What do you do.....

....when you're on semi-lock down in your house, and it's so cold outside that it makes the INSIDE knob on your front door look like this,

and the temperature gauge in your car, in the middle of a sunny day, reads this (with a wind chill of -30)?

I'll show you....

1. Lot's of dress-up (or in Gwen's words, "Mommy, I Tinkerbell")

2. Beckham being naughty

(Beck getting into the lotion and eating it...umm yummy)

3. Painting

4. Beck being naughty again

(this time he ate a marker)

5. And plenty of sister and brotherly love. Gotta love it!

Update 1/9/09

Guess what? This update is actually good news! Honestly! I know that the word "update" in the title box usually means that the news we are about to share is not so good, but today it's a whole different story. Let's cross our fingers that this is only the beginning of good news.

Beck had a nice long day of appointments today in Iowa City. Nate was the lucky parent that got to take Beckham to the appointments. They included: Cardiology (transplant team), Hematology, and GI.

Hematology (first appointment) - The Hematology team was extremely pleased with Beck's progress and said that ALL (too many to count) of his tests came back negative for any type of blood or platelet disorders (great news). They believe that Beckham's blood clots and bleed was not a chronic issue, but events related to dehydration from other illnesses (more great news). They also said that Beckham can come off of the Lovenox shots at the end of January. This is wonderful news because we hate giving him shots twice a day. Hematology does not need to see him again.

Cardiology (Transplant team) - The Transplant team was also extremely pleased with Beckham. Their exact words while they examinied him were "we haven't seen this happy and healthy Beckham since before his Hand, Foot and Mouth, in the summer." Yeah! Beck's ECHO of his heart also looked great. His amazing heart is beating perfectly and showing no signs of rejection. He is actually doing well enough that we do not need to see the Transplant team until April.

GI - They were extremely pleased that Beckham's GI issue turned out to be CMV (If you remember, we were released from the U of I hospital before Beck tested positve for CMV, so the GI doctors were still unsure what was causing Beck's bloody stools, diahrea, and vomiting) and not something more serious. They don't have any new meds to add and like Hematology, they don't need to see him again.

Wow! Did you get all of that straight? We knocked out two different teams of doctors, have one less medication, have no new meds to add, and still have an amazing looking heart!

What a great way to start the weekend. Hope your weekend is also good one.

-Beckham & Co.

Undeafeted at 13-0!!!

We didn't quite make it to New Orleans for the Sugar Bowl this year (imagine that), but we had fun at home with Gwen cheering on the "Goo Utes"!

Update 12/31/08

We're home! Yeah! Happy New Year!

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

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!

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

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

Update 11/29/08

Guess what? Beck is still at home! Shocked? We are also. Since Beckham's release from the hospital on the 11/16, we have not had to be re-admitted. The good news is that we have not even come close to it (knock-on-wood). More good news is that he has only vomited once since being home and his dirty diapers are also less (less to him is only 7 a day instead of 12-15...yeah, we change a lot of crap in our house). And the best news of all is that we have our old Beckham back. Our sick, tired, skinny, little guy has been replaced with a happy, hungry (I mean hungry), ball of energy. What a delight it is to have him back to his old self. We sure love this little guy to pieces. While he continues to heal and gain more energy, we are still aware that his condition is still quiet serious. Beckham does not understand this and wants nothing more than to be thrown around and tackled by Nate. Soon, we keep telling ourselves. Soon.

Can't you tell his appetite is back?

Since being home, Beckham finally tested positive for something. CMV. Bummer. This is his third time having this virus. Hopefully the third time is the charm. Beck is now back on Valcyte and will be for six months. Before he was only on it for a period of three months, but his transplant doctor thinks that it would be best to go longer and hopefully get rid of this virus for good. I know the question you are all thinking: "Could the CMV be the underlining cause for all that has happened to Beckham?" and the answer is yes, no, and maybe. I'll explain. Yes, it is the cause for the sores in his colon which caused the bloody stools. No, it is not the cause for his stroke, but maybe it could be what triggered him in the first place to get sick and start his downward spiral (because he did have CMV in the summer). Does that make sense? Probably not...but it doesn't make sense to us as well. We still have a lot of theories and unanswered questions.

Beck's meds went from this.....

to this.

