Landon Joines' Update Blog

NEW WEB SITE!

2009-07-22T20:47:00.002-04:00

This will be the last post that we will make to this blog site.

COTA has Landon's new web site up and running. There is a blog page on that web site that we will be posting updates to. Please follow the link to Landon's web site and register with the site to receive updates. The web site will grow and get better and better.

Landon has just turned three months old. His story has just begun and this miracle is still unfolding. We hope that everyone will continue to follow Landon's story on the new web site.

Here is the link http://www.cotaforlandonj.com/

Sunday's Meeting

2009-07-20T08:04:00.002-04:00

The organizational and training meeting went well. Landon was able to attend and everyone enjoyed meeting him.
The next step is to begin organizing committees for different events and fundraisers. One of the first fundraisers will be putting out coin boxes at convenience stores and other locations. One person would be responsible for putting out as many boxes as they can handle, going back each week and collecting the money, and moving the boxes about every four weeks. I have the boxes and all the information. If you would like to help with this project please contact me. I am also looking for a couple tents or canopies to be used at the various festivals that are taking place. We will be setting up a display to give out information about COTA and Landon, setting up a big donation box, selling COTA wrist bands, maybe selling other items that might be donated to Landon's campaign, and conducting fun activities at the festivals. If you would like to participate in a festival let me know and we will make the arrangements. We will begin planning other events and can use all the help possible. If you have ideas for events or fundraisers please let me know.
We can now begin organizing in Alexander County and any other county that we have a connection to. We had to get this training meeting done, with COTA, before we could begin fundraising activities.

COTA Campaign Meeting

2009-07-19T07:14:00.002-04:00

Everyone is invited to the meeting today to begin organizing our fundraising campaign for Landon. COTA is sending a representative here to help us get organized and to do a training session. The meeting begins at two o'clock this afternoon and is at the Sparta First Baptist Church, in Sparta, NC. Call me if you need directions 336-572-9218.
Kathy and Shelly have made refreshments and someone will be there to watch children, if you need to bring them. We have made a short video, of Landon, to show at the meeting. We are also hoping that Landon will be able to make an appearance. He is here with us and got a good night's sleep so I think he will make it. This is going to be a fun and rewarding project for everyone that gets involved.

Landon is in the Papers

2009-07-15T23:16:00.002-04:00

The newspaper article about Landon was published in this week's paper and hit the stands this afternoon. We are very pleased and think the article is good. You can view the front page at this link http://www.alleghanynews.com/. Unfortunately you can't read the entire article online. If you would like a copy let me know and I will pick up extra copies and mail one to you.
We are getting excited about the meeting this Sunday. We have received another box full of goodies from COTA. We can't wait to start planning all of the fun events to raise funds for Landon.
Remember 2pm Sunday at the First Baptist Church in Sparta.

Newspaper Article

2009-07-10T08:18:00.002-04:00

The newspaper called and said they have the article finished and ready to be published in next week's paper. We are going by this morning to take a look at it and make sure everything is correct. It should be in Wednesday's edition of the Alleghany News.
We received a package from COTA. The package contains some of the materials we need to kick off the fundraising campaign. It also has examples of what other families have done. It's exciting and fun stuff.
I noticed that someone has made the first donation to Landon's trust fund. That's great! It's a start.

Fund Raising Campaign

2009-07-06T22:26:00.003-04:00

The date, time, and place have been set for the organizational meeting for the fund raising campaign. The meeting will be Sunday July 19th at 2 p.m. in the fellowship hall of the Sparta First Baptist Church, in Sparta NC. The church is located at 202 South Main Street in Sparta.
For Landon to get a transplant, the expected expenses for Landon's family are at least $75,000. We are not a wealthy family. We must conduct a fund raising campaign to get the money needed to make a transplant possible for Landon. We will be working with the Children's Organ Transplant Association, COTA http://www.cota.org/COTA.php . COTA is sending a lady to the organizational meeting to help us get started. The campaign to save Landon will be conducted in every county that we have any connection to or that we can organize in. We will begin in Alleghany and Alexander Counties and expand from there. I really hope that we can get some folks from Alexander to attend this first meeting. It will be of great help, when we begin to organize in Alexander, if we have a few people, from Alexander, that are familiar with COTA and what we need to do. Everyone from anywhere that is interested in helping us make a miracle for Landon is invited to attend this meeting. This meeting will be over by 4 p.m. Please mark your calender.
My goal is to not only raise the funds needed, for Landon, but to make this a fun and rewarding experience for everyone involved.

Transplant Surgeons Meeting

2009-07-05T22:04:00.005-04:00

The transplant surgical team, in Boston, took a look at Landon and had a meeting with Jeremiah and Shelly before they left Boston. They gave Jeremiah and Shelly their opinions about Landon's situation and discussed what the future might hold for Landon. They agree that Landon needs a small intestine transplant. The fact that Landon has virtually no small intestine means that Landon cannot eat and absorb nutrition. He cannot survive without intravenous feeding. His only chance at a long, some what, normal life is with a transplant. They also noted that Landon's liver is already slightly enlarged and that is likely that he will need a liver transplant as well as a small intestine transplant. They noted that we are doing everything possible to save Landon's liver and to delay a transplant as long as possible. They agree that this is the best approach. The bigger and stronger Landon is when the transplant is done the better his chance of surviving. If we can save his liver and only do a small intestine transplant and then the small intestine transplant goes bad we have the option of removing the transplant and looking for another small intestine. If his liver gets bad and we have to do a liver transplant then the option of a re transplant is not available. The surgeons then brought up this option. If Landon's liver goes bad and we have to seek a liver and small intestine transplant then we should consider doing a small intestine, liver, stomach, and pancreas transplant, all from the same donor. They stated that the survival rates seem to be better for patients that have the multivisceral transplant done.

They also discussed the research that is currently taking place. Researchers are experimenting with growing organs for transplant. We don't know what the future holds and the longer we can put off a transplant the better.

Kathy and I drove down and attended services at the Stoney Point Baptist Church with Jeremiah, Shelly, Roger, Ezekiel, and Landon, today. This is the church that Shelly's family attends. The Pastor from Stoney Point Baptist Church, Reverend Phil Addison, was with us, at Baptist Hospital, when we first learned about Landon's condition and were told that Landon was going to die. Reverend Phil prayed for Landon, that day, at Baptist Hospital. The congregation at Stoney Point Baptist Church has been praying for Landon ever since, as have dozens of churches around the country. We would like to thank each and every church and visit with each and every church. Thank you.

Landon is home from Boston

2009-07-04T15:32:00.002-04:00

Landon came home from Boston, yesterday. It was a very stressful day for all of us and culminated with the airline needing to declare a medical emergency to get Landon off the airplane in Charlotte.
The doctors in Boston have been taking Landon off of his IV feedings for several hours each day. They monitored him while he was off his IV to make sure that his blood sugar did not drop and that everything else is OK. There was a problem, in Boston, getting Landon the PN solution to take home. They needed to get if from Baptist hospital in Winston and have it delivered to Jeremiah's home. So they decided to stop Landon's IV feeding at 12:30 allow him to fly to Charlotte without the PN. His flight was due to arrive at 5:30 which would have him off his feeding for five hours. He has been off for as long as eight hours but that was while he was being monitored. Kathy and I went by Jeremiah's home and picked up the PN and supplies and took them to the airport so that Landon could be connected as soon as he arrived. If everything would have gone as planned we would have been OK. It didn't.
The plane was an hour late leaving Boston. When they arrived in Charlotte planes were already docked at the terminal and they could not get off the plane. They were forced to sit on the plane for nearly an hour. By then it was approaching 7:30 and Landon had been off of his IV feeding for nearly seven hours. Jeremiah and Shelly began to notice that Landon's eyes were looking glassy and his he was becoming very pale. The airline attendants were aware of Landon's situation and when Jeremiah and Shelly told them that they had to get Landon off the plane immediately we believe that the attendants brought it to the attention of the pilots and they declared a medical emergency. The plane was allowed to dock at another airline's terminal. Jeremiah and Landon were taken off the plane loaded on a motorized cart and brought to us as quickly as possible. I had everything laid out in the van for Jeremiah to get Landon connected to his IV. It still took Jeremiah nearly thirty minutes to get him hooked up and going. Within a short time we noticed that Landon was more alert and looked better. Talk about a stressful day! We will never let that happen again. Landon will never travel again without having PN (parenteral nutrition, IV feeding solution) available.
Jeremiah, Shelly, and Landon are at home today getting some much needed rest.

