James & Maddie updates

It has been a couple of days since I sent the last update. James has made slow and steady progress. His platelet count is slowly stabilizing and he is gradually going a little further between times that he needs additional platelets. His respirator settings are almost down to the bare minimum. If he were not healing from his surgery they are actually at the settings at which they would normally move him off the ventilator, however, they will likely keep him on it until they have figured out how they are going to handle the PDA and feel he has totally stabilized from his surgery. Tomorrow they will do an echo (ultrasound of his heart) to look at it to see if it has made any progress toward shrinking and closing on it's own. We thought they seemed to be leaning toward performing surgery on the PDA next week if the echo showed it was not closing. This concerned us a bit and we talked about it with the surgeon that performed the work on his intestines (Dr. Krishnaswami), and he felt that the best situation for James is for him to have as much time to heal from his previous surgery as possible. He is going to recommend this to them as well, and seemed to think there was very little chance of them doing anything to the PDA anytime soon, unless there was a critical need to do so.

The talk we had with him was very candid and he helped us get a better understanding of what lies ahead for James. Lisa and I initially had the impression that James would likely have the surgery to reconnect his intestines in 8 to 12 weeks. After talking with Dr. Krishnaswami, we learned that the soonest he was likely to have the reconnection done is actually going to be closer to 6 months or possibly even longer. We also got a better understanding about how much intestine James actually lost and what he is battling against. Basically he only has about 50 cm worth of intestine. 20 cm comes from the stomach out to the stoma. This is a very small amount and this is the only amount that they have to work with when they introduce feedings to try to get him nutrition from another source other than his TPN from IV. James was very fortunate because he essentially has the bare minimum amount of intestines, and had there been any more damage he would not have had enough to introduce feedings whatsoever. This means that it will be a long road for him and they want to stretch out the time between reconnecting to give his body a chance to add some length his intestines. The hope would be that his body would continue to grow and add some length so that he can reduce the amount he needs from IV and increase the amount he gets from feedings. He will almost definitely need some relatively high level of nutrition and feeding from TPN from the IV for at least his first year of his life if not longer. A week from now, we will sit down with the doctors and a care team to get a better understanding of what all lies ahead for us. We'll get a better idea then as to if/when James would be able to come home during all of this. Also, please pray that his tissues would continue to get rid of all the excess fluid he is carrying (since the surgery he's gained over a pound of fluid, which is 1/3 of his body weight!). One complication he's having from this is that fluid is collecting in his tissues instead of his veins/arteries, so it's making it very hard for the nurses to find good veins. Last night they had to try 6 times to start an IV and those all failed, so they had to resort to placing an IV line in his scalp, which we were really hoping to avoid. Also pray that his open wound continues to heal (a long process) and that all infections are kept at bay. He can't afford for anything else to go wrong.


Today (Monday) is Madeline's ureter surgery. She goes in at around 10:30am, so I will try to send out an email later in the afternoon to let everyone know how things went. We'll be up at OHSU/Doernbecher Children's Hospital with her and then shuttling ourselves between there and Emanuel to see James. Our lives will definitely revolve around hospitals this week!

Thank you all for your prayers for our children and our family. It is such a wonderful blessing to us to have so many people praying for our children and family's well being.

Love,

Keith and Lisa