Wednesday, June 16, 2010
Wednesday, June 9, 2010
Wow, what a Wednesday
It seems that our entire family had something happen today, something that could be explained as necessary, rarely ever happens, monumental, and life changing. I'll explain....
Necessary:
Beck was due to receive his last Rituxin infusion yesterday, but because of numerous (I don't use that term lightly) failed attempts by the hem/onc nurses, life flight, and even the PICC line team, to get a vein for an IV, his treatment was postponed until today. Beck is literally a walking pin cushion right now, and has almost as many needle marks on his body as he does bruises (and that is a lot, considering how many bruises he has!). Because of this, a decision was made to skip right over the IV and go for a PICC line instead. For this, they put Beckham out completely instead of just sedating him, and they only had to poke him once to get the PICC line in. Nice! Why did they not do a PICC line at the beginning of his treatments instead of waiting until his last one, you might wonder? Well, I wonder the same thing! I actually asked for a PICC line in the beginning, but was told that it was not necessary because they figured that it would be easier to get an IV in for each dose. I guess they should have listened to me and saved Beckham from getting poked around 30 times in the last 4 weeks. Poor kiddo.
Right now, Nate and Beckham, are in the hospital where Beck is receiving his last dose of Rituxin. They were supposed to stay overnight, but after some smooth talking by my husband, they are going to come home late tonight. The PICC line will be left in Beck's arm for awhile...and I am not complaining about that! Now all we have to do is wait and see if this treatment is even working. We have noticed a small lessening in the amount of his bruising (very small), and he does, once again, test negative for Hemolytic Anemia (whew!), so we do know that it is doing something positive. We still have a little way to go, though. We'll get there!
Rarely ever happens:
This might not seem like such a huge event, but for our little Gwen, this meant everything because it is something that rarely ever happens. Gwen had a play date today....and she loved it! Because of the fact that Beck has been too sick to be around other children for most of his life, we have had to do the same for our little girl. At first it did not seem to affect her, but as she has gotten older, she has wanted to play with friends so much more. Today, my awesome friend, Tiffany, came over to watch my kiddos for a little bit, and she brought her adorable son, Jakob, whom Gwen fell in love with. She was the happiest girl for the rest of the day after playing with him, and I know that this meant everything to her. Thanks, Tiff and Jakob!
Monumental:
Today was Nate's first day of school for his Nurse Practitioner doctorate (we're so proud of you, Nate)! He left a little after 6:00 AM to get to class in Iowa City (2 hours away), and then rushed home when he was done so that he could take Beck to the hospital.
Why, you ask, did I not take Beck to the hospital? Well, I have 2 very good reasons. 1 - I have a nasty cold and there is NO way that I would bring it into a hospital full of sick kiddos, and risk getting them sick or sicker. And 2 - I had an appointment that I could not put off because I was getting the below checked out.....
Life changing:
That's right folks, our big SURPRISE Scadlock baby #3 is scheduled to arrive at our house in December, and we are thrilled...and scared! Nate and I have talked about having another baby for a long time, but it seemed like whenever the subject was brought up, it would always end with, "well, let's just wait another year and see if Beck is stable then." After 2 years of this talk, we have come to the realization that Beck is probably not going to get totally stable, or stable like a normal child. And that's okay! So I just hoped and prayed that if there was another little one up there for us, that it would just surprise us....and boy, did it ever! We are all over joyed with this news...though I fear that Beckham will not like being displaced as the baby. He milks up being the baby with every chance we get (don't worry, we love it!)
I am being watched really closely right now and have already had 2 ultrasounds (with 2 or 3 more scheduled) and a slew of blood work to check for defects, not only in the heart, but blood and other disorders. So far everything looks normal. And we'll just hope and pray for the best.
So, at the end of a very long Wednesday, good night from all 4 (and 1/2) of us!
-Beckham & Co.
Necessary:
Beck was due to receive his last Rituxin infusion yesterday, but because of numerous (I don't use that term lightly) failed attempts by the hem/onc nurses, life flight, and even the PICC line team, to get a vein for an IV, his treatment was postponed until today. Beck is literally a walking pin cushion right now, and has almost as many needle marks on his body as he does bruises (and that is a lot, considering how many bruises he has!). Because of this, a decision was made to skip right over the IV and go for a PICC line instead. For this, they put Beckham out completely instead of just sedating him, and they only had to poke him once to get the PICC line in. Nice! Why did they not do a PICC line at the beginning of his treatments instead of waiting until his last one, you might wonder? Well, I wonder the same thing! I actually asked for a PICC line in the beginning, but was told that it was not necessary because they figured that it would be easier to get an IV in for each dose. I guess they should have listened to me and saved Beckham from getting poked around 30 times in the last 4 weeks. Poor kiddo.
Right now, Nate and Beckham, are in the hospital where Beck is receiving his last dose of Rituxin. They were supposed to stay overnight, but after some smooth talking by my husband, they are going to come home late tonight. The PICC line will be left in Beck's arm for awhile...and I am not complaining about that! Now all we have to do is wait and see if this treatment is even working. We have noticed a small lessening in the amount of his bruising (very small), and he does, once again, test negative for Hemolytic Anemia (whew!), so we do know that it is doing something positive. We still have a little way to go, though. We'll get there!
Rarely ever happens:
This might not seem like such a huge event, but for our little Gwen, this meant everything because it is something that rarely ever happens. Gwen had a play date today....and she loved it! Because of the fact that Beck has been too sick to be around other children for most of his life, we have had to do the same for our little girl. At first it did not seem to affect her, but as she has gotten older, she has wanted to play with friends so much more. Today, my awesome friend, Tiffany, came over to watch my kiddos for a little bit, and she brought her adorable son, Jakob, whom Gwen fell in love with. She was the happiest girl for the rest of the day after playing with him, and I know that this meant everything to her. Thanks, Tiff and Jakob!
Monumental:
Today was Nate's first day of school for his Nurse Practitioner doctorate (we're so proud of you, Nate)! He left a little after 6:00 AM to get to class in Iowa City (2 hours away), and then rushed home when he was done so that he could take Beck to the hospital.
Why, you ask, did I not take Beck to the hospital? Well, I have 2 very good reasons. 1 - I have a nasty cold and there is NO way that I would bring it into a hospital full of sick kiddos, and risk getting them sick or sicker. And 2 - I had an appointment that I could not put off because I was getting the below checked out.....
Life changing:
That's right folks, our big SURPRISE Scadlock baby #3 is scheduled to arrive at our house in December, and we are thrilled...and scared! Nate and I have talked about having another baby for a long time, but it seemed like whenever the subject was brought up, it would always end with, "well, let's just wait another year and see if Beck is stable then." After 2 years of this talk, we have come to the realization that Beck is probably not going to get totally stable, or stable like a normal child. And that's okay! So I just hoped and prayed that if there was another little one up there for us, that it would just surprise us....and boy, did it ever! We are all over joyed with this news...though I fear that Beckham will not like being displaced as the baby. He milks up being the baby with every chance we get (don't worry, we love it!)
I am being watched really closely right now and have already had 2 ultrasounds (with 2 or 3 more scheduled) and a slew of blood work to check for defects, not only in the heart, but blood and other disorders. So far everything looks normal. And we'll just hope and pray for the best.
So, at the end of a very long Wednesday, good night from all 4 (and 1/2) of us!
-Beckham & Co.
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