Coming Home

2009-07-02T21:15:00.002-04:00

Landon is doing very well and the doctors in Boston have done all the test that they can, for now. If everything goes well tonight Landon will be discharged tomorrow. They have booked a flight and should be arriving in Charlotte about 5:30 tomorrow evening. I know that Jeremiah and Shelly are very tired and are looking forward to getting home and getting some rest. This all comes as a little bit of a surprise, we were not expecting them to be coming home for another week. They will need to return to Boston in about a month.
They are now cycling Landon off of his IV feedings for several hours each day. This will make it easier for them to get Landon out and go places with him. We look forward to seeing Jeremiah, Shelly, and of course Landon.
If you remember I had posted that our local newspaper was going to publish an article about Landon, a couple weeks ago. The reporter that is working on the story did not feel that she had enough information and decided to wait until she could do some interviews. She did interview Kathy, Roger, Ezekiel, and myself a couple days ago. She might interview Jeremiah and Shelly in a couple days and get some pictures of Landon. The editor has told us that it will be published in the July 15th issue of The Alleghany News.
We are planning an organizational meeting for Landon's fund raising campaign. The date we are shooting for is July 19th. This will be the Sunday after the article comes out in the paper. The meeting will be somewhere in Sparta and about 2 o'clock in the afternoon. COTA will be sending someone here to help us get organized. I hope that we can get some folks from Alexander County to come up to this first meeting. After we get organized in Alleghany we will be organizing in Alexander, also. The amount of money that we need to raise to get Landon a transplant is more than we can possibly raise in one area. We will need to organize campaigns in every community that we have any connection to.

Blood Clot Dissolved

2009-07-01T22:32:00.002-04:00

An ultrasound, today, revealed that the blood clot around the tube in Landon's thigh has dissolved. That's very good news. There is still a problem with a rash under the dressing on his thigh. They haven't been able to get rid of the rash and are becoming more concerned about it. If it becomes infected they will have to remove the tube and Landon will have lost one of the few sites available for his IV feeding catheter.
Jeremiah and Shelly met with the doctors and nurses today. The doctors and nurses feel that the treatments have gone very well and that if they can resolve the problem with the rash, and there are no other complications, Landon could be released from the hospital late next week. He could possibly come home at that time. He will need to return to Boston once a month or every other month for check ups.
Jeremiah and Shelly were able to get a couple ladies that volunteer at the hospital to sit with Landon while they got away for a couple hours today. They needed a break.

Another Catheter

2009-06-29T21:53:00.003-04:00

The doctors have inserted a catheter in Landon's left leg. This one is being used to administer the blood thinner. Landon now has a tube in each leg and one in his stomach. Hopefully the one that was just inserted in his left leg will not have to be there for long. They will perform another ultrasound on Wednesday to see if the blood clot is dissolving.

They have begun to cycle down Landon's IV feeding for several hours a day. There are several reasons for doing this. One reason is to give Landon's liver a break and a chance to recover. They must monitor several things while he is not being fed. They must monitor his blood sugar, for one. It could drop quickly. They can not stop the feeding abruptly. They must take it down slowly which means changing the rates every thirty minutes for several hours. When they start it back up they must take it up slowly, also.

Cycling down his IV feeding, the new medications, and the talk of starting continuous feeds through his G-tube seems like it's going to be a lot more for Jeremiah and Shelly to do. They know it has to be done and are happy to do it. I just hope we can give them a break, every now and then.

Blood Clot!

2009-06-27T19:03:00.002-04:00

Yesterday Landon's leg began to swell. There was some concern that the central line that feeds him was leaking in his leg. They had planned to run dye through the line today. This morning they began to suspect something else. They did an ultrasound of his leg and discovered a blood clot around the central line. They have begun administering a blood thinner to dissolve the clot. The doctors told them that this was a potential serious complication but that they believe they have caught it soon enough to avoid it becoming something worse. They were told that some children have lost limbs because of blood clots. If the clot were to break loose and travel it could be even worse. Landon will need to remain on blood thinners for some time. They are considering inserting a catheter in his other leg so that they can administer the blood thinner easier. We are so happy this happened while he was in the hospital. It might have been very hard to diagnose here at home.
Jeremiah will update us later. He and Shelly are both very tired. A train runs behind the house they are staying in every twenty minutes. They haven't gotten use to it, yet, and are not sleeping well.

Landon had the upper GI done

2009-06-26T00:06:00.005-04:00

Landon had the upper GI done yesterday. He didn't like being restrained on the table but, we managed to hold him still long enough to get it done. They put him in a hospital robe and he look so cute in it. They said we could hold on to it for a souvenir. The sun actually came out and it warmed up. The city is amazing everyone seems to be quiet nice. It's very hard to keep up with the pace. Everyone is on the move, they walk like they are late for something. My feet are killing me tring to keep up. I'm tring not to over do things, so my back want put me down while I'm up here. I managed to find a grocery store using the train. This will save us alot, we have spent an average of $10 per person on meals. Things are very expensive in Boston. We should have the GI test back today. They have told us that if his bili. stays down and we go home on lipids he is still #122 in the omegaven study. If we get home and it goes up they will ship the omegaven to us and start it then. I will write to let everyone know what the results of it was later tonight. They are also doing a skin test on his back. The central line has a rash under the dressing and they are tring to find out what is causing it. He has six different spots on has back. Each spot they have done different things to tring to see which will break him out. We should know the results of it today also. It's suppose to get cloudy and start raining for the next five days. I do hope it will clear up soon. I would like to take Shelly around the city. I've been all over it now in hopes to make it easier when I take her and Landon out.

I'm Back & Update from Boston

2009-06-25T20:57:00.004-04:00

I returned from Boston, last evening. It was good to see the sunshine. It rained the entire time I was there.

Here is what I have for an update. I expect Jeremiah to update us later. Today they did a complete gastrointestinal study of Landon. I spoke with Doctor Jaksic about this test before I left Boston. He told me that this study would show them how much intestine Landon was left with, if it has grown any, and how much food is being absorbed and digested by Landon when he eats. It could also show them where in the GI track nutrients are being absorbed. They are gathering all of the information possible about Landon.

The doctors in Boston are impressed and very happy that Landon looks so good. Most of the kids they get at the rehab center are very sick when they get there. We have been working hard to get Landon the medical care needed before he gets very sick. We believe that this is what it will take to keep Landon alive.

I have been talking with COTA about the plans to kick off our fund raising campaign for Landon. We will be doing fund raising in Alleghany, Alexander Counties, and maybe other counties in our area. We need all the help we can get. We will be having an organizational and planning meeting very soon. If you can help please contact me as soon as possible.

By the way I did manage to get out and take a walk in the rain before I left Boston. I ran across this house. The sign said that Paul Revere once lived there.

I hope the weather gets better and Jeremiah and Shelly can get out and do some sightseeing. One other thing, cobblestone streets are slick when they are wet. I slipped and fell right in front of Paul Revere's house.

Yawkee Family Inn

2009-06-23T22:40:00.004-04:00

The house that Jeremiah and Shelly are moving to, tomorrow, is not at the Devon Nichole House. It at a newly renovated house called the Yawkee Family Inn. I think it is operated by the same folks that operate the Devon Nichole House. I walked to it today and took this picture. It is a very nice place.

It is in a nice neighborhood and about a ten or fifteen minute walk from the hospital. The Longwood train station is just down the street. From there you can go almost anywhere in Boston for just a few dollars.

Ultrasound

2009-06-23T22:03:00.003-04:00

Here is a short video of the actual ultrasound being done in Boston.

Quick Update from Boston

2009-06-23T11:22:00.002-04:00

Just a quick update.
Dr. Puder came by early this morning. He talked to Shelly and explained some of the things that are going to happen today.
They took Landon down and did an ultrasound of his abdomen. They mapped out his anatomy and took a very close look at his liver. The good news is they did not find major damage, in his liver, and no blocked bile ducts were apparent. There were some abnormalities but nothing to cause alarm. We have spoken with several specialist. They are looking at the test that have been done and planning for more test including a complete look and his nutrient levels. They are testing for everything from calorie needs to his copper and zinc levels. They are trying to find out everything possible about Landon and coming up with a plan for his nutrition and care.
It is great to have a team of specialist that are totally focused on Landon and know how to care for his specific needs.
There will be a meeting tomorrow morning with the entire team and us at 11a.m.. After that I will help Jeremiah move their stuff to the Devon Nichole House and then I will have to go to the airport. It's going to be hard to leave them here. I know that they are in the best place possible for Landon. We were told that the lady that reviewed his ultrasound, with us, this morning is considered a "Guru" on the subject. One of the best in the country.
Shelly spent the night at the hospital and didn't get much sleep. She is very tired.

Tomorrow's Test

2009-06-22T21:41:00.006-04:00

Landon has had several test done today and there are several more scheduled for tomorrow. Today they started the blood work test. They checked his white blood cell count and it was normal, which is good. No line infections. They took a stool sample to check for bowel infections. They have taken a urine sample. For several days Landon has had a rash under the bandage that holds his IV tube in his leg. They have determined that it is probably a fungus and they have a powder that can be used under the dressing and will eliminate this. Several other things were going on, just gathering all the information about Landon that they could.

Landon was enrolled in the Omegaven study and I think he will be patient number 121. The patients in the ward that Landon is on are all short bowel kids from all over the country. This is the place to be if you are a short bowel syndrome kid.

There are several test scheduled for tomorrow. They are going to do an ultra sound and a study of Landon's liver to determine just how much damage has already been done. We believe that they are also going to do a GI study to get a look at his anatomy from the inside. There will be a lot going on.

Today we met Dr. Puder, the omegaven doctor, Dr. Jaksic, the intestinal surgeon, and Kathleen Gura, the omegaven pharmacist. We also met all of the nurses, social workers, and financial workers that would not give up and helped us get Landon here. I made sure to hug every one of their necks.

