10/30/2008

(Today Beck offered raspberries for all)

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

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

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

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

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

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

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

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

Once again, thank you to all.

Beck, Gwen, Kim, & Nate

10/29/2008

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

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

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

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

Things really are a roller coaster here.

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

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

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

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

Nate, Kim, Gwen, and Becks

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

10/28/2008

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

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

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

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

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

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

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

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

The Beckham Bunch

Update 10/27/2008

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

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

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

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

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

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

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

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

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

Beckham & Co.

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

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

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

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

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

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

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

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

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

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

We will try and update any future chages or events.

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

Beckham & Co.

Update 10/26/08

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

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

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

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

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

-Kim

Quick Update 10/24

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

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

Update 10/22/08

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

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

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

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

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

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

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

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

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!