Alex and Maddy

Alex and Maddy

Monday, September 28, 2009

We are settling back into our crazy life! We had an extremely quiet weekend because I felt very sick from the time we got home until yesterday. I finally feel better today. Alex was really good while I wasn't feeling good and Bruce was great about trying to keep him occupied.
Let's see...Today we started Horseback riding again and that was really fun. Alex was a little scared at first because we moved him up to a bigger horse. He settled down and did really well. And Eeyore really won him over when we found out he is half zebra (Alex's very favorite animal)!!!
G​randpa comes on Wednesday and we are so excited to see him. We have lots of fun stuff planned including a trip to San Antonio and Sea World!
Medic​ally I have exciting news! Alex's labs came back today and his liver numbers look GREAT! One of them is normal and the other one is a third of what it had been. I cannot even begin to tell you how excited I am. Two out of his threee clotting numbers also look better.
I think that is all. Thanks for checking in on us!

Thursday, September 24, 2009

We are home!!!!!

Th​ey kicked us very early yesterday morning. Starting Tuesday afternoon they started getting a lot of patients with the flu. Knowing Alex's history with the flu they wanted us out ASAP. They asked if I was comfortable going even if feeds were not all the way back to normal. I assurred them I was. They had our paperwork signed and ready so we could get up and go.

Alex is doing pretty well. We are getting ready to start a new medication for stomach and leg pain. We have also checked a few labs today to make sure his clotting numbers are getting better after his vitamin K.

Thank you so much to everyone who has been praying for us and checking in on us.

Monday, September 21, 2009

I have to start by saying how very proud I am of Buggy! Today was needle change day. He let the little two year old in the room next door (who just got a port) and her Mom watch us deaccess and reaccess so "she wouldn't be scared" when ity was her turn. He even gave them a play by play of everything I did. He also did great with his shot. BUT I was most excited about a test we had to have done. Since Liz (our occupationa​l therapist) started working with us again, they have worked very hard on Alex's fear of putting anything in his mouth. It has been a weekly focus and we were thrilled to accomplish oral temperature​s last week which he has been showing off. Well, GI ordered a repeat of a test we did last year where Alex has to put a plastic piece in his mouth and blow and fill up a bag with air. Last year it took hours to complete the test. WE finally held Alex on the bed screaming andshoved it in his mouth and "caught his screams". I was dreading the test today. i hadn't even told Alex we were doing it. When the lady walked in she actually remembered Alex from last year. Well Alex put the apparatus in his mouth and proceeded to complete the entire test in less then 10 minutes. Talk about accomplishm​ents!

Okay let's see what else...

Alex got his Vitamin k infusion today and did great. We are still discussing whether he needs another one before heading home.

We are slowly increasing feeds after being off for anesthesia and the GI test.

The team and GI have decided to hold off on the urologist for now. Because Alex does not seem symptomatic of any bladder issues we are going to wait and see if anything arises or we notice a problem on any further tests.

I got a chance to speak to Dr. Koenig in depth about the syrinx (fluid in Alex's spinal cord). The good news is that they did not see a tethered cord or Chiari Malformatio​n that is causing he syrinx. The bad news is that it is definitely still there. Right now there is fluid in the spinal cord, but the spinal cord is still the correct shape, size, etc. The fear is that the syrinx could expand at any time causing the spinal cord to push out towards the vetebrea an cause damage. The plan is to run some more tests on our next trip and then repeat MRI's of the spine every 6 months. At the first sign of change we will act before damage occurs.

So we are finishing up everything here. We need to get feeds up and consult GI and then we should be heading home.

Thank you for checking in.

Saturday, September 19, 2009

Today has been pretty slow as is always the case on the weekends. Alex's tube continues to be red and hurt. Right now we are trying to continue treating topically. We are keeping a close eye on it to see if we need to move to systemic antibiotics.​

Thank you for keeping us in your prayers.

PS- There are quite a few of you who have called or emailed. I am so sorry I haven't been able to get back to you as it has been a busy few days. Thanks for your understandi​ng.

Friday, September 18, 2009

Crazy day #2...

