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.