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