10/29/2008

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

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

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

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

Things really are a roller coaster here.

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

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

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

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

Nate, Kim, Gwen, and Becks

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

10/28/2008

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

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

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

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

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

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

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

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

The Beckham Bunch

Update 10/27/2008

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

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

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

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

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

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

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

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

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

Beckham & Co.

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

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

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

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

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

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

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

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

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

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

We will try and update any future chages or events.

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

Beckham & Co.

Update 10/26/08

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

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

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

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

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

-Kim

Quick Update 10/24

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

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

Update 10/22/08

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

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

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

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

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

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

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

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

Update 10/21/08

First off, we are home. Sorry to leave everyone on a cliff hanger. Beckham's vomiting stopped (for the time being) and we were sent home. Two new meds have now been added to his daily routine. One of the meds we have to give 4 times a day (even at 3:00 AM!). I have been so spoiled since Beck's transplant, that I have only had to give him the meds that are once of twice a day. I guess I was due for a hard one.

Beckham had a pretty stable week since returning home from the hospital, but as soon as the weekend began his vomiting started again. Bummer! I am so sick of puke (I am sure Beck is also)! It was not enough puke that I felt that we had to return to the hospital, but still frustrating none-the-less. Beck also has almost no appetite. I have been trying really hard to feed him and he just looks at the food like it is something foreign. I am not going to give up though!

I took Beck to the dentist yesterday because his gum's are extremely swollen and bleeding. The dentist diagnosed him with Herpetic Gingivostomatitis (wow, what a word!). It was explained to me that everyone gets it in their life but does not really notice it. Because Beck is immuno suppressed it has hit him harder. He had a low grade fever for a couple of day, swollen bleeding gum's, and mouth sores. We are hoping that it will run it's course without much excess problems.

The last thing we have to report on Beck is that I took him in for a test at the hospital last Friday. This test was to check for urinary reflux (to see if he will be susceptible for more UTI's). We are also headed to Iowa City this Friday for a Urology appointment. This is for surgery on his hydro-seals and his circumcision. We are also going to discuss the issue with his UTI from last week. Poor little Beck. On top of everything else he is going through he has to have his male organs poked, prodded, and operated on. This kid just can't catch a break.

I know that things have been a little frustrating lately for our little guy, but in spite of it all we know how blessed we are. Beck may get sick a lot, but he is a healthy, thriving, strong little baby. He has so much life and fight in him. We knew that the road after transplant would be a hard one, but it is also so much sweeter than we anticipated.

Thank you all for your prayers and kind words of encouragement. They mean so much to our little family.

Update 10/15/08

The results from all of Beckham's tests came back (which were a lot!) and the culprit for his illness is a UTI. This makes sense because a UTI can have all sorts of symptoms, and Beckham had a whole bunch of symptoms. They ranged all the way from horrible vomiting (that couldn't be controlled with Zophran), diarrhea, fever, smoking high blood pressure (147/88), and super pale skin. Beckham also had bruises covering his face, arms and legs. This was caused from his platelet counts being low. They were not low enough for him to need a platelet transplant, but still low none-the-less.

As for now Beck is being given antibiotics and anti-nausea meds. If he can keep food and liquids down then we may get to go home today. Here's hoping!

Update 10/13/08

On a good note, since our last post Beckham began to improve and start to get better. On a bad note, his sickness started all over again this weekend and now he is back in the hospital. I am beginning to think that there must be some sort of magnetic pull between Beckham and the hospital because he can't seem to stay out of that place.

I have had a long couple of nights and days and I don't have the best frame of mind to type out every detail. I will try to update in the next couple of days when we know more what is going on. The best that I can tell you is that he is still dealing with vomiting issue and other fun (ha ha) stuff. Please keep our little guy in your prayers. He looks pretty miserable right now. He is down 2 lbs and for a baby that is a lot!

-Kim

Update 10/4/08

This weeks highs and lows:

Low - Beck started off this week (last Sunday) with vomiting twice. I thought that it was because of his "loose" cough that he was making himself throw-up (silly me). We watched him closely for the next couple of days and brushed it off.

High - I had my good friend Erica (amazing photographer) take Gwen's 2 year old and Beckham's 1 year old pictures. They turned out so great even though the kids were semi cooperative. Poor little Beck had labs a 1/2 hour before his pics and they had to draw lots of blood from his head. Luckily Erica was able to photoshop out the bruise from his head. Here are a few of my favorite pictures. Gee, my kids are so stinking cute! Click here & here for more info on Erica's photography business.

