Tons of Pics

I have SO many pics!!!! Here it goes...ENJOY!!!!!!

Alex wanted to show Mimi how he roller skates! (early Dec)

Right before he got sick. We went on a train ride and had a ball with Grandpa!

Me and my Bug!

Alex and the conductor

He loves life no matter what we are doing!

Alex loves his Grandpa!

Christmas Morning

Even though he was weak, he enjoyed Christmas

The day took its toll

He loved his gifts

My Spy Guy

Reading his new Cub Scout Book from Grandma and Grandpa

Mimi's Boy

Bug's First Rodeo

The Pinewood Derby

Pack 422

My Sweet Boy

Playing games before trophy presentations

More Games

Overall Best in Show- 3rd Place

Proud Boy

Our last few days with Mimi were extra fun. Thursday we went to paint pottery. We made PopPop a surprise and I made a cross with Bug's handprint. Buggy painted a sign for his room and a airplane.

We had decided to take Alex to see his first rodeo Friday night as a surprise. We got him dressed in his cowboy boots and hat and headed out. He loved the rodeo, but didn't quite make it through the whole thing as he was exhausted.

Saturday was the Cub Scout Pinewood Derby. It is an event the cub scouts look forward to all year. Once we knew we would be home from the hospital, Bruce set out making a car for Alex to race. We have a lot to learn! Needless to say, we didn't win any races or trophies for speed! But Alex's zebra striped car did win a trophy for 3rd place best in show. But the best part of the day was the presentation of Alex's other trophy. Alex won the first ever pack 422 trophy for the "Spirit Award" acknowledging his hard work, good attitude and joy of life. Mom and I both teared up as he was presented this trophy. It truly is amazing the way he chooses to live his life with a smile on his face. We could all learn so much. He carries a back pack 24 hours a day that weighs 1/3 of his body weight. He gets 30 doses of medication on a good day, more when he isn't well. He receives a shot every day and is stuck with a needle in his chest every week. And yet he will be the first to tell you that his life is awesome. I wish I had half the courage and strength that he has.

Sunday was a sad day as we shipped Mimi back to NC. We wanted to keep her, but we took her to the airport anyway. Through teary eyes, Alex told me he was going to look up in the clouds every day and hope God brought his Mimi back to him. He is Mimi's boy that is for sure!

Yesterday and Today we have been back to "normal". We are doing school and therapy and all our usual activities. Alex's labs look really good and he is feeling pretty good. We are up to 30 cc/hr on feeds and he is tolerating pretty well. A little nausea and pain, but nothing our tough guy can't handle.

Thanks for walking this journey with us!

Ali

Home at last!

We finally made it home on Monday evening. We are so thankful to be back in our own house and settling into our routine. Alex and I are both exhausted. We have a month of sleep to catch up on. No matter how wonderful the nurses are, you NEVER get a full nights sleep in the hospital. Between beeping pumps, nurses coming in, techs doing vital signs and doctors it is just impossible! I always forget how quiet and dark a room can be! It really does make me appreciate the simple joys of everyday home life.
Healthwise Alex is doing well. He is back to his crazy self. He is so vibrant and full of life it puts a smile on everyone's face. I am aware every moment of how close we came to losing him a month ago and it makes me cherish the moments we share. He is so sweet and loving. This morning we were cuddling in bed and he said, "Mom tell me again why did God give me to you?" I said, "Because you are the PERFECT son for me." His quick reply..."And you are the perfect Mom for me". Those are the kinds of things he tells me every day. If anyone ever had to count how many times a day we tell each other we love each other or how many kisses we share a day, they would be in big trouble!
We have had a nice, quiet week enjoying our time with Mimi. We have been quietly hanging around the house. Mom has also helped us to finish decorating Buggy's room. As many of you know, Bug loves zebras. Mimi brought a calender of zebras for Bug. We pulled out the pictures and framed them. We also got a zebra stripe blanket and bean bag. Bruce is working on painting zebra stripes on letters to spell Buggy above his bed. Against the electric blue paint of his room, it looks awesome. We have a special surprise planned for Bug tomorrow night and then Saturday we have a cub Scout event before we have to let Mimi go back to NC. If Pop-Pop wouldn't throw a fit, we would keep Mimi here forever.
I want to thank everyone for the tremendous outpouring of love and support we have received over the last six weeks. I am completely humbled by the number of gifts and prayers we have received. We are truly blessed to be surrounded by such incredible people.
I hope to have some pictures to upload tomorrow.
Ali

Not Home Yet....

