Wednesday, December 31, 2008
Saturday, December 27, 2008
Update 12/27/08
Belated Christmas greetings from the hospital. I know, big bummer, but at least we were able to spend Christmas Eve and Christmas Day at home (barely). I'll have to go back a few days to give you the whole story.
On Monday (12/22) Beckham woke up at 3:00 AM screaming. When I pulled him out of his crib he was smoking hot with a fever. I brought him downstairs, laid him on the couch and went to get the thermometer and Tylenol. When I turned around he had vomited everywhere. I grabbed Nate at this point and we cleaned Beck up together. Beckham also had been grabbing his uhh...male part (that's probably the best way to say that) for the last couple of days and Nate and I figured it was probably a UTI. We decided to take him into the ER for further evaluation even with the FREEZING weather. The temperature read -4 on the temperature gage in my car with a wind chill of -20 as we drove to the hospital. Yikes! At the hospital they took labs (blood and urine) that showed he was still nutropenic (low WBC), but with elevated levels to show that he had some sort of viral or bacterial infection. He was given a shot of Rocephin and sent home.
The next couple of days were rough as he continued to have "male pain" and continual vomiting. A lot of Zophran, Tylenol, and even Tylenol with Codeine was used during this time. When Christmas Eve rolled around Beck seemed to be feeling better - even though his male part looked horrible (I won't go into details, but trust me, it looked aweful!). We were anticipating being at home for Christmas day until we received a call from the hospital informing us that Beck's urine had grown bacteria. They asked us to bring him back in, which we fought desperately (because he did not have a fever and his vomiting had stopped), and won. We promised to take him to his doctor on Friday for a check-up.
At his check-up on Friday the doctor took one look at him (well, his male parts) and said that he needs to be in the hospital, and that he should have been in there earlier. We already knew this, but it was sure nice to be at home for the holiday.
For now, Beck is on heavy duty antibiotics and is being watched closely. We are expecting to stay over the weekend, but hoping to get out by the beginning of next week. Beck is ready to get out of here. The moment we walked into into this room, Beck started bawling because he knows this place way to well! He is going to be so mad at us when he is older for all that he has been put through. I don't know if he will forgive me for talking about his male reproductive organ on the internet. Sorry Beckham in advance!
All things aside, we had the most amazing Christmas ever. Our family was so spoiled. It seemed like everyone thought of our family and showered us with presents. Nate and I were extremely emotional about all of the kindness that has been shown. Thank you beyond words for everyone that reached out to us.
We will continue to keep you updated on anything. Merry Christmas (a few days late) and a very happy and healthy New Year!
Lots of love,
-Beckham and fam
On Monday (12/22) Beckham woke up at 3:00 AM screaming. When I pulled him out of his crib he was smoking hot with a fever. I brought him downstairs, laid him on the couch and went to get the thermometer and Tylenol. When I turned around he had vomited everywhere. I grabbed Nate at this point and we cleaned Beck up together. Beckham also had been grabbing his uhh...male part (that's probably the best way to say that) for the last couple of days and Nate and I figured it was probably a UTI. We decided to take him into the ER for further evaluation even with the FREEZING weather. The temperature read -4 on the temperature gage in my car with a wind chill of -20 as we drove to the hospital. Yikes! At the hospital they took labs (blood and urine) that showed he was still nutropenic (low WBC), but with elevated levels to show that he had some sort of viral or bacterial infection. He was given a shot of Rocephin and sent home.
The next couple of days were rough as he continued to have "male pain" and continual vomiting. A lot of Zophran, Tylenol, and even Tylenol with Codeine was used during this time. When Christmas Eve rolled around Beck seemed to be feeling better - even though his male part looked horrible (I won't go into details, but trust me, it looked aweful!). We were anticipating being at home for Christmas day until we received a call from the hospital informing us that Beck's urine had grown bacteria. They asked us to bring him back in, which we fought desperately (because he did not have a fever and his vomiting had stopped), and won. We promised to take him to his doctor on Friday for a check-up.
At his check-up on Friday the doctor took one look at him (well, his male parts) and said that he needs to be in the hospital, and that he should have been in there earlier. We already knew this, but it was sure nice to be at home for the holiday.
