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.

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

Kathy and I finally got to hold Landon.

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

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

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

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.

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.

Landon is becoming even more active.

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.

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.

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.

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!

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.

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

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.

Kathy with Landon after the first operation.

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.

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.

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.

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.

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

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.

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.

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

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.

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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