As you read in my last post, there has been a lot of sickness in the Spears family lately. First our 2 shunt revisions the first week of February, then the next week Karlie had the flu, then this past week Kinsley had the flu, then on Friday Karlie woke up with a bad bladder infection...I made the mistake of asking "What else can happen?"
Anderson was with his Aunt CaCa (Jamie's sister) since Kinsley had the flu and we didn't want him to get sick. She called me Friday before lunch and told me he was running a low fever, didn't sleep well the night before, and wouldn't take a bottle. Oh boy... here we go. I was afraid that he was coming down with the flu- even though we had gotten him out of the house and away from the girls both times. So we went to the Pediatrician's office, where we had just been on Thursday to get the stitches out from our last surgery. They did a flu swab, checked for RSV, and did some bloodwork. Everything was negative except the bloodwork showed a small possibility for a virus. Usually at this point they send you home, tell you it's a virus and if you get worse then come back. However, his head circumference had changed from 48cm to 50.5cm since the day before...and when you have a shunt, that changes everything.
So they put in a call to our neurosurgeon, who told them we needed to come to ER to be checked out. We hopped in the car, picked up Jamie from work, made sure the girls were okay with Jamie's dad, and off we went.
All I will say about Friday night at the ER is be glad that I didn't have a computer...it was the most frustrating and tiring 21 hours of my life. I think for now, I will play the Forrest Gump card and say "That's all I have to say about that!" :)
We eventually got to a room (where we still are). They don't have any idea what is going on. They don't think anything is wrong with the new(est) shunt, but aren't positive. His fever disappeared as soon as we got the hospital, and the feeding issues resolved themselves last night. We've had 2 IV's, been catheterized for urine, had an MRI, a CT scan, and a shunt series of xrays. Oh yes, and they also tapped the shunt.
What have all of these tests revealed? Well here are a few things we know now that we didn't know before Friday:
- The cyst has shrunk significantly in size since our surgery 2 weeks ago, and possibly has collapsed. In December the cyst measured 13cm in length- it is now down to 3.8cm.
- Now that the cyst is smaller, they are able to get a better view of how much brain tissue there is on the right side. Remember that when he was first born, they didn't think there was much, if any, brain tissue. We now know that there is brain tissue on the right side, but not quite all of it is there. There is some brain tissue on the top of his right hemisphere that is missing.
- The MRI labled him as having "dysgenesis" of the corpus callosum rather than "agenesis". Agenesis means it's not there at all, dysgenesis means it is there- but either not all there or malformed. The neurosurgeon said functionally they have the same results...I'm going to check more into this because every MRI in the past has said agenesis. It might not matter to him, but it does to me.
Two doctors came in this morning and told us we could go home now that he is eating and feeling better. Then about 2 hours later they came back and said they want us to stay another night so that our neurosurgeon can look at all of the test results and give us the okay to go home. I'm not sure what changed their minds, but we will wait until tomorrow and see if we find out anything else. Until then...
Sunday, February 20, 2011
Tuesday, February 15, 2011
Trying to get ahead...
It seems that the Spears clan can not get ahead lately... Jamie and I have missed more days of work in the past 2 months than we have in probably the past 2 years. Our family is usually very healthy and seem to bypass many of the sicknesses/viruses that go around- but not this year.
We had Anderson's shunt revision in December. Then another 2 shunt revisions in February.
The very next week Karlie got the flu and fought it for 4-5 days.
This morning, Kinsley woke up with a stomach virus.
So I'm home. Again.
I love my kids and I don't mind at all to take care of them when they are sick or need me...but it seems to have hit all 3 kids this year and has made for a rough February.
I always volunteer to "take one for the team" and take care of the sickly child- being a teacher, I have a pretty strong immune system. So far Jamie and Ihave been lucky, but I feel like I might need to "knock on wood" as I type that.
Hopefully everyone will soon be back on the mend and no one else will get sick.
Anderson is still recovering nicely from his surgery. In fact, he's doing really good. I need to post some new pics/videos. He is the happiest, strongest kid I know. I am anxious for him to go back for another PT eval now that he is able to do so much more.
I will try to do a longer update on him soon with pictures and everything, but for now...I am off to check on Kinsley.
We had Anderson's shunt revision in December. Then another 2 shunt revisions in February.
The very next week Karlie got the flu and fought it for 4-5 days.
This morning, Kinsley woke up with a stomach virus.
So I'm home. Again.
I love my kids and I don't mind at all to take care of them when they are sick or need me...but it seems to have hit all 3 kids this year and has made for a rough February.
