Update 2/23/09

I started this post earlier today after we were told that Beck would have to stay in the hospital until Friday. I am now finishing this post from home, with Beckham beside me. Quite a drastic change don't you think?

Beck is definitely on the mend, but not quite where we would like him. His blood is still testing negatively to the Pseudomonas bacteria (yeah!) but he will remain on the antibiotics until Friday, through a PICC line. We will make the trek back up to Iowa City on Friday to have the PICC line removed, and have a cardiology and neurology appointment. Hopefully by then we will have a more active, happy Beckham.

As for now he remains quite lethargic and calm. He not only is recovering from the Rotivirus and Pseudomonas bacteria, but his hemoglobin has dropped into the critical stage and the anemia has completely drained all of his energy. The doctors do not want to risk a blood transfusion when he is so extremely immuno suppressed, so he was given a shot in the hospital to help his body produce more red blood cells, and put on iron supplements. His hemoglobin did increase with the shot, but has since come down. The hope is that it will increase now that we are home and not having so much blood drawn. Cross your fingers!

Beck, though usually pale, now looks much worse with low hemoglobin. Either that or he just needs a tan!

We are now on super lock down again (not like that is anything new) and will need to remain extra careful with our little guy. Thank you a thousand times over for all of the prayers offered not only on Beckham' behalf, but for the rest of us as well. We sure felt them and are all feeling much better. I think that the Rotivirus is finally on it's way out of our door and I could not be more delighted!

Thanks again!
-Beckham & Co.

Update 2/19/09

I liked Nate's title of the last post of "Rotivirus 2, Scadlock's 0," because now it's up to Rotivirus 3, Scadlock's 0 (bummer). Yeah, that's right, Rotivirus has claimed another victim in our family; little Gwen now is chucking and squirting out of both ends. What can I say but when it rains it pours! At least I am feeling much better and am hoping that Gwen will be back to her normal crazy self tomorrow. Just make sure to steer clear of our family for a while. I am not going to spread this nasty bug on!

Now for an update on Beck:
Nate forgot to add the updates on Beckham in his post yesterday so I will try to summarize up both of the last days.

After reaching smoking high temperatures where Beckham had to be given Ibuprofen twice (transplant patients are not supposed to have Ibuprofen), his fever has finally broken after 8 days. His vomiting has stopped (or lessened) as well and if we could only get his diarrhea to do the same then we would be on our way out of here (maybe). I wish I could say that he was acting better, but the truth is that he is lethargic, grumpy, super clingy (he has to ALWAYS be held...secretly I love it!), and sleeps most of the time. I remember this stage when he had the Hand, Foot, and Mouth disease and know that it takes his body a long time to heal. I will be patient.

Beck's blood culture from Monday still had not re-grown the Pseudomonas bacteria after 48 hours (not sure if that is the same today). This is still very uplifting news, but the doctors tell me that it will take a full five days to see if it is truly gone from his blood. The doctors also swabbed his circumcision site and that did grow the Pseudomonas bacteria. What this means is that the bacteria is on his skin and maybe it gives us the answer to how he got it in his blood in the first place. Nate and I are kicking ourselves right now for getting the circumcision/hydrocele surgery. We were doing the circumcision so that it would not be a source of infection for Beckham. Guess we were wrong.

Beck also had a PICC line put in his arm today. I think my heart stopped when they told me that he was going to the "Cath Lab," but they quickly explained that it was for a PICC line. Whew! When the Cardiologist put the line in his left arm (the side that was effected by his stroke) his veins were blocked off and he had to use a wire to drill through the blockage. Yuck! Because of this blockage, Beck has to go back on the Lovenox shots in his legs twice a day. Double yuck! The cardiologist passed the news of Beck's blockage off to the neurologist (who happens to be his wife) and she came to see Beckham later. Beck's neurologist is a tiny, 100 lbs, sweet woman who scares the crap out of me...in the sense that I am always scared that she is going to give me bad news. She will keep checking on him, but for now she is alright with his behavior, but still convinced that he has some sort of clotting disorder.