Low - By Tuesday night Beckham was super fussy and grabbing his ears (here we go again) and so Wednesday morning I took him to the doctor and he was diagnosed with a double ear infection. Too bad he could not get a Rocephin shot for the infection. Last time he was given one he had an allergic reaction and broke out in hives. Now we have to deal with giving him oral antibiotics by mouth. I hate giving oral antibiotics to a baby...specifically Beckham.

High - I finally mailed off the "thank you" letter to the donor family of Beckham's heart. This has been a very hard thing for Nate and I to put into words our gratitude for the gift of life that was given to us and when it was finally finished (only a year late) it brought us tremendous peace. We would love to get a response from the donor but we would absolutely understand if we do not. I just hope that the letter brings them some peace also.

Low - The day after Beck's ear infection diagnosis he started throwing up again. He was throwing up so much that we had to take him to the ER (our home away from home) for fluids. It took 4 pokes to finally get a vein for an IV, but once the fluids and Zofran was in his system he stated to look a lot better. The ER doc was great and promised to try and treat us as "out patients" so that we would not have to stay over night. I think that she could tell that we were a little sick of the hospital. Too bad that Beck did not stay happy very long. It has been three days since the ER visit and he is still vomiting. Luckily we have extra Zofran, but if he does not knock it off soon then we will have to be in the hospital over night. Poor little guy! He looks terrible. He is super cute and cuddly right now but that is because he feels like crap!

High - Beck's blood pressure has decided to stabilize and he was taken off of Enalipril. He is now only on one medication (except for the antibiotic for his ear infection). We have never had so little medication to worry about (knock-on-wood). What an amazing little guy.

Low - Beckham has decided not to walk again since the video we posted last week. Oh well. I guess that I will have to keep carrying him around.

High - I finally started to teach aerobics again! I am only teaching to a bunch of friends from church and the neighborhood, but it sure feels great to get out and be doing something that I love.

I don't think that our lives would be complete without the low's & high's that we experience every week. Even though they are sometimes frustrating and trying, they are part of who we are and we would not be the same without them.

Hope your week has much more high's and a lot less low's!

Walking Stinker

Gwen & Beckham's Halloween costumes arrived in the mail this week (thanks mom!). Of course I had to try them on the kids to make sure they fit (ha ha, I couldn't help myself). Luckily they fit perfect and the kids looked adorable.

Right after I put Beckham's cute little skunk costume on him he turned around, let go of the coffee table, stood, and then took three steps into Nate's arms. Huh? Where did that come from? Beckham has not even been interested in walking let alone standing. I guess that he needed his super hero skunk costume on to have the confidence to walk. Love it! Here is the video I took right after he took his first few steps. Way to go little stinker!

Catch-up #2

While on our vacation in Utah we got to finally meet baby Noah and his family!



Those who have followed this blog from the beginning know baby Noah. For those who have not, Nate has a relative who had a baby boy (Noah) about a month and 1/2 before Beckham. Noah was born with a severe CHD of Critical Aortic Stenosis. He received a heart transplant when he was 27 days old. Noah's mom (Crystal) and I have become great friends and she has been such a support to me during everything that we have gone through with Beckham. It was so great to finally meet them in person.



Noah and Beckham are on different anti-rejection medications. One of the meds causes hair growth and the other causes hair to grow in slow and thin. Can you guess which little guy is taking what med?

Here's some more fun pictures of the heart twins. We sure love you Noah and family and can't wait to see you again!

Catch-up #1 (Beck's Birthday)

I need to "catch-up" everyone on the other stuff we did this summer besides stay in the hospital. Beck is doing great right now so I am going to take advantage of it. First and foremost....

Happy Belated Birthday Beckham!

Our little rock star turned one year old on August 1, 2008.

We were fortunate enough to be in Utah over his birthday and celebrate with our families. Beck was lucky enough to get two birthday parties.

Eating cake at the Scadlock grandparent's home

Schaalje grandparents party

Here are some fun facts about Beckham:

1. Favorite word - "ball"
2. Interested in walking? - Not in the least bit!
3. Favorite foods - anything (this kid is an eater!)
4. # of teeth - 8
5. Favorite thing to do - steal stuff from his sister and then crawl away as fast as he can (it's pretty cute because Gwen is bawling and Beck is laughing).
6. Least favorite thing - getting blood draws. This happens quite frequently and he never gives up fighting it. You think that he would after all this time.

