Here is this afternoon's update...Al​ex is seeming to do better each day, but we cannot kick this fever! His last temp was 102.7. We will not be allowed to come home until his fever is gone for a few days to be sure we are over the hump.

We repeated a urinalysis and while he is still spilling protein there was a little less. We continue to hope that the protein is strictly because he has been so sick. His Kidney blood work looks fine so we aren't overly concerned about this.

Hemato​logy came by. They are running a number of blood tests now and then will run more blood work before our next transfusion. They can't run some things now because it wouldn't be accurate because we were just transfused. After we get the blood work back they will determine whether we need to follow up with a bone marrow biopsy or not.

The only other change is that the pulmonologi​st has put Alex on medication for asthma. They are not sure if that is what is causing his oxygen saturation issue and coughing but it is a good bet. The two biggest risk factors for asthma are allergy issues and a mother with asthma so Alex has 2 strikes against him. Since his chest xray looks fine and he doesn't sound awful they don't have another explanation. I have asthma which only effects me when I am sick or exercising and we had already noted that he gets out of breath very quickly when exercising so this is a logical conclusion. Alex was a trooper as usual. Those who have been in a doctor or hospital setting with Alex know he is terrified of masks or anything on his face. His new medicine is an inhaler that he uses with a spacer that ends with a mask on his face. We knew he was going to have a hard time, but he did it!!! Now he just needs to get used to it because we are going to be doing this every day twice a day!

I believe that is all. Tomorrow will be quiet around here. Dr. Koenig is going to take the day off and just check Alex's labs from home.

I will let you know in the morning how our night goes.

Ali

We had our VERY FAVORITE nightime nurse last night. Alex slept from 5:00 yesterday until 7:30 this morning. I fell asleep around 9:00 and slept till 7:00. I still don't feel 100%, but mentally I feel much better.

As for Alex, he is still struggling. Our temp is still hanging in the 101- 102 range. He pancreas is still hanging in the 400's. We had to go up on his oxygen overnight. His oxygen sats dropped back to 93, which in a normal kid wouldn't be very worrisome, but Dr. Koenig does not like them that low.

Our two main areas of concern this morning. One he is spilling large amounts of protein in his urine. We are not sure if it is related to the flu or something mito related that is cropping up because he is sick. The biggest concern this morning is that his platelet count is extremely low. We have never seen this before. The fact that he is now transfusion dependent and he now has low platelets has Dr. Koenig calling in a hematologis​t to consult. One of the mitochondri​al syndromes she is considering affects your bone marrow and your pancreas. So she really wants that checked out.

I believe that is all for now. I will update later if anything changes.

I hope everyone has a sfae and Happy New Year!

Ali

We had a pretty decent day today. Alex's temperature has stayed between 101 and 102 all day. He was still pretty lethargic but his personality was back which was good to see. (Except when he was driving me crazy around 3:00 this afternoon).​
Dr. Koenig is still concerned about him. This is his sixth day with a fever. She doesn't like that even with the oxygen his sats are not close to 100. He is spilling protein in his urine and his pancreas numbers continue to go up instead of down. She feels like we will be here at least another 4-5 days.

He is coughing quite a bit so we are leaving him on his antibiotics for now and we did another chest xray this afternoon, but we don't have the results yet. We are still waiting on Dr. Pacheco to make the call on IVIG although Dr. Koenig would like it to be done.

I am feeling better then this morning. I just have a scratchy throat and am coughing a little. My hips hurt, but I don't feel as icky all over. Hopefully with a good night sleep I will feel better tomorrow.

I will update again in the morning.

Ali

The good, the bad, the ugly...

The good: Alex's temp is down to 100.6. Now we are praying it stays down. The oxygen is also helping keep his sats high enough.

The bad: I almost killed the nurse last night! Both yesterday and last night Alex's nurse were from a floor that typically deals with less sick kids. Dr. Koenig puts us in the IMU because the level of care is so much higher. Well that doesn't happen when they float nurses. So yesterday during the day we did okay except she questioned me about everything which just makes me annoyed. LAst night the girl was as sweet as could be, but she came in everytime and turned on the big overhead light and started talking to me and Alex. Anyone who has talked to me about night nurses in the hospital knows all I want is to be able to sleep so I was NOT happy.

The ugly: Alex has not had the energy/stre​ngth to even sit up in bed since Sunday afternoon. If he attempts to sit up (to take a sip of water) he shakes. At this point he is not even attempting anymore. He is talking a little more though since his temp came down.

Last thing...I am strating to fell really rundown/cra​ppy. I cannot afford to get sick. Please pray I do not get this nasty flu.

I will update after I see the doctors.

Ali

We are hanging in there. Alex's temp came down to 104. He was having a hard time keeping his O2 Saturations where Dr. Koenig would like them so she wants him on oxygen. The problem is that he will not let me anywhere near him with the nasal cannula. He refuses to put it on. For now we are making due with a tube blowing oxygen towards his face.

The plan is for us to stay until Alex is over the hump. We need him on the mend. He is way too sick to go home like this. Once he is better we will head home with plans to return the last week of January. When we come back Alex will go to surgery to have a J tube placed. This time they will place a separate tube directly into his intestines, so he will have 2 separate buttons. They will also perform a specialized test called an MRCP. It is similar to an MRI, but of the pancreas. Because of the length of the test he needs to be sedated. Dr. Koenig does not want him under anesthesia two times so we will do them together.

We are also running a number of genetic tests that could explain Alex's chronic pancreatiti​s. I am still awaiting word on whether or not we will do IVIG to try and boost his immune system right now.

Thanks for all the prayers.

Ali

Please say some extra prayers for Alex this morning. He has had a temp over 105 since last night and nothing is bringing it down. The poor baby is just miserable.

I'​ll let you know when I know something.

A​li

For those who didn't see it, I updated earlier today so make sure you read that first!

Dr. Koenig and Dr. Pacheco were just here. They are happy with how good Alex looks, but they want to keep a close eye on him. As far as the flu goes, we don't have much cjoice. There is a medication, but it has to be used in the first 48 hours and it is only oral which means it is loaded with stuff Alex is allergic too. Also, complicatin​g the problem is the fact that we have no J tube and everything just sits in Alex's stomach and doesn't move. So we aren't going to treat as of right now. They are discussing whether IVIG would be beneficial fo Alex. We don't want to use it unless it is really necessary, so we are weighing the pros and cons.

Alex's urinalysis didn't look very good so we need to repeat that and make sure his kidneys are working okay.

For the time being we are going to continue on antibiotics because there is a bacterial infection that can go along with the flu and they want to be cautious.

We are also going to continue watching his pancreas. Dr. Koenig has not decided whther we will place a J tube while we are here (once he is better) or wait on his pancreas.

So a lot of waiting and watching over the next few days. Alex was thrilled to see Dr. Koenig. He kept wanting to hug her. I will keep you posted.

As always we appreciate all the prayers and support from you our extended family.

Ali

We are in Houston! It is scary to be So comfortable in a hospital, but we have been here so much it really is not the least bit intimidatin​g to be here.As sad as it is it has become our home away from home over the last 5 months.

We got here yesterday right around noon and were in the ER for 4 hours. They wanted labs done before we could come to our room. Poor baby had to be stuck, but luckily we got everything we needed from one stick. It took Forever! They knew if they drew blood the normal way they would blown the vein so once they were in they let the blood drip, drop by drop into the tubes...all SIX!!! Once they heard him cough they were worried about pneumonia, but a chest xray quickly ruled that out. Once we got up to the floor they TPA'd his port (clot busting meds) and 45 minutes later we had blood! I don't know who was more excited, me or buggy!!! We also transfused last night. Around 2 in the morning, they came in and told me that Alex's nasal swab for flu was positive for strain B, continuing our stellar history with the flu. Dr. Koenig also had him started on 2 heavy duty antibiotics until our blood cultures come back to rule out a line infection in his port.

Alex is doing pretty well. The fever stayed high until last night and has come down (once we got blood). I am not sure if it is gone for good or if it will rear its ugly head again. Poor baby had awful chills all day yesterday in the ER. I am tired there was no sleep to be had last night, but at least we are making progress. Oh, one last note. We will NOT be attempting feeds this trip. His pancreas enzymes are higher then they have been in weeks.

I'll update more once I see Dr. K.

Ali

Oh where to begin? As usual Alex has kept us on our toes!

Christ​mas Eve was really fun! We put out food for Rudolph, went to church and went out to dinner. Alex was so good through all of it. He loved smelling all of the different foods we had at the restaurant. Alex quickly fell asleep with dreams of Santa dancing through his little head.

Alex had been insisting for days that Santa was bringing him exactly 3 presents because that is what he had asked for! When he woke up yesterday, I informed him Santa had been here and there were DEFINITELY more then 3 presents. He came out of his room said "whoo" and promptly pretended to faint! Only my Alex!!! He had a ball opening all of his presents and loved everything.

His nose started running early yesterday, but we didn't think much of it. Then he started coughing a little, but again not too bad. Well by last night he started feeling pretty warm. I took his temperature and his fever was 103.4. I was hoping it would go down over night, but so far it is staying strong above 103. I have been in contact with Dr. Koenig. She would like me to come into the ER today. I am trying to hold off until tomorrow and spend one last day with Grandpa. Alex is his usual upbeat self. He is tiring out quickly but still playing. I am fairly confident we are just dealing with a cold, but we need to head to Houston anyway.

As always I will keep you all posted. I hope you all had a very blessed holiday.

Ali

What a day!!!!

Afte​r accessing Alex's port for the third time in three days and praying for blood...no such luck. And so the scrambling began. We wound up going to Dr. Benzick's and having our dear Judy draw blood. Unfortunate​ly after several sticks we only had 3 cc's of blood. We normally collect almost 8! So on a wing and a prayer we took the blood to the lab not sure if they could run everything or not. Luckily, they did everything! Our blood counts continue to drop so we will need a transfusion again next week. His liver enzymes are slightly elevated from the TPN, but nothing serious. And his pancreas labs are a little higher this week.

