, and I believe it is one of the little things God does to remind me that everything is going to be ok.
Original post:
Elijah's newly acquired neurosurgeon has not had a chance to review the scans of his spine. I suppose he is a pretty important guy, so I'll cut him some slack. During this period of waiting for more information, I can't help but worry a bit. Have we caused damage to our little boy's body by taking 2+ years to figure out he has a tethered spinal cord? I know it's good that we are learning this now instead of later, but what if we had known about it a year and a half ago? Would Elijah be walking by now? I see the things he misses out on by not being able to walk and it breaks my heart to think that maybe we could have prevented this by catching the tethered cord earlier.
To add to my worries, Elijah has been refusing (screaming, crying, freaking out) to use his walker for the past week or so. I wonder if he is in pain? Discomfort? Being stubborn? Just not interested? Who knows.
I know what you're thinking because I'm thinking it, too. How silly of me to worry so much about this. Elijah will walk when the time is right. He is perfect. We couldn't love him any less than we do now. He is happy and healthy. God has taken, and is taking, very good care of him.
It has been a tired, tense past couple of days (weeks?) in our house. Nothing in particular has happened, we are just sleep-deprived (Dan and I have suddenly forgotten how to sleep, which is totally maddening) and we feel weary. That's why it is a very good thing that we leave for vacation on Friday! Elijah is going to stay with Grandma for a few days while Dan and I travel across the country to lay by a pool, soak up the hot sun, eat lots of yummy food and just spend some quality alone time together. I honestly cannot wait. It is always tough for me to be away from my little boy (wait until you see the flashcards I'm going to make that are going to help me with this!), but Dan and I need this right now. When we get home, we will be a much better couple and much better parents because of it.
On a positive note, Elijah is saying new words left and right. It is just awesome to see (hear) this. Last night I heard him say TEETH (teet), MAP (ap) and DONE (duh). I love it! Keep it up, my amazing little boy.
Oh, and Elijah is 27 months old today!
I hope you all are having a good week. Thank you for checking in..
p.s. Miraculously, Elijah's croup didn't turn into anything at all last week. Not even a cough!
Thursday, May 14, 2009
Tethered spinal cord
I spoke with Elijah's neurologist yesterday about his MRI results. The great news is that his brain looks perfect! I knew in my heart that there wouldn't be anything wrong with his smart, precious little head, so this news didn't come as a surprise. I was still relieved to hear it, though.
The other, not so desirable, news is that Elijah has a tethered spinal cord. We have always known that this could be a possibility because of his sacral dimple. The ultrasound that was done a few days after birth was normal, but obviously an MRI is a much more detailed test and it showed that it is indeed tethered.
What this means is that the end of Elijah's spinal cord is tightly fixed so there is not the normal movement on the lower end of it. There is something "binding" the spinal cord down, and therefore, it is "tethered." Dr. J claimed to not be enough of an expert to be giving me information on just how tethered Elijah's spinal cord is or where we go from here, so he is passing his scans onto a neurosurgeon. He did say that surgery to release the tether will likely be a reality for us. From the way it sounds, it's just as "easy" as that. Surgery would release the tether and the spinal cord wouldn't be constricted anymore.
Dr. J told me that it is a very good thing we are catching this now. Finding tethered cords later in life can be very bad, painful, stunting. So, thank God we went through with this test (especially since I was seriously thinking about not going through with it).
Now we just wait for the surgeon to call us and go from there. Maybe this news should have me really upset, but it doesn't. This could explain A LOT about our little boy. This could be the reason for the non-walking, and even some of his sensory issues. We are hopeful that this surgery will help Elijah out tremendously!
Dr. J told me that the neurosurgeon he is referring us to is the nation's BEST at fixing tethered cords. He claims this man can "work magic," and that he would trust him doing surgery on his own children. Again, we feel blessed to have so many amazing people caring for our little munchkin.
Which gets me thinking. How many people ARE caring for Elijah? We continue to add people to the list.
General pediatrician
Cardiologist
Pulmonologist
Urologist
Geneticist
ENT doc
Orthotist
Neurologist
Heart surgeon
Neuro surgeon
2 speech therapists
2 physical therapists
1 occupational therapist
p.s. Dan and I had a fabulous anniversary dinner last night. Thankfully my body held off getting sick till this morning! And thankfully I have leftovers!
The other, not so desirable, news is that Elijah has a tethered spinal cord. We have always known that this could be a possibility because of his sacral dimple. The ultrasound that was done a few days after birth was normal, but obviously an MRI is a much more detailed test and it showed that it is indeed tethered.
What this means is that the end of Elijah's spinal cord is tightly fixed so there is not the normal movement on the lower end of it. There is something "binding" the spinal cord down, and therefore, it is "tethered." Dr. J claimed to not be enough of an expert to be giving me information on just how tethered Elijah's spinal cord is or where we go from here, so he is passing his scans onto a neurosurgeon. He did say that surgery to release the tether will likely be a reality for us. From the way it sounds, it's just as "easy" as that. Surgery would release the tether and the spinal cord wouldn't be constricted anymore.
Dr. J told me that it is a very good thing we are catching this now. Finding tethered cords later in life can be very bad, painful, stunting. So, thank God we went through with this test (especially since I was seriously thinking about not going through with it).
Now we just wait for the surgeon to call us and go from there. Maybe this news should have me really upset, but it doesn't. This could explain A LOT about our little boy. This could be the reason for the non-walking, and even some of his sensory issues. We are hopeful that this surgery will help Elijah out tremendously!
Dr. J told me that the neurosurgeon he is referring us to is the nation's BEST at fixing tethered cords. He claims this man can "work magic," and that he would trust him doing surgery on his own children. Again, we feel blessed to have so many amazing people caring for our little munchkin.
Which gets me thinking. How many people ARE caring for Elijah? We continue to add people to the list.
General pediatrician
Cardiologist
Pulmonologist
Urologist
Geneticist
ENT doc
Orthotist
Neurologist
Heart surgeon
Neuro surgeon
2 speech therapists
2 physical therapists
1 occupational therapist
p.s. Dan and I had a fabulous anniversary dinner last night. Thankfully my body held off getting sick till this morning! And thankfully I have leftovers!
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