Back in the hospital....but not for long!

Now to the reason for Beck's hospitalization. Beckham is currently on three medications. Two of the meds suppress his immune system and the other is for blood pressure. His main immuno suppressant medication Tacromulus (Prograf), is a very strong medication that needs to remain at a certain level. His levels are checked often and have been very stable and have not needed to be adjusted since he was released from the hospital in September. Beckham's level was checked on Monday and it was so low that it did not even register. His Tacro dose was doubled that night and his nurse would check his level again on Wednesday. Wednesday came, level was checked, and the same thing...level so low that it would not register. This immediately concerned Beckham's doctors and Beckham was admitted to the hospital that night. He was given a very large dose of Tacro and many tests were run to make sure that he did not have any signs of rejection. His Tacro level was checked again this morning (at 4:30 AM I might add) and his level had risen to an acceptable range. His tests also came back and he has no apparent forms of rejection. This is GREAT news for us!!
Our thought and the doctors thought for the reason for Beckham's low Tacro level is that he received a bad Tacro prescription. Two weeks ago I refilled Beckham's Tacro at a pharmacy here in Des Moines. This was a very frustrating task because Tacro is not a common medication carried by pharmacies and it is also a "compound" medication and only certain pharmacies make compound prescriptions. I had to go to three different pharmacies before I found one that would be able to fill it. We think that when the prescription was mixed at the pharmacy the Tacro was left out. If this is the case than this is a very serious mistake. Tacro is Beckham's most important medicine and it is a medicine that he will take for the rest of his life. We are going to have the old bottle of Tacro tested at the University of Iowa Hospital when we go there next week. We will now fill Beck's Tacro at the hospital. I guess that I should have realized that something was up with his medication. Beck's symptoms were actually positive ones (ironically). Since he was started on Tacro he has had a constant diaper rash (I should probably call it open sores) and a serious case of thrush that comes back as soon as we treat it. These are both common side effects of Tacro in infants. Both of these symptoms mysteriously went away when I started him on the new dose of Tacro. Even though this was probably comforting to Beckham, he unfortunately should have these side effects. I am sure that if he could talk that he would tell us that he would rather have these effects then rejection.
Other than this, we are all doing great. Our biggest trial now is learning to cope with being inside in out home all day. Our home is starting to look like a prison (well not quite). Gwen is really struggling with this and frequently throws large fits to let us know that she is fed up. We are also keeping Gwen away from others at this time because of the risk of her catching something and then passing it on to Beckham. We are allowed to take Beck out in the open air, but sadly Iowa is not warm year round.

Thank you again to everyone who has reached out to our little family during this time. We are so blessed to have such incredible friends and family. I wish that I had a chance to hug each and everyone of you. If you are reading this than consider yourself hugged!
Love and thanks!
-Kim, Nate, Gwen and Beck
P.S - We were able to have professional pictures taken of Beck. Thanks Erica for taking such great pictures...and thanks for your patience while doing so (we know that Gwen was not the most cooperative!!).
14 comments:
I'm glad that the figured out what was making the levels so low, and happy that it wasn't anything too serious. the whole Tacro process (getting the perscription and such) was so frustrating I remember you saying, and now to find out it wasn't a good "batch"....ugh! We've been wanting to get together again, but the girls have had 2 bouts with the flu and croup so we thought it more beneficial to stay away. PLEASE PLEASE PLEASE let me know if you need anything...I really wish I could do more.
love you guys,
Grovers
I'm glad they were able to figure out what was wrong with the meds. How frustrating! I've been thinking about you all a lot since it's been getting colder and knowing that you are confined to your home. I'll pray for nice days so that you can get out as much as possible and also that we live closer one of these days:)
I'm sorry to hear about Beck but glad that it is all ok. Please call us if we can do anything!!! Best of luck inside your house :S need movies? feel free to come browse our collections!
I am so glad that Beckham's meds were figured out, how scary that could have been. Please let me know if there is ANYTHING I can do for you guys. I wish you all the best, and hope to see you guys soon! I love you!
P.S. You are welcome to any of the movies at my house as well!! :)
How scarey and frustrating. I'm glad you were able to find out and that he is doing better. Our prayers are always with you guys, and if you need anything at all (even just dropped off at your door) let us know!
The Christiansens
Kim, I love reading your blog, or your husband's depending on who writes it! I'm glad that he is okay. I understand the frustration (in a small way) about being stuck inside. I feel like that every winter. It gets really old being inside all the time. Your pictures are beautiful! Love ya Kim!
Oh, little Becks! I'm so glad that they were able to get his levels back to normal. Too bad he has to go back to the yucky diaper rash--poor little bum bum! Let us know if we can do anything to help!
Karin :)
Wow! What a rollercoaster! That is so frustrating. We are thinking of you guys. Those pictures look great. Beckham looks so big since we've seen him.
Oh my! To be back in the hospital again... How hard. I'm so sorry, but. I am glad he is doing good. The pictures are beautiful!!!
I read your blog every so often and I enjoy it. I wanted to comment because my son had a kidney transplant on November 14, 2006 and he is currently taking Cellcept and Prograf. We went through something similar one month when they couldn't detect his prograf levels. Ours ended up being that the prescription was over 30 days old and after 30 days the tacro isn't as strong. So moral of the story and lesson we learn is to not use your prograf medication if it is over 30 -40 days old. Because Kayden is on such a low dose compared to when he first started it we have ALOT left over so I was trying to save a little bit and have some on hand, but I learned that you cannot do it. Unfortunately we throw away about 3/4 of a bottle at the end of the month.
Darling picts! So glad that everything is still okay! We are always thinking of you!
Very cute pictures!! We hope you guys are home now & baby Beck is doing better. We will miss your cute little family at Thanksgiving this year, but am sure we will get all the updates from your parents. I can't remember if we gave you guys our blog. If not here it is.
www.jeffandcole.blogspot.com
Hey Kim this is Jenny Yeates Aland. I found your blog on Natalie's. I am so gald that Beckham is doing well, sad to hear that he is back in the hospital.
Your kids are adorable. I really love your blog. You will have to check out ours it is thealands.blogspot.com.
That is so scary! How crazy if that pharmacy left out that part of the medication (which by the way it sounds, I'm sure they did)! They could have really harmed little Beckham. I am glad that you guys found out about the problem and that everything got worked out. The poor little babe to have thrush and a raw bum all the time! But it's true, it is by far better than the alternative. Those pictures are absolutely so beautiful and precious! I love them! I hope you guys don't go too stir crazy!
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