The day started early as usual. Our team came in we discussed the MRI. They informed me that the syrinx (fluid on the spine column) was still visible and Dr. Koenig would discuss more with me. They also let me know that she was concerned that his bladder appeared very distended on the MRI. They wanted a bladder ultrasound to see if he was emptying his urine correctly. So shortly after we headed up to Ultrasound for the second time this week.

Next came hematology. They agreed that Alex needs Vitamin K supplements and if we can't find an oral version he can tolerate then it needs to be done by IV infusion once every 2-3 months. So I quickly made a call to my pharmacist who informed me she cannot get Vitamin K. So I searched the internet without much luck.

I came back from lunch to find Dr. Pacheco (our allergist/i​mmunologist​) rubbing Alex's back and singing to him. Do we have the best doctors or what? First we discussed the Vitmain K. She did not want to take any chances with the vitamin K and decided the IV infusion is the way to go. Next we discussed Alex's labs adn how often she wants them. We discussed the flu and knowing Alex's history with the flu she wants us to have a prescriptio​n of tamiflu at home in case we have an exposure and Alex gets sick. Last she looked at Alex's tube and we discussed the plan.

Earlie​r in the week, they had cultured some drainage from around Alex's tube. It is growing pseudomonas which is a nasty bug. For right now we are treating topically. However, we are watching Alex closely for signs of infection to make sure he doesn't need antibiotics. So shortly after Dr. Pacheco left my little darling spiked a slight temp to put everyone on their toes. His labs look good so we are just watching to see what his temperature does tonight!

Nex​t came GI! They gave us the plan for restarting feeds and also prescribed the drops for Alex's tube. They also ordered a test to be done in the next few days.

I thought my day was over. But at 4:00 Dr. Koenig and Lakeesha popped in. Talk about an unexpected surprise! They had told us we wouldn't see them today because they had clinic all day. Dr. Koenig wanted to talk a little more about the MRI. She wants to look at the bladder a little more closely as she thinks this could be the source of his pain. Apparently the bladder looked "gigantic" on the MRI. She also let me know they are still trying to determine whether his cord is tethered.
After discussing the plan for Alex's infusions they left.

So it was like a circus around here all day! Thanks for keeping us in your thoughts and prayers.

Thursday, September 17, 2009

I am going to do my best to recount the day, but I am exhausted so forgive me if it is scattered.

After much discussion this morning and a visit from Alex's regular surgeon (who came in on his day off!) it was decided NOT to change Alex's tube. Dr. Tsao explained that removing the tube is "traumatic" and damages the intestine. We do not want to do that more often then necessary since Alex will most likely always need a J-tube. For this reason we need to leave this tube in place until it stops working.

The​n we found out that the machine used for two of the prcedures broke yesterday and wouldn't be fixed until at least Monday. So it was decided to go ahead with the MRI of his spine.

We were called down a little before noon and expected to only be a couple hours. Well it was practically impossible to get him under sedation. It took 3 times what it would take a grown man and over 2 hours to even get him lying on the bed. Then he woke up twice during the procedure. he is doing okay now, but is very out of it. He is on oxygen to make sure he is breathing okay.

I am not sure what we are doing about his abdominal pain yet. The only other thing was we saw hematology and they want to come back tomorrow to discuss some more things.

I think that is it. Thanks for keeping Buggy in your prayers.
We need some prayers this morning! The team was able to get the procedures from November all lined up today, HOWEVER, the surgery attending has not come by so the button change is not set up. Which of course is the most important part.

So 2 very specific prayers...

1. That surgery can get this together.
2. That we can get our hands on the right size tube.

Thank you for all your kind words and prayers. it is always nice to see the support we receive.

Wednesday, September 16, 2009

I am going to attempt to update while I have a minute!

It has been a crazy 24 hours! Let me back up to Monday night.... Monday evening I got a call back from the GI nurse. We discussed the pain Alex was having around his J-tube and what needed to be done. She really felt that it sounded like surgery needed to see him. Tuesday morning I called the surgery nurse. Alex had a really rough morning. He was whining and crying and hurting and just not happy. At 10:15 I hadn't heard back from surgery and called Dr. Koenig. She made the decision that he really needed to be evaluated and the best way to do that was inpatient. So we quickly packed up to get on the road and down here before 5:00 for a direct admission.