All of the doctors and nurses were surprised at how good Landon looks. Most of the patients that they get are very sick by the time they get here. We got Landon here early in an attempt to prevent Landon from becoming very sick or doing more damage to his liver. They are pleased and believe that they can have a very positive impact on Landon's life. This makes us very happy.

Very good news. Jeremiah and Shelly have been excepted in the Devon Nichole House. The Devon Nichole House has just completed a new wing. Jeremiah and Shelly will be the first to occupy one of the new rooms. The cost is minimal, $50 for the first night and $25 per night after that. It could still amount to several hundred dollars quickly. But, it's a lot better than a hotel and it is only a couple blocks from the hospital. They will be moving in on Wednesday and I will be coming home on Wednesday.

Children's Boston

2009-06-22T18:24:00.002-04:00

Arriving at the hospital.

Resting in Bed

2009-06-22T18:18:00.002-04:00

Remember what I said about Landon resting in a bed at Children's Boston?

Take a look at this.

Newspaper Article

2009-06-22T08:04:00.002-04:00

The Alleghany News is working on an article about Landon. It should be ready for this week's paper. They have been following Landon's story from the beginning and have wanted to publish it before now. We have asked them to hold off until we resolved our problem with Medicaid. We have been sending them pictures to put in the paper but were not able to get the picture that we wanted at the airport because we were late and had to rush. I hope the article turns out good. It will be on the front page, unless there is a big fire or something that would bump it off.

One thing that is going to come out in the paper is this, We have set up a trust fund for Landon with COTA (Children's Organ Transplant Association). We have had dozens of friends to ask how they could help us and Landon. This is how. The cost of getting Landon to a transplant is going to be enormous. Fortunately insurance will pay for most of the medical cost but that leaves a huge amount of other cost that must be payed by our family. Unfortunately we are not a wealthy family and will be forced to ask for help from anywhere we can get it. I have never asked for financial help for me or my family but when it comes to saving Landon I am not ashamed to ask. The cost of this trip has already exceeded $1000. Jeremiah, Shelly, and Landon will be here for several weeks more. When Landon leaves here we will be looking at a trip to Cincinnati, for a transplant evaluation, very soon. COTA works with transplant families and has looked at the financial situation for Landon. They have determined that we need from $75,000 to $100,000 in a trust fund for Landon as soon as possible. This money will be available for Landon for the rest of his life.

COTA will administer the funds and will make sure that the money is used where it should be. COTA is a nonprofit organization and any money donated will be tax deductible. 100% of the money donated will go directly to Landon. COTA will be sending a team of people to help us organize a fund raising campaign. We have already recruited several volunteers to help with the campaign and will need a lot more. We will need volunteers in the Alleghany County area and in the Alexander County area. If you can help please contact me. COTA has established a web site for Landon where people can make contributions. The web site will grow and get bigger and there will be a blog set up on the COTA web site. When this happens we will stop making post on this blog site and redirect people to the COTA site.

What we have been through to get Landon to this point has been gigantic. But, the mission to save Landon has just started. We will need all of the resources we can get financially, spiritually, and physically. Please help us any way you can. One way you can help is by spreading the word about Landon. Direct people to this blog or to the COTA web site. Here is the address to the COTA web site for Landon www.cotaforlandonj.com . Donations can be made now on the web site with a credit or debit card.

The outpouring of love for Landon and our family has been overwhelming. I am brought to tears almost daily and I used to never cry. Thanks to everyone. Now, join us in our mission to save Landon.

Early start to Monday's adventure in Boston!

2009-06-22T07:33:00.005-04:00

Waking up on Monday and ready to go!

We all had a chance to rest up before we have to be at the hospital today. It's still rainy and cool. I believe things should clear up by Wednesday or Thursday.

We are in Boston

2009-06-21T19:10:00.003-04:00

We have arrived in Boston. It's a bit of a shock. We left Charlotte and 90 degree weather and arrived in Boston to 60 degrees and rain. We didn't bring many warm clothes and we haven't seen a Wal Mart, yet.

We arrived at the Charlotte Airport a little late and had to rush to get through security and to our plane. Moving all our luggage and handling Landon has proven to be a task. I am glad I came, it would have been very difficult for Jeremiah and Shelly to have moved all this luggage on their own. Landon has four bags of his own. Two of the bags contain his medicine and PN fluids. One of the bags is very heavy. It contains ice packs to keep his fluids cold.

Landon did very well on the flight. He slept most of the way. He is not fussy at all.

Remember the posting I made last week when I stated that we needed to visualize Landon getting on that plane and heading for Boston? Take a look at this picture.

Prayers do get answered!

Going to Boston

2009-06-18T14:46:00.001-04:00

Our battle with Medicaid is over. Landon is scheduled to be admitted to Children's Hospital Boston on Monday.

Thank you Lord!

EJ

Landon with Mommy

2009-06-18T08:12:00.003-04:00

Landon loves to sleep during the day but, when night falls he's wide awake! These pictures were taken last night with our new Canon camera. It has a quick posting mode on it. This makes it very fast to put pictures online. So, expect to see alot more pictures posted from us.

Medicaid Answers Our Request

2009-06-17T10:40:00.002-04:00

Yesterday we received a reply from Medicaid. Here is part of a sentence from that reply "North Carolina Medicaid will approve non-experimental treatment for your grandson at Children’s Hospital Boston". Hallelujah!

It's not over yet. There are still some details to be worked out. We are waiting for a call to tell us when we can take Landon to Boston. We will update with all the details as soon as possible.

Our prayers are being answered. Angels are still watching over Landon.

EJ

We Got The Email & Call Today!

2009-06-16T16:34:00.004-04:00

Yes, finally we got an email from the Medical Director of Medicaid. He verified that Landon has now been approved for treatment at Boston. This email came some time after lunch today. Boston contacted us to let us know that they where working out the details with medicaid , but everything is a go. They are now making sure there will be a bed for him at Boston. They are predicting that we may be leaving by Thursday. This is a huge sigh of relief and could not have came any sooner. We are very blessed to have such wonderful and determined parents. Eldon has almost put his life on hold just to get this accomplished. But some how both him and Kathy have managed to keep their furniture shop operating, the dogs that they sell, feed and taken care of, the garden and greenhouse, watered and tended to. On top of all of that Eldon has gone off with the Cub Scouts to camp this week. He has Gavin and Ezekiel with him at camp until Wednesday. After he had wrote this morning he left to go back down to camp before lunch. When he found out the good news he was arriving back at camp. So that's why I'm updating the blog again today.
Landon is having a great day today. He is cooing and smiling and just being adorable! Landon's home health nurse Anne Beasley came today to check up on him and was very happy to here the good news. She is very impressed with Landon and knows that everyone in Boston will love him. Shelly and I really like Anne and appreciate everything she has done for Landon.
There are so many people that need to be thanked for all of there help and support. We want them all to know just how much they have touched our lives. We are so blessed to have such wonderful people in our lives. Shelly's best friend Angie Coffey has been a tremendous help with everything and Shelly really needed a friend like her through all that we have been through. Landon is the joy in so many peoples lives and has taught us all to appreciate each moment we have.
Landon is such a joy. It is absolutely amazing to watch him grow. To us all of the little things mean so much. It is a lot of work taking care of him but is is so worth it. Between all of the medications and line changes and dirty diapers we don't have a lot of time for anything else. Our other two children are being very forgiving. They enjoy Landon just as much as we do. Landon has already grown out of some of his clothes and some clothing is not convenient for his G-tube or his Central Line but that just means we get to go shopping for him which is fun for us. While we were visiting Dr.Petty we had three different people say "Oh what a cute little girl!" so I think we will stick to wearing blue from now on. Even though Landon is beautiful he is still a little man.

2009-06-16T07:51:00.003-04:00

We are fighting hard to resolve our problem with Medicaid. We hope to have some positive results very soon.

I want to write a few lines about what Jeremiah and Shelly are dealing with.

Yesterday Landon had a doctor's appointment with his surgeon in Winston-Salem. I was there and the appointment went very well. The doctors had ordered an essential fatty acids test for Landon a couple weeks ago. The blood was being drawn by the home health nurse and sent to a lab for testing. The test results have not come back yet. As it turns out the lab where they were sent to only does this test when they have a "batch" of test to do, which can be several weeks. Landon needs to have this test done on a regular basis and needs the results quickly in order to detect any problems and correct them quickly. So, the doctor sent them to a lab in Winston to get the test done quickly. When they arrived at the testing center the nurses started to draw blood from Landon's arm. Jeremiah stopped them and explained why they couldn't do that. They must draw the blood from his Broviac tube. The nurses at the lab did not know how to do that so they sent them back to the surgeons office to get it done. When they arrived back at the surgeon's office they learned that the surgeon and nurses were all in surgery. They ended up having to call a nurse from the NICU at Brenner's to come over and draw the blood. Landon must now return to Winston every week for this test to be done. This was just the beginning.

After leaving the surgeon's office for the second time they went to the pharmacy at Baptist Hospital to obtain several prescriptions that the doctor had written for Landon. Most of these prescriptions can only be filled at Baptist. They ran in to the same problem that they have encountered several times now. The pharmacist at the window told them that these prescriptions would have to be sent up to the NICU unit that they don't give them to the patient. They tried to explain that Landon was not in the hospital and that he is being treated at home. They ended up calling for the head pharmacist. She recognized them and authorized the prescriptions to be filled.

