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.