In other excitement...​When I went to give Alex his meds this morning his feeding tube was half in his belly, but the button that is normally flush to his skin was hanging by his knee!!! I knew that thing had been out of place! So i had to pull that the rest of the way out and replace it with a plain G button. It is really a blessing in disguise as his belly already feels better and his output is less already. Talk about a shock though!!

So needless to say between the transfusion​, port issues and J tube we will need to head back to Houston next week regardless of our readiness to feed.

Thank you for all of the prayers. May you all have a Very Merry Christmas!

A​li

I write asking for a few very specific prayers...

1. Most importantly for Mommy to be able to draw back and get blood from Alex's port tomorrow. A few days ago we lost the ability to draw back. This has happened before, but changing the needle usually fixes it. I changed the needle tonight and I am not getting anything. Tomorrow is lab day and I can't get blood. We DO NOT want to have to go to Houston 3 days before Christmas.

2. For Bruce's car to do okay. Our Honda which has over 200,000 miles on it broke down on Thursday night. It seems okay right now, but we really can't afford a new car right now. We need this to hold out until we are in a better place financially.​
Otherwise we are having a great time with Grandpa. We have been to our Christmas party and finishes getting ready for Christmas.

H​appy Holidays!

Al​i

We are having such a good time with Grandpa! It makes me so happy to see Alex excited to be with my Dad.

Alex's labs were okay this week. His liver enzymes are all slightly elevated so we will be anxious to get off TPN as soon as possible. His amylase and lipase (pancreatic enzymes) are still elevated, but not too bad. His blood counts are starting to drop again, but should hold out till after Christmas. Overall, not bad!

Tomorro​w, is our playgroup Christmas party and Friday we will go to the Children's theater to see a Christmas show. Otherwise, we are just relaxing and enjoying time at home.

Ali

I have an update, some blessings to report and some prayers to ask for!

Our update: Alex is happy to be home. He is playiong and feeling pretty good. We haven't had any complaints of stomach pain. He continues to put out large amounts of bile each day, but as long as he is not hurting I am okay with replacing fluids. Since being on TPN for the last few months, Alex has gained almost 3 pounds and grown an inch. We are so happy to see him finally growing. We are trying to get as much weight on him now because we know he will struggle when we go back to feeds. We run labs on Monday and will see how his pancreas and blood counts look, but for now all seems well.

Blessi​ngs: First and foremost...​Grandpa is coming tomorrow! We are so excited. Grandpa was supposed to spend Thanksgivin​g with us but because we were in the hospital leading up to the holiday he decided to wait for Christmas. I need to thank my Sister, jenn for loving us enough to always be flexible with holidays. Dad always spends Thanksgivin​g with one of us and Christmas with one of us. Well for the second year Jenn and her family have graciously changed plans to accomadate Alex's schedule. Jenn we love you and appreciate that you always do what you can to make things easier on us.

The next blessing I can't even believe! Our church contacted us and said they wanted to help us out between Bruce's job situation last month and Alex. They let me know that they had something for me to pick up. Well, I went to church yesterday and they had several frozen meals, $225 in grocery store gift cards, $150 in Target/Walm​art gift cards, and a free meal at a local restaurant. I am so touched and blown away by people's generosity. It really does mean a lot.

Prayers​: We have several friends who are in need of prayers right now.

1. Lauren is a little girl who is getting ready to be admitted to the hospital (in Philly) awatiing a heart transplant. She is a precious little miracle and while her parents knew there was the possibility she would one day need a heart they were hoping it wouldn't be this soon!

2. Landon: Landon, Jen and the whole family are getting ready to leave to go "home" to Missouri to spend Christmas with their extended family. Please pray for Landon's health to hold out so that they can enjoy this much needed time at home.

3. Smauel is our new buddy at the hospital. We have "talked" online for a few months, but they spent 3 weeks inpatient with us in Novemebr and were back with us again this week. Samuel is very sick with 2 kinds of central line infections and the stomach bug that Alex had in November. They are going into surgery later today to remove his port. He will need more surgery next week to replace his port with a new one. Missy- I pray you guys are home for Christmas!

4. Tricia and Andrew: Please pray for there muscle biopsy results to come back. They have been patiently waiting for 12 weeks.

5.My close friend Mariah and her family as her Dad was just diagnosed with inoperable lung cancer.

6. Countless other families I can't name who are struggling with mito.

Ali

We are home! Alex is holding his own....More tomorrow!

Al​i

We are coming home!!!! In Alex's words...WOO​HOO! They think they are going to discharge us tomorrow. They feel pretty strongly this is just the motility problem. They don't feel it is necessary to put him through any more testing right now. The plan is for us to come home and closely monitor his ins and outs. Basically we will measure Alex's pee and what he puts out his G tube. If that is more then what he takes in then we will replace it with fluids at home.

We are still waiting on GI to okay this plan. We are so happy to be heading home in time to see Grandpa and enjoy Christmas. We will be coming back to the hospital on December 29th for "at least" a few weeks.

Thank​s for all the prayers.

Ali

Things are trekking along here! We saw GI this afternoon. They feel like Alex's bile output and stomach pain are all symptoms of his slow motility/ps​eudo-obstru​ction. GI feels this is a problem we will deal with on and off forever. He wants to have a plan for us to be able to replace fluids at home when this happens so we don't have to be admitted.

Wi​th that being said...They are going to watch Alex for the next few days. If his output slows down great. If not they want to run a few tests to check for obstruction​s.

So we wait and watch.

Ali

We are back in Houston! Alex's stomach problems escalated over the weekend. He was getting dehydrated and Dr. Koenig was concerned. Now we have to figure out why we are having so much trouble. We are praying for a short stay and a return home quickly.

I will update tomorrow when i know something.

A​li

We are enjoying life at home! Poor Alex continues to struggle. he is having a really hard time with his stomach. It is dishearteni​ng because normally if we don't feed he feels great. Right now he is putting out huge amounts of bile and gas and crying about his belly hurting numerous times a day. We don't really have an explanation for this.

I am anxious to see what his bloodwork shows tomorrow.

Al​i

We are home! Luckily Dr. K kept her promise and didn't try to keep us. We walked in the door at 4:30.

The good: The transfusion did its job and brought his blood levels up. He didn't have a reaction. His pancreatic enzymes are improving.

T​he bad: Alex's blood sugars continue to be a problem. We are seeing higher highs (240) then we have ever seen and very low lows (30's). Dr. Koenig is very concerned that he may be developing diabetes. For now we are just going to check blood sugars 4 times a day and keep an eye on things. Luckily Buggy doesn't mind finger sticks.

Than​ks for all the well wishes and prayers.

Ali

Last night was rough! We got NO sleep. The nurses and tech came in at 11, 12, 2, 3 ,4 and 6. The good news is Alex's blood counts came up nicely. We are waiting on Dr. Koenig to give us the go ahead to go home and our team to write discharge orders.

More later...

Ali

This has been a long day and it is far from over! Alex and I left the house at 6:45 this morning. The plan was to get here early get our blood and be able to head back first thing tomorrow. Well we arrived at the hospital at 11:15 to learn that there were no available beds on the floor of the hospital where we needed to come. After sitting in the waiting room for 2 hours, we convinced them to lt us hang out in jen and Landon's room. Good thing because it was another 5 hours before we got a room. The room only had a crib in it and it was another 2 hours before we got a bed.

It is now 11:00 and we are just getting ready to start his transfusion which will last 4 hours! I have to stay awake at least for the first little while to make sure he doesn't have a reaction. As most of you know this is WAY past my bedtime. Also, they are worried about his blood sugars so they are checking them every 2 hours all night long. So needless to say I will be exhausted by the time we get home!

I will update tomorrow and let everyone know how it goes.

Ali

Well we are heading back to Houston tomorrow. They promise me it is only for 1 day! We will leave bright and early tomorrow morning and be admitted for Alex's blood transfusion. We should be able to come home sometime on Thursday.

Please pray for safe travels for us and a reaction free transfusion

AHHHHHH!!!! Can everyone hear that scream. We just checked Alex's labs for the first time since being home. He needs a blood transfusion which most likely means another trip to Houston.

Alex has also been suffering from stomach pain, but we are trying to control it at home. It has not gotten bad enough to need narcotics which would also mean going back. His pancreas enzymes were a little lower today.

I will update tomorrow and let everyone know what Dr. Koenig says. Please pray for my sanity!

Ali

Happy Thanksgivin​g!

We are safely home and had a nice relaxed thanksgivin​g. Alex is doing well. I am adjusting to life with TPN and IV meds. And Bruce is just happy to have some company in the house.

Alex is so happy to be home and playing with his toys and sleeping in his bed. He has decided he loves Thanksgivin​g. For two days he has been telling me he can't wait because he has " a lot of smelling to do". ( For those of you that don't know, Alex smells our food when we are eating) Well I decided to make him his own plate tonight. He was so excited. He sat with us all through dinner smelling his food and deciding which thing he liked best. If only we could all be so adaptable.

T​oday on Thanksgivin​g I have so much to be thankful for...

For the sweetest boy in the whole world. Alex is such an amazing strong child. He has taught me so much about life and how to live. He has been through more in his 4 short years then most of us will ever endure and yet he is full of joy and loves life every day. I strive to have the courage and exuberance that he exudes every day.

I am thankful for my family and friends who are always there with words of encourageme​nt when we are low and smiles when times are good. For all the times they have listened to me brag and been as proud of Alex as I have been.

I am thankful to be home and surrounded by my things and aware of how blessed I am.

I am thankful for Dr. Koenig and everyone at CMHH for working so hard to make us feel "at home" when we are there, but working so hard to make sure we got home for the holidays. You guys make each hospital stay bearable for me and fun for Buggy.

Thank you to each of you for being a part of my life.

Ali

As far as I can tell, we will not transfuse tomorrow. Hopefully, we can get on the road before the holiday rush. Everything looks good except Alex's pancreas numbers. They are the highest they have been since they started trending down a week and a half ago. We are not sure why they are climbing again. We hope they don't continue this way.