As for what is going on in his brain, we are in the same boat of unanswered questions. Beckham and I visited the Neurology doctor in Iowa City. For the most part she is extremely pleased with his progress. She loves the fact that he is eating, speaking, moving again, and not vomiting. However, she is a little nervous about the fact that he is not walking, that he chokes on fluid, and that the veins on the left side of his body are more noticeable. I'm not sure what to think about the walking thing. Beckham has never technically "walked." Before his stroke he would take as much as 10 steps, but now he will not take more than two. I personally think that Beckham could walk if he tried, but he is a quite stubborn (just like his daddy). He definitely is weakend though. I don't know what to think about the choking on fluid thing either. Before his stroke he would take a bottle, a sippy cut, a straw, and even a cup. Now he will only take a bottle. Every time he tries anything else he chokes and coughs. Lastly, the noticeable vein thing does worry me. I had never noticed this before until she pointed it out (This is great. Just another thing to keep me up at night). She thinks what could be happening is called Hydrocephalus - accumulation of water on the brain. Beck's clots might be responding well to the blood thinners, but the area around his clot could still be building up fluid - and since his clot is on the left side of his brain, it's making his veins more prominent on the left side of his body. We will not know for sure if this is the case until we do another MRI. That will happen in two weeks or so along with an MRV and retinal exam. One thing I can say that will bring some comfort is that I know that Beck's neurologist thinks that he is stable and improving. She is a VERY careful doctor and I know that she would not have let us leave the hospital today if she did not believe that. I'm okay with that.

We will have many more follow-ups with hematology, cardiology, GI, and neurology soon. I can't wait until we can finally say that Beckham is "out of the woods" and on his way to solid ground. We will get there.

-Beckham & Co.

Jake, the boy who gave Beckham his heart...

Despite two months of up and downs, Beckham is doing very well at home and very happy to be here. The night we came home we found a very special letter in our mail pile. It was from Beckham's donor family, the Campbell family from New York state. We wrote an anonymous letter to them a couple of months ago sharing our gratitude for their selfless decision. We found out that through the power of 'google' that they have been following Beckham's journey since January and were as excited to hear from us as we were from them. We have now wrote back and forth with the family and I asked if I could tell Jake's story.

I am going to relay the story of their son in their own words, taken from a paragraph in the letter that they sent to our family.

(Baby Jake)

"Jake was born on May 25th, 2007. Despite being on the small side at birth (6 pounds, 2 ounces), he was perfectly healthy. Ben, who was 21 months at the time, was thrilled to have a baby brother. Everything was right with the world, as they say. By the time Jake was about 3 weeks old, he was developing reflux, which made most of the time he was with us very uncomfortable for him. Holly, who was nursing him, spent many nights awake with him. Most of the time he would only sleep if he was being held, or if we were in the car; he was so uncomfortable on his back. Despite this, we have many wonderful memories. He had the most amazing smile. We spent one evening playing hide and go seek with Ben, and Jake popped up on the couch, smiling away. We also remember a wonderful weekend at a family picnic, when many lives were touched by his adorable smile. He loved it when his mommy sang to him. Just before we lost him we went to an amusement park in Pennsylvania, and he was so good that day. That night and the next he was able to sleep six hours straight in his bassinet. We thought we were finally turning the corner. Then, on August 13th, Andy put him down to make a bottle while Holly was at school for a function. When he returned, Jake wasn't breathing. A heroic effort was made, first by Andy, then the paramedics. They were able to get his heart beating again, and put him on a respirator. He was flown to Strong Memorial Hospital in Rochester, and when we arrived the doctors told us the terrible news. His brain was completely unresponsive. We held vigil through that night, and another CAT scan the next day told us the same thing. On the 15th, two days after he stopped breathing, our "little star" was declared officially brain dead. It was with some difficulty that we decided to donate his heart, which meant that we would have to say good bye to him while he was still on life support. That was hard for us, but we knew that it was the best possible thing to do, not only for the family that his heart would soon reside with, but for ourselves, knowing we could make something positive from the most terrible thing imaginable. In the end his corneas went to two different individuals, restoring their sight, and you little Beckham received Jake's heart." - The Campbell Family

After a very difficult 2 months, in which we have hardly left the hospital, it is important for us to remember the sacrifice that was made so we have this time with our little Beckham.

It was great to read about the Campbell family and their two beautiful children, older brother Ben and baby Alex who was born just this last August. We have thanked them many times since our correspondence began, if you would like to do the same you can use the comments section of the blog.

Update 11/17/08

Another quick post to let you all know that Beckham is home. I didn't want to do an update until we had been home for a full 24 hours (I was scared that I would jinx it) and so far little Beck is doing great. He is SO happy to be home. We are still dealing with some GI issues, but we are working really hard to keep Beck hydrated. Lets all cross our fingers that we can stay home. We'll write more later. Thanks again for all of the continued prayers, kind words, thoughts, and support for our little family. We can't even begin to express our gratitude.