But Soon!



This is a picture of Alex on Thursday night. His eyes were red and swollen and he just didn't feel well. There was some concern at that point that he may have a virus. Lucky for us it was just a false alarm! Alex woke up yesterday feeling and looking much better. The decision was made that everyone felt better to watch Alex a few more days just to be safe. So our plan is to come home Monday or Tuesday depending on if our home health is able to get things together on Monday. We also need to coordinate with all the doctors to decide when we need to follow-up. I was able to sit with Dr. Pacheco yesterday and discuss some exciting possibilities for treatment in the future.

Other then that it was a pretty easy day. We have some of the most incredible doctors and nurses. One of Alex's favorite doctors showed up yesterday with a marshmallow blaster and a bag of marshmallows. Both she and Alex got in disguise found a screen shield and managed to ambush Alex's pediatrician and team. It made for fun and the fun continued. What an increduble team we have that recognize the need to allow Buggy to be a "normal" little boy even when we are here.


Thank you for the continued thoughts and prayers. We cannot wait to get home and back to our routine.

Ali

Home....Maybe?

Thank you for all the prayers yesterday. Buggy slept until 4:30 this morning. He laid quietly until 5, when I turned on a movie for him. The morning started out okay. I tried to work on some school, but I got scolded from Dr. Koenig, who gave him a 2 day note excusing him from school! On rounds this morning our pediatric team decided to get the ball rollling on discharge with the hopes of having us out over the weekend. Unfortunately as of now Buggy is not cooperating. While I was at the airport picking up Mimi, I got a call from the nurse letting me know that Alex was running a temp. It has stayed between 100.3 and 100.7 even with Alex lying on some ice packs. For right now we are just watching with the hope it is just from the anesthesia. He is not feeling well with a headache and feeling dizzy and really red, puffy eyes. If his temp goes over 101 we will investigate a cause otherwise we will just watch.

On the bright side we are happy to have Mimi here and we had some good laughs playing a new game called Would you rather? We hope Alex feels better tomorrow so he can enjoy his time with Mimi!

Ali

A Very, Long Day

These days are so long and draining. The emotional stress is just exhausting, so this will be short and sweet!

Alex was taken to Pre-Op around 9:00. Anesthesia was started and I left him around 10. He did great emotionally today. He stayed pretty calm and went to sleep relatively easily. The ENT was first. It was determined a few months ago that Alex had quite a bit of wax buildup in his ears. I don't think anyone expected what they found today. They compared the wax they found to that of an old man. It was rock hard, adhered to his ear canal and ear drum and very difficult to remove. The ENT was certain that his hearing has been effected. The plan is to followup in clinic in a few months and do a hearing test.

Next Dr. Tsao came in to place his new port. He had wanted to try and place the physical port in the same place on the left side of his chest while putting his line in the most common spot his subclavian vein. When his first port was placed they could not get the line to thread into this vein, but Dr. Tsao decided to try again. Unfortunately once again this vein cannot be used. Because of this he has recommended we do an ultrasound at some point to try and find out why this vein is blocked. He used the same vein on the right side and was able to place the port with no additional problems. He finished right around noon.

At 12:15 Buggy was transferrred to the MRI suite to start the SSEP. This test messures brain waves while they send shocks through the limbs to see if the brain waves slow at any point. A slowing would indicate the spinal cord being compressed at a certain point. This test is supposed to take about an hour and a half. For some reason it took almost double that time. At 3:00 they finally started the MRI of the entire spine. It went as planned as I was called back to recovery at 5:15.

Then the fun started....As soon as I got back to PACU, the nurse asked if I had a needle to access his port. I asked why as Dr. Tsao told me he had left it accessed bc it is painful to access so soon after surgery. She informed me that MRI had insisted that the port be deaccessed to do the MRI bc the needle is metal. We have done numerous MRI's with his port accessed, but this tech would not allow it to happen even though several people fought to leave the port accessed. I quickly sent Missy up to the room to get a needle and other supplies so I could access him before he woke all the way up. By this time I was in tears because I didn't want him to be in pain as I stuck a needle into a brand new surgical site. Luckily, I was able to get him accessed before he was all the way awake. Since the port wasn't accessed the next question became how his TPN was running. When Alex is on TPN you cannot just stop it or he becomes dangerously hypoglycemic. TPN can only be run through a central line because it can damage peripheral veins (which are smaller). Sure enough his TPN had been running through a peripheral IV for several hours. About the time I was teying to come up with a solution a nurse from our unit came down and was upset by the situation. It was quickly decided we needed to throw the TPN out and run D10 through his newly accessed port until a new bag of TPN could be hung when he got upstairs. Alex breifly opened his eyes and then nodded back off to sleep. We hardle spent any time in recovery before they sent us back to our room. When we arrived, our nurse became upset because he was satting a little low and was not arousable. She made the decison to start him on oxygen. Since then he has had oxygen saturations of 100% and has been sleeping comfortably. He has woken up briefly a few times and then just gone back to sleep.