Landon's TPN and lines have to be changed every day at about 2:30 in the afternoon. They ended up having to change his lines in the doctor's office and adding the lipids in the car. These things must be done in a sterile environment to avoid a life threatening infection. It's scary to have to do them anywhere besides home or the hospital.

By the time they got through and headed home it was 3:30 and had already been a long stressful day. But Landon was in a wonderful mood, happy and playing. Taking in the world around him.
EJ

Almost Ready!

2009-06-12T22:37:00.003-04:00

Just because I haven't updated in several days doesn't mean that nothing is happening.

We have been working all week lining up our forces. I have spent the better part of the week talking to doctors, nurses, lawyers, state representatives, and others. I have been gathering the information needed to argue Landon's case. We are almost ready. Next week I will be presenting this information to the people we think can make a difference.

Landon seems to have had a good week. Kathy and I visited with him on Thursday afternoon. He stayed awake more than he has been. We enjoyed our visit, with Landon. Ezekiel came home with us to get ready to go to Cub Scout camp.

More good news, we got Jeremiah's computer fixed this week. I picked it up today and will be getting it to Jeremiah this weekend. He can then begin to update the blog and keep us up to date on Landon's treatment.

Now for the bad news. The liver test from today were bad. Landon's billirubin is still high and his liver enzyme levels are very high. When cells in the liver are damaged they release certain enzymes that can be measured in the blood. Landon's enzyme levels are more than four times normal and have gone up every week. This indicates that more and more of his liver is being damaged every week. This has been an emotional week. We believe with, all our hearts, that this liver damage could be stopped if Landon is allowed to go to Boston for treatment. It's just so hard to know that there is a treatment out there that could save Landon's life and we can't get it, yet.

We need to stop focusing of the fact that Medicaid has blocked us from taking Landon to Boston for the treatments. We need to begin visualizing Landon going to Boston. We need to see him getting on that airplane and taking off. We need to see him resting in a bed at Children's Boston. We need to see that bottle of white liquid (Omegaven) that some families call "white gold" entering Landon's blood stream and soothing his damaged liver, unblocking the ducts and allowing the fluids to flow through his liver. We need to see that beautiful pink color returning to his face and the yellow disappearing. If we can visualize this in our prayers and dreams then surely it will become a reality. Let us use this power, that we all have within us, to make it happen.

EJ

2009-06-06T17:54:00.002-04:00

We are lining up all of our forces to convince Medicaid to allow Landon to go to Boston and be treated in the Center for Advanced Intestinal Rehabilitation at Children's Hospital Boston. There is a good possibility that they can save Landon's liver and delay, for a long time, if not prevent the need for a transplant, in Boston. Instead, Medicaid has offered to send Landon to Cincinnati for an evaluation for a transplant. Apparently Medicaid is willing to pay hundreds of thousands of dollars for a transplant now instead of a few thousand for treatments that could delay or prevent a transplant. The one year survival rate for infants that receive a transplant is only about 50%. We need to put off the transplant as long as possible. The bigger and stronger Landon gets before a transplant the better his chances for survival are. The doctors here and the doctors in Boston are working together to convince Medicaid to allow the treatments in Boston. There is one woman at Medicaid that is making the call. I spoke with her myself, this week. It is obvious that she knew very little about Landon's case and almost nothing about the treatment that will save his liver and yet she still denied the treatment. She seems to have a closed mind and wouldn't even listen to my arguments. I am praying that the Lord will touch her heart and open her mind, before any more damage is done to Landon's liver.
Landon's test results, yesterday, were still bad. They were a little better than last Friday's but only a little. His billirubin and liver enzymes are very high. It is clear that Landon is developing cholestasis (blockages in his liver) and liver damage. Time is not on our side.
Other than all this bad news, Jeremiah reports that Landon is doing well and they have gotten in to a routine. Maybe Jeremiah can update the blog later. We will be going to see them, tomorrow.
We are looking over some materials that were sent to us by COTA, Children's Organ Transplant Association. They are willing to set up a trust for Landon so that we can begin raising money for Landon's care. It is obvious that the need is there and will be huge over the long haul. We will decide something soon.
EJ

Medicaid Denies Our Request

2009-06-03T18:29:00.004-04:00

Medicaid has denied our request to send Landon to Boston. We believe they were given some misinformation by a nurse that didn't know what she was talking about and they based their decision on that information. We are requesting an immediate appeal of their decision. Every doctor involved in Landon's case here in NC and in Boston is contacting Medicaid to voice their opinion that Landon needs to be in Boston to begin the process towards a transplant and to get him on Omegaven to preserve his liver. We find it very hard to understand how medicaid could deny this request. We believe that Landon's liver is being damaged more and more every day that we are delayed from taking him to Boston. Landon's only hope is for a small intestine transplant. We are trying to preserve his liver so that he does not have to have a liver transplant as well. Most children in Landon's condition die from liver failure before they ever get to a transplant.
We are digging in our heals and have just begun to fight. I have been contacted by a law firm that will handle any legal matters for Landon. If we need to mount a legal battle then we will do that. I have other ideas but will save them until the appropriate time, if needed.
We have some very good doctors, nurses, and social workers working on this matter. I believe we will prevail but for now we are all very disappointed.
Please continue to pray for Landon.
EJ

Waiting for Medicaid approval

2009-06-02T23:03:00.002-04:00

The last few days have been very stressful. We are waiting for Medicaid to give us approval to take Landon to Boston. If Medicaid denies our request then we will file for an immediate appeal. Hopefully that will not be needed. We know that Landon's billirubin levels are continuing to rise and that his liver is being damaged more with every passing day. We have noticed some yellowing around his eyes. Children's Hospital Boston has him scheduled to be admitted on Monday morning. I hope this happens, if not sooner.
EJ

Shelly and I want to thank everyone!

2009-05-30T20:06:00.004-04:00

Shelly and I can finally post updates now. Our laptop is down but, Rogers PC works fine. Just wanted to thank everyone for your support and concerns. Things have been tough here lately keeping up with our daily activities, chores, and other 2 boy's homework. Landons care is a full time job by its self but, Shelly and I are working well together to get everything done. But without every ones support it would be very difficult! The Home Health Care Nurse Anne has went out of her way to make sure Landon is getting a fair chance. She was able to figure things out with his Lab work to get it faxed to us before anyone else. We have been mislead every since we have left the Hospital. It has been very difficult for us to get any lab results and even get in touch with the doctors or nurse in charge of Landon. With us being tied up with Landon, Ezekiel, and Roger we have had no time to do the necessary research. Thanks to Anne for getting the labs to us and Eldon for contacting Dr. Puder. Landon now has a good chance to go to Boston and try Omegaven to hopefully reverse some of the damage already done. I have been talking with Danielle from Boston and have found that Landons labs are far from being the same. His last 2 labs have not had his direct Billi tested. His Surgical doctor has said things are fine and normal. This is entirely not the case, things have turned. Danielle was very honest about things on his labs. The labs showed that definite damage to his liver is occurring. His direct bili , AST(SGOT) and ALT(SGPT) is all way to high . The AST and ALT is elevated because damage is being done to his liver. Boston looks at many different test to determine this but , Danielle pointed out that if the Direct Bili was up along with his AST and ALT test ,then definite damage from his TPN and Lipids were occurring. We will try our best to update often. Eldon has done a very good job so far and his information on Landon is very up to date. Thanks again to everyone!! JJ

Bad Test Results

2009-05-30T08:39:00.002-04:00

It's none too soon to be getting Landon to Boston. We got the results yesterday from his blood work and it's not good at all. In fact it's very bad. He has abnormal results on almost a dozen test. His bilirubin has almost doubled and is well above the threshold to get him admitted to the omegaven research program. There is a possibility that he may need to be admitted to the hospital here to get some of these levels under control before he goes to Boston. We will be talking with the nurses today.
We have been researching the logistics for getting to Boston and staying there for a while. We have found several possibilities for lodging. While Landon is in the hospital the Devon Nicole House should do fine http://www.childrenshospital.org/patientsfamilies/Site1393/mainpageS1393P4sublevel78.html . When he is an outpatient we will have to find something a little bigger and with more privacy. It is expensive to rent anything in Boston. One good bit of news is that the airlines are running specials this spring and it is not terribly expensive to fly to Boston. Charlotte to Boston is as low as $59 plus tax and fees.
So far we have been able to keep the lights on and pay the bills. Family members, grandparents, great grandparents, aunts, uncles, and friends have been contributing, financially, for weeks. We have received several donations from church groups and yesterday received a donation from the employees of our local telephone company, Skyline Telephone. I know a lot of people want to do something for Landon and to help in any way possible. We have not asked for any financial help but we are quickly coming to the point that the need is there. Jeremiah and Shelly need to be concentrating on Landon and not worrying about keeping the lights on, keeping gas in the car, or even if there is enough money for diapers. It is very hard for Jeremiah to do the line changes by himself, Shelly needs to be there if possible. The short term doesn't worry me as much as the long term. I have talked to a lawyer about receiving contributions and about setting up a trust fund for Landon's care. For now we can handle most contributions as gifts. If there are a lot of contributions or the money builds up to a substantial amount then we will need to set up a trust. I believe that will happen. If the transplant team evaluates Landon and decides that he is a candidate for a transplant then there is a nonprofit organization called COTA, Children's Organ Transplant Association, http://cota.org/COTA.php that could set up the trust fund and help with fund raising.