-The whole family Scads

Update 11/16/08

We're sorry for the lack of posts these last couple of days. We were waiting until we had more news to share. Unfortunately, not much has changed.

We are still here at the U of I hospital. Beck's test results have started to come back (he has literally had hundreds of tests run) and each one has been negative. We never thought that it would be frustrating to get a negative result on a test, but it is! We still have no idea what is wrong with our little guy. The biopsy's that they took from his colon have also come back negative for bacteria and virus. He still has the bleeding sores in his colon, but he is no longer passing large clots of blood in his stool. They are now only streaked with blood, and some have no blood at all (this is a good sign). Because of this Beckham has been allowed to eat again. His diarrhea has lessened some and he has not vomited since he was transferred to this hospital. If his diarrhea continues with blood then they will do an endoscopy on Monday. He will have to be put completely under for this procedure.

Some great news is that Beckham's clots are shrinking. They used a dopler to check the spots where he has clots in his leg, neck and arm and only his neck still has a clot. The clot in his neck is shrinking though. They have not taken another look at his brain, but they do not feel that is necessary at this point because he is acting so well.

We have been told that we will probably never know what is has been ailing Beckham (not very comforting). They think that whatever has been raging inside his body for the last couple of months will clear up on it's own (eventually). Beckham is acting like his happy self. He is eating, drinking, and playing non stop. He even had enough energy yesterday to take a step from Nate to my arms. He is definatly weakend and it will take some time for him to regain his strength. We are hoping to be able to take him home soon. We sure miss our Gwen and hope to have her back in our home soon also.

Thank you for your continued prayers for our little guy, his doctors, and for the rest of us. We have truly felt the power for them. We hope to update the blog again soon with anything other than blood clots, puke, and poop. Soon!

-Beck and family

U of I (11/12/2008)

Where to begin? As previously passed on we had spent the last few days at Blank Children's Hospital only to be transferred back to University of Iowa Hospital yesterday afternoon.

Beckham has had bloody stools that began late Sunday night. Kim told the resident at Blank that night, but he told her it was more likely to be 'red sauce' from the spaghetti that he ate that afternoon. They progressed through the night and by the next morning it was more than obvious they were blood clots. That or an old Italian pasta recipe calling for erythrocytes in the sauce. Once assessed by GI it was determined because of the complexity of Beckham's history over the last weeks and even the last year that University of Iowa would be better equipped to deal with these new problems.

Over the last six weeks Beckham has been in two different hospitals and eight different hospital rooms with over four of the last six weeks being spent overnight in the medical centers. He has been seen by urology, ENT, GI, peds neurology, neuro surgery, adult stroke team, transplant team, peds cardiology, radiology, peds hematologists, and various intensivits/ hospitalists. He even topped it off with a 2 hours ambulance ride over here yesterday.

Today they start diagnostic testing on his colon which consisted of sending stool to lab, blood draws, an abdominal x-ray, an abdominal ultra-sound, and topped off with a colonoscopy (we are sure he is attempting to suppress memories of that last procedure - the colonoscopist didn't even take him to dinner first). The colonoscopy revealed that he has sores throughout his colon and through a biopsy of intestinal tissue they will try and diagnosis if the root cause is ischemia due to clotting or some sort of viral/bacterial issue.

He was miserable all day, but things improved slightly as they did remove his Foley catheter and let him start drinking clear liquids late tonight.

I am sure there is more to tell, but our state of mind is less than clear these days. It is much like Gallagher gave our brains the same treatment his gives his watermelons. (For those that don't know Gallagher is a comedian that smashes watermelons with a sledgehammer as the grand finale of his act...keep up now)

Oh, and Gwen is in Utah with Gwanma and 'Papa Scadlock...my mom came last night and went back to Salt Lake City this morning with the little one.

I think that is all for now, hopefully we will have more (and better) news tomorrow.

(There is a Chinese proverb that says "A dog in desperation will leap over a wall". Well, a baby in desperation will suck down pedialyte as if it were the nectar given to us by the Gods)

Back to University of Iowa hospital...

Just a quick update...

...due to bloody & frequent stools, along with vomiting and lethargy, Beckham has been transferred back to University of Iowa hospital. Beckham and I (dad) went with came over by squad this afternoon.

Updates will follow as we know more.

Update 11/8/08

We're home.....we're back in the hospital.....we're home.....and back in again....

