The last month - June 28 to July 21

Madden has spent the last month and a bit in PICU. The rest of the unit has turned over multiple times and yet we are unable to find our way out of this place. We know this is where he needs to be so we are thankful that he is there but at the same time seeing Madden stuck is heartbreaking. We know his turn will come eventually, we just wish it would come sooner.

Let's finish getting up to date on Maddens status. Since June 28th Madden has had a lot go on and I haven't written anything down. Which means the following is everything I can remember about the last month in no particular order.

After the cath and ultrasound was done on Madden to see if he had developed any clots as his platlette count has continued to drop. The ultrasound found 3 clots. Two smaller ones in his neck, one on the right and one on the left and a large one in his right femural artery. The one in his right leg is very large and it is closing off the artery. He also has a smaller one in a vein in his right leg. Luckily his body has created other routes for the blood to flow to his right leg so it is still getting some circulation.

On July 2nd Rocky and I both decided to go to Kaelin's game to watch him play. At the game we were given a poster signed by all the players on the team. Kaelin's team has been incredibly supportive of our family during this time.

Our baby's kidneys have not been functioning very well since surgery. Mainly because his kidneys have taken many hits with the meds that he is on as well as the fact that your heart sends blood to the places that need it most and your kidneys are low down on the list. Because of this a pd cathedar has been put in Madden's stomach to help him get rid of fluid and toxins that he is unable to clear on his own right now. Around the middle of July the kidney doctors decided that Madden's kidneys were recovering and they felt he no longer needed the dialysis. The cathedar was removed and his kidneys have continued to improve even with the lasiks he is on to help him offload fluid.

Madden has had a few episodes where everything goes out of whack and the doctors need to up his support in all areas. One time this happened it was so bad that the intensivist that was on shift sat us down and talked to us about ecmo and heart transplants. The also put Madden on level 1 alert, which means the blood bank is prepared should be need to go on ecmo - basically a bypass machine that you are on constantly until surgery...not a good thing. The doctor told us that we are still far away from this but that the conversation is something that needs to be had. It was the hardest thing Rocky and I have had to hear. Neither of us had to think about it, we know that Madden is fighting for his life every minute of every day and we will be with him through this fight until he gives up. We will never give up for him. We will do everything we can to help him fight and fight with him.

Madden became neutropenic, which means he was immunocomprimised. His white blood cell count was 1 and his nutrofills were .1. Both very low. If he were to get an infection he would have nothing to fight it with. The doctors decided to put him on preventive antibiotics just to be safe, of course this like everything else has risks. The hemotologists figured that his bone marrow has been supressed because of either one of the medications he was on (that was discontinued once he became neutropenic) or because he overshot when he got an infection and created so many white blood cells that now his bone marrow is taking some time to recover. Either way Madden's blood cell counts have started to climb again and everything seems to be improving in this regard.

Kaelin and Ryker were finally able to get at Madden to give him some much needed love. I think these moments made everything all better for a few seconds.

<---- July 19

On July 17th Madden seemed to have hit a wall with his progress. He wasn't able to get off the breathing support and we need to figure out why. An echo was done to see if Madden's heart has stopped functioning as well as it was previously. The echo showed a significant narrowing in the descending part of his aorta. The narrowing seemed to be so drastic that the cardiologists didnt believe the results and ordered another echo first thing the next morning. That echo also showed a significant narrowing. Because clinically the narrowing didnt make sense the doctors decided an MRI would be necessary to get more accurate results. The next afternoon (July 19th) Madden was reintubated again and sedated for his MRI. He did very well during the test...because they had to put him to sleep - for the 4th time (open heart, chest closure, cardiac cath and MRI). The MRI showed a narrowing in one of the outflow valves in the heart and also thickening of the heart tissues. Another echo was done later that day to get a better view of a certain part of the heart. This echo showed that the narrowing they initially thought they saw coming from the heart wasn't as bad as they originally thought. Instead they figured that the main issue is that too much blood is being pumped to his lungs and not enough to the rest of the body. In the morning on the 20th the surgeons discussed what potential options there were for Madden at this time. They decided doing anything to Madden at this time is way to risky seeing as how he is only 6+ weeks old and very fragile (the poor kid hasn't grown in height or length and still weighs less than he did at birth). The plan is to leave Madden intubated and sedated enough to be comfortable for the next week or two and try to get him to grow then reevaluate. The hope is that Madden will then be strong enough to be able to breathe on his own and be able to handle the amount of blood he is sending to his lungs - which will hopefully be less.

And this is where we are at....

Madden we love you as big as the sky and can't wait for the day we can bring you home! xox