Landon has been accepted to Harvard !!

2009-05-28T21:45:00.005-04:00

Can you believe it . Just a little more than a month old and Landon has been accepted to Harvard.

Actually, he has been accepted to become a patient of The Children's Hospital Boston which is part of the Harvard Medical School and to participate in the omegaven program as well as the short bowel group. This is fantastic!

Jeremiah and I each spent several hours, today, talking with the doctors and nurses from Boston. We have been sent the forms necessary to begin the process to get Landon to Boston. Tomorrow we will be gathering the information needed and faxing it to Boston. Landon could be on his way in a week or so. The thing that could slow down the process would be a problem with insurance. Hopefully that will not happen.

The mortality rate for babies with short bowel syndrome is very high. One reason for this is that babies are not referred to short bowel groups or for transplant until they are very sick. They are happy to receive Landon to the omegaven program and the short bowel group in an attempt to intervene at a young age before Landon develops liver damage and or becomes sick from other complications. This could make a huge difference in Landon's life.

Since Landon is not as sick as other children that go to Boston we were told that he might only be in Boston for a couple weeks. He should be able to fly on commercial flights. They will send us letters to show the airlines that will allow us to board with Landon on TPN.

The plan is to admit him to hospital for 48 hours to do the necessary test, get him started on the omegaven, and to evaluate him. We also want Landon to get his first evaluation for a possible transplant. After that he will be released and will remain in Boston, as an outpatient, for a couple weeks. Then he will be sent home with the omegaven. He will have to return to Boston every couple months for check-ups and more test.

I'm ready to go !

Jessica visits

2009-05-26T22:38:00.003-04:00

Jeremiah's sister, Jessica, went to visit Landon today. This was the first time she has seen Landon since he got out of the hospital.

Several other visitors came by. The home nurse came and checked him out. She weighed him and he was 10lbs. 1 oz..

We are a little worried tonight. Landon seemed more lethargic than normal and was fussy when he was awake. He had some problems with vomiting today.

We called the doctor in Winston to try and get the results from his blood work test from last Friday only to find out that the doctor is on vacation and will not be back until Monday. No one else would give us the results. We are a little concerned. Short bowel babies can become deficient in something very fast. We will be watching closely tomorrow.

These are GOOD TIMES!

2009-05-24T21:51:00.006-04:00

Kathy just got back from spending the weekend with Jeremiah, Shelly, Ezekiel, and Landon. This is what she has to report:

Landon is pure joy. He is awake, alert, playing, smiling, and cooing. He is very seldom fussy. Landon had several visitors this weekend including another visit from his great grandmother Estes.

There were a couple alarms this weekend. One in the middle of the night. It seems that the lipids are clogging up one of the lines. Jeremiah has learned how to unblock the line and will be speaking with the nurses about it this week.

Shelly was working this weekend. Taking care of Landon has become Jeremiah's full time job. For those that don't know Jeremiah has a serious back problem. We were making arrangements for Jeremiah to have back surgery, before Landon was born. That has all been placed on hold, for now, and Jeremiah is living with a considerable amount of pain. Hopefully Kathy being there this weekend has helped Jeremiah get a little more rest.

This weekend I made contact with a man, Michael Stephany, whose grandson, Aidyn, was born in Phoenix, Arizona a week before Landon was born. Shortly after birth his grandson developed necrotizing enterocolitis which resulted in him losing 95% of his small intestine and being placed on TPN. His family has already made the decision to take Aidyn to Boston and get him started on omegaven. They were leaving today. As it turns out there are some problems finding accommodations in Boston. The Ronald McDonald house, in Boston, prefers to accept only cancer patients. They will let other families stay there, if they have room, but will ask you to leave if a cancer family shows up. There is another house, the Devon Nicole House. They only have thirteen rooms and we have been told that the accommodations for omegaven families are not great. We are being told to expect to be in Boston for five to nine weeks. The children are not in the hospital the entire time but must remain close to the hospital for frequent test. So the accommodations must be clean and roomy enough to live in for several weeks. We have also been told that there are several families in the Boston area that have helped families that come to get their children started on Omegaven. The social workers in Boston should be able to help us. Michael has given us the contact information for his son and they have agreed to keep us informed as to what they find. I have told Michael that we would be saying a prayer for his grandson, Aidyn Stephany, who is on his way to Boston. So please keep Aidyn in your prayers.

Doctor Visit

2009-05-19T22:15:00.002-04:00

Landon had a visit with the surgeon in Winston today. The surgeon was impressed and very happy with how well Landon is doing. Landon has gained a little more weight and is healing nicely from the surgery. The surgeon discussed any concerns that Jeremiah and Shelly had and was very interested in making sure that they have everything they need to take care of Landon. Landon will be visiting with the doctor every two weeks. After the doctor visits they pick up his prescriptions, which includes his TPN, from the pharmacy at Baptist Hospital. From here we will be watching his growth and progress, looking for any signs of complications, and keeping an eye on his weekly blood test.

If you are wondering why Jeremiah hasn't made any more post to the blog, his computer totally crashed. The technician said it looked like a virus had eaten his hard drive. We hope to have a new hard drive installed soon so he can keep us up to date.

EJ

Sunday Visit

2009-05-18T08:24:00.005-04:00

Kathy and I visited with Landon, Ezekiel, and Jeremiah, yesterday. Shelly had to work and Roger was off doing what 16 year old boys do (skateboarding and playing guitar?).

Each of us got to spend time holding, rocking, feeding, and loving on Landon.

Kathy got to help with changing the TPN.

I got to help with the feeding. He only takes a small amount of formula. It is mostly to give him a taste of food to help him with his sucking and swallowing. He can absorb a small amount of nutrition through his duodenum.

Landon also received a visit from his great aunt and uncle Vicki (one of Kathy's sisters) and Paul McGuire.

Kathy and I don't like posting pictures of ourselves. She says it looks like she is beginning to get some gray hairs. I think it makes me look like I am "starting" to lose some of my hair. Ha ha!

We would like to welcome Jennie to the blog. What a wonderful nurse and now a great friend.

Low sugar scare!

2009-05-15T21:21:00.002-04:00

Today we had a scare that prompted a call to 911 for an ambulance to take Landon back to Baptist Hospital.

The home nurse drew some blood for blood work. One of the test indicated that Landon's blood sugar was extremely low. She advised that they should call 911 for a ambulance. Jeremiah also made a call to the nurses at Baptist Hospital. He made contact with the nurses about the same time that the ambulance arrived. The nurses from Baptist advised them that it was probably a false reading. The medics took a sample from Landon's heel and it tested normal. As it turns out the home nurse had drawn the blood from the lines. The nurses from Baptist told them that they would get a false blood sugar reading if blood is drawn from the line. They have changed the orders for the home nurse so that this doesn't happen again. The nurses from Baptist told them that this happens often when babies are sent home on TPN.

This was a good test of the ambulance service. Baptist Hospital has given orders that Landon is to be taken directly to Baptist Hospital for any medical situation. The local ambulance service will not take Landon to Baptist. They will take him to Statesville and he would then be transferred to another ambulance and taken to Winston. Baptist has now advised Jeremiah that unless Landon's problem is very serious he should be taken to Baptist in a personal vehicle. It would be faster with fewer people and facilities to complicate things.

Anyway, Landon did not have to go back to the hospital. He is still at home and doing fine. We are planning to go down and spend some time with him this weekend.

EJ

A Day of First

2009-05-13T21:01:00.003-04:00

Landon made his first visit to his local pediatrician today. Jeremiah and Shelly were impressed and pleased with the doctor. He had talked with the doctors from Baptist and had been sent all of Landon's information and was completely familiar with Landon's situation. Today Landon weighed 8lbs. 14oz. . He has gained more than a pound since Monday.

Today, Landon received a visit from his Great Grandmother Estes. This was the first time she had seen him. He also made his first trip to Wal Mart, on the way home from the doctor. Wow, what a day.

There was a problem, this morning, with one of the pumps. We had to call technical support for some information. It was good to learn that technical support is available 24/7.

Landon Comes Home

2009-05-12T09:20:00.003-04:00

Landon came home yesterday evening. He was very amused by the toys hanging over his crib. He is very alert and seldom cries.

It was late in the day by the time he was discharged from the hospital. He came home with a big box full of TPN and medical supplies. He was sent home with a battery powered pump for his TPN and lipids. The pump is very compact and light weight. A nurse was at the house to meet them when they got home. They are getting settled in and prepared to care for Landon.

2009-05-10T21:19:00.003-04:00

We have just returned from visiting with Landon and dropping off Roger and Ezekiel. Landon was sleeping soundly, after being up and alert all day. We just got there too late to be able to play with him.

This is what I can report tonight: Landon's bilirubin levels are down. We believe this is the result of them giving him a medicine called Actigall. Actigall is used to open up bile ducts and flush out his system, thus lowering his bilirubin levels. It seems to have worked. The problem is, it is only temporary and today was his last dose. We will be watching to see if the levels begin to rise again.

