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.