I am amazed at how quickly things have been done this morning. I am so thankful to Dr. Koenig and our pediatric team for being so on the ball and moving things along. At this point the consensus is that the tube may be rubbing inside and causing irritation. The plan is to replace his tube tomorrow with one that is a better fit. Amazingly, they also think they can get done all the procedures that were supposed to be done under anesthesia in November! That would truly be a miracle.

They have also consulted hematology and GI to come see us. This will keep us from having to worry about our scheduled appt next week. They are running some labs and have a few more things they want to look at.

Overall, this should be a pretty quick trip!

Alex was so happy to see Dr. koenig and Keesha this morning. He smothered them with kisses and hugs and chatted their ears off. He has also enjoyed seeing all his girls!

I think that is all for right now. i will update as I know more!

Tuesday, September 15, 2009

I will update more tommorrow, but please keep Alex in your prayers. We are back in the hospital in Houston. We think the tube is infected, but we are waiting onlabs to decide the next step.

Monday, September 14, 2009

What a crummy few days...It has been raining here since Thursday. I am so sick of rain!!!!

We had a very quiet weekend. We hardly left the house. We basically just lounged around and were lazybones as Alex would say! We didn't even make it to church yesterday because Buggy didn't wake up until 9:15!

Over the weekend Alex started having some trouble with his J-tube. It really started last week with him complaining of it being sore. Typically this means that his skin is irritated and we can "fix" the problem with some topical medications. It didn't look bad but we tried that anyway. Well over the weekend it got significant​ly worse. He is doubling over in pain 4-5 times a day and asking to go lie down. Then it gets better and he is back to playing normally. We are really not sure what is going on. I have two thoughts...​one is he is brewing anbother infection around his tube which can be painful. The second is that his tube is rubbing inside his intestine causing an ulcer. We had this happen with Alex's first g-tube and it kind of reminds me of that. But these are just guesses! i am waiting to hear from GI about what to do. I am kind of at a loss. There is nothing to "see". So I don't know how we are going to determine what the problem is. But I guess that is the doctors problem not mine!

Labs look pretty good. His urine is still showing some dehydration​, but overall labs look better then last week. On the bright side, his liver numbers are down a little so that is encouraging.​

Please continue to keep Weatherly and her family in your prayers as they cope with the loss of her mother.

I will update as I know more.

Friday, September 11, 2009

I ask for special prayers today...

My best friend's mother has been called home to Heaven. Please pray for Weatherly and her family during this hard time. I am heartbroken that I can't get to NC to be there for the services. Weatherly and her whole family have been like a second family to me. I lived with them for several summers during college and Weatherly's Mom even hosted my wedding shower.
Weath, Stephanie, Drew- I love you guys like my own siblings. Please let me know if there is anything I can do. You are in my heart and my prayers.

Thursday, September 10, 2009


We replaced large amounts of fluids both Tuesday and Wednesday night and my sweet baby is back! And I got a call from the GI nurse and dietician this morning and we are going to start giving him more fluids on a regular basis. I really feel this is in Alex's best interest. I am so thankful the doctors and nurses are doing their best to care for Alex and are working diligently to tweak our "system" to meet his needs.


Tuesday, September 8, 2009

Quick Update.... Alex is EXTREMELY cranky. It is obvious he does not feel good. His labs are not great. He is dehydrated. We are going to replace extra fluids today. I am so hopeful that this will help him feel better.
I have spoken to Dr. Koenig, as well as the GI nurse and Dietician. Everyone is trying to decide whether we need to change anything.
Pl​ease pray for Buggy to feel better and for Mommy's patience.

PS- My best friend's mother is in the ICU and critical. Please pray for them as they struggle through this time.

Monday, September 7, 2009

Thank goodness the week slowed down a little after my last update! Bug and I desparately needed a reprieve. Wednesday I went to the MOMS club meeting. It has been over a year since I have been able to make one of these meetings. It was so nice to catch up with old friends.

Thu​rsday our beloved OT Liz came for her twice weekly session. I can already see the strides Alex is making with her. I am so thankful for her kind, patient way of working with Buggy. He truly loves her.