The plan is to get Landon home as soon as possible, maybe even tomorrow. We will know after the doctors make rounds, in the morning, if he is coming home or not. If he gets to come home we will be there as soon as we can to get some pictures. Kathy says she just wants to take a whole day and sit and rock him. I've got a feeling she will get her wish. Maybe many times over.

2009-05-09T08:18:00.006-04:00

Kathy and I went to Winston, yesterday, to visit Landon, take Jeremiah out to eat, and pick up Roger and Ezekiel.

Landon is doing very well. He is bright, alert, cooing, looking at his hands and other people's faces. He really enjoyed his visit from Roger and Ezekiel.

Landon has been moved to the intermediate care ward. He is in a larger room with two or three babies and one nurse. He has been placed in a crib instead of the incubator. This is a better environment. I think that has something to do with how happy he seems to be.

Jeremiah and Shelly are doing most of the TPN line changes, administering medications, feeding, and diaper changes. As you can see, the line changes must be done in a sterile environment to avoid any line infections. They have learned how to set up the pumps and how to change the settings, if necessary. Jeremiah is always checking the TPN solution to make sure that the correct medicines have been added to the TPN. They have increased the glucose in the TPN. Hopefully this will help him gain weight. We will be waiting for the results of his blood work, next week. Hopefully his bilirubin levels have not gone up and have decreased. If they have gone up we will begin making arrangements to take him to Boston.

Jeremiah and Shelly won a "Build-A-Bear", for Ezekiel, playing bingo at the Ronald McDonald House. Ezekiel wanted to show Landon the bear.

Roger and Ezekiel came home to spend the weekend with us. For those that don't know, we live in the mountains of NC and have a trout stream that runs through our property. They stocked the stream with trout last week so we are going fishing today.

Conference Call

2009-05-06T18:01:00.002-04:00

We finally managed to have the conference call with the doctor from Boston Children's hospital. This doctor is the transplant surgeon. Jeremiah was able to describe to the doctor everything that has happened and the procedures and medications that are being used. The doctor agreed with what is being done and was able to give some suggestions to pass along to the doctors here. He agrees with what has been suggested here, that we do our best to preserve the liver and put off the transplant as long as possible.

Here is the really good news. Landon has already had one abnormal bilirubin test. The doctor stated that if Landon has two consecutive abnormal bilirubin test he will accept him as a patient and we will fly Landon to Boston. He will be admitted to Boston Children's Hospital and they will get him started on the omegaven. After getting on the omegaven they can send him home with the omegaven and it can be administered here in North Carolina. The doctor was very optimistic. This is fantastic. Not only can we get him on the omegaven, if needed, but we can also get our foot in the door of one of the best children's transplant hospitals with a program for children with conditions like Landon's.

EJ

Not Coming Home Today

2009-05-06T12:31:00.002-04:00

Earlier I stated that everything had to go just right before Landon could come home today. Well it hasn't. Landon is not gaining any weight. If anything he is losing weight. They reduced the lipids in the TPN, from the start, in an attempt to keep from doing damage to his liver. The indicator that there could be liver problems developing is the bilirubin level. Dr. Puder's research indicates that if a child's bilirubin is over 3 and remains that way for three months there is a 78% mortality rate. The test from Monday show that Landon's is already over 3 and he is only two weeks old. We are now going to start shouting from the roof tops to get him on omegaven.
We are hoping that the conference call with the doctor in Boston will begin soon.

EJ

Landon Going Home?

2009-05-06T07:49:00.002-04:00

It is possible that, if everything goes right, Landon will be coming home this evening.

Baptist Hospital has located a nursing service out of Hickory that will take him as a patient. They had a difficult time finding a service that would take him or that is qualified to take him. They have located the equipment needed and Jeremiah and Shelly have been learning how to use it for the last couple of days. Jeremiah and Shelly have both had a "crash course" in nursing and caring for Landon. They are confident that they can care for him at home. They have been given direct contact numbers for the surgeons, doctors, and nurses at Baptist. If anything happens they are to make contact with them and take Landon directly back to Baptist.

This is a happy time and a scary time. We are so glad to get Landon home where we can spend more time with him. We want every possible moment with Landon. That's one reason that we chose not to let him die. We can't have that if he is in the hospital. Yet, we are taking a very sick little boy out of an ICU where they monitor his every breath and heartbeat. We know what some of they complications can be and will be watching every moment.

We have another conference call set up today with Dr. Jaksic from the Boston Children's Hospital. He is the transplant surgeon. We have a lot of questions for him and he seems to be very interested in Landon's case. I have still been spending many hours each day on the computer doing research and corresponding with other families of children with short bowel syndrome. I am convinced of two things. We must get Landon on Omegaven as soon as possible and we must get him into a transplant program as soon as possible.

EJ

Kathy feeding Landon

2009-05-03T22:52:00.001-04:00

2009-05-03T22:19:00.002-04:00

Kathy and I just returned from Winston. We spent the afternoon with Landon. The good news is that he is slowly beginning to suck on a bottle and swallow some formula. Even though he will not absorb very much if any nutrition from eating he still must learn to eat and swallow. Kathy even got to feed him and I got some pictures that I will post next.
Jeremiah, Shelly, Kathy, myself, and even Ezekiel had to take a CPR class, this afternoon. This was preparation for when Landon gets to come home.
Tomorrow they will be doing more blood work. We will be watching his bilirubin levels. We want to establish a base line to watch. Increases in the bilirubin could be one of the first indicators of liver damage.
Kathy and I took Ezekiel home. Angie picked up Ezekiel and Roger. She will be getting them to school and taking care of them for a couple days so that Jeremiah and Shelly can stay with Landon. Thanks Angie, it's good to have great family friends.

Support Groups

2009-05-03T08:53:00.002-04:00

Yesterday evening I finally located a support group for people and families with conditions similar to Landon's. After signing on, I have received numerous emails from families giving us encouragement and telling us their stories. I am going to post links to some of their sites here. The more we can read about what they have been through the better prepared we will be for what lies ahead for Landon.

Kathy and I are going back to the hospital today. I will post an update on Landon's progress, this afternoon or evening. Ezekiel went to Winston to stay with Jeremiah and Shelly at the Ronald McDonald House this weekend. They will have to take him home this evening.

I am planning to start a web page for Landon soon. From there I can post stories and pictures about Landon as well as more links to web sites with information about other children and organizations dealing with Landon's condition.

Here are some links:

http://simuljustisetpecatur.blogspot.com/
http://www.schnazberry.blogspot.com
http://www.norathomas.com/
http://adrianalexander.blogspot.com/
http://grey.colorado.edu/shortgut/index.php/Omegaven

There are dozens more. I will get them on the web site.

Jeremiah is having trouble with his computer and hasn't been able to post any updates. We hope to get it fixed very soon.

EJ

Landon 5/1/09

2009-05-01T23:00:00.003-04:00

Family Conference

2009-05-01T20:45:00.003-04:00

We had a family conference today with the surgeon, the nurses and the pediatric doctors attending to Landon. Here are some of the things that were discussed:
There is some concern because they have not been able to start the feedings as planned. Landon continues to spit up or vomit fluids from his stomach. They do not want to put anything else in his stomach until he quits spitting up because of the risk of him aspirating (sucking fluids into his lungs). He seems to be having trouble swallowing and is not sucking on a pacifier. They will evaluate him further and may need to help him by stimulating his swallowing reflex. He must learn how to suckle and swallow.
Landon is continuing to have bowel movements. This is good.
Lab results are coming in and they are establishing base lines to use to determine if anything is changing.
There was a lot of discussion about what needs to happen between now and when Landon will go home. Landon needs to begin feeding with no trouble or he could develop an oral aversion or lose the ability to suck or swallow.
He needs to continue to improve with no complications. They need to be able to administer TPN at home and need to find an infusion pharmacy to provide the TPN. They need to locate a home health agency to provide nursing at home. They need to locate a company to provide the equipment needed at home. Fortunately, Baptist Hospital has a team of social workers that are already working these problems out. At first some of these things will be provided by Baptist Hospital directly.
The Family must receive the training need to care for Landon. Some of that has already started.
There was again a lot of discussion about Omegaven and if we should push to try and obtain it. We seem to be coming to the consensus that we shouldn't. Omegaven is very new and the results are not in as to how good it really is. It is basically refined fish oil. What is being seen now is very promising and we will continue to watch. Since Omegaven is not approved by the FDA the only way we could get it for Landon would be to get him into a test group. There are no test groups in NC so it would have to be out of state and medicaid would probably not pay for it. Some children do very well on the TPN, for many years, and never develop liver complications. We will watch Landon closely. If there are any indications of liver problems we will begin pushing for the Omegaven. By then there may be a test group in NC. We discussed what may happen if Landon gets to the point of requiring a transplant. At this time he would have to go out of state and there are several possible hospitals to go to. We discussed the fact that they are developing a transplant program at Duke and that it may be to the point, in a couple years, that they can do the transplant there. The doctors at Baptist are going to make the transplant team at Duke aware of Landon's case.
We discussed Landon's anatomy and about valves that might have been left or removed. We also discussed what other kinds of complications might crop up.
There was some discussion about what Landon's and the Families' life might be like in the near term and the long term.
We were told that if any complications come up, at home, that Landon should be taken directly to Baptist hospital. Hopefully we can get him home and there will be no complications.
Unfortunately the conference call with the doctors in Boston had to be rescheduled, again, due to an emergency in Boston. It has been rescheduled for next Wednesday. They said they are really interested in Landon's case and want to learn more. The surgeons here have continued to talk to the doctors in Boston. One of the surgeons, on Landon's surgical team, worked with the doctors in Boston, last year.
Landon is still sleeping a lot. We are hoping that he will be more alert soon and that we can get some more video.
OK, one more thing, I have been contacted by the National Association of Men. If I make one more post like the one yesterday I will be asked to surrender my MAN card. No more crying or at least no more writing about it.

