Alex and Maddy

Alex and Maddy

Tuesday, June 30, 2009

Today has been a hard day for both Alex and I emotionally. After all the surgeries of the last year, Alex is petrified of being put to sleep. I was so sad for him as I held him in my arms crying for hours with fear. I was also coping with the fear of bleeding after the procedure. I held it together pretty well until Dr. Koenig walked into pre-op. Seeing her and getting hug was enough to start my tears. I was okay once I held Alex in the OR and said my goodbyes.
The biopsy did not take too long. However, the anestheolog​ist came out and let me know that Alex had had a seizure when they were putting him all the way out. They videotaped it and showed it to Dr. Koenig so she is aware. He was totally fine by the time he got to recovery.
We are having our usual post anesthesia rash and temperature. We are also watching closely to monitor his bleeding and clotting. He had some blood coming out of his jtube, but it wasn't a lot so we are running some labs and will see what that shows. If his blood counts have dropped, we will transfuse more plasma and red blood cells.
If anything changes, I will post again tonight otherwise I will post tomorrow.
Th​ank you for all your prayers today.

Monday, June 29, 2009

Tomorrow is the day! It will be a long day. We have to run some important Hematology labs at 7. We will start his plasma transfusion at 8 and his biopsy is scheduled for 1. After the biopsy he has to lie still for several hours.

Please pray for Alex's blood to clot and for a safe and uneventful procedure.

Sunday, June 28, 2009

Not much to report from a medical standpoint. We are just waiting for all the doctors to get together tomorrow and make decisions about our plan of care. It has been a long weekend with not much accomplishe​d.

Alex and I had a wonderful surprise today...Our good friends Kelly, Walker, Wyatt and Bob came by to see us. They were in the Houston area visiting family and decided to come spend a few hours with us. Thank you guys so much. It was such a pick me up. And lunch was DELICIOUS!!!! Alex had a ball playing with Walker. When they left, he said, "I'm so gald Walker came. I had so much fun. Except for the leaving part".

Hopefully, we will be back home and with our frends in a few days.

Saturday, June 27, 2009

Thank you for the prayers and support you continue to surround us with!

Weekends are always a little crazy, because the regular doctors are off and its all new people. HOWEVER...I got lucky this weekend and got someone really proactive. She kind of helped sort things out which is a true blessing. So we are staying through the weekend. We are still not sure about the biopsy. We are waiting for the hematology results to have a definite go ahead. But we are moving ahead as if we are going to have the biopsy on Monday. We have discussed what needs to occur tomorrow as far as a plasma transfusion if we are having the biopsy.

We also decided that keeping us here till at least Monday gives Dr. Koenig, GI and Hematology all a chance to talk and make sure they are on the same page and that all our bases are covered.

The other thing we are working on is that his antibiotic level in his blood was extremely high this morning. So we are working on hid=s dose and will be rechecking. We have never had this problem before so once again we are thinking this could be related to his liver function.

Al​ex continues to feel great. He has run me (and the nurses) ragged! Thank goodness for naptime!!!


Friday, June 26, 2009

This has probably been the most frustrating hospital stay I have ever experienced! Without one doctor "running the show", no one can come to a decision about anything. We have been round and round in circles about what to do. Me being the ultimate planner, I am beyond frustrated.​

I don't even know what to tell you is going to happen, so I am just going to explain the predicament. Alex's blood is not clotting correctly. They think this is related to his liver issues. It also explains the bruising I have been worried about over the past few weeks. Yesterday when we realized he wasn't clotting correctly we gave the vitamin K infusion. Unfortunate​ly, this did not improve his clotting time. So the doctors made the decisionto call in Hematology. We have seen hematology sporadicall​y over the last year, but they are not a group of doctors we know well. Hematology is running a bunch of labs trying to get a feel for what exactly is going on. They think that it is most likely related to the liver. They have cautioned me to keep a close eye on Alex and make sure he does not start having bloody noses or bleeding around his tubes. If he starts bleeding we will need to transfuse plasma. Hematology has given the okay to go ahead with the liver biopsy provided we transfuse first. Now GI is getting cold feet about doing the biopsy in light of the bleeding issue. I am frustrated because the liver is most likely the cause of the bleeding issues. So no definite decision has been made yet.

I will continue to update as we know more.

PS- Alex's infection around his Jtube is clearing on the antibiotics and has taken a back seat at ths point.

Thursday, June 25, 2009

Change of plans...

I should know better then to utter the "H" word until I have discharge papers in my hand. So needless to say we are not coming home. There were a few more tests that needed to be run and his med schedule needed to be adjusted. so the soonest we were going to get out of here was tomorrow. It seemed silly to come home for a couple days and then turn right around. They were able to move the biopsy up to either Monday or Tuesday.
The only other new development is that after weeks of me complaining about how badly Alex is bruising, we know why.
Alex is not clotting correctly. They believe he is deficient in Vitamin K and that most likely it is related to his liver. He is getting an infusion of vitamin K now and we will check labs again later.

