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