Another fun adventure of the day is that Beckham's Tacro or Prograf (anti-rejection med) level has decided to shoot up to <30. His level is supposed to stay between 6-10, and for some reason a virus makes is shoot up, thus making him super immuno suppressed and unable to properly fight off this virus and infection with the little immune system he has. For now they will lower his dose a great deal and also take him off of the Valcyte he takes for CMV. His CMV might come back because of this, but the other illnesses are more important to get rid of.

I think that is it for the update on Beck. I'll let you know if there is more. As of now they are deciding if they want to send him back to Blank Children's Hospital in Des Moines to finish out his antibiotic's (once he is feeling a little better) or if they want to just send him home with the PICC line and Nate and I can take care of it ourselves. Truthfully, I am okay with either. I just don't want to go back to the hospital once we are home.

I know that the last 6 months we have had a lot of "update" posts and a lot with not-so-good news. I know it is not so easy to read and trust me it is not easy to write. I know that our little guy and the rest of our family has been through so much. And I know that it seems never ending. But in the midst of it all is an amazing inspiring story and a life that has touched and changed each of us for the good. I know it's been hard, but I know that it has been worth every second. Beckham is worth every bit of suffering that we have endured. Heavenly Father loves him, we love him, and you love him.

Take care!
-Beck & fam

Rotavirus 2, Scadlocks 0

So, now Kim has the bug too.

She asked me to do a quick update, usually when she does so I respond with a soft "k" and then put it off until she just does it herself. Well, Herself now has Rotavirus, is sick out of her mind, and is hanging out in a hospital with our lethargic sick baby.

Gwen and I are still in Des Moines and we've decided it is safer for now if Gwen stays away. This is getting too similar to August when all of us but Kim had hand, foot, and mouth. Kim's mom also came to help watch Gwen with the hopes I can work and not be fired from the job I just started in January and now have already taken off 4 or 5 sick days for Beckham.

Kim also wanted to make sure I mention that Beckham's infectious diseases physician is aptly named Dr. Gross.

Think that is all for now.

Us

Update 2/17/09

The ambulance ride. The netting on Beck's head is to help hold his scalp IV in place. Note the DVD's in his hands. This kid loves movies!

Guess where we are? If you guessed home then you are sadly wrong (don't I wish). Actually, we are in Iowa City, tucked in tight to a new hospital room. Beckham was brought here by ambulance today and I was the lucky one that got to accompany him. I've never ridden in an ambulance before...I never want to ride in one again.

On top of the Rotavirus, this morning I was informed that Beckham's blood had grown a bacteria called Pseudomonas. This is not happy news. From what I'm told - not being the health expert as Nate - it's a pretty nasty bacteria that can cause many different symptoms and makes itself resistant to antibiotics. Because of this, the doctors are treating Beckham with three different types of strong antibiotics, hoping to trick and kill this bacteria. As of today - after 24 hours of antibiotics - his blood did not grow the Pseudomonas bacteria again. This is uplifting news, but they will repeat the tests tomorrow to find out if we get the same results. For now, he is being treated by the Infections Disease doctors, thus being the main reason for our transfer to Iowa City.

I'm not going to lie...Beck is super sick. He can't keep anything down and shoots continuously out of the other end. I won't go into more detail (not that you want more), but know that this illness has really effected him negatively. For now, he sleeps most of the time, as he hardly has the energy to hold up his head (so sad). Surprisingly, he still has enough energy to demand a movie and throw a HUGE fit when you put in the movie he does not want. What a kiddo! That's our Beckham.



Please keep Beck in your prayers, as he has a long way to go. I do not know how long I will be up here with him. My mom is flying into Des Moines tomorrow to help out with Gwen so that Nate can work and study for boards (thanks mom, you're the best!). We will keep you informed on everything.

Thanks again!
-Kim

Update 2/16/09

Whew....where to begin. Sometimes our lives feel like we are running in circles, never seeming to get out of the same old cycle of home, hospital, and home again. I know we'll get there...just one day at a time I guess.

If you couldn't read between the lines, Beck is back in the hospital. After being home for only 3 1/2 days, his fevers were getting out of control and he added vomiting to the mix (guess he just felt like we didn't have enough excitement to deal with). We headed the ER Sunday afternoon, to which Beckham greeted the waiting room by filling it with vomit. Luckily, everyone is VERY familiar with him and immediately ushered us back to a room. From there, Beck had a load of blood tests, an x-ray, and then was admitted. It was a nice thing that I was 100% positive that he would be admitted and packed ahead of time.