Wednesday, June 24, 2009

We have a plan!!!!! And we are heading home tomorrow!!!!!​

Everyone here is in agreement that if the tube is working and Alex is tolerating feeds we are going to leave well enough alone! We all feel the bottom of the tube and know it is a change, but for now the tube is functioning correctly.

W​e have started antibiotics for the cellulitis around the tube. We will continue those at home.

Now for the bad news...Alex and I will be back here a week from today. Although Alex's autoimmune hepatitis labs came back negative, his liver numbers continue to rise. The GI team is concerned and feel that we need to know what is going on. The next step is a liver biopsy. It is not a major procedure. It is done under general anesthesia and a needle biopsy guided by ultrasound. It was decided to hold off until next week because Alex really struggles metabolical​ly after anesthesia and everyone would prefer for Dr. Koenig to be here. It should be another short stay and hopefully will provide us with a lot of information.​

We need to get some more labs as well as a liver ultrasound done before we can leave tomorrow.

Alex has been hysterical today! He loves "his girls" (his nurses and child life girls). He has run the halls, played, and worked. He has enjoyed every minute here because he has felt so good! The only heard part has been when the doctors have needed to exam the area surrounding the tube. I am so thankful that with the amount of time we spend here that he is so comfortable and free of fear. It is truly a blessing. I am so thankful to the staff here for embracing Alex and making him feel so loved and safe in what could be a scary place.

After a VERY long night, we are finally settled in! We got to the ER around 8:00. Normally we are shuffled through pretty quickly, but because Dr. Koenig is out of town that did not happen last night. WE never got to a room until 2 Am and the last doctor didn't leave our room until 4. So I am exhausted! Luckily, Alex fell sound asleep at 9 in the ER and never woke up till 8:30 this morning.

This is what we know so far...Alex has an ileus (his intestines are distended and full of air). The initial thought was that we needed to stop feeds. After reassessing we have decided to leave feeds running unless surgery tells us we have to stop them. Our fear is that if we stop feeds, we may not get them going again. There is alos an infection at the tube site. It may be cellulitis it may be an abcess. We are doing an ultrasound to see and will be starting antibiotics. We are still waiting on surgery to come assess the position of the tube.

I will keep updating as we know more.

Tuesday, June 23, 2009

Once again we ask for your prayers...

L​ast night Alex began complaining of pain around his Jtube sight. After a quick examination it became clear that something is wrong with Alex's Jtube. We have been in contact with the doctors both here and in Houston and everyone agrees that we need to head to Houston. It is believed that Alex's tube is out of place. He is fine unless we attempt to touch it. In waves it is pretty painful. We are not sure at this point if Alex will need surgery to corrrect the problem.
Please pray for safe travels and an easy resolution.​

Monday, June 22, 2009

Today is the day! I know for most families VBS is no big deal. For us it is momentous and a leap of faith. I have pretty much never left Alex in anyone's care for 3 hours. Over the last 5 years our church has been really special to us. They have taken us in and made us part of the family. This means that they have gone above and beyond to include Alex and ensure his safety. His first year of Sunday school when he was three, they stopped having snack in Alex's class so Alex wouldn't feel left out! Last year, they provided meals and gift cards on one of our breaks from the hospital. They sent emails and gifts when we were in the hospital. They have prayed for us. So when I approached them about VBS, they stood welcoming us with open arms. Once again they have been more then accomodatin​g going so far as to remove popcorn from the snack schedule so Alex would be safe.
So as we head out the door this morning, it is with hope for a fun adn safe week and gratitude to be part of a loving church with so many awesome people who care about us.

Please pray for Alex to stay healthy and for his energy to hold through the next few days so he can enjoy this time with his friends.

On a health update...I know I have been pretty vague about what is going on. I needed a few days to process. Alex's liver numbers have been trending up for about 6 weeks. They have now reached a level where the GI team is concerned. They fear he may have autoimmune hepatitis. Basically, Alex's immune system attacking his liver and causing inflammatio​n. Obviously, not a good thing. The treatments are not great either (prednisone or a med that has pancreatiti​s as one of the side effects). We have run 4 labs. The first was to rule out viral hepatitis. Not surprisingl​y that was negative. The second was an ANA. A marker for autoimmune diseases. It came back negative and I got hopeful...t​hat is until I read the fine print where it clearly stated that a negative does not rule out autoimmune hepatitis. And so we wait! The final two labs that will give a clearer picture can take between 4 days and 4 weeks. UGGGG! I am so not patient. I will keep you updated as we learn more.


Friday, June 19, 2009

Just a quick update... Dr. Koenig was not concerned about Alex's labs. However, GI is concerned. It has sparked a whole slew of new labs being run. Please pray with us for good results. We will not know anything for about a week.


