Another Catheter

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!

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

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

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.

EJ

Yawkee Family Inn

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

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

Quick Update from Boston

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

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

Arriving at the hospital.

Resting in Bed

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

Take a look at this.

Newspaper Article

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!

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

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!

EJ

Going to Boston

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

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

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!

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.

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!

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

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

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

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