We learned a lot about intestinal transplant while 'vacationing' in Pittsburgh this last week. Granted our vaca was limited to a two block radius and was spent indoors most of the time. Pitt was a nice city for what I saw of it. Here's what we were told by each team that we saw:
Neurology: Caleigh's PVL/CP isn't a problem when it comes to transplant. The transplant team wanted to be reassured that Caleigh's brain would be able to handle the difficult surgery. Neuro says 'all clear' from their point of view.
Pulmonology: They think we should try a steroid treatment to help get Caleigh off of the oxygen. The consensus is that Caleigh's lungs are ok to handle the surgery as well. I'm going to call our lung doctor tomorrow to ask about the steroids....
Cardiologist: We've never had to see a heart doctor before......until now.....Caleigh seems to have a
, a tiny pin like hole in the heart. This is entirely common, 1 in 3 people may have it and don't even know about it. The cardiologist didn't hear a murmur or anything like that. She says that the PFO isn't a problem and that the surgery to fix it is more of a risk than the actual condition is. Like we needed something else to add to our list.........seriously? As far as transplant, there shouldn't be any problem.
Gastroenterology: The GI doctor up in Pitt didn't really have much to say and didn't listen to us much either. He seemed preoccupied and frankly we weren't impressed.
Nutrition: They came and changed up a few things in Caleigh's TPN. Added vitamin K, Zinc and selenium. Also adjusted some of the numbers on other additives. TPN is a balancing act and I'm glad we got a second opinion.
Psychologist: Not for Caleigh, but for Eric and I. We each had to sit down with the program's psychologist and talk about our routine, feelings, support system etc. etc. She seems to think that we have a good grasp of things and I'm sure she will recommend that we are fine to go through with transplant.
Pediatric Surgery: This was the man to talk with. Surgery had the most info for us. Our surgeon, here at home, wanted us to go to Pitt for a second opinion before we jumped into another surgery since Caleigh and surgery don't mix well. When we got there and started the x-rays and tests they discovered that Caleigh's bowel is dilated like crazy above a small narrow area that connects to the colon. We already knew this....... So the plan is to have surgery, cut away the narrowing and either do the STEP procedure (the surgery we had planned on back in Dec.) or taper the dilated section of bowel. What ever looks best once they get in there. Also they are wanting a current liver biopsy to make sure Caleigh's amazing liver numbers (total bili .2) are true.
Now here's the decision......where do we have the surgery? Pitt tried to 'sell' us having surgery at their hospital stating that they have a whole intestinal care team to work with Caleigh during recovery. We made an appointment with our surgeon for next Monday to talk about the surgery. He's been in Caleigh's belly 6 times, he knows how she reacts to surgery, at Cook's we can stay with Caleigh in the ICU and in Pitt we can't stay with her, plus we would have to stay in Pitt for recovery time. Unless our surgeon is uncomfortable doing the procedure, the pros of having Caleigh's 7th surgery at home are winning the game. We'll see what he says......
Transplant Surgeon: Dr. George M. is the intestinal transplant surgeon at Pitt. Very nice man and listens very well. He seems to think that we need to try the surgery and he wants to know how the recovery goes after the said surgery. Then he will want to see us for a follow up evaluation about 2 months after. He asked if we were ready for transplant and I told him that if we got the call tomorrow, that we would have to pass because we haven't tried everything in our power to rehabilitate Caleigh's intestine. We also explained that we still have interest in being listed so that we can get some seniority in case we need to do transplant in the future.
Tomorrow, Monday the 12th, we will get a phone call from the transplant coordinator letting us know the teams final decision and suggestions. I'm anxious to hear what they have to say, but I think we already know what that will be.
So here are some facts about intestinal transplants.....
Intestine Transplant (in our mind) is a trade off. We wouldn't have a short gut baby anymore. We would have a transplant baby. Transplant isn't always the magic answer, but it does allow more 'time' to a critically ill child's life. Eric and I have decided that since Caleigh's liver is doing so well.....why rock the boat......Until her liver is on the brink of failure we are keeping transplant far in the back of our minds.
With the current treatment and drugs used the statistics only go out 5 years right now with a survival rate of about 80% after those 5 years. This is great compared to past methods and drugs used, but not knowing 10 yrs down the road statistics is hard to swallow.
Most children Caleigh's age get off of TPN within the first 6 weeks after transplant. All intestinal transplant patients have to take daily anti-rejection medication for the rest of their lives.
The oldest intestinal transplant patient to survive is now 19 years post transplant and doing fine.
There is only one intestinal transplant patient that has been pregnant and given birth in the world. No problems and her baby is now 2.
60% of all intestinal transplant patients reject their new organ. This is normal and if caught early enough the rejection can be stopped. Only 8% of patients have what is called chronic rejection and most of these patients end up having to remove their new organ and usually don't get another.
50% of the population doesn't even think about or are against organ and tissue donation.
20% of the organs that Pitt receives are from children who were in ATV accidents. 4-wheelers, motorcycles, etc. most of these children have suffered head traumas, but their organs are still viable. Another big percentage of childhood death is falling down stairs and asthma attacks. These children don't have brain function but their organs are usually unharmed. It's hard to 'give' your child's organs after a traumatic loss such as that. You know, until Caleigh, I didn't look at things in life a certain way. Compassion has taken over and I have a new love for many things, organizations and people, that in the past, would have never crossed my mind. Maybe because you are reading this, you might discover your own compassion for something new.
Make Organ Donation a priority in your life because you never know who's it might save. Not just intestine, but liver, heart, lungs, kidneys, bone marrow, tissue, cornea, stomach, pancreas and more. Think of how many lives one person can change with just one decision. If it is right for you, please register to be an organ donor and make sure your family knows of your decision. You can click above to learn more about organ donation.
Wrapping up......On the way home from Pitt, the plane ride was wonderful again. So much so, that as a family we slept the whole way home. What a nap! It was nice to finally get back home and to have this adventure behind us. So we move on to the next thing........whatever that may be.