The above says it all. On Thursday we were surprised when we were offered the option to be released from the U of I hospital. Naturally, Nate and I jumped at the chance (silly us) and we headed out. We arrived at home around 6:00 PM, and by 8:00 PM Beck was vomiting. After a couple of hours of this we called the Pediatric Neurologist on call at the U of I and he suggested that we go to the ER and get a CT scan. The CT scan showed that his brain bleed and clot are stable (whew) and that the edema around the bleed has lessened. We were released and went home to sleep in our beds.

Beck's home health nurse came the next day and when she weighed Beckham my heart sank. He now weighs a whopping 19.5 lbs. That is 3 1/2 lbs less than 6 weeks ago. Beckham looks so skinny. It breaks my heart!

Later that day, Beck started vomiting again and had 10-12 dirty diapers. His diapers were SO stinky. I am surprised that our house didn't rot because of the stench! After talking to Iowa City we all decided that Beck has to be back in the hospital on IV fluids. They are running all sorts of tests on him again and we will go from there.

We are grateful that we are at least back at the hospital in Des Moines and able to go home at certain times. I am hopeful to have Beck back in our home very soon. We are honestly all doing pretty well considering all of the events of the last 6 weeks. I am sure that it is because of your prayers. Thank you.

Just a quick shout out to my friend Heather (and the rest of her family) before I end this post. Heather lives in Iowa City and she has done so much for our family. I don't know how to thank her enough. We love you so much O'brien family. You are the best!

We will continue to keep you posted on anything.

-Kim, Nate, Gwen & Beckham

Update 11/4/08

We made the big move from the PICU to the floor today. Beck's condition is still considered serious, but he does not require the one on one care from the PICU staff. We are grateful to not be PICU status but we will miss all of the staff in that unit. I can't tell you how much we love the staff in the PICU. The care he received was incredible, but the love that was shown to Beckham is indescribable. I had numerous nurses comment that they went home at night and worried about our little guy. Isn't that sweet? Thank you so much PICU staff. We plan on only seeing you again as visitors and not patients!

I was hoping that Beck's transfer to the floor would mean that he would finally earn the status of "out of the woods," but alas, it does not. We were told that Beck will not be out of the woods until his clots have fully dissolved and his bleed has disappeared. This can take anywhere from 6-8 weeks with the blood thinners. We will not need to stay in the hospital for the entire 6-8 weeks. They are hoping to send us home this weekend (we'll see). This makes me a little nervous to go home with a seriously ill baby and be 2 hours away from his many doctors. I guess that you could say that I am going to be a nervous wreck for the next couple of months (I guess that is not anything new!).

Thank you so much to those from church who came and cleaned and disinfected our home. It means so much to know that we will be coming home to a sanitized place. Now all we will need to worry about is padding our entire house down. Beckham has always had a habit of banging his head on everything as a form of communication. He has tried to continue this form of communication here in the hospital (to the doctors horror, because that is just what a child with brain trauma should be doing) and because of it he has had to get special bumpers in his crib. We do not want to dislodge any of his clots because of the risk of them going farther into his brain, into his heart, or into his lungs.

Beckham will really need to prove himself during the rest of the week so that he can show that he is well enought to go home. During the next couple of days I am going to be taught to give shots (oh joy). Beckham's Lovenox is a shot that is given twice a day and when we go home I will be incharge of his medication care again.

I know we have mentioned this numerous times, but we can't thank you enough for all that has been done on behalf of our family. Your prayers and faith are truly blessing our sweet little boy. Please continue to pray for him.

-Beck & Fam

Update 11/3/08

I have decided to take over updating the blog for the time being (this is Kim by-the-way). Nate and Gwen have gone back to Des Moines for a couple of days so that Nate can attend school and Gwen can have some sanity. Nate's mom is still here with us (thank you Brenda, we could not do this without you) and is on full time Gwen duty. I am sure that is not an easy job right now because Gwen is really struggling with this hospital stay. She has done remarkably well with the past hospital visits, but I think that she has had enough and she needs her family back together.

Warning: This post will not be as medically correct as the posts that Nate has written. I apologize in advance.

Now onto Beck's condition. He had a few ups and downs this weekend, but was very stable for the most part. On Friday he needed to be sedated again for a test and that required quite a bit of medication (of course). His IV also went bad and he had to be poked again for another one. This new IV also went bad later that day and he had to be poked again. Even with the 2 new IV's Beckham was extremely happy and alert.