What a year this little guy has had. We are so grateful for everyday that we have had him with us. He is our little miracle baby and we love him more than we can express. Happy Birthday buddy!

Dylan's Dragon Walk

Hey all you Iowans...

A special Walk for the Help-A-Heart foundation is coming up on Saturday, September 27th at the Wagner Park Bandshell in Ankeny. Help-A-Heart is an amazing organization that helped us out so much while Beckham was in the hospital in Iowa City. This walk is in honor of Dylan Hooper, who passed on June 30, 2008. We met Dylan's family while we were in Iowa City for a follow-up appoinment for Beckham and instantly fell in love with them. Dylan was such a fighter and our hearts are broken for his family. Dylan's mom and another mom of a CHD baby founded the Help-A-Heart foundation to offer finacial assistance to familes with children who have CHD's, who have to stay in the hospital for an extended period of time. This event is such a great fundraiser for such an amazing foundation. If you are available please come! I would love to organize a team in honor of Beckham, but I don't know if that will be possible due to limited amount of time we have. If you are intersted in being on a team for Beckham please let me know. Below is race info:

Registration is a donation of $20 for an individual & $40 for a family including 1 or 2 T'shirts. You can pay an additional $10/shirt if you need more. The individual & team who are the highest fundraisers will receive special recognition the day of the walk. There is a limited supply of T-shirts so please pre-register to guarantee your shirt. Register for the race here.

The last news interview...

At the beginning of July we attended an award ceremony for Methodist and Blank Childrens Hospitals where they received and award for their success rate of families deciding to donate their loved ones organs. We did a post about this event in July but we could not post the news clip because it had not been posted to the news station website. We finally received the news clip. We think they did a pretty good job. Hope you enjoy it as well!

Update 8/27/08

Just a quick update to let everyone know that Beckham is finally home after his 17 day hospital visit. He is feeling and looking much better, but he still is having problems with eating and taking his meds by mouth. Because of this he was sent home with a NG tube. We are hoping to get that out soon. We wanted to upload a picture to this post so that you could see how much better he looks but our computer is acting up. I will post more later.
-Kim

Update 8/22/08

Beckham is still in the hospital but he is doing much better. His fever finally broke and that has helped him get a little energy back and helped his blood pressure get more stabilized. His sores on the outside of his face still look pretty bad but they do look much, much better. Beck was also able to get his IV out because he is now off of fluids and they have changed him from Morphine to Loritab. He is now getting paid meds "when needed" and we hope to ween him off of those soon. The biggest thing that is keeping him in the hospital is the fact that he still won't eat by mouth. Although the sores on the outside of his face look better, the sores on the inside of his mouth are still quite bad. I tried to feed him some bread and cheerios yesterday and as soon as he brought them to his mouth his whole body started to shake because it was so painful. He tried really hard to eat them, but soon after getting them in his mouth he spit them out with a mouth full of blood. Poor guy! He is still being fed NG and that is going...alright! He pulls the tube out every chance he gets. He is now getting Pediasure through the NG tube. They bumped up his calories from 27 to 30 and it has really made a difference. When we brought him into the hospital he weighted 19.13 lbs and now he weighs 21.4 lbs. He still is pretty swollen and I am sure some of his weight gain is due to that but he looks pretty cute with a little chub on him.

Beck has also started to smile again! His smiles are small and infrequent, but we will take what we can get. He is also getting pretty stir crazy at the hospital (that makes two of us) and he is ready to go home. We are hoping to get to go home this weekend. Hopefully that will happen. Nate starts school on Monday and my parents need to leave this weekend. I don't know if I can handle Gwen all day at the hospital if Beck does not get to go home. Lets pray that he starts to eat and can come home!

Thank you so much to everyone that has reached out to us during this time. I am so grateful for the meals that have been brought to me while Beck has been in the hospital. Hospital food is pretty nasty and expensive and it has been so nice to have a home cooked meal every day for lunch and dinner. We are so lucky to live in such a great place with such great people.

We will keep you all posted on Beck's progress. Keep him in your prayers. Please also keep this little sweetie in your prayers. Mia is a little newborn that was born with a similar heart defect as Beck and is waiting for a heart transplant. I have been able to get to know this family and they are amazing and have so much faith. Mia is such a cutie and such a fighter.