After getting settled in our room and debriefing the residents, I made it clear that EVERYTHING needed to be ruled out as a factor for Beck's illness - mainly brain and heart. They agreed and then went on to tell me that in the x-ray done earlier that night, his heart was larger than the x-ray done the week before. Naturally this scared me to death and I freaked out! They took us down for a CT scan soon after and did a EKG of his heart. The CT of his brain came back normal. Can you believe that? Normal! This means that his clot and bleed can no longer be seen in his brain. A big sigh of relief was made that it was not his brain, although this still left the heart to think and worry about. His EKG came back irregular...but they expected irregularity with a transplanted heart, and went on to order and ECHO for the next day. On top of everything else, Beckham at that time had started to have numerous, stinky, dirty diapers in a row. Think about it...multiple dirty diapers and a fresh circumcision equals a bad combination and lots of pain. Ouch, ouch, ouch! All I can say is that not much sleep was had here last night.

A cardiology visit and an ECHO the next day showed a normal heart (whew) and no signs of rejection (whew again). We gave another big sigh of relief, but still had no idea what was wrong with him until the results of his stool sample came back positive for Rotavirus. If you are unfamiliar with this, it is a virus that causes fever, diarrhea, and vomiting, and can last 3-9 days. Most children are vaccinated against this virus, but Beckham cannot have it because it is a live vaccine. All we can do now is wait it out until it has ran it's course and Beckham will probably have to stay in the hospital while it does. He refuses to eat, and the little bit he drinks he vomits. He is on IV fluids and we are doing our best to keep him comfortable. Right now all he wants is to be held and cuddled 24/7 and we are doing our best to make this possible.

Please keep our little guy in your prayers, that this virus will not attack his body the way the Hand, Food, and Mouth virsus did. Thanks for all the continual support!

-Beckham & Co.

Heart Day

Beckham is at home and doing relatively well, while still suffering from unexplained fevers, male pain, and a wounded pride over the fact that we would dare let someone operate on his manhood (we're so sorry litte buddy). Despite all of this, he is healing and staying out of the RSV filled hospital (whew). We are doing our best to keep him comfortable with pain meds, constantly cuddled by Nate or myself, and continually watching his favorite entertainers The Wiggles. I'm sure he is going to milk this surgery for all of the sympathy he can get, and fortunately we are all to happy to oblige. He sure deserves it!

A great, big Happy Valentines Day to everyone out there. Nate and I have never been great at the romantic part of Valentines Day (for our first Valentines Day together, Nate gave me a workout video. For some it would have been insulting, but for me it was perfect!) and have never really known how to celebrate it properly. It's a great thing that Valentines Day is also the national Congenital Heart Defect Awareness Day, because we are a lot better with that.

Some interesting info....

-CHD's are the number one birth defect and the number one cause of infant death related to defects.

-1 in 100 babies born will have a CHD.

-1 in 10 of those babies will have a fatal defect.

-Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.

-In the U.S., nearly twice as many children die due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

These are all facts that are not easy to stomach, but they are a reality for families such as ourselves. We can only hope and pray for more research, more answers, more funds, and more lives saved. If you would like more info click here.

The main purpose for this post is to write a little note on Valentines Day about the amazing heart that continually touches our lives, and gives us a reason each day to thank our Heavenly Father for the precious gift of life. This heart that was born to a precious little baby Jake, was well loved and cared for by his parents, older brother and many others, that refused to stop beating when a life was cut short, and that now beats in Beckham's chest and continues to never give up.

We love this little heart and are so grateful for the choice that the Campbell Family made to donate Baby Jake's heart so that our Beckham could live. Not a day goes by when we do not think about Jake. He is the first thing we think about in the morning as we get Beckham's AM meds ready, and the last thing we think about when I get his PM meds ready....but that is just the beginning. We think about Jake every time Beckham smiles, laughs, cries, hugs, kisses, plays, and acts like a normal baby. He is the reason that Beckham does all of these, and many more. He gave our baby life, and continues to do so, despite all of his struggles.