I forgot to tell a funny story before... They sent someone up from pulmonology to make sure he could follow directions. When the man walked in he asked if there was an Alex Beckwith here. Alex answered, "Not me". The man asked who he was. Alex answered, "Landon". Then Alex proceeded to tell him he needed to head over to Green Leaf (the section of the floor where Landon's room is)!! He had us all hysterical. He is too much.

Please pray for safe (and quick) travels tomorrow!

Al​i

We're heading home tommorrow!!!!!​
We don't know what time. We may need a blood transfusion before we leave.

Today was a hard day. We didn't get the pulmonary function test done. Alex was petrified of putting the tube in his mouth and cried for about 3 hours. I am not sure when we are going to attempt those.

I will update tonight and let you know final plans.

Ali

Things are still in the works to get us home Tuesday or Wednesday for a hiatus! I am hoping Dr. Koenig won't change her mind. She told me Saturday that it is very unusual to send someone home from the hospital with active pancreatiti​s. Since then his enzymes have jumped up by several hundred points. Alex seems fine, but we are keeping a close eye on him. He continues to amaze me with his strength as he battles what is considered to be one of the most painful illnesses you can have.

We had a visit from the pulmonoligi​st today. We are relatively sure Alex's lungs are fine, but he gets out of breath easily and we don't want to miss anything. She was also concerned about one of his labs when we came in. So she has recommended running some labs, doing a chest xray and attempting a pulmonary function test. She also is going to track us down tomorrow after Alex's play time to listen to him once he has been running. The last suggestion she had was to proceed with the sleep study if we can ever get it done. (It has been cancelled twice because we were admitted).

S​o we wait to see Koenig and GI tomorrow to get the go ahead to leave. Please pray that they will let us stay home until after Christmas.

A​li

It was SO good to see Dr. Koenig this morning!!!! Alex had so much fun playing with her. We may be home for Thanksgivin​g! Dr. Koenig would really like us to go home. We are going to run labs the next 2 days. If Alex's pancreas is still inflamed, meaning we can't attempt feeds we will go home Tuesday or Wendsday. Knowing that we will have to come back either after Thanksgivin​g or after Christmas and be admitted. In the meantime, Dr. Benzick will help us manage things at home.

We are having a really hard time with blood sugars right now. Poor Alex hasn't had any time off his IV pole to play because his blood sugars have been too low to stop his TPN.

Other then that we are doing pretty well.

Thanks for the continued prayers.

Ali

Sorry for the delay in updating!

Al​ex started feeds as planned last night around dinner time at a very slow rate. He did pretty well over night except that he was draining a large amount of bile from his stomach via his Gtube. This morning the amount of output increased even more. When GI came to see us they made the call to clamp the tube we were draining and see if his body could move everything through. Their concern was that bile was in his stomach which meant it was backing up. We clamped the tube and within a few hours we noticed Alex starting to have some pain. We stopped feeds for 3 hours. This afternoon we reran his pancreas enzymes and they have increased a bit. This was our fear. Our pediatric resident is luckily on call tonight and made the quick decision to stop feeds before the pancreatiti​s becomes out of control again. I will find out tomorrow when the plan to try again is.

We will not be able to leave the hospital as long as his pancreatic enzymes are elevated regardless of his feeds. We were hoping for early next week, but that is not looking good at this point.

Dr. Koenig has been scarce this week as she prepared for an exam so I will be SO happy to have her back.

I will update tomorrow. As always thank you to all of us that continually pray for us and support us.

Ali

Not much has changed in the last day. Alex is doing pretty well. Still dealing with fevers and rashes from the anesthesia. The plan is to start feeds some time today. We are waiting for the okay from GI.

I will update when I know more.

Ali

Alex had his surgery this morning. He is doing well. He has a fever, but that is par for the course with Alex and anesthesia. His tube is in place for now. The question is how long will it last. The next time it comes out we will do a big, invasive surgery and place a separate J tube.

The colonoscopy also went okay. Alex's colon looks good. They don't see any sign of infection.

Now we need to wait 24-48 hours for Alex's body to settle down from the anasthesia so we can start feeds and see how he does.

Alex's pancreas enzymes have decreased every day. The pain is gone. The concern at this point is that it will flare when we start feeds.

Thank you for all the prayers.

Ali

For the first time in 3 days Alex is out of his bed this morning. It is good to see him playing around! He had a good night last night. The only problem was high blood pressure which is very uncharacter​istic. We are watching it to see if it is related to pain or is something else.

We are planning on doing the surgery tomorrow since he feels so much better today. Dr. Koenig will have the final say though.

Ali

Things are a little less frantic today so I can explain a little more! There are two enzymes that they measure to watch pancreas function, amylase and lipase. Amylase should be no higher then 90. Lipase should be no higher then 70. When they are both elevated it is pancreatiti​s. Alex's amylase was 3000 and his lipase was greater then 800. Basically both numbers through the roof. To put this in perspective Alex had an amylase of 195 several years ago and they were concerned about that.

Yesterday, Alex did okay once we got his pain meds started. He was relatively comfortable until about 10:00 last night. At that point was in horrible pain again. We called the doctor and increased his pain meds, but we could not get the pain under control until after midnight. he is once again comfortable and we are hoping not to have anymore really severe episodes of pain. If the pain gets worse we will go to a continuous drip of pain medication. Everyone is in agreement, we do NOT want him to hurt.

We did not transfuse yesterday. We just didn't want to add one more thing into the mix. We are transfusing this morning with steroids, tylenol and extra benadryl on board hoping to avoid a reaction.

Th​e plan as of now is to continue watching his pancreas numbers. Monday's tube placement and colonoscopy are going to be a game time decision. Dr. Koenig will have final say on whether it happens. If his pancreas is still inflamed or he is still in extreme pain we will hold off. If he is doing okay we will go ahead with it. Once the tube is in place we will attempt another antibiotic to treat the bacterial infection through his tube. We will also slowly start feeds and hope to get back to where we were. The trick is we cannot feed until the pancreatiti​s is under control. So we are pretty much in a holding pattern right now.

Landon is doing well. The plan is to try and bring him out of the coma tomorrow and extubate on Monday. He has been very stable for the last several days. We actually laughed with Dr. Koenig yesterday that for once it was Alex that had her worried.

Hop​efully, that helps clarify things a little. Thanks for all the thoughts and prayers. they mean the world to us.

Ali

Well it is confirmed that Alex has pancreatiti​s. He is in excruciatin​g pain. Luckily it comes in waves. We are just now getting him pain meds though. They are trying to determine if the med is causing it or if it is just a mito thing. We are just hoping to get him comfortable and let him get some sleep. As of right now surgery will go on as planned on monday.

The only other news so far is that Alex will have a blood transfusion today. he just can't keep his counts up in the hospital when they are drawing labs.

I will continue to update as the day goes on.

Ali

It has been a long, hard day and it isn't over yet...

The day got off to a really crappy start. The same small group of nurses and the nurse manager who were giving Jen and I trouble last time are at it again. On monday we were told we could no longer sit in the hall and talk to each other. We were told we had to be in one of our rooms. I have been trying to stay out of PICU becuase of Alex's bacterial infection. Even though the risk of spreading it is pretty low, I didn't want to take any chances. Jen slept in my room last night beacuse their was no where for her to sleep (they never turn off the lights in PICU and there is no bathroom). We got up this morning and one of the "trouble" nurses reported it to my pediatricia​n. She informed me that I can no longer have any visitors in my room that are not family. This is not a written rule anywhere and we have a group of people on our side trying to help us fight this, but we are very upset to say the least.

Now on to Alex...At about 4 am he started crying about his belly hurting. He eventually fell back to sleep but he was in horrible pain for a good portion of the day. He was also really naseaous. When I saw Dr. Koenig I mentioned that a friend had told me her little boy gets pancreatiti​sis everytime he is on the antibiotic Alex is on. She ordered the labs to check and gave him something for the naseau. About 8:00 tonight the on call doctor came by and told me we were not to put anything in Alex's tube under any circumstanc​es. She then told me Alex's lab values. His two pancreas labs are EXTREMELY high. They have ordered ultrasound to come up stat. We are waiting now.

On the Bruce front...bru​ce started his new job Monday. It is going ok. It is a really long commute. It is taking him between 1-2 hours each way depending on traffic. He is also worried he is not going to make enough commission to make the money we need. So all of you who were keeping eyes and ears open for job opportuniti​es please continue to do so.

I will update when i know more.

Ali

Alex's surgery is scheduled for Monday. This means we will be here through next week. No other news tonight.

Ali

Well surgery is not happening today. Alex had a fever of 102 overnight and his heartrate was in the 140's and 150's. We now know that he has a bacterial infection in his gut. But, that infection does not normally cause a fever so we think we may have 2 separate things going on. So we started antibiotics last night.

I am waiting to see the doctors to find out when surgery is rescheduled and how long they anticipate we will be here. I will continue to update as I know more.

Landon needs all of our prayers. he continues to struggle. He was placed into a drug induced coma this morning. We are just praying he is strong enough to pull through. Jen and James- know I love you guys and am here for you.

Ali

Well its been a crazy day... Alex had a contrast study done of his tube. His J tube that should be in his intestines has crept up and is close to his stomach. We have to go to surgery tomorrow to replace the tube.

Unfort​unately, Alex has a fever and high heartrate tonight. I don't know if it is a reaction to the barium they used or if he is sick. I am waiting to hear from Dr. K to see if she is still comfortable with surgery if he has a fever.

I'll let you know tomorrow...​
Ali

It is amazing how quickly we have gotten back in the swing of hospital life. It feels like we never even left. Along with Jen and Landon, there are 2 other mito families here and another one on there way in today. Plus Mariah and her family are here. So at least I have people to "entertain" me! It was so nice to see Mariah, Brandon, and the girls yesterday. We all wish we lived closer. Mariah and I have such a special relationshi​p. It is just easy. That is the best way I can describe it. Mariah- Thanks for being there for every laugh, vent and tear. I don't know what I would do without you.

Alex seems to be over the "illness" part of this. We are left with all the GI crud that landed us here last time. We started TPN back last night. Today I sit down with Dr. K and try to get her to understand that we can't live in Houston for 2 months everytime Alex gets sick. The plan today is to do a special xray with contrast to make sure his tube is still in the right place. If it is we will slowly start feeds.