For now, Beck is on heavy duty antibiotics and is being watched closely. We are expecting to stay over the weekend, but hoping to get out by the beginning of next week. Beck is ready to get out of here. The moment we walked into into this room, Beck started bawling because he knows this place way to well! He is going to be so mad at us when he is older for all that he has been put through. I don't know if he will forgive me for talking about his male reproductive organ on the internet. Sorry Beckham in advance!
All things aside, we had the most amazing Christmas ever. Our family was so spoiled. It seemed like everyone thought of our family and showered us with presents. Nate and I were extremely emotional about all of the kindness that has been shown. Thank you beyond words for everyone that reached out to us.
We will continue to keep you updated on anything. Merry Christmas (a few days late) and a very happy and healthy New Year!
Lots of love,
-Beckham and fam
Saturday, December 20, 2008
Lock down
Our little family is officially on "lock down" at the moment. We were already on a semi lock down previous to this, but now it's full blown lock down.
Beckham hates lock down as much as we do!
Beckham had labs drawn twice this week. The first set of labs showed that his white blood count was in the critical stage. The transplant team did not believe that his labs were accurate because Beckham's platelets are in a very normal range (yeah for that) and it's very strange to have a low WBC and normal platelets. It is also strange because it took 3 pokes (in his head - that's his best bleeding site) and 2 finger sticks, and only a small amount of blood could be drawn. This should not be the case because Beck is on blood thinner and should be bleeding like a hose. His labs were re-tested on Thursday and the same thing happened - 3 pokes, 2 finger sticks, and very little blood. At least we got enough blood for all the labs. The lab tests came back the same results - low white blood count.
The doctors are a little baffled at this. I'm not so baffled - in the sense that when it comes to Beckham he is a mystery and I have come to expect that! For now they have decided that Beck is truly nutropenic (low WBC) and extra, extra immuno suppressed (on top of his already high immuno suppression). This could be caused from the Valcyte he is taking for his CMV. That med is known to cause nutropenia, but usually with the nutropenia there is low platelets to go along with it. His Valcyte dose has been cut in half for now to see if that will help return his WBC to a more normal range.
Anyway, the point is that we have to be extra, extra careful with Beckham right now, and his very low immuno suppressed state. We cannot leave the house except for doctors appointments. We ask that if you are coming to visit us (which we love because we love visitors) please make sure that you are in good health - meaning that you are not sick, think that you are getting sick, or have been around anyone that is sick. Please know that you are always welcome in our house. We are not trying to drive anyone away, just keep our little guy safe.
Thanks for understanding!
Beckham hates lock down as much as we do!Beckham had labs drawn twice this week. The first set of labs showed that his white blood count was in the critical stage. The transplant team did not believe that his labs were accurate because Beckham's platelets are in a very normal range (yeah for that) and it's very strange to have a low WBC and normal platelets. It is also strange because it took 3 pokes (in his head - that's his best bleeding site) and 2 finger sticks, and only a small amount of blood could be drawn. This should not be the case because Beck is on blood thinner and should be bleeding like a hose. His labs were re-tested on Thursday and the same thing happened - 3 pokes, 2 finger sticks, and very little blood. At least we got enough blood for all the labs. The lab tests came back the same results - low white blood count.
The doctors are a little baffled at this. I'm not so baffled - in the sense that when it comes to Beckham he is a mystery and I have come to expect that! For now they have decided that Beck is truly nutropenic (low WBC) and extra, extra immuno suppressed (on top of his already high immuno suppression). This could be caused from the Valcyte he is taking for his CMV. That med is known to cause nutropenia, but usually with the nutropenia there is low platelets to go along with it. His Valcyte dose has been cut in half for now to see if that will help return his WBC to a more normal range.
Anyway, the point is that we have to be extra, extra careful with Beckham right now, and his very low immuno suppressed state. We cannot leave the house except for doctors appointments. We ask that if you are coming to visit us (which we love because we love visitors) please make sure that you are in good health - meaning that you are not sick, think that you are getting sick, or have been around anyone that is sick. Please know that you are always welcome in our house. We are not trying to drive anyone away, just keep our little guy safe.
Thanks for understanding!