He ran a temp the whole time in the OR/MRI suite so we are watching that. It is pretty typical of him, but we want to be sure it doesn't go too high. We will run labs in the morning to be sure everything looks okay. Otherwise, I am praying he stays asleep until morning!

Thank you for all the prayers today.
Ali

The Big Day

Tomorrow is the day that we have been planning for weeks. Alex will be under anesthesia most of the day. The plan is to go to the OR around 9:00. Dr. Tsao, our surgeon, will place a new port a cath in Alex's chest. Then the ENT will come in and clean out a ton of impacted wax in Alex's ears. From there he will be moved to the MRI suite to an MRI of his entire spine and an SSEP which will both test if there is any change in his syrinx (fluid in his spinal cord). The procedures will take a minimum of 6 hours, but more likely close to 8 hours. There was quite a bit of discussion about whether or not to do a liver biopsy. The decision was that we wouldn't gain any new information from the biopsy so we won't be doing that.

Alex has continued to do okay the last few days. He has had some stomach pain and leaking around his tube since starting the sugar water. He has continued to enjoy his time with his OT and child life. We have also picked up school again after almost a week off. Bruce came down briefly on Sunday and brought Alex's schoolwork and a few toys he wanted.

Mimi was supposed to fly in again today to be with us for the surgery and the following days. Unfortunately the snow storm on the east coast deferred those plans. The airports in NC cancelled all flights today and everything is sold out for tomorrow. So Mimi will come on Thursday. Alex and I cannot wait to see Mimi.

I will do my best to update throughout the day tomorrow.
Ali

Nothing New Part 2

There is really nothing to report. I just didn't want anyone to worry if I didn't update!!!! Alex is feeling good. We are playing all morning and napping all afternoon. The only area of concern at this point is his liver numbers which have been climbing over the last week. Our GI doctor comes on service tomorrwo so we will be happy to have his input.

Ali

Nothing New

I really don't have much to report. Alex had another busy morning of therapy and playtime. We also did quite a few art projects this morning. We capped off the morning with a visit from the therapy dogs. Alex has had some of these same dogs coming for the whole 3 years we have been coming to this hospital. It is always fun to visit with the dogs and their owners. Alex has napped over four hours each of the last two days.

Alex with his OT

Alex with Rio, one of his favorite therpy dogs


We were able to start a trickle (a tsp an hour) of water into Alex's Jtube last night and have continued it today. In the morning we will see what his labs look like, but he appears to be tolerating that little bit. We are happy for even these small steps as just 3 weeks ago this journey was about to begin and Alex was so very sick.

We continue to be blessed to be in a place that is filled with love. Alex is surrounded by people who love him and encourage him to be the little crazy boy they have watched grow over the last few years. He is hugged and talked to, played with and uplifted over and over again by this incredible staff. I cannot imagine being anywhere else where Alex would be able to thrive the way he has even with the amount of time we are in the hospital. I will forever be thankful to our "family" at Children's Memorial Hermann.

Ali

AAAAHHHHHHHHH!!!!!

Do you hear the screaming? That would be me yelling in protest! I just got word that they are not going to let us leave next weekend as we were told. All if Alex's main docotrs talked and feel like we need to make sure we have all the separate issues resolved or well on a path to being resolved before we leave. Because of this they are not ready for us to go home right after surgery. Dr. Koenig said at least another week beyond what we were thinking. I am tired of living out of a suitcase and wearing the same few outfits. I am ready to be home and back in my routine. BUT I love the fact that our doctors care enough about Alex to make sure he is well before we go.

Alex is doing well. He is loving his time with his OT. We are sad that he switches to adults next week. We also got to go up and visit the life flight helicopter this morning. The child life staff and volunteers have been incredible about playing with Alex and giving me a mental break. So we will continue marching one foot in front of the other. Medically, I really have no news from today.