I will update more as the day goes on.

Ali

PS- Landon needs prayers again. He had been doing pretty well, but had to be rushed back into PICU yesterday with what is suspected to be pneumonia.

The good news... Alex seems MUCH better this morning. He had us a little worried last night. We could not wake him up. He slept from 2:00 yesterday afternoon until 6:00 this morning. His temperature is down and while not back to normal he looks much better. This does not look like a serious illness.

The not so good news...He is once again not tolerating any feeds. On our way out the door yesterday Alex threw up so I stopped feeds. Dr. Koenig wanted them back on at 20 cc/hr. We started that around 8 last night. The nurse came in around 2:00 and told me we needed to stop feeds per the doctor. We are feeding into his intestines, but he is backing up and dumping it out his stomach. We are venting his stomach to keep him from distending and being uncomfortab​le. I have not seen the doctors this morning so I don't know yet what the plan is. Last hospital stay Dr. K and I had talked about the very real possibility that Alex's Gut may shut down with every illness and he may need TPN. We had said if that was the case i would just do TPN at home and then move back over to feeds after a few weeks. So I am not sure if that will be the plan or not.

Ali

We are settled back in on the 9th floor....Ho​me sweet home! Sad isn't it!!! It was good to see lots of "friends" though.

Poor Alex feels miserable. He has slept all day. He cannot keep his eyes open. He says his belly hurts and he is just really tired. His blood work looks okay except his metabolic stuff. The major mito lab is pretty high which is a sign that his body is struggling metabolical​ly so its good we came in. I haven't spoken to Dr. Koenig yet so I don't know the plan. I will update as I know more.

Ali

Despite tylenol Alex's temp has continued to climb to 103. I cannot sit on it anymore. Alex and I will be leaving in the morning for Houston. I am waiting to hear from Dr. Koenig but my guess is we are going inpatient. I will keep you updated.

Pra​yers appreciated.​
Ali

Prayers are needed once again... Alex is struggling with a fever. He spiked a fever close to 102 yesterday. We have not been able to bring it down. He is acting fine. The plan is to head to Houston earlier then planned if his fever goes up any more. I desparately do not want to wind up inpatient again.

I will keep everyone updated.

Ali

Some news I had not updated... While we were away my mitochondri​al DNA testing came back. Dr. koenig had run this to compare it to Alex's. My DNA is identical to Alex's and there is a mutation that is suspicious for disease. The problem with this is that Alex and I have that mutation in the same amount. So if that was the only thing wrong, i would be as sick as Alex. Dr. Koenig feels that there are a few possibiliti​es. One, that Alex has really bad mutation in his mitochondri​al DNA which is present at such a small level that they can't detect it. Two, Alex has a new mutation that they haven't found yet. Three, Alex got a nuclear mutation from Bruce that by itself wouldn't cause problems , but with my DNA makes everything worse. At this point we will wait till the testing gets better in a few years and try again. It really wouldn't change anything anyway.

We leave Sunday for Houston. We see Dr. Koenig, Dr. Rhoads (GI), Dr. Chumpatazi (new GI who specializes in motility), Dr. Pacheco (Immunologi​st), have a sleep study, and have an abdominal CT scan. So we should be pretty busy.

We are also really excited to see all our friends again although we won't have as much down time as usual.

Bruce starts his new job on Monday. So pray that he likes it and it goes well.

Ali

We had SO much fun! Thank you to Grandpa for an awesome vacation!!!! Alex was hysterical at the football game. He cheered long into the night and made us Pirates proud. Seaworld was one of the best theme parks we have ever been to. It was just an all around great trip. As always it was hard to leave my family. We love Texas, but hate being so far from our families. We really treasure the times we have together.

Th​e big news is that BRUCE GOT THE JOB!!!! We are so very relieved. Thank you to everyone who has been praying for us. He starts on Monday.

We head back to Houston on Sunday. I will update more as the week goes on.

Ali

We had our playgroup halloween party today. We had so much fun as always. Alexs loves to be around his friends and so do I. It is the only "normal" in our week and it is so important to both of us. I am so thankful to our playgroup for all they do for us.

Alex and I fly out to Orlando tomorrow. We are so excited. I will not update until I get home unless something happens.

Bru​ce had a great interview today so our fingers are crossed.

Ali

Alex is feeling much better. Thank you to all who have been praying fo us. Bruce has his first interview tomorrow. We are praying for a job to materialize in the next few weeks. Our biggest fears are for medical insurance for Alex.

Ali

Another stumbling block has fallen in our path... Alex has a cold and a fever. A few years ago, I wouldn't have even batted an eye at a fever of 101 as some of you know. I sat home and weathered many fevers over 105. Now that we know about the mito every illness causes just a touch of fear. We watch Alex like a hawk. We have been told that it will be an illness getting out of hand that will weaken Alex and that has the potential to take his life so that is always in my mind. We laso have to watch every fever VERY closely because of his port. A central line infection is life threatening in and of itself because the line is in a vein that travels straight to the heart. So needless to say my days of shrugging off colds are gone.

Howeve​r, I only know one way to live this life and that is with a smile on my face and my feet marching forward with God by my side. I ask that you pray for me to keep my chin up as we forge ahead. The last year has been a hard one. It is not easy to stay positive when hit after hit comes with no break in between. Pray that my faith sustains me and carries me until life blesses me with an easier path to march.

Ali

Thank you to everyone who has reached out to our family. We are trying to be faithful that something will come along shortly.

Alex is having a rough week. He is not feeling very well. His GI motility is so slow that his feeds are backing up from his intestines into his stomach and causing pain. We are doing our best to keep him comfortable​, but there really is no good answer. We see a motility specialist when we go back to Houston in November.

Pl​ease continue to pray for our family during this scary time.

Ali

I write tonight asking for prayers.... We just found out that Bruce's company has decided to do away with his job. Him and his friend Alan are both being let go immediately. We are very scared. We don't know what this means for our family. Alex's medical expenses have taken there toll over the last four years. Please pray that Bruce finds a job quickly.

Ali

We are settling back in! Alex is so happy to be back in his surrounding​s and especially with his toys! He is doing really well with me, but having a hard time following directions with the nurse. He is just testing her constantly. After 8 weeks of only having to listen to Mommy it is hard to have to listen to someone else too. The only struggle I am having with him is bedtime. He is doing great at naptime, but bedtime is a fight everynight. He got used to a light room and Mommy being right there. I refuse to lie down with him until he is asleep every night. It just ain't happenin'! So he is working through it. It is just a hard adjustment.

Alex started back at therapy on Wednesday and I was pleasantly suprised. He did a great job. He loves his Andrea. He worked really hard and has not lost as much strength as we had feared. So that was really good news. We went from there to playgroup. He was so happy to be playing with his friends again. I don't think I even saw him all morning.

Other then that we have had a really quiet week. Alex is back to taking extremely long naps. I am waking him up each afternoon at almost 5:00. So it is nice to be getting back to normal.

We have two weeks and then we head off for our weekend of fun in Orlando.

Ali

HOME, SWEET, HOME!!!

We arrived home a little after 5:00 yesterday to a HUGE welcome home sign from our playgroup and balloons from Daddy. That sure put a smile on our faces!

I was oh so right about how much stuff I had in Houston, I am still unpacking. I think it will take me all week to get settled back in.

Alex is doing well. He had a hard time falling asleep without Mommy last night, but did great at nap time today. He seems to tire a little quicker then before and had some trouble with the stairs so i think he lost some strength, but other then that he is doing great. His belly feels good, his blood sugars are holding steady, so no complaints.​
We see Dr. Benzick next week to follow up and have labs drawn.

Thank you for all your prayers over the last 2 months.

Ali

I had no idea how much I had crammed into this hospital room. I guess after 2 months you can accumulate a lot. I have some stuff in the car and a little more to take tommorrow.

Alex has been a little off today with really high heartrates and blood pressures and sweating which he never does. I am just chalking it up to excitement over going home. I am hightailing it out of here tommorrow. There is a kid next to us with the flu. That is the last thing we need.

I will update once we are home. Please pray for safe travels.

Ali

I STARTED PACKING THE CAR!!!!! Things are going well. We are just so anxious to get home. We have labs the next two mornings and they are going to do an xray of his stomach to make sure everything still looks good. Other then that the goal is to have us on the road by early afternoon on Monday.

Ali

A quick update before I head to bed... Alex's belly is doing great. We are having some blood sugar problems, but they are not unexpected. We had to use our new D50 trick and Alex is having to have his blood sugar checked every hour. Poor baby! Other then that we are thrilled with how the day went. Oh...one other slight problem...A​lex has another allergic reaction to the dextrose. He is now on an adult dose of benadryl every 6 hours.

I will update tomorrow.

Al​i

4 days and counting....​
Jen, Landon, Alex and I will walk out these doors Monday side by side. We would not have chosen it any other way.

Today is one of the most critical days since we have been here. We are concentrati​ng Alex's formula today from half strength to 62%. We are hoping Alex's body will metabolize as it should and that his GI tract will tolerate it. Dr. Koenig has decided that only pain on Alex's part will stop us. We are going to push through pretty much anything else.

Yesterday we did the hydrogen breath test to test for small bowel bacterial overgrowth. It was negative as we expected it would be. It was strictly to rule out his distention, abdominal pain, and diarrhea. We know that these are just Alex not tolerating feeds as well as we would like. We also did an experiment with his blood sugar and a recovery plan for if his blood sugar drops really low. We will now carry a syringe of 25 gram of D50 (50% dextrose). (For comparison most people would get a D5 IV if they went to the hospital for dehydration​). In the event Alex's blood sugar dropped we would give him the D50 through his J tube and it would bring his blood sugar up about 30 points for an hour and a half. That gives me time to access his port and start IV fluids or get to an ER. We are really happy to have something in an emergency.

On another positive note Alex, has gained back ALL of the weight he lost in the weeks leading up to coming in.

I can't wait to see everyone!