Thanks again for everything.
-Kim, Nate, Gwen & Beck

Update 8/17/08 & 1 year transplant anniversary

Greetings from the hospital (unfortunately). Actually now it is greetings from the PICU. We were on the general floor before, but Beckham is requiring a little more care and PICU seemed like the best alternative because the other alternative was being transferred to Iowa City. I love the hospital in Iowa City, but I really want to stay in Des Moines, especially while I still have other sick family members.

Beck is doing somewhat better. He has not spiked a fever at all today. He has had a fever for almost 10 days straight and not getting one today would be a big milestone. He sores are also looking better but worse at the same time. They now look like huge open sores instead of large blisters on his face. It seems like all you have to do is barely touch one of his sores and he is gushing blood (seriously). But I know that his sores have to get to this stage in order to get better. I did try for the first time in a week to feed him by mouth instead of the NG tube and it was very unsuccessful. I will give him a couple more days before I try again. Beck's ear infection also looks better. We switched him to a new med because of his allergic reaction and so far he has reacted just fine to it. His Tacro level is also a little more under control. His dose was cute in half to compensate for the large spike and his level has finally started to slowly drop to the normal range. Hopefully this drop in Tacro level will give him the immune system that he needs to fight off this virus.

The rest of us are also doing a lot better. Gwen is pretty much back to normal. My parent are here helping us while Beck is in the hospital and I am grateful that they will be able to watch Gwen so that Nate can continue to mend. Nate is doing a little better. His fevers have stopped, but he has a mouth full of sores to deal with. I think that he has a whole new appreciation for how sick the kids have been because he can barely talk and eat. I am also doing better. My brain was a little fried from having to be in the hospital again with Beck. It brought back a lot of frightening memories from last year. My mental state must be taking a beating because on Friday I went home to visit Nate and Gwen for a couple of hours. When I got back to the hospital I sat down on the chair next to Beckham's crib and looked down and I was wearing two different shoes. I don't know how I did not notice because they are not even the same height as each other. Oh well, that is very typical Kim behavior!

Beckham's 1 year anniversary of his transplant was yesterday. It was a very bitter sweet day for us. Bitter because we had to acknowledge the passing of the sweet baby who's heart went to our Beckham and also because we had to celebrate this anniversary in the hospital. But it was so sweet to celebrate the precious gift that gave our baby life. We don't know how to express our gratitude to the donor family for the choice that they made to donate their baby's organs....but all we can say is "thank you" for giving us the gift of life when a life was taken from you. Thank you for choosing to take a tragic, heart breaking event and turn it into a miracle. We love our little guy more than we can express and we treasure everyday we have with him and we owe it all to the donor family. We would also like to thank all of the hospital staff that worked so hard to save our little man. We sure love you all and can't even begin to express our gratitude to you.

What a year it's been eh? Truthfully, I know that we would not change anything. This year has changed us and made us completely different, better people and we are so grateful that we were chosen to be Beckham's parents.

-Kim, Nate, Gwen & Beck

Update 8/15/08

Beckham is still at the hospital and I don't see him coming home anytime soon (darn-it!). His body does not seem to want to let go of this virus and other problems seem to show up daily...sometimes hourly. The most important thing is that so far none of those new problems have to do with his heart (big sigh of relief). I think it is more my heart that is suffering because I can't stand watching him suffer so much. But I am his mother and that is my job!

Beck looks pretty awful right now. He is so swollen that he can't open his right eye and I am sure it will be that way for the left eye soon. His blisters are now in the "scab" stage and crack and bleed, but this is a good stage because it means that he is on the mend (from the blisters). He has also been diagnosed with an inner and outer right ear infection. They went to treat the infection with Rocephin and about an hour after he was given the med he had an allergic reaction to it and broke out in a huge rash. He was immediately given Benedryl to counteract the effects of the Rocephin. Because of a combination of the Hand, Foot and Mouth virus and the ear infection, Beck has completely refused to eat by mouth. An NG tube was put in his nose yet again. He has already pulled out 5 NG tubes previous to this one and I am sure that it will not be long before this one has the same feight. Beckham also is still having super high fevers. They are so high that he has been given Ibuprofen on top of the Tylenol. Transplant recipients are not supposed to have Ibuprofen, but we have been given permission to let him have it so that we can get his fevers under control. Another problem that has come to pass is that is Tacro level is totally out of whack. Beck's Tacro level needs to stay between 9-16. His level has been around 11.8 and because of this they lowered his dose by .6 so that he could have more of his immune system to fight off this virus. When they went to check on his Tacro level (thinking that it would come back low and they did not want it to be too low) it had for some reason risen to 30. Now we had to stop his Tacro until we can take another level and see if it has changed at all. All in all, Beck is remaining pretty comfortable. He is on a continuous Morphine drip (they had to change the Fentanyl to Morphine because the Fentanyl was making his blood pressure rise) and sleeps most of the time. I am just glad that he is too small to remember this when he is older. I wish that I could say the same for me.

