Little to update you on and lots of time....wait scratch that and reverse it....lots to update you on and so little time (remember that line from the original Willy Wonka?). Its been a crazy couple of days that have ended in me sitting in my own home with Beckham next to me. Unexpected right? It was sure unexpected for all of us and in all honesty a little frightening.
Beckham's hemoglobin has been going down slowly (5.5 yesterday and 5.2 today) and his platelets have been rising steadily (they are now up to 33), but unfortunately, for as much as I have looked forward to this, his platelets are not as important as his hemoglobin rising and we would prefer to see them rising just as fast...if not faster. Beckham's liver is also enlarged, causing me to freak out, but the explanation for this is that because of his large hemoglobin loss, his liver has taken a huge hit. It is not a large concern for the doctors, but his liver enzymes were checked and they are in the normal range (which they were not when he was admitted). All of his other labs looked relatively good as well, resulting in the decision for us to go home today. I was quite uneasy with this decision, especially given the fact that Beck's hemoglobin has been lowering everyday, and his threshold for receiving a blood transfusion is if he drops below 5. Because of all of this, I had a LOAD of questions for all of his doctors, making sure to mention all of my concerns. They were all very gracious, but all very unanimous that they think that they best place for Beckham would be in his own home and away from the germ filled hospital. I agree, but I know the odds of us ending right back there are quite high (not trying to be a Debbie Downer or anything) and I don't want to come even close to his hemoglobin dropping into a life threatening range again. The doctors are still shocked that Beckham lived through his hemoglobin dropping to 2.5, and even more that it did not send him into heart failure.
The plan for now is to have labs check twice a week and to return to Iowa City in two weeks for a check up. We will watch him very closely and have a very low threshold for taking him into the hospital. He had a big fall today and smacked his mouth pretty hard. He bled for quite sometime and ran the risk of us having to rush him back to the hospital, but we were able to get it stopped...I just hope, because of this fall, that this does not drop his hemoglobin below 5. Beck will also remain on steroids (oh joy) for at least a month.
I know that I have not made this post sound positive, but I do want to mention that I am thrilled to be home, just uneasy with how sick he has been, and continues to be. But it is worth it all to see the excited expression on his face when he saw us arrive at his home....even if it only lasted a few moments before his roid rage kicked in.
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13 comments:
Still praying Kim. I wish there were more I could do.
Okay, I've just had to catch up on live 5 posts. Oh man, so much has happened with poor Beck these past few weeks! I'm SO glad you at least get to be home, but wish that hemoglobin level would go up!!! Ug. We'll be praying extra hard for Beck.
Oh man! That is scary to be home away from the doctors and the tests that can tell you exactly how he is doing! So sad that his hemoglobin dropped to 2.5 and that the doctors were shocked that he lived through that! Beckham sounds like a fighter! We're still praying for you!
Oh Kim you are a constant inspiration to me and how I am going to miss your always positive and smiling face!! I am so grateful to have met you guys and you are always in our thoughts and prayers!! Keep in touch! Autumn
I agree with the Doctors that home is the best place for all of you. Your motherly instinct will let you know if his hemoglobin drops really low again. I remember my son was so pale and lethargic and could not stand up by himself, and vomiting. when he was at the 2 level. Even the memories give me the chills. I know exactly what you are going through and the constant worry.
Malt o meal is good with lots of iron and cooking foods in an iron pot is good. My son took folic acid to boost his hemoglobin. I would crush and sprinkle on ice cream ;)
Just know that Little Beckham is in my prayers and so are you. :) Sleep well in your own beds, God is watching over you.
Thinking of you and hoping to see you soon.
Hoping the time at home is well spent. Maybe Beck will be happy and the hemo will rise, rise, rise! That's what I am praying for!!!
Sweet Beckham, we are praying for you and your family. Hang in their champ. We are all pulling for you. Give your mom lots of kisses she needs them!
Praying for Beck & Co Kim. Miss u tons. You have an amazing level of commitment for your family that I admire so much.
McKenzie :)
Were praying for you guys! Also Happy your home for now. Being as the Liver is our SPEC-I-ALITY! i thought I would suggest that along with the roids, having liver issues can cause grumpiness as well. When Jada's liver wasnt clearing out toxins she was feeling pretty crummy. Also on a bright note remember that the liver is a pretty versatile organ, and can take a lot of abuse. I'm positive that things will turn around here soon.
I'm glad that you are back home and hope Beck gets well soon. It was really fun to see Gwen yesterday at Costco with your dad Kim. She's getting so big! We love you and miss you.
I am glad to read that you are home, even though the circumstances are not ideal. I continue to pray for your family and am still just around the corner if you need anything. I need to somehow get a thank you card to you, but I am sure you guys are on lockdown for sure right now. I could always mail it to you ;) TTYL and take care!
I'm glad that everything seems to be going ok right now. I got your message on my blog about dinner and I can't believe that you would think about us with all that you have going on. You don't have to make dinner to get out of the house...if you want to just come hang out you are more than welcome anytime. I'm serious...just call me!
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