Al​i

There is a light at the end of the tunnel...We should be heading home a week from today. There are 2 possibiliti​es. One is that things will go exactly as planned and we will continue to progress and go home on J tube feeds with no need for TPN. The other is that we will not be able to concentrate teh formula from half strength to three quarter strength. In that case we will need to stay on some TPN along with our feeds. We have come farther with our feeds then we ever thought possible so we are happy.

We are going to do one more GI test before we leave to test for bacterial overgrowth. Other then that the plan is tho increase feeds to 70 cc/hour tomorrow. Then on Thursday we will go to 62.5%. On Saturday we will go to 75%. And discharge on monday. If we get out early in the dya we will head home. If it is late afternoon then we will spend one night and head home Tuesday morning.

We need to be back here the week of November 10th. We have to see Dr. Koenig, 2 GI doctors and do a sleep study. Then depending on how Dr. Koenig feels and how Alex's belly and blood counts are doing we are going to try and not come back until February.

In the meantime, Alex and I are going on a fun excursion! My Dad offered to take us to Orlando for a long weekend to see our beloved Pirates play and to go to Sea World. We are really excited. We will see Aunt JennJenn, Uncle Jimmy, SkyeSkye, Grandpa, and maybe Mimi and PopPop. Alex is hysterical because he is more excited about the football game then seaworld.

I have to say thank you to everyone who has sent cards and gifts. You have no idea how much they mean. To our playgroup: you guys made our day. Thank you for being such good, loyal friends. We cannot wait for next Wednesday to see you guys. We miss you so much.

I leave you with a quote I found...God didn't promise days without pain, laughter without sorrow, sun without rain, but he did promise strength for the day, comfort for the tears, and light for the way.

Ali

Not much to report these days... Alex is REALLY itchy ever since getting his transfusion. He is getting benadryl and atarax two antihistami​nes alternating every 4 hours and extra doses of benadryl as needed every 6 hours and is still scratching constantly. We talked to Dr. Koenig and Dr. Pacheco (allergy and immunology) today about trying IVIG infusions once a month. They are typically used for immune deficient kids to help them fight off infections, but b/c it helps the immune system it may help Alex's allergic reactions. Dr. Pacheco is going to do some research and see if she thinks this will benefit Alex.

We also talked to Dr. Koenig about his anemia. My concern is that we won't be checking his blood counts at home. She feels like since he is going a month between needing transfusion​s and we will be back in Novembere we should be okay till then. We will also give an adult dose of benadryl and steroids before any future reactions.

T​he last discussion was about discharge. We should be going either October 13th or 14th. We have a few things Bruce needs to get before we come home, but we are pretty well set.

Thanks for all the prayers.

Ali

Not much to update... Alex had a blood transfusion yesterday. he had an allergic reaction to the blood, but we pretty much expect that these days. The pharmacist laughs about how sensitive Alex is to everything. his energy level and temperment are much better today. Other then that things remain on course. We are still hoping to be home sometime around the 13th of October.

Ali​

We had a decent weekend. One of our favorite nurses worked Sunday and Monday so that always makes for a better day. Unfortunate​ly our 2 favorite nurse are both on vacation until we come home (hopefully).

Medically speaking not much to report... Alex's feeds are up to 50 cc/hr of half strength formula. His belly is really distended, but not hurting him so we are just watching for right now. I am praying we continue to progress. It looks like we will be getting another blood transfusion in the next few days. Alex's hemoglobin and hematocrit are low and he is pale as a ghost. We are waiting to see what tomorrow morning s labs look like. (We run labs Mon, wed, and Fri mornings).

A wonderful, generous woman Joan, came and cut mine and Alex's hair last night so that was a really nice treat. She brought her 19 year old son and Alex had a blast playing with him. They even played the Wii.

Other then that things are pretty much the same. I will update tomorrow.

We have had a rough few days, but in a very differnet sort of way! Alex's belly is doing great. His ammonia levels are holding steady. All of the normal culprits are under control.

Yesterday, Alex was visiting his buddy Andrew. He was riding on a little ride on toy. As he rode into Andrew's room he flipped over the front of the toy and landed face first on the tile. He was bleeding quite a bit from his mouth but wouldn't let us look to see where the blood was coming from. He soaked awashcloth with blood. I finally calmed him down enough for him to tell me his lips hurt not his teeth. Needless to say his lips are all swollen. We tried to get a look overnight, but everytime we toughed his lip he flinched and swung his head around. We know he is sore, but it hasn't slowed him down at all. We gave tylenol twice yesterdya and will give him some at bedtime tonight to make sure he is comfortable. I guess after all these weeks he thought we needed alittle extra excitement.​
Then today we had a nurse that is unfamiliar with Alex and her trainee. Two separate times they messed up Alex's medications and almost did a third time, but I caught it. This is completely unacceptabl​e. A mistake like this could be fatal in a child like Alex. Luckily we are already double dosing him on antihistami​nes because of his rash. Luckily, this saved us from a potential severe allergic reaction. I complained to the charge nurse and requested that I PLEASE have one of my "regular" nurses tomorrow. I felt like I couldn't turn my back for a minute. I do not want to have to do that all weekend. We will see what happens tomorrow.

Ot​her then that things are good. We have our favorite night nurse for the next 3-4 nights so that means Mommy will get some sleep which always makes me happy.

About two and a half weeks...

Ali

Today has seemed like a long day! Some days just drag more then others and today seemed long (but not bad).

On a good note all three of our very favorite nurses worked today so Alex was as happy as could be to have "his" girls around. We also have several friends that are inpatient with us so we have been visiting. Andrew is here having a muscle biopsy to diagnose a mitochondri​al disorder and Nicholas had a new tube placed. Alex loves having friends around to play with.

We saw Dr. Pacheco today. She is our allergist immunologis​t and is also doubling as a pulmonologi​st right now. She came to see Alex's rash and talk about his risk of aspiration. For his rash we are going to add another medecine. We are already doing benadryl every 4 hours and hyrdrocorti​sone cream so we will add one more. She will also recheck all his immune labs. As for pulmonary had we continued feeding in the G tube their recommendat​ion would have been to have the reflux surgery, but because we are feeding i the J tube he is not refluxing so we will not need to do that.

Dr. koenig, Dr. Pacheco and Dr. Rhoads (GI) met and they do not feel that we wuill ever feed into the G tube again. Alex's motility is so poor and his reflux so severe that it is not worth it. They have also decided that we will not let Alex eat any food for the next 3 months. At that point we will reassess whether to let him have his 4 foods back. Alex has completely stopped asking to eat, but I worry about going to playgroup and parties and out to eat with no foods. I am sure Alex will prove me wrong for worrying he is always so amazing.

He continues to charm his way through the days. With a smile on his face and a giggle for his friends.

Ali

Things are trucking along. We are still creeping up on our feeds. We are going up b y five cc's every other day. My best estimate is that we will be home mid October. Alex is doing well. He is pretty cranky on the day that we increase his feed and then he stabilizes the next day. He is not having any belly or leg pain at this point. He is still really itchy and has a rash, but we'll take that. We have continued to have some blood pressure and temperature issues overnight, but they are part of Alex's mito.

Landon continues to need your prayers.

Ali

Oh I forgot... We are not going to the zoo. The hospital said that insurance will not pay anymore if we go plus liability blah blah blah. Our ped team felt really bad. So they contacted the zoo and the zoo is going to try and bring some animals out here to see Alex on Monday.

Ali

Sorry it has been a couple of days. When Alex has irritable days it really takes its toll on me. It is exhausting and there is no way to get away from it. Because we have so muc trouble controlling his ammonia we are now bumping his rate one day and then holding a day to give his body a chance to adjust. It just means we are stuck here that much longer. He had a pretty good day yesterday until last night. We were trying a new laxative to replace miralax. It is supposed to bind ammonia so we thought it might be really beneficial to Alex. Well, it bloated his little belly so badly his was miserable. He cried and fussed and screamed for 2 hours at bed time. Needless to say we WILL NOT be using that again.

Pleas​e say extra prayers for Landon today. Hr is getting his new central line. If this line gets infected they have no options left. There are no more places to put one. It is literally his life line. Understanda​bly, a scary day for Jen and the whole family. Pray for me to have the strength and peace of mind to say and do the right things to be there for her.

Ali

Things are going okay here. Alex's belly is doing really well on half strength feeds. his ammonia levels are starting to rise again and that makes him irritable. We are at 20 cc's an hour of half strength formula. We will keep everything the same tomorrow and see if his ammonia levels stabilize. The plan is to increase to his goal rate of 55 cc's an hour while at half strength formula and then try to increase the concentrati​on until we get to full strength. So far this is the most progress we have made.

I am really struggling with the nurse situation! Who our nurse is can completely influence whether we have a good or bad day/night. For the most part we are ecstatic with the day shift. Other then one or two days we have had the same group of nurses who have been so wonderful to both me and Alex. The problem has been overnight. We have wound up with new and/or training nurses foir several nights. They are perfectly nice, but unfortunate​ly when they aren't comfortable with everything they turn on ALL the lights every time they come in and if they are training they talk. So Alex and i are gettting no sleep. The other issue is with the overnight PCA's. Several of them were repeating Alex's blood pressure up to 8 times in a row overnight and his temp several times as well. Needless to say Alex is now not wanting to have his vital signs done. And those of you that know Alex and I know how crabby we are when we don't get enough sleep. We have put signs on the door with reminders about how low Alex's temps and blood pressures are overnight and asked to be respectful about lights/talk​ing, but we are still having ttrouble. i am praying that this improves because it makes such a difference in how i feel and cope with being here.

Landon is still holding his own. The plan is to extubate in the next few days.

On a positive note...I have convinced Dr. Koenig to give us a day pass for a few hours on Saturday. We are going to go to the zoo. We will probably be allowed to be out for about 3 hours. We are so excited!

Ali

We are having a really good day! We switched to half strength feeds last night. We were able to get to 15 cc/hr in the J tube today with no stomach pain. He is playing and his spunk is back.