I am not totally sure but I think that is about it to report on (I could be wrong, but it is 4:00 AM and I do not have to best frame of mind right now). I have been staying at the hospital pretty much non-stop with Beck because Nate also has the Hand, Foot and Mouth disease and is quite sick. He is a super hero and has been taking care of Gwen on top of being so sick. I saw them both for a little while yesterday and it was so nice to see that Gwen is getting better.

Thank you so much to all of the those that have reached out to us during this time. I hope that I have not offended anyone by telling them "no" to their offer for help. The only reason I have said no is because I do not want anyone to catch this virus from us. It is very contagious and obviously very miserable. Thank you to those that have not taken "no" for an answer and have come and visited and brought us meals and so forth. We also appreciate all of the prayers on our behalf. Please continue to keep Beckham in your prayers. He has a long way to go. He is super sick, but he is not as sick as he was at this time last year. Tomorrow with mark his 1 year anniversary of his heart transplant. I have such tender emotions at this time for all that we have been through this past year and for the sacrifice that was made so that my precious baby could still be here. I have so much gratitude for all that we have. Please also pray for the donor family of Beckham's heart. They are also going through an anniversary of loosing their sweet baby and I can only imagine their heart ache.

I am going to try and get some sleep now (good luck to me!). Thanks again!
-Kim

Update on our House of the Damned...

It has been a long time since I posted on here, but Kim is at the hospital and I've joined the kiddos in the ranks of the sick so I'm stepping up and doing the mommy-blogging.

Gwen just started tonight to feel a little bit better. She is still sick and her mouth sores are still really hurting her, but today I got the first smile and even laugh out of her since the day we took her to the ER last week. I have to admit though it was easier for a sick person to watch another sick person than one in pain, mad at the world, but starting to get some energy back. When she was sick and just rolled around like a slug she couldn't get into much trouble...I'm sure she'll come back with a vengeance.

Beck on the other hand isn't feeling so hot. He is still in the hospital and has become pretty lethargic. Because of the pain they have him on a continuous Fentanyl drip and that goes into an IV they had to start yesterday because of dehydration threat. His medical team in Iowa City has lowered the doses of his anti-rejection medications temporarily in order to give a boost to his immune system.

Kim is super-mom, as always, and hanging out with the little guy. Because of my state of being she was able to call our bishop tonight and he gave Beckham a blessing.

As for Kim and I we are trying to figure out what horrible acts we performed in past lives to warrant this sudden onslaught. I mean what could we have done? Were we Nazis? Mobsters? BYU Cougar fans? What?

We debated posting the picture of Beck, but decided it shows how bad this hand, foot, and mouth has been to him. Hopefully a few days from now he'll start to look like our little dude again.

(How Beckham looks when taken over by sickness...

...and this is a picture of Gwen when sick and in pain)

Update 8/9/08

Sorry for the lack of posts. We have just barely returned from our vacation in Utah. We had a great time, but we are thrilled to be home!

Upon being home just one day we had yet another hospital visit. The surprising part is that the visit was not for Beckham, but for Gwen. Gwen spiked a super duper high fever on Tuesday evening and by the middle of the night her fever had reached around 104, she was inconsolable and drooling like crazy (very odd). We thought that it was best to take her to the ER. Once at the hospital they discovered that her white blood count was elevated and she was diagnosed with the Hand, Foot and Mouth disease. This illness has only effected her mouth (so far). We can't say the same for Beckham because he woke up yesterday morning with a fever and sores all in his mouth and on the bottom of his feet. We had to take him to the ER last night and he was admitted to the hospital. He will hopefully be released soon if we can get his fever under control and he starts eating and taking his meds. They put an NG tube in him three times already and he has pulled out every single one. I can't say that I blame him because I would sure hate something up my nose. Let me tell you that this sickness is awful. The kids are just beside themselves in pain. Their mouths are covered with sores everywhere (literally). Poor little Gwen and Beck just want to cuddle all day (very, very odd...but really cute for Nate and I). We will be grateful when this is over. I am sure glad that Nate has not started school yet and that he can be home with me to help me with our sickies.