Saturday started out much the same as Friday, with a happy, active Beckham. His newest IV went bad again and a new one was placed in him. During the second half of the day I walked over to his crib and noticed that his arm looked a little purple and swollen(it was the arm with the PIC line). His nurse and doctors agreed with me, but they wanted me to elevate it and give it a little time. That did not work and a couple of hours later it had doubled in size and a pulse could not be felt without a Doppler. Beck's PICC line had to be taken out immediately. The swelling and purple color in his arm was caused by Venus Thrombosis. It looks like he might have another clot in his arm as well. Poor kiddo! That is 3 IV's & 1 PICC line in 2 days! His loss of PICC line opened up the problem with his Heparin drip. Heparin has to be given by IV, and blood has to be drawn (a lot of blood) every 4 hours to check his Heparin levels. They were drawing blood from his PICC line so that he did not need to be poke numerous times a day. The doctors did not want to take the chance of putting another PICC line back in him and cause more clots, so they decided to change him from Heparin to Lovenox. Lovenox was a hard switch because it has to be given by a shot twice a day, it is not as effective as Heprin, and it only has an 80% reversibility rate. It is also not given to treat Venus Thrombosis in the brain. All these things aside, Lovenox is the best option. We will do what is best for Beck.

Sunday wasn't the best day. Beck's arm was so huge and purple. He could not lift it or even have it touched. He was given Morphine for the pain. He was also very lethargic and sleepy during the day. By night time I was getting quite worried about him and I had the doctors called in. They agreed that he did not look great and they ordered a CT scan. The scan showed that the bleed was not any larger (whew) , but their was more edema in the brain (which was to be expected). This was actually comforting news.

Beck's arm after the PICC line was taken out.

Today, Beck was still tired, but a little more active then Sunday. He also had 2 vomiting episodes. The doctors are not extremely worried about this because he has a lot of pressure in his head that will cause vomiting. They continue to use the phrase "not out of the woods" and I can't wait for him to finally be in the clearing.

As for the cause of all of this...the doctors are still not sure. We are still waiting on the test results for clotting and platelet disorders. We are hoping that those are both negative. Beck's platelets are still low, but somewhat stable.

Thank you over and over again for all of your prayers, fasting, thoughts and comments for our Beckham and the rest of our family. We can't tell you how much it means to us. We truly feel carried during this time. Please continue to pray for Beckham. He is so tough. The doctors have so much faith that he will pull through this. We feel the same way. He still has a long way to go.

Thanks again.
-Kim, Nate, Gwen & Beck

11/1/2008

I was not going to do an update today, but it is 4:30 in the morning and about three Beckham decided we were done sleeping for the night. I thought after him not taking a nap today that sleep would come easy, but apparently he did not get the memo. I can't really get too mad at him though. He is laying against my chest acting calm and restful, but about every 2 to 3 minutes sits straight up, shouts out "DAAAADDY!" and ends the quick burst with an emphatic kiss. How do you really get upset about that?

The plan for now is to keep him on the heparin and there really were not any significant changes in his care plan. All of today's events included IV sticks. Venous access has been a difficulty since we were at Blank and has continued here at Iowa City. In the last couple weeks he has probably been stuck around 30 times with 6 or 7 of those being successful access attempts. That is with the big guns usually being called in (e.g. Lifeflight nurses, nurse practitioners, etc.).

Beckham did have another CT scan this morning which showed that the bleed in his head has become bigger, but they can't really do anything about it at this time. Just another scary fact to mentally digest.

Tomorrow (today) we will post some pictures of the kids in their Halloween costumes. Beckham, in true Beckham fashion, pooped through the leg of his skunk outfit fairly quickly after changing into the black and white striped furry ball of an outfit. Oh, the irony.

Well, the nurses have offered to take him for a wagon ride now...I can hear him chastising them down the hall, but I'm going to take it as my queue to try and get a bit of sleep.

Goodnight (morning?)

Beckham & Fam

10/30/2008

(Today Beck offered raspberries for all)

It seems old to describe the day as a roller coaster after a few straight entries doing just that so we will have to describe today as an elevator, or maybe a teenage girl's mood swing. I could also go with a swing, teeter totter, pendulum, or stock market (well at least the stock market used to go up and down).

This morning Beckham was amazing. They transfused a unit of red blood cells and he was almost goofy giving kisses and teasing Kim and I with our phones.

This was followed up with a trip to MRI. This is supposed to be a simple process of diagnostics, but Beckham (as we know) is anything but simple. For the MRI he needed to be sedated so that he would be still through the test. So the nurse administered 0.5 of Versed & 0.5 of Morphine...not a lot, but often times enough to cause the desired sedative effect. Well it didn't work that way. In fact the desired effect wasn't achieved until over 2 hours later along with another 1 of Versed, 0.5 of Morphine, a 35 mcg bolus of Propofol, and then another 175 mcg of Propofol during a continuous drip. Even this didn't knock him out for the day, in fact he was already come out of it at the end of the MRI before the drip was done, but it worked just long enough. He doesn't quite make anything easy.