The only bad thing is that Alex's back, shoulders, and chest are covered in a rash. He has had it for a couple days, but despite benadryl and hydrocortis​one cream it continues to get worse. We don't know what he is reacting to. Poor baby is so itchy!

Thing​s are getting back to normal around here. The nurses and doctors are gettting back on regular schedules. Unfortunate​ly, the city is still a complete mess.

Landon is holding his own. He is still on the vent, but plans are to come off this weekend.

We still do not know when we will be home. My best estimate is in 2 weeks. I am so sick of the hospital. I am just bored and ready to be in my house and my bed. Alex has been such a trooper through all of this. He has had his moments, but being in the hospital for a month could make anyone irritable. He loves "his" nurses and seeing his "friends" (the child life girls). He is spoiled ROTTEN, by everyone here.

Thanks to everyone who has sent cards, packages, and called or emailed words of encourageme​nt. They really are appreciated even if I can't always let you know. Please keep the prayers up.

Ali

Pretty boring the last few days. Alex is still having stomach and leg pains everyday. We have decided to try half strength formula to see if that can help. Other then that things are still the same.

Ali

We weathered the storm and are just relaxing. The hospital sustained some damage but we were safe the whole time.

Alex is hanging in there. Same old Same old...his belly would much rather not be fed, but we cannot stay on TPN forever without causing liver damage. Dr. Koenig and I hate this because he looks and feels so much better on the TPN. We are just creeping up and hoping to gain some ground. Unforunatel​y the slower we go the longer we are stuck here! I will do whatever is best for Alex though. We conintue to be surrounded by the most warm, loving poeple. Alex has them wrapped around his little fingers. Every time I leave the room and come back he has found someone to invite in to chat with. He loves tp push the nurse call button and harras his nurses. He plays tricks on the new nurses and convinces the doctors to take him on the staff elevators. He is so full of life and spunk which is so good to see around here.

Landon is sedated and resting comfortably. The plan is to let him rest for 7-10 days before trying to get him extubated. They continue to need your [rayers.

Ple​ase pray for the families in the area. Several of our facorite nurses lost houses. Dr. Koenig sustained damage to her house. The whole area is a mess.

Ali

So far we have seen very little effect from the storm. The bad part is just ahead of us. We are prepared and anticipatin​g the wind and rain.

Alex had an off day today. He ran a low grade temp, had high blood pressure and didn't want to walk. We are hoping it is just coincidnce and has nothing to do with starting feeds. I will keep you updated.

Ple​ase keep Landon, Jen and their family in your prayers. landon has taken a turn for the worse and is being moved to the PICU to be placed on a ventilator. The hope is that it will allow his body to rest so it can better fight this nasty infection.

We are hunkered down and prepared to survive Ike tomorrow! Buggy's first hurricane.

A​lex is doing really well. He has had a low grade fever since surgery (which we completely expected), but feels good. We are starting feed into the J part of his tube ( his small intestine) tomorrow at a very slow rate. Dr. Koenig insists that we have to take it one day at a time. They cannot make any predictions about if this will work or how fast we will be home.

Landon is VERY sick. Please keep jen, landon and there entire family in your prayers.

Ali​
PS- There is a good chance we will lose internet and phone service so if you don't hear from me I will update as soon as I can.

Alex is out of surgery and doing well. We are back in th room and just relaxing.

landon is also doing okay.

Thanks for the thoughts.

Al​i

Two quick prayer requests...​
1. Buggy's surgery is scheduled for around 12:30.

2. Landon spiked a fever of 103 last night. Jen is very worried and stressed. They were set to go home on Tuesday after 60 days here.

I will update later today once we are back to our room.

Ali

Last night was pretty good!!! Alex fell asleep around 10:00 and slept till 8:45 this morning. I git to sleep in a real bed. Jen (Landon's Mom) had gotten a room in the Ronald McDonald House that is right on our floor. It is normally only for ICU parents , but b/c Jen and Landon have been here so long they made an exception. Jen was gracious enough to let me sleep in the room last night. I fell asleep around 11 and didn't open my eyes until 5:30. It was much needed.
Jen and I are having a rough morning. One of the PCA's (who check vital signs) does not like us and is giving us a hard time. She has complained about us. We have no place to eat. They won't let us eat in the waiting room, we can't eat in the boy's room b/c it isn't fair to them and now they won't let us sit in the hall at the end of the nurses station. We have to stay on the floor b/c doctors are constanlty rounding and need to see us. It is just really frustrating.​
More later after we see the doctors.

Ali

We are continuing to have trouble sleeping. Every naptime and bedtime is a fight. It is so hard for me to adjust to having my good sleeper struggle to fall asleep. I am nearing the end of my tank. I desparately need a good night's sleep to recharge. The main problem is Alex's legs are restless and hurting. We finally have a prescriptio​n tonight if it does not get better.

Alex also has a rash on his upper back, neck and ear. We are not sure what he is reacting to but it is his typical allergy rash.

SUrger​y to switch Alex's gtube is scheduled for Wednesday. I do not have a time yet.

On a good note...Alex got a hair cut on Sunday. He looks so much better. Then today the child life girls took him on a field trip. We got to go up to the roof to see the life flight helicopter. It was SO COOL!!!!! We even got to sit in the pilot seat. As soon as I get the pictures I will upload them!

Please pray for calm unhurting legs and sweet dreams tonight.

Ali

Pretty uneventful day...just a lot of sitting around and movie watching. Oh and a BIG PIRATE WIN!!!! Hopefully tomorrow will go quickly.

Ali

The power of prayer is a good thing! Alex had a great night last night. Let me back up...Alex started having diarrhea again yesterday. Finally late yesterday afternoon Dr. Rhoads our GI decided to drop Alex's feeds to 10 cc's/hr. Low and behold the poops stopped (which I knew they would) and not only that but his ammonia levels dropped by half over night. Alex slept from 9 last night until 10:30 this morning. He had a great day. He finished up his EEG around 1:30. He had Physical Therapy around 2:00 and then played football in the hall wiht his nurse and a few doctors for a little while. By the time 3:30 rolled around and we gave him a bath and hooked his TPN and feeds back up he was wiped put. He was sound asleep by 5:00! I asume he will sleep until around 6:00 tomorrow morning.

We have been so lucky to have our favorite nurses caring for us day after day. It makes our days so much more enjoyable to have people we like surrounding us.

The weekend is once again upon us and that is always hard. The days seem so long when there are no doctors or tests to break it up. Alex and Landon are gettting there haircut on Sunday afternoon so that should be good.

Thanks for keeping us in your thoughts and prayers.

Ali

A pretty quiet morning this morning! Last night was another hard night. We finally understand Alex's irritabilit​y and trouble sleeping. His ammonia levels continue to rise. It is caused by Alex having trouble metabolizin​g the TPN. However, he needss the TPN for his nutrition so we are kind of stuck. Dr. k feels pretty strongly aboutn not giving Alex anything to help him sleep since we know the reason for it and we know what a GREAT sleeper he is at home. However that leaves both of us really exhausted. We only got 4 hours of sleep last night. His legs will not settle down to let him rest. Poor baby.

We are having a 24 hour EEG today to watch his brain waves and see if we catch any seizures. We are expecting it to be completely normal. Dr. K and I both think that Alex will have seizures when his body is very stressed or he is getting sick, but noth normally. We will not treat them if this is the case.

Alex's surgery to change his button is scheduled for next Wednesday. We will be discharged sometime the following week.

Please continue to pray for us. Specificall​y for Alex to be able to rest so we will both feel better.

Ali

Oh,I forgot...

A lot of people have asked for our address. It is:

Alex Beckwith

Chi​ldren's Memorial Hermann Hospital

641​1 Fannin St

9th Floor Room 23

Houston, TX 77030

Also, for those of you who have called please be patient if I haven't called back. We have so many dr's and nurses in and out that it is hard for me to get any calls done.

Ali

We are still sitting tight. We had a complicatio​n come up today. We have been watching Alex's blood counts the last few days. Alex is always anemic, but his counts have been dropping the last few days. Well after this mornings labs his counts came back extremely low. We wound up having to do a blood transfusion this afternoon. Alex did great. We have watched him really closely to ensure that his temperature​, blood pressure, and heart rate were okay and he has been fine. We have been fine all afternoon. We will be done in 45 minutes.

I will continue to update.

Ali

My sweet angel was so good all day yesterday. All of your thoughts and prayers must have worked yesterday!

A​lex had a gastric emptying scan yesterday. Basically a test to see how fast his stomach can empty. His belly should empty fluids in about a half hour. After 90 minutes, Alex's stomach had only emptied 3% of his 4 oz of formula. This explains why we have so much stomach pain and why we can't increase our feed rate.

The plan is to put in a different tube that bypasses his stomach and goes directly into his small intestine. We are not sure if this will fix the problem, because we don't know if his motility is any better farther down the GI tract, but it doesn't hurt to try.

We will be here at least into next week.

Love you,

Ali

Feeling a lot better although still exhausted! My sweet angel is back and his evil twin has left the building. Coincidentl​y it happened when we backed down on his feeds and then stopped them all together. We think he isn't verbalizing when he is in pain. The question becomes what to do about the feeds. I will update again once we see Dr. Koenig and have a plan, but I did wan to let you know that things are looking up. All the prayers are working...K​eep them coming.

Ali

Wow it has been a rough few days. I am asking for everyone to please pray for both of us. I am at my breaking point. I am not sure what is wrong, but Alex is not himself. We are not sure if it is medical, behavorial, frustration​, pain, lack of sleep or all of the above but he is just not right. I have seen glimpses of my sweet angel the last few days, but I have seen more moments of a child I do not know and it has not been fun. Alex will can not sleep, he is hitting, kicking, throwing, yelling and he physically attacked me and sratched my neck down both sides yesterday. We are almost positive their is a medical cause behind this beciase it is so out of character, but it is so hard. I have just had to walk away numerous times. Thank goodness Jen is here. She has calmed his down numerous times. It has boiled down to pain a few times and a fever after the bad incident, but we don't what the "main" cause is. I am just exhausted and have knots in my stomach. I am so anxious for Dr. Koenig to get here this morning.

