Landen is doing well! Every day proves to be a little better so we are just taking it one day at a time.
Sorry for the lapse in updates. Surgery for a 2 1/2 year old is proving to be a bit more of a challenge, in a number of ways, than when he was younger and both George and I are exhausted and fall asleep the second he does.
Overall Landen has adjusted to the new structure of his anatomy and circulation and his doctors and surgeons are pleased with his recovery of the Fontan so far! He has had no irregular arrhythmia which is common after the Fontan and since he had a lot of Ventricular Tachycardia when he was young this is a great result!
We have had a few bumps still. Post op Landen had a combo Art Line and CVP in his neck. The CVP line, which measures the pressures in the Venae Cavae near the right atrium, got kinked inside his neck. They removed it a few days ago but yesterday an ultra sound of the area revealed a blood clot had formed from the kinked line. It is a non occlusive blood clot which means it does not block the blood vessel. So that is good and makes it less concerning. Landen is already on blood thinners which is what they would proceed with and we will keep an eye on it and hopefully his body will just "wash" it away.
Landen was not urinating on his own and is constipated and has not had a bowel movement. After a few straight caths in the last 2 days, Urology decided to put a foley back in. :( It has been a battle to get him to be regular and the Oxi and Morphine has been needed for pain but they do not help with constipation. SO it is an uncomfortable waiting game for Landen to get things "flowing" again. He is slowly up and walking a little at a time and we pray that he naturally starts to go on his own.
It has been a traumatic week for Landen and anytime a nurse or doctor comes near he puts his defenses up. He will not take his oral meds easily now. He has never been resistant to taking his medication but understandable he has had enough. Also as each day goes by we have a med switch from IV to Oral so it is difficult to get him what he needs. My prayer is that as each day goes by with less intrusive tasks he will realize that all he needs to do is swallow and we will be back to normal with taking medication. It is super taxing and frustrating to watch him struggle with something that could be so easy.
The Last bump is that in watching his chest fluid output we noticed at first the volume was not decreasing and then the color changed to "milky" After taking a sample to test it was found that Landen has Chyle. Chyle is a leakage of lymph from the lymphatic vessels that can sometimes be clipped during surgery cause in Children they are hard to see. So he is now on a low fat/low carb diet to help prevent extra volume to leak and we will just wait till the vessels close up on their own. This means though that the last chest tube he has in will probably be there a little longer than expected.
Slowly but surely we see more of his sweet big smile and fun personality. Yesterday he had a bed full of toys when his sisters came to visit. And he is enjoying his non stop movie stream for sure! He gets comfortable and sprawls out in bed watching a movie, a couple of nurses have laughed and said "Ha, looks just like my husband when he watches the game" :). He has made me chuckle a few times as his smarty pants remarks come out. Yesterday while we were waiting for Dad and sisters to get here I asked "Landen do you want to go for a walk and look for Maddie and Lyla?" He looked away from his movie, gave me a knowing look like, I know your game and said "Mommy you go for walk, I stay here" Ha!! Funny Man.
(The Brave watching Brave :) )
So we are just in the waiting game now. Each day hopefully one more piece of the puzzle falls into place so we can get back home.
Thank you all so much for your thoughts and prayers. They are always felt and we see constantly that God is in control. We are so thankful for you all!
Till the next time either George or I gets a good rest... ;)
George, Ashley, Madison, Lyla and Super Man Landen.
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