The view of Houston from the helipad

Helicopter

Alex with life flight

Alex sitting in the helicopter

Thank you to all who have sent encouraging letters, notes, cards, etc.
Ali

Another Good Day

I don't know who had a better day, me or Alex. Alex's day was super busy and I got quite a break! Alex started the morning with OT once again. Alex really enjoys working with the OT here. They spent an hour together playing ball, doing legos, and coloring. He even gave Alex a homework assignment to complete by tomorrow. While Alex was in OT I got to spend girl time with my good friend Joy and her sister and daughter. They were in town from Dallas for an appt. After OT, Stacy came to do some more decorating of the room. They painted for a while. As they were cleaning up, a volunteer came in wanting to play with Alex. They headed off to the playroom and I did some laundry. Before they had even come back to the room, Dr. Koenig and Lakeesha joined the fun in the playroom. They were just leaving when Christine (the music therapist) came to do music. While they did music I got to go have lunch with Joy and Missy! Alex was laying down to finally take a nap when PT came in to stretch him and take him for a walk. They came back a little later to ask me if I wanted to help work on a 500 piece puzzle in the playroom. While I helped complete the puzzle, Alex played with one of his favorite volunteers. We did get in some quiet time this evening before ending the night with a puppet show. Bug is finally getting settled in.

Medically we are kind of in a holding pattern. Alex is doing well. We dropped one of the antibiotics today and are down to just two. We are just watching him for the next week. Assuming we have no more hiccups the plan is to go to surgery next Wednesday for a new port, an MRI of his spine, an SSEP and any tests that GI feels are necessary. Alex's ultrasound yesterday showed an enlarged liver. Today we discussed with GI his pancreas numbers and his liver enlargement. Our GI comes on service on Monday. At that time depending on his labs, we will determine if a closer look at either the liver or pancreas is necessary. The hope is that we can head home next weekend.

I am so thankful for the continued love and prayers we feel surrounding us.
Ali

A Good Day

Alex playing his ds

Alex getting an ultrasound

W e had a really good day today. Alex slept in till I woke him at 9 to give him his shot. We had just gotten going when we were surprised to see a theraist at our door. The team had consulted occupational and physical therapy to come in since we have been here so long and Alex receives these therapies at home. I got a good 45 min to myself while Alex worked with the therapist. Alex's labs weren't great this morning with both his pancreas and liver numbers going up over night. Because of this they ordered another ultrasound to look at his liver and ducts to see if they can find a reason his pancreatitis will not abate this time.

Alex walked for the first time today although a little unsteady on his feet! He played games. He spent time with his favorite child life specialist decorating his room and he had music. So a good, but busy day. Right at 7:00 he asked to go to sleep and has been sleeping soundly since.

Hopefully, tomorrow is a nother day filled with good news!

Ali

New Line

Short update tonight...

Alex had his femoral line pulled today and a PICC line placed. He did pretty well with the surgery. He had his favorite anesthesiologist and woke up happy. We are watching for any possible complications, but so far we have not seen any. The plan is to continue to run antibiotics and follow labs for the next ten days. LAte next week we should be able to get to the OR to place his permanent port and then head home. We will leave him on TPN and work on feeds when we get him home.

Ali

Going Nowhere Fast!

Well it sure doesn't look like we will be exiting the building anytime soon. We have received some good news and some bad news over he past few days. In very good news Alex's pancreatic enzymes are finally trending down and his fever broke late on Friday afternoon. Because of these two occurences, Alex has been feeling better and has even been out of the bed and sitting on the couch some the past two days.

The problem with the fever is that unfortunately it was the re-addition of the third antibiotic that broke the fever which means that most likely he is still infected. Talks have continued as to whether or not to pull the line. The fact remains that there is no good option. The line could be infected in which case it needs to come out. But if we pull out the line we could dislodge the clot which could be dangerous. So the talks continue. To make matters worse the clot has not come down in size at all and Alex is having pretty significant pain at the line site.

The plan for now is to make a decision on Monday about the replacement of the line. Infectious Deisease has also decided that we need to do 2 more weeks of antibiotics to be sure we clear this infection before we move on to our permanent port. So it looks as though we will be inpatient for a while longer.

As I mentioned yesterday, we were so lucky to have incredible friends come spend a few days with us. Here are some pictures of Alex and one of his best buddies, Walker celebrating New Years.

Ali