I always volunteer to "take one for the team" and take care of the sickly child- being a teacher, I have a pretty strong immune system. So far Jamie and Ihave been lucky, but I feel like I might need to "knock on wood" as I type that.
Hopefully everyone will soon be back on the mend and no one else will get sick.
Anderson is still recovering nicely from his surgery. In fact, he's doing really good. I need to post some new pics/videos. He is the happiest, strongest kid I know. I am anxious for him to go back for another PT eval now that he is able to do so much more.
I will try to do a longer update on him soon with pictures and everything, but for now...I am off to check on Kinsley.
Thursday, February 3, 2011
See for yourself
We are amazed at this little man! We are home and he hasn't missed a beat! He has picked up doing everything he was doing before this last episode. As you can see with your own eyes, he looks great... (Please excuse my shaky hand while videoing...I'm not very good at it.) This video was taken when we first got home yesterday and we were unpacking our things...it's just taken me this long to figure out how to post the silly video!
Going home!
Anderson had a great night last night. Neurosurgery came in this morning and gave us the OK to go home today. Yippee!!!
This smile pretty much sums up how happy we all are today:
Wednesday, February 2, 2011
A not-so-subtle Sign
Anderson slept great last night, which allowed Jamie and me to also get some rest. He was happy this morning and seemed to feel pretty good. The surgeon's nurse practitioner came to talk to us and make sure we understood what the plan was for today. Her name is Angel.
They came and got us at 8:30 to take us downstairs for surgery. When we got to the Pre-Op holding area, we were introduced to our nurse- Hope. At that point I knew everything was going to be okay. It was another one of those moments that I could just feel God's presence all around us! He didn't want me to miss that, so we had angel and hope all around us! :)
It ended up being around 10:30 before they took him backto surgery. It lasted about 45 minutes. When the surgeon walked in this time, he looked much more pleased. The surgery had been a success! They went in through a spot on the top of his head and were able to see the cyst and successfully get the catheter through the cyst wall. He feels this shunt should last awhile, although there are never any promises with shunts.
We are in a regular room, and Anderson is sleeping peacefully. He doesn't seem to be in a lot of pain right now, so I pray that continues to be the case. If we have a good night and everything looks good we should come home some time tomorrow.
Again thank you for the prayers. We had no idea we were in for all of this when we came to the ER Monday night. You've probably noticed that when I have a lot on my mind I like to blog about it- I guess that's my therapy. But the best part is all of the calls, prayers, and comments on my facebook page- that always makes me feel like we are surrounded by people who love and care about Anderson, and who know that God is able to heal and aren't afraid to ask Him to do just that.
They came and got us at 8:30 to take us downstairs for surgery. When we got to the Pre-Op holding area, we were introduced to our nurse- Hope. At that point I knew everything was going to be okay. It was another one of those moments that I could just feel God's presence all around us! He didn't want me to miss that, so we had angel and hope all around us! :)
It ended up being around 10:30 before they took him backto surgery. It lasted about 45 minutes. When the surgeon walked in this time, he looked much more pleased. The surgery had been a success! They went in through a spot on the top of his head and were able to see the cyst and successfully get the catheter through the cyst wall. He feels this shunt should last awhile, although there are never any promises with shunts.
We are in a regular room, and Anderson is sleeping peacefully. He doesn't seem to be in a lot of pain right now, so I pray that continues to be the case. If we have a good night and everything looks good we should come home some time tomorrow.
Again thank you for the prayers. We had no idea we were in for all of this when we came to the ER Monday night. You've probably noticed that when I have a lot on my mind I like to blog about it- I guess that's my therapy. But the best part is all of the calls, prayers, and comments on my facebook page- that always makes me feel like we are surrounded by people who love and care about Anderson, and who know that God is able to heal and aren't afraid to ask Him to do just that.
Tuesday, February 1, 2011
Some bad news and some good news...
Whew...it's been a long day(s)...if this post is all over the place please forgive me, as I have now been 33 hours without sleep...(almost just as long without a shower...ewww). I'm hoping to fix both of these problems as soon as I type this post to update everyone on how things went today.
Let's do the not-so-good news first. You know it's not good when your surgeon walks into the conference room and says, "Things went okay." You also know it's not good when your surgeon, who is one of the top surgeons in the world when it comes to shunts says, "I haven't quite figured out how to fix this."