Wednesday, June 17, 2009

Everyone is gone! It is always bittersweet when everyone has left. We are glad to have a quiet, clean, organized house, but we miss the family. Alex decided he wants everyone to live with us. I'm not sure Brucey would agree!

Satur​day we spent another day with Ann and Oscar (my Aunt and Uncle). We always have such a good time. They are so gracious about letting us come visit and use their pool. Alex loves them and is so comfortable at their house.

Sunda​y was Dad's birthday and we had a nice quiet day after dropping Mimi and PopPop off at the airport.

Mon​day Grandpa and I decided to take Alex to the Dllas World Aquarium. It is a really cool place that is set up like a rainforest. It was a nice way to spend our last day together.

Ye​sterday we dropped Grandpa off and said our tearful goodbyes. We had a quiet relaxed night and early to bed.

Today I had coffee by myself for the first time in over 2 weeks! It was a day to clean and catch up on household stuff. I also ran Alex's labs. This is the first time we have run labs since getting back from Houston at the end of May. Some stuff is off, but I am hoping it isn't a big deal. Say a prayer Dr. Koenig is not too concerned.

T​he only other news to report is that next week Alex will be going to Vacation Bible School! We are very excited. I am going to volunteer so I am there if we have any problems. My only real concern is the heat. It has been brutally hot. Alex can not stand to be outside at all right now! I am hoping that his cooling vest will do the trick and he will enjoy his time.


Friday, June 12, 2009

This has been the craziest few days!!!!!

Tu​esday Jen and Skye left. We were sad to see them go. Wednesday Mom and I took Alex to playgroup and Dad and Brucey went to play golf. PopPop stayed home to have a quiet morning. When we got back from playgroup PopPop was doubled over in pain. We wound up taking him to the ER. He has kidney stones and is doing better.

Wednesday night we started having really severe​under, lightening, 70 mph winds, and tornados. Mimi, PopPop and Grandpa sure got to see a good Texas storm. Thursday we took Mimi and PopPop to the airport but the storms were still raging. Their flight kept getting delayed and PopPop was in pain so they wound up getting their flight changed to Sunday.

But needless to say I was back and forth to the airport. Today we went to the mall to walk around. And then we had a quiet afternoon.

I will update again in a few days.

Monday, June 8, 2009

Happy Birthday, Alex!!!!!

To my Buggy-Boo:
Y​ou are my gift from God. Five years ago today when you were born was the best day of my life. Every precious day since then has been one more blessing. You have brought Mommy and Daddy so much happiness. You are the best boy. You are smart, brave, happy and most of all kind. I am so proud of the little man you have become. Every day you teach us how to live with courage and perseveranc​e. Thank you for being Mommy's angel.
I love you, Buggy.

We have had a busy, but fun few days. Aunt Jenn Jenn and Skye Skye got here on Friday. We had a fun afternoon playing. Skye is like a one man wrecking crew! I don't think I have ever seen my playroom look like that!!!! Saturday we went to Aunt Ann and Uncle Oscar's. We had so much fun. We swam and barbequed and just enjoyed each others company. Yesterday, Mimi and PopPop got here in the morning and then we had Alex's birthday party. It was awesome. We had it at a gymnastics place. The girl running the party was incredible. The kids had a blast. Alex loves spending time with his friends. By last night he was wiped out.

Today we are off to the waterpark and then having ANOTHER party tonight to celebrate Alex's and Grandpa's birthday with the family.

Than​ks for checking in!

Thursday, June 4, 2009

Sorry for the lack of updates! We have spent all week trying to assess the situation. We have come to the conclusion that the first blood culture was contaminate​d. This is WONDERFUL news! It means Alex does not have bacteria growing in his bloodstream. Dr. Koenig made the decision not to even put him on precautiona​ry antibiotics bcause he was symptom free.

On to fun stuff.... Saturday, Sunday and Monday were not very fun! Saturday we spent over 6 hours cleaning out our garage. Anyone who knows me, knows that I am organized to a fault so I drove Bruce crazy. But we got rid of a lot of stuff so it was well worth the time. Sunday was a quiet day. Monday was house cleaning day. Cleaning is not my favorite task, but it is always a good feeling when its done.

Tuesda​y we picked Grandpa up from the airport. I have really enjoyed watching Alex's relationshi​p with my Dad grow over the last year. Grandpa used to only get a passing glance and now he is so excited to have him here. As soon as Dad got off the plane, Alex exclaimed," Grandpa I'm so happy your here. Can you stay 30 months?" How cute is that!

Wednes​day was playgroup day. Wednesday's are easily our favorite day of the week. I get a much needed break from my precious Buggy and some much needed girl talk and he gets two hours of playtime with his very best friends! It is definitely a win-win situation.

Today is another quiet day. Tomorrow we pick up Aunt JennJenn and Skye Skye. Let the games begin!