Ple​ase pray for me to have patience and kind loving words for Alex and for him to be able to tell us what is worng.

Ali

I keep forgetting the BIG NEWS.... Alex has NO pacis anymore!

Ali

The weekend days are LONG in the hospital! Things are trekking along. At this point all signs of infection are gone. His feeds are up to 15 cc/hr. (1/2 oz) He is having quite a bit of gas and bloating and some stomach pain, but the doctors are having us try to push through. His TPN is also still running. It is a really delicate balance between his metabolic labs and trying to get the right nutrition in him and keeping him comfortable. It is like walking a tightrope.

I will continue to update.

Ali

Sorry I was in the internet dead zone from hell! I moved rooms and have asignal. I am so happy to be able to be back online.

Alex had a much better day yesterday and that has continued into today. We are having severe temp drops overnight. We are having to warm him with hot blankets. Other then that we had one lab that was pretty bad this morning, but was better when we repeated it.

Still looking good for late next week. Fingers crossed!

Ali

As I mentioned yesterday, the signal stinks so bear with me. Yesterday was a rough day, Alex was extremely weak and lethargic. He never got out of the bed all day. He is much better today. We have already been to the playroom and are happy. Not much news just trying to get our tummy going.

I'll let you know when I hear something.T​hey are telling me best case scenario is coming home late next week.

Ali

My internet was acting crazy last night so I didn’t get to update. All in all yesterday was a pretty quiet day. Dr. Koenig and LaKeesha came by in the morning for a while. I don’t have nearly as many questions now. It is more like friends coming for a visit. She asked me about doing some media stuff for her. I told her I’ll talk to anyone as we all know!!!! Basically at this point we are just watching Buggy pretty closely and praying his belly will start working. Blood pressure was EXTREMELY low around 4:30 yesterday afternoon and then we took his blood sugar and that was 48 which is also really low. I always joke with the doctors and nurses that he doesn’t lime to give us a moment of peace. We bumped his dextrose until his TPN was ready and he was fine. He has done great so far on his TPN. It needs a lot of tweaking. They have been really cautious because of his history of reactions. Right now his TPN has No vitamins. We will add those today. WE can also add an IV form of his reflux med right into his TPN. The second part is his lipids or fats. They were extremely concerned because those are egg based and Alex is allergic to eggs. You “shouldn’t” react because it is purified and all that, but you never know, however Alex has done great. But in typical Alex fashion we couldn‘t go 24 hours without some excitement. Things were going great until 4 am. Alex’s blood pressure was 68/21 and then 65/24. His blood sugar was okay. His rectal temp is 95.3. We just gave him additional IV fluids and his blood pressure has come up some, but despite being wrapped in warmed blankets his body temp is not coming up. We are not sure what the problem is. They are running more blood cultures this morning. They have seen some mito kids have their temperature​s drop when they have an infection instead of rise. Their fear all along because Alex broke out in spots for so long is that the infection is in his body just sitting somewhere. Once I see Dr. Koenig I will update again.



We changed rooms late this evening. We really liked our room, but they had a room open 2 doors down from Jen and Landon so we moved over here so Jen and I could be closer for support but still keep a close eye on the kids.



I had a good day. I spent about thirty minutes this morning with two of the child life girls chatting and laughing while Alex played in the playroom. Then this afternoon I spent about an hour with three more girls chatting and having a good much needed cry. So Kelly, Laura, Stacey, Ginger and Leigh Ann THANK YOU!!!!!!!! You guys make this so much more bearable and enjoyable for both me and Alex I am so blessed to call you girls my friends. And as much as we dread coming down here we are happy to see you too. For those who don’t know what I’m talking about. Alex said 2 things when I told him we had to come back. One, W had to come to Houston “because Dr. Koenig missed him SO much” and two “ those child life girls are going to be so happy to see us”.



Anyway, Please keep us in yours prayers. The internet is really finicky so bear with me.

Ali

I SLEPT!!!!

The first thing I need to say is that we are so very fortunate to be surrounded by so much love and support. Our family and friends continue to rally around us and show their love in so many ways.

We are truly blessed to have found a Dr. like Dr. Koenig. She is one of a kind. She is a kind, compassiona​te woman who has complete trust in the parents of her patients and who also happens to be one hell of a doctor. She is able to explain so many things thatno one has been able to explain for four years. It is so reassuring to me when she can help me understand why a lab is off or why Alex's body responds in a certain way. when it makes sense it is just plain easier to take.

We are starting Alex's TPN tomorrow. It is much needed. Alex was down to 27.5 lbs tonight. I was appalled to see a 27 on the scale. We have worked so very hard for every hard earned pound and they fall off so easily. It will take us a long time to get those same pounds back on. We will be here at least into next week. Dr. Koenig does NOT want us to come home on TPN. TPN can be very damaging to the liver and kidneys. It is not meant to be used long term. They will be checking Alex's labs daily and making sure he is doing okay. Depending on how quickly Alex's belly responds to accepting feeds will determine how long we are here.

We also saw Infectious disease and dermatology. Both agree if we get any more spots we will biopsy them.

GI wants us to do one more test to sdetermine what we will do about the reflux surgery.

I think that is most of it for today. Alex was pretty quiet and lethargic today. He wanted to stay in bed other then the two walks in his stroller we took. Hopefully he will feel better once he starts getting some nutrition.

M​ore tomorrow...​
Ali

This is purely a vent and nothing more...

Dr. Koenig put Alex on the IMU to watch him more closely and so Jen and I could be more support to each other since we are both here by ourselves. I forgot how much I hate this unit! As bad as it is on the regulas floor with them coming in every few hours for vital signs and meds. On the IMU, in addition to that Alex is hooked up to continuous heartrate, oxygen saturation and resperation monitors. Well, Alex's "norms" are not normal so the monitors beep every ten minutes all night long. Really conducive to sleep huh? Can we go home yet?

Here's what I know so far...We will see GI, Infectious Disease, Immunology, Dermatology​, and of couse Dr. Koenig. Some of Alex's bloodwork has already come back off. We have 2 separate issues that we dealing with. The spots which are some sort of infection (we are not convinced it is folliculiti​s at this point). And the fact that Alex cannot tolerate his feeds. We have to get nutrition into Alex. The most likely plan is to start the TPN or IV nutrition tommorrow. If that happens we will be here at least through the weekend. I have a computer with me so I will keep you updated.

Buggy is in good spirits and feels very much at home here. Please pray that he does not have to endure any painful testing. I am doing okay. I am just really tires from all the travelling and lack of sleep the last 6 weeks. Please pray for my body to hold up and for my mind to quiet at night so I can rest and recharge. The hardest part for both Alex and I is the boredom that sets in after a day or two. The nurses and child life girls try to keep us entertained​, but we're a hard sell! The days are long!

Ali

We are safely in Houston! I will update tomorrow after talking with all the doctors.

Ali

We are off again! Dr. Koenig emailed today and in her words "that boy can't live on sugar water". We are heading back to Houston in the morning. They are going to put him on TPN or IV nutrition for a few days and get a few pounds back on him and run some tests to try and figure out what is going on. Alex still doesn't feel bad. His belly just won't work.

Please keep us in your prayers.

Ali

We are still kind of in the same place. Alex is not doing great, but we are hanging in there. Dr. Koenig is back in town this weekend so we will touch base and see where we go from here. Alex has been on IV fluids since Wednesday. We are going to attempt some VERY slow half strength feeds this morning. He has been such a trooper. It has been a hard week for both of us. He has been tethered to an IV pole. I am sleep deprived. Having to give meds around the clock. And the house feels like a hospital ward. We have been able to fool ourselves into believing Alex really isn't very sick, but it isn't very easy to do that this week. As always, my buggy has handled himself with more grace then anyone I know. Always a smile on his face, whether I am coming to stick him with a needle for the tenth time that day or wake him up for the fifth. I am so very proud of him.

Ali

We are happy to still be home! I am so thankful for Alex's port. We have switched Alex to Iv fluids and stopped is feeds once again. Immediately his temperature and blood pressure returned to normal. This just verifies what we were thinking...​Alex's stomach is not working right now. We think because he is still fighting the infection he picked up in NC. With mito it all comes down to energy. Alex's body doesn't have enough energy to fight the infection and digest any food so his body is having to work too hard thus increasing his blood pressure and temperature. We will wait a few days and try again.

Thank​s for all the prayers.

Ali

This child is going to be the death of me! He finally had a poop last night...wat​ery diarrhea again. And all of his vital signs have been off for 2 days. I am in contact with Dr. Koenig's nurse. Dr. K us out of the country until the weekend. I am just praying we don't have to go back down to Houston.

I'l​l keep you posted,

Ali

We are safely home. Alex is happy to be back and playing with his toys. I am exhausted. I barely moved off the couch all day yesterday. For those of you who have never been in the hospital let me explain what it is like. This is how our last night played out (pretty typical):

10 pm check blood sugar

12 am check vitals

2 am give a dose of benadryl

3 am check blood sugar

4 am check vital signs

5 am start antibiotic

6​:30 am first Dr. comes in.

So as you can see sleeping is nearly impossible. As soon as you start to dose off you are woken up again. I slept like a log the last 2 nights. Anyway, I will update more about our trip in the next few days, but wanted to let everyone know we are home.

Ali

We are waiting for the Doctors to come discharge us, but in typical Alex fashion we had to have a little excitement first! Alex had a pretty bad seizure last night. Luckily the nurse was in there with me. I had the oncall doctors call Dr. Koenig. She is okay with us going home. She is giving us medication in case it happens again. We will come back in September for further testing.

Can'​t wait to see and talk to everyone.

Al​i

Woohoo! We are coming home in the morning. Alex's belly is doing pretty well. There is still sme concern that he is getting new spots. We are going to come home and finish our course of antibiotics there with the knowledge that if we get more after we finish the meds we will have to come back.

Other good news is that his heart still looks good. They saw some kind of regurgitati​on in the heart, but they are not worried.

Ali

We are doing better! We are anticipatin​g being discharged tomorrow. Alex's belly is SLOWLY coming around. We are up to a little less then an ounce an hour of half strength formula.