Monday, December 15, 2008
Update from our "Busy Week"
Here's the scoop from our busy week:
Day one of tests - We (Kim, Beckham & Gwen) arrived in Iowa City in the early AM for a retinal exam. The doctors wanted to make sure that Beckham's stroke did not go into his eyes and the best way to do this is by dilating his eyes. The first set of tests went great (except for the grumpy, stingy optometrist student - come on people, don't sign up to work with kids if you have zero skills and tolerance with children) and we were sent away for a half an hour to wait for his eyes to fully dilate. While we were waiting I took the kids to the cafeteria to eat. Beckham's appetite had been lacking previously and when he finally stuck something in his mouth he immediately threw it up. I called his transplant coordinator to let her know about the vomiting (it had been happening for the previous couple of days) and she thought it was best for Beck to see his transplant doctor while we were in Iowa City and scheduled an appointment for later that day. Meanwhile, the kids and I trudged back to the Opthamologist to finish up the eye exam. He gave us great news that Beck's stroke did not go into his eyes and he is also not near or far sighted (I didn't know they could tell that in someone so small - crazy!). After that we headed to the clinic to see Beck's transplant doctor. He looked at Beck and decided that he looked really well except for his ears. We were put on another Rx and sent home (aka - Heather's) for the day.
I know that I have not mentioned how well the kids behaved during all of these appointments, but that is because I don't want to get started on that subject. All I can say is that they were much worse than I anticipated.
Day two of tests - We woke up to an ice storm which delayed our early morning arrival at the hospital by quite a bit. At least I did not have to take Gwen to this appointment (thanks again Heather). After scraping the ice and making it through traffic we arrived at the MRI clinic. The doctors had decided to just use anesthesia and put Beckham right out instead of sedation because of his past history. What a blessing this was and because of that the MRI and MRV took just over an hour. After the MRI & MRV were finished the doctors brought me out a very grumpy, groggy, and stoned Beckham to be wheeled out to the recovery area. As we waited, his neurologist reviewed the MRI results. She actually came in and showed me the scans and compared them with his previous MRI's. The results were very positive. Beckham's bleed is defiantly shrinking and the fluid around the brain is lessoning as well. This now rules out the possibility of hyrocephalis (yeah!). The clots in his brain and neck are also shrinking. They could not see the size of the clots in his brain or neck in the MRI & MRV, but they could see the blood flow around it and that is a positive sign that they are shrinking (and yes they are sadly still there). In fact, after Beck's stroke he had almost no blood flow on the right side of his brain and now there is quite a bit of flow. It is not completly back to normal but that is to be expected. It should take around 6 months for it to return to normal. As for now we will still continue with the Lovenox as Beckham's treatment for his clot and bleed.
The drive home to Des Moines was slow due to the road conditions. I debated on whether or not I should stay another night in Iowa City because of the weather, but soon decided against it. This was probably not the smartest decision because when I was about 20 minutes outside of Des Moines I hit an icy patch on the road, swerved out of control, did a 360 in the freeway, and flew into the median. I immedialy took a deep breath, placed my hand over my heart to will it out of hyper speed, turned and looked at my children's faces, and thanked my Heavenly Father that our lives were spared. After that I was able to put our SUV in 4 wheel drive and drive back onto the freeway and the rest of the way home.
The rest of the week - Nate's parents arrived on Thursday to celebrate Nate's graduation and had a great time with the kids.. It was a wonderful, exciting event for the entire family. Nate's speech went great, and his graduating class surprised us with a monitary donation and other special gifts. We feel so fortunate that Nate was able to attend such a great school with such loving, kind, and very understanding people. We can't thank them enough for all that they have done for our family. At the end of the ceremony the graduates walk up to the stage and are given a nursing pin. A family member is invited to place the pin on the graduate and as I did so (with Beck on my hip, and Gwen being towed behind, her hand in mine) I walked poor little Gwen right into the side of a pole. When we got to the stage she was bawling uncontrolably and her poor forehead was red, with a huge welt in the middle - I know, the "mother of the year" award definaly goes to me! It's alright because it all turned out great in the end.
No pics this time of our Iowa City trip or graduation (I forgot my camera at gradiation - luckily Nate's parents and much more on top of the ball than I am, and brought their camera).
Thank you for your continued prayers and support for our family. I will post pics soon!