When we got back he was stoned and funny. Not sleepy, but groggy. Had I been a better father I would have found him a black light, a lava lamp, and Pink Floyd's Dark Side of the Moon. Next time.

The test revealed both good and bad results (did you expect different?). The good - It appears that blood is getting to parts of the brain that were previously blocked off. The bad - Other parts of the brain seem to be experiencing clotting and edema.

Another downer on the day was the discovery of other clots through his body. He has some clots in the veins of his right leg, which was expected. But then he has a clot in his right internal jugular vein. Fortunately the treatment for both of these is the heparin that is currently being infused. Unfortunately with the jugular clot there is always the risk of a pulmonary embolism.

Today in addition to the efforts of hematology, cardiology, and neurology Beckham had a visit by ENT. Because of his frequent ear infections they want to put tubes in his ears. We also want tubes in his ears, but not quite sure when to throw those in...I really think it should be part of a package deal. SALE! SALE! SALE! BUY A NEW HEART & THROMBOSIS TREATMENT - GET AN ENT CONSULT AND TUBES IN YOUR EARS FOR FREE! FREE! FREE! ACT NOW AND WE MAY JUST THROW IN THE POST-OP ANTIBIOTIC TREATMENT!!!

Despite the ups and downs it was really a lot of fun to have moments with our 'old' Beckham today. There is a long way to go, but we are in good hands and I really believe things are headed in the right direction.

Once again, thank you to all.

Beck, Gwen, Kim, & Nate

10/29/2008

Today Beckham had an awesome morning followed by another scary afternoon.

This morning Beckham woke up happy and ready to play. He smiled and sang while bobbing to songs by his homebody "Emmo". It was fun to see a little bit of our Beckham back.

This afternoon he began vomiting. The first time we didn't think much of it, but then it happened again...and then again. So it was decided to take him for another CT Scan. The scan showed a new bleed in the right hemisphere of his brain, close to the originally origin of thrombosis. The physicians did not indicate that these new developments translate to a worsened condition, but a different condition.

While the situation is scary we still are hopeful that we will be able to get through all this and eventually get our old Beckham back. One neurologist was quick to point out this morning that 'we aren't out of the woods just yet', but we are just happy to not be tumbling down the mountain.

Things really are a roller coaster here.

While having his happy morning he decided to stand a little bit against the crib railings. That is the first time since this all happened with the neurological issues. While doing so he definitely favored his right leg. The first night we were in the PICU Beckham had a femoral central line inserted. Well for reasons still unknown it clotted immediately causing venous back flow. His right leg became very discolored and swollen. The line was removed, but he is still recovering from the trauma. Below is a picture that shows the difference between his right and left leg:

(As you can see there is definite size and color discrepancies between the two legs)

Oh, I'd like to thank Karin Dance for pointing out my mental deficiencies while dating the last two blog entries. The dates have been fixed, but in reality the deficiencies will always remain.

And again, thank you everybody for your thoughts, prayers, and kind words at this time. They are much appreciated.

Nate, Kim, Gwen, and Becks

Tomorrow there is a follow up MRI scheduled to more specifically assess and evaluate the efficacy of the chosen therapies. Please keep our little guy in your prayers.

10/28/2008

(This is another pic taken just a few hours before the stroke)

While our world still seems to be spinning quicker than usual things were a little better today. Beckham was more alert and we were able to experience some of his awesome personality between his naps of exhaustion. He used a few of his favorite words, "daddy" - "bubbles" - "Elmo", and he began eating (drinking) again.

We had talks with the different specialty physicians today and each had different things to say about his condition. The hematology team is really focusing on blood (as hematology does) to be sent out for testing. They are looking to see if he has any sort of clotting disorder. During our converstation many rare disorders were discussed, but we are in wait and see mode. His platelets had a slight recovery today, which should help immediately with the brain bleed, but we still are not sure why the thrombocytopenia exists in the first place. Not sure why the clotting does either. (For those that don't know it is a really strange combo to have clotting issues along with low platelets)

The neurology team is happy with the progress that he has made so far. They plan on continuing with the heparin drip to break down existing thrombi while preventing new clots from forming. They have also started him on Keppra, an anti-convulsant, to increase his brain's seizure threshold. He still has some frightening moments when he seems like he is not going to respond to stimuli, but he has yet to seize since last night.