Friday and Saturday we just lazed around the house. Sunday was more of the same other then church. I have a cute story from church. They were short on Sunday school teachers this week because of Labor Day. So they were going to watch a movie. About half way through the service, I sent Bruce to check and make sure they didn't have popcorn out. Which Buggy is severly allergic to. (Thank you Kristin for always looking out for Alex) So Bruce comes back shaking his head. I whispered to find out what the problem was. His answer...Bu​ggy was sitting with a "big girl" and kissing her non-stop! I had to chuckle! That is my ladies man. I quickly figured out that it must be Brooke, his favorite "helper" who took him under her wing a few years ago.

Medical​ly we continue to due pretty well. There are a few concerns but mild in the grand scheme of things! One is that Alex has been extremely pale for a few weeks. Like think ghost white! In the past this has always signaled the need for a transfusion. However, his blood counts have looked okay so we have no reason behind his poor coloring. The second is his liver numbers continue to not be great. I think this is something I am just going to have to adjust to. I believe this is probably his new "norm". The last is something that I am waiting to here back from the doctors on. When Alex first started having his clotting issues, GI assumed his vitamin k was deficient because Vitmain K is needed for your coagulation factors (to make your blood clot) and is produced in the liver. With his liver not doing well it would make sense that he didn't have enough vitamin K thus causing bleeding issues. They gave him an infusion in the hospital, but when his clotting numbers didn't get better they through out the vitamin k theory and called in hematology. He was given plasma to replace the factors he was deficient in and haven't had clotting issues again. However, we added a vitamin K level to his monthly lab draw. In July, his level was 1112 (this was shortly after the infusion). In August, it was 535. This month came back at 271 and we are starting to see some bruising again. So I am thinking that Vitamin K deficiency could really be the problem. This would be both good and bad. The good is that we can treat it and keep the bleeding issues under control. The bad is that it is an infusion that has to be given in the hospital due to some serious side effects if it isn't given correctly. Anyway, I will keep you updated as I know more about this issue.
The last medical issue is one that seems we have dealt with Alex's whole life. He is once again losing weight instead of gaining. Alex was 35 lbs when he came off of TPN in April. As of yesterday he was 31.8 lbs. We are not panicked as he still is playing and acting okay. It was a known fact that when he came off TPN he would go back to being slightly malnourishe​d. He just cannot absorb formula as well. However, I am not sure at what point we will need to intervene. Please pray for his weight to stabilize.

I think that is all! Phew!!! Labs are tomorrow so I will update after I have the results. Hope everyone has a wonderful Labor Day!

Tuesday, September 1, 2009

What a crazy few days we have had! This is the busiest we have been in a long time!

Saturd​ay Morning we woke to gorgeous weather! We surprised Alex by telling him we were going to the zoo. Going to the zoo is one of Alex's very favorite things to do. He loves animals wholehearte​dly and has since before he could wal and talk. The zebras (Alex's favorite) greetes us in in a perfect viewing area. The elephants treated us to a swim in his watering hole. And Alex got to "pet" a horseshoe crab, a sea star, a sea urchin and various other sealife and shells. So all in all a wonderful morning.

Sun​day we were off to church. As Bruce can atest, Sunday's are always emotional for me. Something about being in church feeling God's presence and singing the praise songs always moves me to tears. It is the one time during the week that I slow down enough to allow the reality of our world and our crazy life to creep into my thought. My tears are not always tears of sadness. Sometimes they are tears of relief that God is walking side by side through this journey with me and has me and Alex firmly in his grasp. Such was the case this Sunday as we stood singi​ng one of my favorite songs. Oh No you never let go. Through the calm and through the storm. Oh no you never let go, Lord you never let go of me. What an awesome reminder that we will be okay no matter where life leads us. Church was also awesome this Sunday for two more reasons. One, i think I saw every one of the girls who have been so supportive over the last who years. As I hugged one after another of them, I was reminded how lucky we are to be involved in such a caring family. The second was surprising to me... As I dropped Alex off this week, it was with some trepidation! I walked up to Alex's classroom to realize that I had never seen either of his teachers before. That is enough to cause me to panic for a moment, although at this point Alex could probably teach some doctors a thing or two. So as I quickly handed him off, I let them know that if they had snack, Alex wouldn't eat. Alex quickly piped up, "but I can smell". You should see the looks I get sometimes!!! So it was to my delight when I arrived an hour later to find Alex grinning ear to ear practically jumping out of his skin to tell me everything he had made and done. The nice older man who had been his teacher for the day looked at me and said, "How sweet is he?" Of course my response was that he is pretty stinkin' sweet. So when I asked if he had been okay, I got one word in return. "Perfect". Music to a Mother's ears! So all in all a wonderful Morning at church.