-The family Scads
Day one of tests - We (Kim, Beckham & Gwen) arrived in Iowa City in the early AM for a retinal exam. The doctors wanted to make sure that Beckham's stroke did not go into his eyes and the best way to do this is by dilating his eyes. The first set of tests went great (except for the grumpy, stingy optometrist student - come on people, don't sign up to work with kids if you have zero skills and tolerance with children) and we were sent away for a half an hour to wait for his eyes to fully dilate. While we were waiting I took the kids to the cafeteria to eat. Beckham's appetite had been lacking previously and when he finally stuck something in his mouth he immediately threw it up. I called his transplant coordinator to let her know about the vomiting (it had been happening for the previous couple of days) and she thought it was best for Beck to see his transplant doctor while we were in Iowa City and scheduled an appointment for later that day. Meanwhile, the kids and I trudged back to the Opthamologist to finish up the eye exam. He gave us great news that Beck's stroke did not go into his eyes and he is also not near or far sighted (I didn't know they could tell that in someone so small - crazy!). After that we headed to the clinic to see Beck's transplant doctor. He looked at Beck and decided that he looked really well except for his ears. We were put on another Rx and sent home (aka - Heather's) for the day.
I know that I have not mentioned how well the kids behaved during all of these appointments, but that is because I don't want to get started on that subject. All I can say is that they were much worse than I anticipated.
Day two of tests - We woke up to an ice storm which delayed our early morning arrival at the hospital by quite a bit. At least I did not have to take Gwen to this appointment (thanks again Heather). After scraping the ice and making it through traffic we arrived at the MRI clinic. The doctors had decided to just use anesthesia and put Beckham right out instead of sedation because of his past history. What a blessing this was and because of that the MRI and MRV took just over an hour. After the MRI & MRV were finished the doctors brought me out a very grumpy, groggy, and stoned Beckham to be wheeled out to the recovery area. As we waited, his neurologist reviewed the MRI results. She actually came in and showed me the scans and compared them with his previous MRI's. The results were very positive. Beckham's bleed is defiantly shrinking and the fluid around the brain is lessoning as well. This now rules out the possibility of hyrocephalis (yeah!). The clots in his brain and neck are also shrinking. They could not see the size of the clots in his brain or neck in the MRI & MRV, but they could see the blood flow around it and that is a positive sign that they are shrinking (and yes they are sadly still there). In fact, after Beck's stroke he had almost no blood flow on the right side of his brain and now there is quite a bit of flow. It is not completly back to normal but that is to be expected. It should take around 6 months for it to return to normal. As for now we will still continue with the Lovenox as Beckham's treatment for his clot and bleed.
The drive home to Des Moines was slow due to the road conditions. I debated on whether or not I should stay another night in Iowa City because of the weather, but soon decided against it. This was probably not the smartest decision because when I was about 20 minutes outside of Des Moines I hit an icy patch on the road, swerved out of control, did a 360 in the freeway, and flew into the median. I immedialy took a deep breath, placed my hand over my heart to will it out of hyper speed, turned and looked at my children's faces, and thanked my Heavenly Father that our lives were spared. After that I was able to put our SUV in 4 wheel drive and drive back onto the freeway and the rest of the way home.
The rest of the week - Nate's parents arrived on Thursday to celebrate Nate's graduation and had a great time with the kids.. It was a wonderful, exciting event for the entire family. Nate's speech went great, and his graduating class surprised us with a monitary donation and other special gifts. We feel so fortunate that Nate was able to attend such a great school with such loving, kind, and very understanding people. We can't thank them enough for all that they have done for our family. At the end of the ceremony the graduates walk up to the stage and are given a nursing pin. A family member is invited to place the pin on the graduate and as I did so (with Beck on my hip, and Gwen being towed behind, her hand in mine) I walked poor little Gwen right into the side of a pole. When we got to the stage she was bawling uncontrolably and her poor forehead was red, with a huge welt in the middle - I know, the "mother of the year" award definaly goes to me! It's alright because it all turned out great in the end.
No pics this time of our Iowa City trip or graduation (I forgot my camera at gradiation - luckily Nate's parents and much more on top of the ball than I am, and brought their camera).
Thank you for your continued prayers and support for our family. I will post pics soon!
-The family Scads
Sunday, December 7, 2008
Busy Week!
The title of this post says it all!