EJ

2009-04-30T17:26:00.002-04:00

I left Winston this morning after sitting in on rounds with the surgical team and then with the neonatal team.

Here is some of what I learned, some of the questions that I asked and some of the answers.

Where do we stand with regards to obtaining the omegaven? The FDA probably will not give us permission to use it unless there are problems with the TPN. There are questions as to whether medicaid will pay for the omegaven. We do not know what the cost of the omegaven will be but it will probably be more than the TPN. We do know that the cost of the TPN could exceed $500,000 per year. The doctors here are not convinced that we need the omagaven.

I asked if any of Landon's small intestine remains. Landon's condition now is classified as short gut syndrome. Short gut syndrome is when a person has less than six feet of small intestine. A normal person would have about twenty feet. If you could call it small intestine, Landon has been left with about two centimeters or about 3/4 of an inch, virtually none. This is a new one, no gut syndrome

I asked if any of them had ever seen a case like this with the path we have chosen for Landon. No, when babies are born with conditions as severe as Landon's they do not survive. For all involved we are breaking new ground.

They are going to begin feeding Landon a small amount, this evening. He is showing signs of hunger pains and they want him to develop the ability to eat and swallow. He will not absorb nutrition from the feeding and it could cause some problems.

Kathy stayed with Landon today. Jeremiah and Shelly are returning this evening and I am going down in the morning. We have a conference call scheduled with the doctors from Boston at 11am and a family conference with all of the doctors involved in Landon's case at 2pm. We should have a lot better idea as to what to expect for Landon after the meetings.

During the drive home this morning I realized that with all the research we are doing all the plans we are making and all the work the nurses and doctors are doing that the outcome for Landon is still out of our hands. Our time with Landon is precious and could be much shorter than we would like it to be. As far as that goes any time that we have with our loved ones is precious. I also found out that sometimes it helps to just stop and cry.

2009-04-29T22:27:00.003-04:00

Landon Pooped!

That's what the nurses were all excited about when we arrived at the hospital, this evening. Landon had a messy diaper. This is a very good thing. It means that his lower intestine is working. His first messy diaper was about 3pm and the second was about 8pm. He will not have messy diapers like other babies because he is not eating anything, but he will have bowel movements.

Jeremiah and Shelly went home this evening. Jeremiah is exhausted and tomorrow is Roger's sixteenth birthday. Kathy and I are staying here tonight. We had a very good visit with Landon. Everything is still looking good. He may get to go home even sooner than we thought.

I wanted to sit in on the rounds this evening but I did not get here in time. I did speak with one of the doctors. My concern is about the megaven that we need to obtain to replace the TPN. We have to get approval from the FDA to use it and we haven't gotten it yet. They are going to bring it up at rounds tomorrow morning and hopefully we can find out something. I am going to keep pushing for the megaven. The TPN is being used to feed Landon intravenously now and will damage his liver. The megaven does not do as much damage but is not approved for use in the US. We have to get special permission from the FDA as soon as possible.

I spoke with a Dr. Jaksic from Boston today. He is the pediatric surgeon that does the transplant surgery. We were hoping to have another conference call this evening but couldn't get everybody together. We are going to try again tomorrow. We need to know where to go from here.

EJ

2009-04-29T22:20:00.002-04:00

Kathy and I finally got to hold Landon.

2009-04-28T21:40:00.003-04:00

I am hoping Jeremiah will do an update soon. He was up most of the night, last night, with Landon. Landon had a couple episodes of supra ventricular tachycardia last night. What this means is that his heart rate suddenly became very rapid. They called Jeremiah at the Ronald McDonald House and had him to come back over to the hospital. They used ice packs to get his heart back in rhythm. They told Jeremiah that there are several things that could have caused this such as withdrawal from the pain medications, catheter leads, or it could be hereditary. The last time we talked with Jeremiah they were placing leads on Landon so they could monitor his EKG. Anyway, it was a scary night for Jeremiah and concerning for us now.

EJ

Today was another milestone for Landon

2009-04-27T23:03:00.007-04:00

I went to see him at 7:30 am this morning. The first thing I noticed was his swelling from the fluids were gone in his face. He looked like he did before the surgery, so handsome! I got there just in time to change a very wet diaper. The Lasix they gave him the night before help him flush the fluids out. At 8:00 am Dr. Petty made his rounds and said he was doing very outstanding and said to remove the upper nose tube from his stomach. They dropped his TPN to .7ml per hour to reduce the lipids that were now up to 3. That number has to stay below 3 to be safe on his liver. His blood work showed that his hemoglobin is at 10.9 (norm is 15). Platelets were at 105,000 so, just a bit lower than they had hoped (anything 100,000 or below will require another blood transfusion). But hopefully that want be the case tomorrow. He has gain some weight due to the fluids and lost some as they came out. He weighs 7 lbs and 13 0z a 1 lb gain from his birth weight. He was awake barely at 8:00am but he watched me when he heard my voice. They let me do all of the things that we will have to do daily, when he gets home. Such as cleaning his gastrostomy tubes and buttons, check his TPN lines and replace with new sterile ones. By that time he was gone back to sleep, so I let him rest.
I returned at 3:15pm and his oxygen tube was removed and they had his face washed and clean. It was the first time that I had seen him with out anything on his face! He is so beautiful and well mannered. His pain meds were lower to 2mcg and was also going to be taken off completely. It was time for rounds so I went out to gather info on the 7th floor resource center.
At 4:15pm I got to hold him with out anything on his face. It was so much easier than before. He was still very tired and fell back to sleep close to my chest. At 5:00pm I left to let him get some more sleep.
When I returned at 7:30pm I found out that he was completely off the pain meds and only given antibiotics. It took me 45 mins to get him to even open his eye's but when he finally did it was amazing at the alertness and focus he had on me and his new moo cow I brought him. I held him after he was fully awake. He loved the attention and never looked away. The nose to nose kisses had him smiling and making the sweetest noises. He never got mad or even tried to cry. All of the nurses what to take him home with them. Most all have never seen a baby in his condition survive with all the small intestine removed. Most babies are born premature and have other problems along with the short bowel syndrome. But I couldn't believe it, how much of a calm and gentile baby he is after all that he has been through. It's only the beginning of a long road ahead. But I have full faith that Landons strength to fight and the prayers from all will help each and every day. I have some great pics and movies that I'm tring to uplaod. Shelly will be down tomorrow and boy will see be amazed at his progress!

jj

2009-04-27T07:17:00.004-04:00

This Video speaks volumes about how Landon is doing. It was taken last evening.
Shelly went home last night to be with the boys and to take care of business. Kathy and I came home late last night. Jeremiah stayed with Landon.

We hope to have a conference call with the doctors in Boston, today.

Jeremiah is going to begin contributing to the blog. When you are at the hospital you have a lot of time on your hands and it helps to write about what is happening. Jeremiah will end his post with JJ. I will end mine with EJ. You might, someday, see one that ends with LJ, that will be Landon.

EJ

2009-04-26T23:45:00.003-04:00

2009-04-26T07:31:00.002-04:00

Kathy and I came home yesterday evening. We will be returning this afternoon. I spoke with Jeremiah late last night. He said that they have reduced the pain medicine and the oxygen levels even further and that Landon is more alert. hopefully they can remove the vent tubes very soon.
Please keep Landon in your prayers, this beautiful Sunday morning. Have him placed on prayer list at your church and share this blog site address with any interested. I believe that thousands of prayers have been made on Landon's behalf. The more people we can have watching and praying the better. Thanks. I will update again this afternoon.

2009-04-25T12:24:00.003-04:00

I just sat in on rounds for Landon today. Here is part of the report. They have reduced his fentanyl (pain medicine) from 9 to 7 and they will reduce it to 6 this afternoon. They are going to reduce his oxygen from 23% to 20%. This is less than what is in the air. All of this is an attempt to get him to breath more on his own and to get him off of the ventilator. They have begun the process of getting approval from the FDA to get him on the Omegaven. Omegaven is made from fish oil and is manufactured in Germany. It is not approved for use in the US and they have to get permission from the FDA to use it. They hope to have the Omegaven as soon as possible. The Omegaven will not do as much damage to the liver as the feeding solution they are using now. They seem to be very optimistic and all voiced there delight at the path we have chosen and the chance for medical advancements that could give Landon a better quality of life and a longer life.

2009-04-25T08:56:00.003-04:00

Landon is becoming even more active.

2009-04-25T08:51:00.002-04:00

Landon is awake even more this morning. All of his vital signs look good and his blood work is OK. His heart rate is still going up and down depending on how awake he is. The nurses are just watching for signs that he might be in pain.