The rest of us are doing great. Beck had a cardiology appointment yesterday and his heart looks great. His Tacro level is also stable for the moment. He really is doing remarkable for what he has been through in his little life (can you believe that it has almost been a year since his transplant?). While we were in Utah we kept getting comments on how Beck looks like a normal, healthy, happy baby. Everyone expects a "sickly" looking child and that is just not even close of a way to describe our little guy.

That is all for now. I will post pictures from our vacation soon...well, as soon as my little kiddos get feeling better and Beck is out of the hospital.

-Kim, Nate, Gwen & Beck

Update 7/13/08

Good news, good news, and more good news!

Good news #1:
Beck did not throw up anymore and he did not have to go back into the hospital. He also did not lose as much weight as I thought from his stomach virus. Way to go little champ!

Good news #2:
Last week we attended an award ceremony for Methodist and Blank Childrens Hospitals. These hospitals received an award because of their success rate of families deciding to donate their loved ones organs (this was the same award that the University of Iowa received in January). To receive the award a hospital has to have a success rate above 75%. Nate was asked to speak at the ceremony. We love speaking at events like these so that we continually thank all those that saved Beck's life and honor the donor of his heart. The news came for this event and did a clip on Beckham. It was shown on the 5:00 PM news on Channel 13 (NBC). I have tried to find the clip on their website so that I can post it, but they must not have uploaded it. They are going to send us a DVD with the story. I will post it on the blog when it comes.

One really neat thing that happened at this ceremony was that we were able to meet a family who had tragically lost their child and made the unselfish decision to donate her organs. I have never talked to a family who donated the organs of their child before and this was...quite the experience(in a positive way)...to say the least. Both Nate and I were very emotional when we heard them talking during the ceremony and telling their daughter's story. The best part was talking to them after. I sat with the mother of the little girl and we both cried as she told me about her daughter and about why they decided to donate her organs. Their reason for donating was one that I had never thought about...and one that brought me more comfort than anything else has. She told me that when they lost her their hearts were so broken and they knew that if they donated her organs it would mean that other parents would not have to feel the same pain they were feeling. Isn't that incredible? I know how heart broken I was when I learned how sick Beck was and I never ever want someone else to feel that pain...but I did not lose him. I never had to feel that pain. He his here and healthy and happy. This is all because someone else made the unselfish decision to donate their child's organs. I am so grateful to have been able to talk to this family. Thank you, thank you, thank you!

Good news #3:
We made it to Utah! Yeah! We are actually on a vacation...away from our home!

There may be a lack of posts while we are here. Thanks so much for all of your prayers while Beck was in the hospital last week.

-Kim, Nate, Gwen & Beck

Update 7/6/08

Just a quick update to let you all know that Beckham is out of the hospital. He was released on Friday afternoon. When I picked Nate and him up at the hospital on Friday Beckham was all smiles. I was hoping that this meant that he was all better and no more vomiting. Not the case. A couple of hours after we brought him home he got really cuddly and quiet (not a good sign) and as soon as we tried to feed him something it all came back out. The next morning we tried again to feed him something and he vomited it everywhere. I called the transplant team and his pediatrician and a prescription of Zofran was called in for him. I was also given the instructions that if he continued to vomit then he would need to be readmitted to the hospital. So far today there has been no fireworks (meaning there has been no fireworks coming out of Beck's mouth). Lets hope and pray that it stays that way. At least we know that we are in good hands at the Blank Children's Hospital. While Beck was in the hospital he was actually placed in the PICU. He was not ICU status, but since Nate works there and they had room, Beckham was able to be cared for there. The staff in the PICU was so sweet and caring to him. They referred to him as "our Beckham." Thank you Blank PICU staff!

We'll continue to keep you all posted on any changes. As for now, we have decided to postpone our Utah trip by at least a week. Let's hope my tooth that needs a root canal will hold out that long.

-Kim, Nate, Gwen & Beckham

Update 7/3/08

All that I can say is that when it rains...it pours!! This has definitely not been the best couple of weeks here in the Scadlock household.

First:
Last week the summer sick bug visited. It started with little Gwen spiking a fever and getting congested. It soon passed on to Nate, me, and unfortunately little Beck. Beckham actually seemed to handle this cold like a baby with a normal immune system...meaning that he spiked a fever for a couple of days, had nasty congestion, and seemed to improve by the third day. I was feeling so excited because he always takes at least 3 weeks to get over the smallest cold. Nate also developed a huge mouth sore. It was so bad that he could barely talk (it actually sounded so funny. He was so mad that I kept making fun of him). He had to give a presentation at work and had to try and talk through the whole thing like a normal person. What a trooper!