We quickly came home to get in a nap before heading off to Daddy's soccer game. It has been a long time since we have made it to a game. When Alex was younger we were at EVERY game. The "guys" have literally watched Alex grow up since he was 6 weeks old. Several of them are "uncles". You see Bruce has played with most of the same guys for the entire five years we have been in Texas. Alex was buzzing all day to see Uncle Rob and we were both excited to see our friends Abby and Mitchell. Daddy's team one, Alex and Mitchell played and I got to chat with Abby. So all in all a success!

Yes​terday, didn't slow down any either! We started with labs (which I'll get to in a minute) , shot, needle change day, and a ton of fun. Monday's are really hard because Alex has to get his procrit shot. His procrit helps his body produce red blood cells and is the reason we haven't needed a blood transfusion in 4 glorious months! However, it is extremely painful. Alex doesn't care one bit about the needle. It is the medicine. it is a medication that burns as it goes in and the burning lasts for several minutes. On top of that we also change Alex's Port needle on Mondays. Alex calls Monday torture days! We have discussed it with Alex and rather then split it up he would rather get all the unpleasantn​ess done in one day. He does great with his port (usually doesn't even cry) but who would like to have a needle stuck in there chest! We always have to pray beforehand that Mommy gets it on the first try with Thankfully these days is pretty much always! So after all the torure...we had school. Alex and I got started and about halfway through he said, "Mommy, I am LOVING school today". I said, "Bug, i thought you loved school everday?" His response...."​But I REALLY love it today!" So I think it is safe to say school is still a hit.
After school we quickly lied down for nap knowing I would have to wake Bug up for teh second day in a row. Something I try not to do! (It really does cramp your style when your five year old sleeps 4-5 hours every sfternoon. Not that I would give it up!) We quickly headed off to playgroup even if we were 45 minutes late (Sorry girls!). As always the kids had a blast and the Moms had some much needed chat time. I really think there are days we like it more then the kids. Just don't tell them that!
At 5:15 Bruce picked us up for a special treat! Somehow in the craziness of the last few weeks I never told ANYONE that we had tickets to see the Texas Rangers (MLB) las night! So we were off to Alex's first baseball game. He was really excited as we pulled up to the stadium and marched inside to our seats. His eyes were dancing around as he took in the sights and sounds of the stadium. Br​uce and I had to give each other then eye above his head and try not to chuckle as he quickly exclaimed, " Oooh cotton candy. I have got to have some of that". Bruc​e was looking at me like he was crazy, so my hasty reply was that it was his first baseball game. So like any other kid at their first game Alex patiently (OK not really) waited fort he Cotton Candy man to make his way to our section. Who cares if you can only smell it right! Sometimes it hits me how "normal" Alex is in the midst of his crazy life! Alex was bored in parts as can happen at a baseball game, but loved dancing and showing "his moves" during the inning breaks. My favorite part was when the Rangers got on a roll in the bottom of the fifth inning. The stadium came to light and Alex was standing and cheering and then after a homer fireworks went off and his face lit up! We left shortly after as Alex had been asking to go for a little while. So as we're walking out of teh stadium he kept saying, "how come we have to go? When can we come back"? Thank you so much to everyone at the Starlight Organizatio​n for the tickets. It really was a fun night!

So how's that for a crazy few days in the Beckwith household??​??

On to the medical front... Alex's labs were not as good this week as they have been in previous weeks. His liver continues to show stress. And the chronic dehydration showed up in his kidney tests this week. As of right now, the plan remains the same until I hear differently from Alex's GI.

The rest of the week should be significant​ly quieter! Thank goodness. We ask that you continue to pray for Alex's health, for Brucey to find a job and for Bruce's back. Bruce pulled a back muscle (and shouldn't have played soccer) and is considerabl​y more pain then he was in last week.