Interestingly enough, his heart has been golden through this whole process and seems to be the least of our current worries.

I need to shout out a huge "Thank You" to the Nursing Students in the State of Iowa. For those that don't know, I am a nursing student and will be graduating with a BSN in Decemember (well if Beck stops getting hospitalized so I can go to school). Over the last year I have served on the Iowa Association of Nursing Students Board of Directors as the Public Relations Director. This Monday and Tuesday was the huge convention that we have been planning as a board for nearly 600 of Iowa's nursing students from all over the state. It happened to be held in Coralville IA, adjacent to Iowa City so I was already going to be here this week even if this hadn't happened with Beckham. Well I was part of the planning, but I didn't make the first day or most of the second day of the conference because my time was better spent with Becks. Because his condition improved I did go over to be part of the ending meeting of the convention if for no other reason than to have a quick break from the hospital. Well I found out that they had done a fundraiser in Beckham's honor and hundreds of attendees, most of whom I had never met before donated to our family. All I can say is thank you so much to everybody there and thank you to my fellow Board Members (well ex-Board Members, part of the annual convention is voting in a new Board). Thank you all.

Also, my parents flew in from Utah last night and Gwen couldn't be happier playing with Gwamma and Papa. It is a relief to have a situation in which Gwen can get the attention she deserves.

Again thank you for your thoughts and prayers, we know they are helping.

The Beckham Bunch

Update 10/27/2008

(Beckham resting around noon today, he has spent most of his time sleeping since last night)

Today we learned that Beckham was seizing because he was having a stroke. There is a bleed at the site of the clot and that was the causative factor of yesterday's seizure activity.

Tonight he had another seizure episode (around 9pm) in which again became unresponsive to environment and his eyes turned into a left fixed gaze. Also, like yesterday Ativan was used to stop symptoms. He is now sleeping heavily as is common after a seizure.

As for what to do next nobody knows the right answer. Heparin is an option, but because of his low platelet count it could increase bleeding. Not giving heparin is an option, but despite taking away the risk of bleeding you are now risking further thrombosis (clotting). Because of the location of the bleed surgery is not an option.

Decisions are made in a collaborative effort between the intensivists, pediatric neurologists, pediatric hematologists, and his cardiologists.

As for Kim and I the only thing that compares in how difficult it is to watch Beckham go through this is what we watched him go through the first 16 days of his life. This is a close second.

We can only ask that you keep him in your thoughts and prayers. Also keep his healthy care providers in mind as you pray for they face many difficult decisions concerning is route of care.

It is difficult not to have our little man entertain us with his contagious laugh and smile that are available anytime of day when he is healthy.

Again, we will try and keep you updated. We understand that those who know Beckham love him as much as we do.

Beckham & Co.

Beckham back in the PICU (10/26-27/2008)

(This picture was taken just an hour or so before he had the seizure, he has decided to take daddy's hat for his own. Daddy is happy for him to have it)

UPDATE: They have decided to go with the heparin therapy and infuse platelets to combat the thrombocytopenia he is been going up against.

Being displaced from Beckham's room as they insert a central line catheter and unable to relax I've decided to use 'blogger' as a temporary mental release and update everybody to our last 5 hours. Today is his first time back in the University of Iowa PICU since transplantation.

When Kim returned to Beckham's room after finishing the update below this one she found Beckham unresponsive to verbal or physical stimuli despite normal vital signs. She got a nurse and called me. Fortunately I was already in Iowa City working on a conference for Iowa nursing students.

When I arrived at the hospital I found Beckham in a similar state. His pupils reacted poorly and eyes weren't assimilated. The right eye looked straight forward while his left eyed strayed left. He was given Ativan and Benadryl and began to move again after about 15 minutes. After a while longer he again responded to physical stimuli and even began to move around a little bit without being prompted to do so.

At this time a head CT was ordered and the staff called the PICU for a room. I went with Beckham and the healthcare providers to the CT. There he even opened his eyes a little and by the time we got to the PICU he had said 'daddy' and his favorite word, 'bubbles'. Though his actions were still sluggish and he would 'phase out' periodically. The next step was MRI, where he became so active they had to snow him with Morphine and Versed for him to be still enough for the images to get done.

So what is going on? After pediatric neurology looked at both the CT and MRI they've determined that Beckham has a right-sided venous thrombosis (a blood clot on the right side of his brain in the veins). What caused all this scare in the first place was likely a seizure resulting from the aforementioned clot. For now the treatment will be heparin and close monitoring. Hopefully things were caught before any long term damage was done, though it is too early to tell. If the Heparin works than we could possibly avoid any need for surgery.