Second:
I went to the dentist on Monday to get a cavity filled (one of three that I have to get filled in the next two weeks). While drilling the tooth the dentist saw that the cavity spread all the way to the nerve and gave me two options to fix that and they were to either have the tooth pulled or get a root canal. I opted to get the root canal and was then told that Medicaid will not pay for a root canal on a back tooth, plus the tooth would also need a crown which Medicaid would also not cover (what the heck? Do they just expect us to have no back teeth?). I still opted to get the root canal and crown without insurance over getting the tooth pulled. The dentist then took my x-ray into the other dentist in the office and they both agreed that the cavity was so bad that I would need to go to a specialist. I have to get this done a.s.a.p because now that the tooth has been opened up I have developed an infection. I woke up the next morning feeling like I have the flu and I am in a lot of pain in my mouth.

Third and definitely not least:
At 2:00 AM on Wednesday morning I woke up to Beck crying. When I went into his room to check on him, I reached in his crib to grab his binki and found that it was soaked with vomit. I quickly picked him up and woke up Nate. Beckham continued to throw-up for a little while and I noticed that he had a fever. We debated on whether we should take him to ER or not. We opted to wait until morning and take him to his doctor first. Beck seemed to do better in the morning and took a bottle and later his meds. I still decided to take him to the doctor and right when I walked into the waiting room at the doctors office Beckham started vomiting everywhere. I did not know what to do because it was all over both of us and the floor. They quickly got us back to the doctor who sent us right to the ER. Beck was pretty dehydrated at this point and extremely lethargic. He was quickly given and IV at the ER (they got it in with only two pokes..that is a record) and fluids. He was admitted so they could watch him over night. He threw up a couple more times after that, but he was given Zofran to help stop it. I also woke up last night to check on Beck and there was blood everywhere because Beck had pulled his IV apart (the IV is on his head and he really hates it). I quickly called the nurse who fixed it right away. I stayed with him last night and most of today. It was so sad because he feels so sick and all he wants to do is cuddle. We thought that he might be doing a little better today and we gave him a little bit to eat. Nate and I ended up with what he ate all over us and he was given more Zofran and his IV was turned back on. Beck is going to stay at the hospital again tonight. Lets hope and pray that tomorrow Beck will be able to keep something down, start to feel better, and we will be able to go home and watch the fireworks...on TV or something:) Poor baby!

Wow, is all I can say. To look at the bright side, Beck's heart still looks great! What a relief!

Have a great 4th of July everyone. I have always loved this holiday and even if we have to spend it at the hospital we will at least be able to spend it as a family.

Thanks for all of your prayers and support.
Much love,
-Kim, Nate, Gwen & Beck

P.S - We are thinking that we will have to postpone our Utah trip for a couple of weeks. For those that we are coming to see...we still want to see you...just a little later. We have to all be healthy first!

Update 6/23/08

Beckham had a cardiology appointment this past Friday. This was the first time he did not have to get and EKG or an x-ray. He was only required to get an ECHO and see the doctor. The ECHO looked great and showed that Beckham's ticker is working great. Beck also has had a negative CMV test for the past three months so the doctor took him off of the Valcyte! I can't tell you what a difference this makes in his behavior. That med is really harsh on his system and he is acting like a different baby now that he is off of it. We also took him off of another med and that means that Beck is officially on only 2 meds (knock on wood)! The doctor seemed really pleased with him and even said that it would be alright for us to take him on vacation. Yeah! Now all we have stopping us from visiting Utah next month would be if he got an illness. Lets pray that he will stay healthy. I am not sure if that will be easy because Gwen woke up with a fever and congestion this morning. She is cutting her 2 year old molars...so lets hope that is the cause of her sickness.

This is Beckham's new face he makes. Again, doesn't his scar look awesome?

Beckham's Tacro (Prograf) levels have been a little harder to regulate lately. They have upped his does quite a bit. I am not sure if it is a side effect of Tacro with the combination of being off of Valcyte, but whatever it is, it has caused Beckham to be constantly hungry. He even wakes up hungry during the night (oh joy). You can imagine how hard this makes the three hour period where he cannot eat during morning and night med times. I was hoping that because of this I would see an large increase in his weight at his last appointment...but it was minimal. We will just keep hoping that he will plump up some time. Our name for him right now is "a fat boy stuck in a skinny boys body."