When they went in today, they again replaced the entire shunt system (not what I wanted), but our surgeon was not pleased at all with the amount of fluid that came out of the shunt when it was initially placed. Here's what he thinks is the problem: the lining of the cyst is so thick that he doesn't think the catheter of the shunt is getting poked all the way into the cyst. He feels that when he is putting the catheter in, it is just pushing against the cyst and maybe poking it some, but not completely puncturing the cyst to drain the fluid. He's not happy with this. He doesn't want us to leave without it fixed. ( I love him for this!) However, he's not sure what to do to fix it. He was very frustrated when he came out of surgery and honestly admitted that he needed to "figure it out." So he told us that Anderson would go from the recovery room to a CT scan to see where the shunt is compared to the cyst. If the shunt is not completely in the cyst (which he already feels it isn't because they only got a trickle of fluid out) then Anderson will go back into surgery tomorrow to try something different.
At this point, we are awaiting to hear what decision the doctors feel is best. Last we heard they were downstairs looking at the CT scan and trying to "problem solve".
While this isn't the best news, it's not that bad either. I mean, I don't want him to go back into surgery tomorrow, but if it saves him future surgeries, then it's a win. It does make me nervous that this may not be a "routine" surgery tomorrow. I do feel sorry for Anderson that he has to undergo another surgery, if that is what they decide. But in the big picture, I see the benefit of it.
The good news...remember that I specifically asked all of you to pray that Anderson would not be in as much pain with this surgery as his last one? Well...thank you for praying that specific prayer. I know you did, because after surgery on his way to the CT scan, he was playing with his toes, rolling in his bed, and talking. You absolutely could not tell that he had just come out of surgery with a large incision on his head and abdomen. It's powerful and amazing to watch him this afternoon. He is a totally different child than the day of our last surgery. God is so good!
Thank you for all of your thoughts, prayers, and kind words today. Please continue to pray- especially for the doctors as they try to figure all of this out and do what is best for Anderson.
Let's do the not-so-good news first. You know it's not good when your surgeon walks into the conference room and says, "Things went okay." You also know it's not good when your surgeon, who is one of the top surgeons in the world when it comes to shunts says, "I haven't quite figured out how to fix this."
When they went in today, they again replaced the entire shunt system (not what I wanted), but our surgeon was not pleased at all with the amount of fluid that came out of the shunt when it was initially placed. Here's what he thinks is the problem: the lining of the cyst is so thick that he doesn't think the catheter of the shunt is getting poked all the way into the cyst. He feels that when he is putting the catheter in, it is just pushing against the cyst and maybe poking it some, but not completely puncturing the cyst to drain the fluid. He's not happy with this. He doesn't want us to leave without it fixed. ( I love him for this!) However, he's not sure what to do to fix it. He was very frustrated when he came out of surgery and honestly admitted that he needed to "figure it out." So he told us that Anderson would go from the recovery room to a CT scan to see where the shunt is compared to the cyst. If the shunt is not completely in the cyst (which he already feels it isn't because they only got a trickle of fluid out) then Anderson will go back into surgery tomorrow to try something different.
At this point, we are awaiting to hear what decision the doctors feel is best. Last we heard they were downstairs looking at the CT scan and trying to "problem solve".
While this isn't the best news, it's not that bad either. I mean, I don't want him to go back into surgery tomorrow, but if it saves him future surgeries, then it's a win. It does make me nervous that this may not be a "routine" surgery tomorrow. I do feel sorry for Anderson that he has to undergo another surgery, if that is what they decide. But in the big picture, I see the benefit of it.
The good news...remember that I specifically asked all of you to pray that Anderson would not be in as much pain with this surgery as his last one? Well...thank you for praying that specific prayer. I know you did, because after surgery on his way to the CT scan, he was playing with his toes, rolling in his bed, and talking. You absolutely could not tell that he had just come out of surgery with a large incision on his head and abdomen. It's powerful and amazing to watch him this afternoon. He is a totally different child than the day of our last surgery. God is so good!
Thank you for all of your thoughts, prayers, and kind words today. Please continue to pray- especially for the doctors as they try to figure all of this out and do what is best for Anderson.
Surgery #3
We received word this morning that Anderson's shunt revision is scheduled for 9:30 am today. We are just trying to keep him happy, as he is very hungry. We are praying for the surgeons and that the surgery goes well with good results and minimal pain.
Thanks for any prayers you can send our way! He is already living proof that prayers are answered and God still performs miracles!
I will update more after surgery.
Thanks for any prayers you can send our way! He is already living proof that prayers are answered and God still performs miracles!
I will update more after surgery.
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