One thing that brings all the pieces together is that this could be the cause of the uncontrolled vomiting over the last three weeks or so. Every time we seemed close to solving the puzzle of Beckham's ailment we would come up short. This recent diagnosis would override those shortcoming as an 'umbrella' answer to his symptoms.

As for the rest the family? Well we are frazzled, but relieved to have a diagnosis at the same time.

We will try and update any future chages or events.

Thank you to everybody offering their prayers and support. Our Ward is holding a special Fast for him today (10/27).

Beckham & Co.

Update 10/26/08

Greetings from Iowa City. Yup...still here! Yup...Beck is still sick. And yup...we still have no idea why! I guess that you could say that I am feeling a little frazzled at the moment.

We came up here on Friday (like the below post said) and the Urologist literally took one look at Beck and said that he needed to be admitted because he is "a sick baby." Beck has continued to stay a "sick baby" since then. His vomiting is continuing to get worse and his weight dropped from the 25% for his age to the 7%. He has lost so much weight that he has gone down a diaper size (so sad). Nate and Gwen have joined us up here and on top of it all, Gwen also started vomiting (lovely). Her vomiting lasted for about 24 hours. She is doing much better. I was hoping that her vomiting was a good sign and showed that maybe all Beck has is a stomach bug. I kind of doubt that is the case now.

Beck has had test after test and all of them seem to come back negative for anything. His heart also looks great. The doctors are seriously baffled at what is going on with him. Hmm...that makes two of us! We are still waiting on CMV and EBV (Mono) results to come back. I really hope that both of those are negative as well. Tomorrow more testing will be done. Let's all hope and pray that we can get to the bottom of this mystery soon and that it won't be anything serious.

On a happy note, we have seen so many doctors and nurses who took care of Beckham before and after his transplant and they are blown away at how good he looks. It is so bitter/sweet being back here. We love this hospital and the care we recieve, but it also brings back a lot of scarry memories.

We will continue to keep you posted on anything. Thanks again for all of your prayers on his behalf...he sure needs them!

-Kim

Quick Update 10/24

Just to let you know Kim and Beckham are now in Iowa City. He had a previous appointment there with Urology so Blank discharged us and those two went east immediately after. They were supposed to come home tonight, but the Docs at U of Iowa weren't comfortable sending out a sick Beckham so they admitted him.

Now we are just waiting, and praying, to figure out what is going on so we can get on with things...we'll let you know if we learn anything.

Update 10/22/08

So here we are back in the hospital again. That's 3 times in the last 3 weeks. We should be getting close to breaking a record.

Beck started throwing up blood last night and I immediately took him to the ER. Luckily Nate was already at the hospital working and he met me right when I got there. It is embarrassing how well I know the ER rooms. There are signs inside the rooms that I have memorized on both the English and Spanish side...and I don't even speak Spanish! Yeah, obviously we have spent way too much time there!

Anyway, once in the ER it took try after try to get an IV in him. Pediatric life flight was out and they had to call adult life flight to finally get his IV in. One thing that's for sure is that it never gets easier to watch your child get poked over and over again. You would think that I would be used to it by now, but I am not and I want to cry every time. Beck looks like a pin cushion. He has bruises everywhere from needle holes.

Anyway again, it could not be determined in the ER what was wrong with him. His infection levels came back elevated (probably from his UTI), and his platelet levels came back even lower than when we were in the hospital last week. They decided to admit him and get to the bottom of this mystery. Today was just a frustrating as last night. Beck threw up over and over again and looks horrible. He has no appetite and is steadily loosing weight. They have decided to keep us in the hospital until they figure out what is wrong with him.

Beck's test results came back from his test on Friday and they showed that he does have a urinary reflux that will most likely need to be fixed surgically (darn it!). This is probably what caused his UTI and will probably cause more in the future if it is not fixed. We are still planning on keeping Beck's urology appointment on Friday in Iowa City. If he is still in the hospital on Friday than we might have to go up to the U of I hospital as patients and continue our care there.

I think that is all of our latest news. I promise that one of these days I will update the blog with happy news. It's coming soon, I can just feel it!

Please keep little Beckham in your prayers. He has a whole bunch more lab tests tomorrow. Lets pray that they will only have to poke him once to get all of the blood they need for his labs. Lets also pray for an answer to what is going on with our little guy!

Thanks for all of your continued support and love for all of us!
-Kim, Nate, Gwen & Beckham