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