As of yesterday, Dr. Pacheco did not want to do IVIG infusion this illness. Alex got a few new spots yesterday which is concerning after 13 days of a strong IV antibiotic so we will see if that holds true today. The only other news from innumology is that he lost all of his titers or antibodies to his pneumoccal vaccine for a second time. This is oncerning because it means we really do have immune problems.

We met with GI yesterday. As most of you know I have really struggled with the GI team here. I won't go into details yet b/c I am still figuring everything out, but the surgery is on hold for right now. In the meantime, we are doing some more testing to be sure that Alex's stomach and chest pain is definitely caused from GI issues and not something we are missing.

We had an EKG and an echocardiog​ram of his heart this morning. No results yet.

We are expecting to meet with Dr. Koenig, Dr. Pacheco (immunology​), and an Infectious disease doc today. Once that all happens and we get Alex's feeds going better we will be out of here.

Thanks for all the prayers and love. As always, Alex has been a real trooper.

Ali

So much for our "easy" trip to Houston this time! It looks like we could be setting up shop for a little while. Our plan yesterday was to start with sugar water through Alex's Gtube at a very slow rate and slowly bump up every 2-3 hours. We started at 11:15 yesterday and did well with our first 2 rates which were laughably slow (less then an ounce an hour). At 4:30 we went up to 50 cc/hr which is a about an ounce and a half an hour. At 7:30, Alex's cheeks were starting to look flushed and he felt warm, but his temp wasn't too high yet. At 8:30, he had spiked a fever and was complaining of his belly hurting. So we are back down to 20 cc/hour and waiting to hear what the next plan is.

We are waiting to see Alex;s immunologis​t. We saw her resident yesterday adn are pretty sure we are going to be doing an IVIG infusion. This is replacement immunoglobu​lin to try and help his immune system. Alex's immunoglobu​lins remain low and since he is having trouble fighting this infection it looks like this will be needed.

We are supposed to see both GI and Surgery today. They are trying to decide if we should just do the fundo (reflux surgery) or if he will also need another procedure at the same time called a pyloroplast​y. That helps things move faster from stomach to intestines. We are hoping to schedule the surgery sometime in September.

I​n good news...Alex feels pretty good. he is charming all the nurses and doctors. He loves going to the playroom and seeing his girls from child life. Child life (responsibl​e for making hospital visits as easy as possible) fell in love with Alex our first visit here in February and have been wonderful to us ever since. They are so sweet to Alex and bring him everything he wants. We are also happy to have Jen and Landon in the hospital with us. Landon had his muscle biopsy the same day as Alex and Jen and I have been friendly ever since. Landon has the same rare complex III mito disorder. Right now the boys are not allowed to see each other because Dr. K doesn't want them to get each other sick. There are a LOT of similaritie​s between the boys although Landon is sicker then Alex. Jen and I have been sneaking downstairs to get coffee, lunch and dinner together every day.

Jen and another friend Melody brought me take out and cupcakes last night for my birthday. It was fun to sit "at the park" in the hospital and have real food and chat with friends. Aunt JennJenn, Uncle Jimmy and Skye Skye sent me and Alex balloons. Child life brought me a balloon, card and flowers. So I got to at least have a little "celebration​" on my birthday. THANK YOU GIRLS FOR MAKING MY BIRTHDAY SPECIAL!

We had a good appointment with Dr. Koenig. Alex loves all his doctors, but asks all day for Dr. Koenig. She "tried" to explain some of the genetics to me. Genetics is the most confusing stuff ever so I won't even try and explain what I got of that. She is a little concerned about Alex's amount of sleep increasing so much over the last few months. When we come back in October we are going to do a sleep study. But we think it is just progression of the disease. We will also see pulmonology and Cardiology in October for routine yearly checkups. (We are NOT concerned about heart or lungs). The "blinking episodes" we were seeing she thinks are seizures, but they have subsided for now and were not the type to cause any damage so we will keep an eye on it, but are not planning on treating. That was pretty much all of the highlights.​
Once I see our ped team and Dr. Koenig this morning I will try and update and let you know where we stand.

To all of those that called....I am so sorry i didn't get to call you all back. All of the calls and emails are appreciated.​
Love,

Ali

The fun continues... We tried to start Alex's feeds this morning at half strength and a very slow rate. He got a fever not long after so we had to stop feeds. We are going to stay on IV fluids tonight and try again tomorrow.

The pediatricia​n's are pretty sure that his spots are folliculiti​s. We are starting 5 more days of IV antibiotics to try and kick it.

We are off isolation and allowed out of our room so that was great news. Also, Dr. koenig said that Alex's EEG was normal so his brain still looks good. YAY!!!!

Dr. Koenig will be by tomorrow morning to sit with us for a n hour or so and go over all my questions/t​est results etc. We are definitely doing the fundo at this point. Alex is in a lot of pain and is pointing to the center of his chest every time we ask where it hurts. We are hoping to see surgery tomorrow and do the surgery some time next month.

More tomorrow...​
Ali

Alex was admitted to the hospital in houston last night. We think he has a virus. He has diarhea, stomach pain and a sore throat. He was not tolerating his feeds so his doctors were concerned. He is on IV fluids and we will monitor him today. In the meantime, Alex is breaking out in spots again. So we are also trying to decide what to do about that.

We did do Alex's EEG yesterday. I have not discussed it with Dr. Koenig yet, but the tech told me they saw no seizure activity, but some abnormal brain spikes. I am not sure what it means at this point. We are expecting to see Dr. koenig and an infectious disease doctor today.

The hardest part right now is that Alex doesn't feel that bad so it is hard to be cooped up in the hospital. And we aren't even allowed to hang out with Landon or go to the playroom because we could be contagious. Jen and I did have lunch and dinner together yesterday so that was a nice treat.

I will update later with more news.

Ali

We are in and out...Our flight last night was delayed. We finally walked in the house at 1:00 AM. After a long day of bill paying, laundry and packing we are ready to head off again. We leave at 6:30 tomorrow morning for Houston. We have a full week of appts. I will attempt to update from the hotel, but it is hard without a computer.

Ali

Just wanted to let everyone know that we are doing well. Alex has done great on the antibiotic ever since adding IV benadryl. As some of you know, Alex is allergic to dextrose. When I looked at the bags of medication they were mixed with benadryl so we are pretreating with the benadryl and he is fine. It is nice to know we finally have an antibiotic we can use. We are all feeling better and our spots are FINALLY starting to fade. We are just trying to enjoy the last few days of vacation before we are back to real life.

Ali

We are hanging in there. Mom and I are starting to feel better, although we are still covered in spots. Alex started his medication today. We accessed his port and he will get IV antibiotics twice a day for the next 10 days. Alex had a reaction to the first dose. Pretty much par for the course! We are waiting to hear back from Dr. Koenig, but will most likely just give him tylenol and IV benadryl before each dose. That is pretty much it. We are continuing to enjoy ourselves and will get out and start doing stuff now that we are not contagious.​
Ali

The plot thickens... We DO NOT have Chicken pox. We have a bacterial infection called pseudomonas folliculiti​s. Mom and I are going on a strong antibiotic. I am waiting back from Alex's doctors in Houston as to what we need to do with him.

I will keep you posted.

Ali

I know one thing for sure, we never have any lack of excitement around here!

First, we are having a great time in NC. Jenn, Skye and Grandpa were here for the weekend. We have been to the waterpark, the beach and the alligator farm. We even roasted marshallows!​
Now for the not so good news... The day before we flew here Alex got a few red spots on his face. We weren't sure what they were but we assumed they were bug bites. I checked with Dr. Koenig and she ok'd us leaving. Fast forward to Saturday, Mom and I started breaking out in red spots. We all 3 have chicken pox! Alex has also been having some "episodes" of repetitve blinking. I spoke to Dr. Koenig today. She is VERY concerned. If we were in Texas she would admit us to monitor him. Because I am here I am watching him very closely and will leave at the first sign of Alex not doing well. Dr. Koenig's main concern is that these episodes that she feels are seizures started around the same time of all of this. We are praying that Alex holds on so we can finish our vacation.

We will head to Houston a day earlier then planned. She will do an EEG and possibly an MRI and spinal tap.

Please pray for Alex. I will keep you updated.

Ali

We leave tomorrow morning... The craziness never ends! We got back the bloodwork we have beem waiting on. They found 2 mutations and 33 polymorphis​ms or changes on Alex's mitochondri​al DNA. The next step is to test my blood. If I come back with the same changes then it is conclusive that these are the changes causing Alex's mito. One of the mutations has been seen before which is important because it might help Dr. Koenig know which organs are more likely to be effected. We have to head back to Houston as soon as we get back from NC. We will sit down with Dr. K so she can explain more of this to us. We will also see the GI, immunologis​t and have the Gastric emptying scan. At that point we will make a definite decision on the surgery.

I will update from NC.

Ali

We are home!

We saw the GI on Friday. We are trying an additional medication as a last ditch effort to avoid surgery. We have also scheduled a test to be done. They are also trying to schedule yet another dr. appt with a pulminologi​st and a sleep study to see if his reflux is causing any breathing problems. We follow up in August. By then the GI will have spoken to our surgeon and we will make a final decision.

It was nice to see Mariah and the girls and meet Mariaj's mom, Carol. We all shared a hotel and it was just really fun. Of course we are all exhausted. Mariah and I were like two little girls having a sleepover. We talked into the early morning every night. We can't wait for October to see you guys again.

Alex and I have a quiet day tomorrow to unpack, do laundry and repack, then we head on vacation! We are so excited. We are flying into Raleigh and driving with Dad down to Shallotte to see Mimi and PopPop. Aunt JennJenn and Skye Skye will also be there for a few days. Dad and Jenn and Skye will all leave after the weekend. Alex and I will be at Mom's until August 7th and then back to Raleigh for 2 days before we head home.We will see Dad again the first wekend of August as he heads back to myrtle Beach. This is a much needed vacation for both Alex and I. Going to NC is always such a good break from medical stuff for both of us.

Please pray for safe travels.

Ali