Our hearts will always ache for the Campbell family and their loss. We are so grateful to have them as a part of our lives, sharing all of Beckham's milestone, with Jake's heart guiding him on his way.

Please remember on this Valentines Day to become an organ donor. I know what a hard concept this is, and hope that this will never become a reality for anyone, but until we can grow hearts and other organs in a laboratory, this will be the reality. Organs are greatly needed. Only about 30% of the children who need a heart transplant receive one in time. For more info on organ donation click here.

2/12/09

It's surely been a looooong couple of days and I can hear my bed and Beck's crib calling us from inside this hospital room. We can't wait to heed their cries, but for now we will have to wait.

To give you a short explanation, Beck's surgery was successful but he is now back in the hospital. Shocked? I'm sure you aren't. He is Beck, and always seems to want to keep us on our toes.

To give you a long explanation....Beck and I (Kim) headed out to Iowa City for his 8:00AM scheduled surgery on Tuesday. They wanted us there at 6:30AM, which meant that we had to leave around 4:00AM (oh joy) to get there on time. After arriving at the hospital, the process was pretty simple - check-in, wait, meds, wait, meeting with miscellaneous doctors, and more waiting. They had given him a does of Versed before the surgery (which usually has minimal effects on him) and Beck became one happy, loopy baby. While we were waiting to go back to the OR, Beckham was on a bed in the post-op room and swaying back and forth in a drunken sort of manner. Another couple was watching him in his loopy state and looked at me in a questioning manner, to which I responded, "he's a little stoned right now." I realized right after my comment, that that was probably not the best response because they both gave me an almost offended look. I guess I should have responded "I'm sorry, my son is under the influence of an anesthetic and is suffering from its effects." Hmmmm...next time, I guess. All in all, the surgery was a success, Beckham's bilateral hydrocele's were fixed, and he was circumcised.

Beck and I headed home a few hours later, with a sheet of symptoms that they did not want him to suffer from post-op. Of course, Beck did not have one, but all of the symptoms (fever, not peeing, horrible pain) on the sheet and soon after returning home, we had to make the trek the ER here in Des Moines. The ER soon admitted him and we were placed in a room surrounded by RSV kiddos (I can hear all of the other heart mom's cringing as I write this). Right now is the peak of RSV season and this is exactly the place where we do not need to be! Yikes.

As for now, we are hoping to be released today. We will see about that because we were supposed to be released yesterday, but as the nurse was filling out the discharge papers, Beck spiked a fever and broke out in a rash. Go figure.

We'll keep you posted as usual. Thanks for all of your thoughts and prayers. We will make it to our beds at home soon enough!

Update 2/5/09

Just a few things that we thought we'd update everyone on....

First - It looks like we might have an answer for all of Beckham's ear infections! For those that don't know, Beckham has chronic ear infections where he will get an infection, take antibiotics, and a week later it's back (no lying). It has been this way for most of his life (poor little guy). We saw an ENT (Ear, Nose, and Throat doctor)when we were in Iowa City and they suggested for Beckham to get tubes in his ears. Beck was not in the best health at that time and we decided to wait until his condition was more stable. After 2, or 3, or maybe 4 more ear infections, I had had enough and took him to a ENT here in Des Moines. The doctor took one look in his ears and said that he does NOT need tubes, but that his infections are not related to his ear drums. His diagnosis was Severe Dermatitis of both the inner and outside ear, and even behind his ears. Most of the time this can be treated with a 5 day dose of ear drops and then it's gone, but in Beck's case (because he always has to make it a little more exciting for all of us) he will probably have to have a steroid ear drop every other day for the next year. Crappy, I know, but it is working! His ears have never looked better than they do now.

Second - No more blood thinners, which means no more shots in his legs twice a day! Yeah! That's all I have to say about that!

Third - Beckham's surgery for his circumcision and hydro-seals/hernias has been scheduled for February 10th. As much as I hate the thought of Beckham having another surgery, I feel better that we get to take him home after. It's supposed to be an outpatient surgery, but the bad part is that it's in Iowa City, which means two hours of driving home after he's just had his man parts operated on. Ouch! Big ouch! Please remember to keep him in your prayers on that day. We'll keep you posted on the results of his surgery.

That's it for now. Have a great rest of the week!
-Beckham & Co.

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