We pretty much have only good things to report (knock on wood again) and we have mostly been up to enjoying the beautiful summer weather. Now that the flood waters have started to recede, we have been going out a lot. Nate's brother Trevor recently visited us and we were able to go to the Omaha zoo with him. The Omaha zoo is one of the best zoos I have ever been to. If you are able to go, do. You will not be disappointed. Here are some highlights of our zoo trip.

I'll leave you all with a fun video of my kiddos.


-Kim, Nate, Gwen & Beckham

Guess who's 2??

GWEN is 2!!!

Gwen turned 2 yesterday. I can't believe that our little, feisty, sweet, little girly is 2. We celebrated her birthday with a super duper fun party with some great friends of ours here in Des Moines. We served her favorite foods: hot dogs and Caesar salad. Isn't it weird that I have a 2 year old that loves Caesar salad? What a girl.

Most of our posts or updates are about Beckham and this is fun to do one solely about our little Gwen. Here are some fun facts about her.

1. Full name: Gwenyth K Scadlock.
2. Born: June 18, 2006 and weighed 7 lbs 2 oz (she was due June 28th).
3. Favorites: Elmo, The Wiggles, shoes, her blanket, and her binki (we are really trying to break her of that. Currently she only gets a binki at night and when she steals it from Beckham).
4. Famous phrases:"What doing?," more pees (please)?, " "okay," and "bless you."
5. Dislikes: Nursery (we are hoping that changes soon...it would be really nice to go to Sunday School), sharing with Beckham (we are hoping that changes also but we are pretty sure it won't anytime soon), milk (she takes after her mom on that one) and riding in the car.

We are so glad that Gwen is ours forever. She is the sweetest and cutest daughter and the best big sister to Beckham. Her adventuresome spirit, feisty nature, and contagious laughter is the greatest gift we could ask for. While Beckham was in the hospital she was so good. She did such a good job when she stayed with our parents (whom she hardly knew because they live in Utah) while they were here to help us. She continues to do so well (most of the time) with all of Beckham's care.

Happy Birthday Gwen, we love you too much
for words.

Here are a couple of pictures from her party. Enjoy!

Gwen got a tricycle for her birthday. She loved it so much that she would not even get off of it to blow out her birthday candle. We had to bring the cake to her on the bike.


Blowing out the candles with her friends


She loved the cake...even though she does not look like it!

What the weather?

What a crazy couple of weeks we have been having here in Iowa. I hope that everyone out there is aware of the flooding (I am speaking to those out of the state...of course!) that we have been having in this state. I have been a little disappointed in the national news in the way they have shown footage of the floods because they are SOOOO much worse. Here are a couple of pictures that truly show the devastation that has happened here because of mother nature.

Downtown Des Moines

More Des Moines

Iowa City

Cedar Rapids

More Cedar Rapids

These picture only show 3 out of the hundreds of cities effected by the floods.

I have had a lot of people inquire about us (thanks for caring!) and just to let everyone know...we are fine. We live in West Des Moines and not near any rivers. I feel very fortunate to live where we do and I am grateful that we chose to buy a home here instead of near Nate's school in Des Moines.

Please pray for the people of Iowa. 83 of the 99 counties in Iowa have been considered a disaster area and billions of dollars in damage have been done. Today our church meetings were cut short so that we could volunteer our time to pass out supplies that were shipped here from the church headquarters in Salt Lake City. I felt a wave of emotion as the bishop explained how devastating the floods have been and how many people are out of their homes, and without power and clean water.

Wow...I can't believe that this has happened in the town that I call home.

-Kim

Answer & Info

I thought that I should probably answer the "where are you moving" question that I posed in my last post. The answer to that question is that we are not moving away from Des Moines....at the current moment. Nate does not graduate until December and has not yet applied to grad school. He has a list of about 8 masters programs that he will apply for but he cannot apply until he takes the GRE. He is scheduled to take that in GRE (good luck Nate!). We are selling out place because of two issues. 1 - because we have out grown it and 2 - so that we can hopefully have it sold by the time we do move (where ever that will be).

On another note...check out this blog. My friend Erica is quite the blogger and every Saturday she does a post entitled "Saturday's Someone" where she spotlights a friend. This week she chose me to spotlight. I feel so flattered. Erica is such a great friend. We had a tornado scare here in Des Moines this week and Erica and her husband made sure to call us and make sure we knew about it so that we could go and hide. Good thing they called because we did not know about the tornado warning. Thanks so much Erica.

-Kim