Tomorrow Beckham is having day 1 of testing - a retinal exam. I need to be to the hospital by 8:00AM (so I need to leave here by 6:00AM) and the tests should take 2-3 hours. Tuesday will be day 2 of testing - an MRI & MRV. I have to have Beck at the hospital at 7:30AM (NPO) and these tests will take quite a while. The doctors are trying to get by with just sedation instead of anesthesia for Beck for the MRI & MRV. My thoughts to this are: GOOD LUCK! We all know how well Beckham reacts to sedation! We are going to stay the night in Iowa City so that we don't have to travel back and forth. These two appointments could not be scheduled on the same day because each will take quite a bit of time and since these tests were needed ASAP, he needed to be fit into schedules. These tests were ordered by Beck's nerologists to check on the status of his blood clots and brain bleed. We are a little nervous about them (well, mostly me). Beckham has been doing relatively well. He had a couple of vomiting episodes through out last week and into the weekend. We are hoping that they are due to his new ear infection instead of his brain. His veins on the left side of his body are sticking out even more and he is also still banging his head against everything on purpose (not sure if that is because his head hurts or he likes banging his head in general). At least he remains happy and active, with a healthy appetite.
Here is our happy Beck in action.
Nate cannot go to the appointments with me because he has finals. This means that I have to take not only Beckham, but Gwen to Iowa City. Picture this - Gwen, Beckham, me, hospital, needles, screaming, enclosed spaces, crying, stinky diapers....you get the point. Yeah, not a very happy thought (thank goodness for portable DVD players - genius!). At least I have my friend Heather who has graciously offered to let us stay at her house and help me with Gwen. Heather - what would I do without you?
On a happy note, Nate graduates on Friday (yeah!) and we couldn't be more proud of him. He was chosen to speak at his graduation (good luck - I'm glad it's not me!). What a guy Nate is to stick it out in school even with all that we have had to deal with this semester....seriously...he is freaking amazing! Nate's parents will be here on Thursday to celebrate with us.
Speaking of celebration, Nate and I will celebrate our 6 year wedding anniversary on Saturday. Wow, six years, six crazy years. I'm sure glad that I've had this amazing man by my side through all of them. Sure love you Nate!
Yup, like I said - a busy week. We'll keep you posted on the results of Beck's tests. Keep him in your prayers that all of his meds are doing the trick and helping him get better.
-Kim, Nate, Gwen & Beckham
Tomorrow Beckham is having day 1 of testing - a retinal exam. I need to be to the hospital by 8:00AM (so I need to leave here by 6:00AM) and the tests should take 2-3 hours. Tuesday will be day 2 of testing - an MRI & MRV. I have to have Beck at the hospital at 7:30AM (NPO) and these tests will take quite a while. The doctors are trying to get by with just sedation instead of anesthesia for Beck for the MRI & MRV. My thoughts to this are: GOOD LUCK! We all know how well Beckham reacts to sedation! We are going to stay the night in Iowa City so that we don't have to travel back and forth. These two appointments could not be scheduled on the same day because each will take quite a bit of time and since these tests were needed ASAP, he needed to be fit into schedules. These tests were ordered by Beck's nerologists to check on the status of his blood clots and brain bleed. We are a little nervous about them (well, mostly me). Beckham has been doing relatively well. He had a couple of vomiting episodes through out last week and into the weekend. We are hoping that they are due to his new ear infection instead of his brain. His veins on the left side of his body are sticking out even more and he is also still banging his head against everything on purpose (not sure if that is because his head hurts or he likes banging his head in general). At least he remains happy and active, with a healthy appetite.
Here is our happy Beck in action.
Nate cannot go to the appointments with me because he has finals. This means that I have to take not only Beckham, but Gwen to Iowa City. Picture this - Gwen, Beckham, me, hospital, needles, screaming, enclosed spaces, crying, stinky diapers....you get the point. Yeah, not a very happy thought (thank goodness for portable DVD players - genius!). At least I have my friend Heather who has graciously offered to let us stay at her house and help me with Gwen. Heather - what would I do without you?
On a happy note, Nate graduates on Friday (yeah!) and we couldn't be more proud of him. He was chosen to speak at his graduation (good luck - I'm glad it's not me!). What a guy Nate is to stick it out in school even with all that we have had to deal with this semester....seriously...he is freaking amazing! Nate's parents will be here on Thursday to celebrate with us.
Speaking of celebration, Nate and I will celebrate our 6 year wedding anniversary on Saturday. Wow, six years, six crazy years. I'm sure glad that I've had this amazing man by my side through all of them. Sure love you Nate!
Yup, like I said - a busy week. We'll keep you posted on the results of Beck's tests. Keep him in your prayers that all of his meds are doing the trick and helping him get better.
-Kim, Nate, Gwen & Beckham
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