2009-04-25T02:20:00.002-04:00

Landon is beginning to wake up. His heart rate is still fluctuating. We believe that is because they are reducing the pain medicine. Blood work still looks good. They will do another blood test early in the morning. They have reduced the oxygen that they are giving him to 23% and his oxygen levels are staying up there. He is breathing on his own more and more. Maybe they can get that tube out of his mouth tomorrow. He is swollen quite a bit.

2009-04-25T01:40:00.002-04:00

2009-04-24T22:55:00.002-04:00

I haven't heard anything from Kathy or Shelly so I presume that things are OK with Landon. I am getting ready to go to the hospital and spend some time with Landon.

Shelly spoke with another mother, today, that has gone through the same ordeal that we are now going through. She told that her son was fed intravenously until he received a transplant at the age of two. By then his liver had been damaged and he also had a liver transplant. He is now seven and is doing fine. She described what it was like with the constant threat of infections, the numerous hospital stays and the need for nursing as well as other kinds of help. She told how hard it was to have a toddler dragging around a feeding pump that he is always connected to. She also told about the problems after the transplant with diet and diarrea. It is good to know that we are not the first family to have been in this situation and that others have blazed a trail for us and are willing to help us.

2009-04-24T19:24:00.004-04:00

We have moved over to the Ronald McDonald House. Jeremiah has gone home to get some sleep and to pick up Ezekiel. Kathy and I will be staying with Shelly tonight. We will be taking turns staying with Landon. For several days, while it appeared that Landon would not survive, they were allowing us to have as many family members in the nursery as we wanted. Now that things have changed they are limiting us to just two at a time. Kathy and Shelly are going over now, while I get a nap, and I will take the late shift. If there are any changes in Landon, Kathy will call me and I will post them. If not I will make another post when I get there, later.

This Ronald McDonald House is amazing. It is very clean and nicely decorated and secure. When we got here supper was available. Supper is brought in and donated by a different local restaurant each evening. There is a note that a family is donating and preparing breakfast tomorrow. The kitchen is stocked with fruits, vegetables, cakes, cookies, cereals, and much more. We don't have to worry about going hungry and we have already spent a lot on food in the hospital cafeteria. This is such a relief.

Thanks to everyone that has emailed with your prayers and kind words. I am sorry that I haven't been able to acknowledge your emails but we do appreciate them. Jessica has called and said that someone has mowed my yard. Thank you very much!

2009-04-24T16:34:00.002-04:00

We had a little scare a few minutes ago. Landon's heart rate suddenly dropped. The nurses jumped on it and have determined that he is too sedated. They have cut back on the sedation medicine and are watching him closely.

2009-04-24T14:50:00.002-04:00

A social worker just left. The social worker has already completed the applications needed to get Landon approved for social security benefits. He also has a list of agencies and programs that can help with various things. It's wonderful at how much they are willing to help.

We have been looking at the formula that might be used to provide Landon's nutrition. Here are a couple links: http://pediatrics.aappublications.org/cgi/content/full/118/1/e197
http://grey.colorado.edu/shortgut/index.php/Omegaven

2009-04-24T14:25:00.002-04:00

Jeremiah and Shelly just got back from checking out the Ronald McDonald House. They are very happy with the accomodations and all that they provide. They will be moving over there this evening.

2009-04-24T14:07:00.000-04:00

Kathy with Landon after the first operation.

2009-04-24T14:00:00.005-04:00

Ezekiel, Roger, Jeremiah, with Shelly and Landon. Notice how pale Landon already is from the loss of blood. He became ghostly white by the time they got him to Winston.

2009-04-24T13:38:00.002-04:00

Just got through visiting with Landon and speaking with the nurse. Landon's face is swollen a little. His blood work still looks good, no signs of infection, and his hemoglobin level is now in an exceptable range. The plan now is to reduce his pain medications and then to wean him from the respirator as soon as possible. They have started the intravenous feeding. We asked if Landon would experience hunger pains. He will, especially at first, but he will get used to them and they will eventually go away. He will be able to eat and drink some things but it will not do him any good. Diarrhea and dehydration will be constant problems. As soon as he begins to wake up and they remove the vent tube I will try to get some video clips.

2009-04-24T09:33:00.002-04:00

Kathy and I came home this morning about 2am to sleep in our own beds and to get a change of clothes. We are getting ready to head back to Winston.

I spoke with Jeremiah. Landon is mostly breathing on his on even though he is still on a ventilator. His face has swollen a little. His blood work is still good. His hemoglobin levels are still low, but rising, even though he has received three transfusions.

We will be back down there by lunch and will update this afternoon.

2009-04-23T23:45:00.002-04:00

Landon is beginning to wake up. He is moving his arms and legs and has opened his swollen eyes a little bit. It's too soon to detect any infection and the blood counts are good. He doesn't appear to be in any distress or pain.

They have given Jeremiah and Shelly a room at the Ronald McDonald House http://www.rmhwinstonsalem.org/ (This is not the burger joint). They will be moving over there tomorrow or Saturday, depending on Landon's condition. The family support system here is fantastic. We got them on the waiting list Monday and they have just been granted the room. We were expecting a longer wait.

2009-04-23T22:20:00.002-04:00

I checked on Landon and he is stable.

They have given us a family room here at Brenner Children's Hospital. For those of you that don't know, Brenner is a part of the Wake Forest University Baptist Hospital in Winston-Salem, NC.

We have breathed a sigh of relief. Jeremiah is sleeping for the first time in several days. Kathy has taken Shelly back to the hospital in Statesville, NC to be checked out, have staples removed, and be officially discharged. When Landon was send to Winston, Shelly insisted on leaving the hospital even though she had a c-section just hours earlier. They allowed her to leave by signing a hold harmless agreement and promising to return before midnight tonight.

I have been sitting here looking at web sites trying to learn as much as I can about what the future holds for Landon. Below are some links to some of those sites. I am beginning to see why the doctors were so pessimistic. The complications are many and the life span of transplant patients or patients that continue with total parenteral nutrition (TPN, or nutrition through an intravenous line) are not that good. Well at least he has a chance at a life and the possibility of advancements in medicine.

http://www.eapsa.org/parents/resources/rotational.cfm

http://www.georgetownuniversityhospital.org/body.cfm?id=1343

http://www.columbiasurgery.org/news/stories/2006_intestinaltx.html

2009-04-23T19:59:00.000-04:00

2009-04-23T19:20:00.002-04:00

We have just finished the conference with the surgeon.

The operation went well. There was some inflammation but no sign of infection. They have removed the small intestine and attached the large intestine to the duodenum. They have established a catheter in his right thigh and he has a temporary tube in his stomach. The surgeon said that the catheter in his leg will probably be used to feed him for several years. Now we will be watching for any signs of infection or other complications. The surgeon now seems to be very optimistic.

We discussed what to expect in the short term and long term. In the short term we need to get through the next four days with no complications. After that we will probably be here for about four weeks. We will be learning about how to care for Landon, when he gets home. In the longer term, it is common for the liver to be damaged by the formula used for intravenous feeding. The doctors in Boston have modified the formula and it is not causing as much damage. They have discussed with the doctors here how to prepare the formula.

After Landon gets home there will be constant doctor visits and constant care. It may be several years before the need for a transplant.

I will continue to make updates and post pictures.

Thank you for your prayers.

2009-04-23T18:40:00.002-04:00

We have just been informed that the surgery is completed and Landon has arrived back in the critical care nursery. The nurses have told us that everything went well and we are expecting the surgeon to be up soon to talk to us about the surgery. I will update then.

2009-04-23T17:29:00.000-04:00

We just got a call from the Operating Room. So far things have gone well. They are in the final stages of surgery.

2009-04-23T16:25:00.000-04:00

2009-04-23T16:21:00.001-04:00

Landon is now in surgery. We were told the surgery would take a couple hours. I will update as soon as he is out of surgery.

2009-04-23T15:13:00.001-04:00

I thought I should update everyone on the situation with our new grandson, Landon Allen Joines. Jeremiah's son.

Landon was born early Monday morning, April 20th, 2009. At first everything looked fine. Within a couple hours his abdomen began to swell. A decision was made to send him to Brenner's Children hospital in Winston. The initial diagnosis, in Winston, was that he was bleeding from his liver possibly due to an injury at birth. Several test were done and no blood was found in the abdomen. Tuesday morning they began to suspect the colon. An upper GI was performed and a blockage was detected. They took him to surgery and discovered that his small intestine had twisted and the blood supply was cut off to the intestine. We were told that they would leave the intestine intact and look at it again Wednesday to determine if any blood supply was returning. We were also told that he probably would not survive. On Wednesday they took another look and it was not good. We were told that we should let him go. In the meantime were were contacted by a family that has gone through the same situation. Their son received a colon transplant at Georgetown University and is now six years old. We have been in contact with doctors in Boston that have urged us to pursue a transplant. We are also making contact with the doctors at Georgetown. We have instructed the surgeons here to do the surgery today that will prepare him to survive until a transplant can be done. We are expecting the surgery to begin at any moment. After that we will be watching for any infections or complications. The next week will be critical. We have been told that he has a 50/50 chance of surviving this surgery.

Thank you for all your prayers. We have been through several days of constant tears and appreciate all the well wishes. I will email updates and we are looking at the possibility of starting a blog to keep everyone updated.

Eldon

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