Shelly and I want to thank everyone!

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

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 !!

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

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!

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

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

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!

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

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

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.

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.

EJ

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

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

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?

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

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

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

Family Conference

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