Saturday 1:15 am
So much for a good nights sleep. Just got phone call from Samuel’s nurse. While she was checking on the little girl across the hall, Samuel woke up and pulled is intubation tube out. So much for those arm restraints! She said he is doing fine, but I am not. I know it had to hurt and I am mad at myself for letting them talk me into leaving. I am headed there now and will not be leaving anytime soon!
Friday 11:30 PM
We have returned to the room to try and get some sleep because they will keep him sedated all night. The Dr’s will meet at 8 am to determine if they will remove the intubation tube or not. He was given a combination of 3 medications to keep him sedated, but was waking up every 30 min. so they moved to something stronger to keep him out. He has a slight fever still (101.5) which they say is normal after surgery. After 24 hrs they will start researching why, if it has not gone down. As you can see from the pictures, it is’t a pretty sight. I just pray he rests well, his body reacts well to the band, his fever returns to normal, he handles the removal of the intubation tube well, he feels little pain, and that he will not remember this tramatic experience! I also pray for some rest, I am running on very few hours, and once the intubation tube is removed one of us will be bedside 24/7. I also have a sore throat and some chest congestion, this is not the time to be sick, so I pray this is all miraculously gone in the morning! Love you all!
Friday 12:30pm
Dr. Mee said the surgery went well and he was able to get the ring pretty tight. Samuel is in ICU and they will keep him knocked out until in the morning, when they will gradually ween him off some of the drugs. He will probably remain in ICU 2-3 days. We are able to stay in the room with him. He looks good, even with all the tubes coming from every inch of his body. I will try to post some pictures tonight. Pray that his body will adjust as he comes off the medication and the pressure doesn’t increase, or they would have to go back in and loosen the ring, and since Dr. Mee leaves for a 2 week vacation tonight, I pray there are no complications!
Thursday 11:00 pm
I am physically, emotionally and mentally exhausted, so I will give a quick update before hitting the sack. We have to be at the hospital in the morning at 6:15 am, with surgery planned for 7 am. We have had a wonderful experience here. Everyone has been so helpful and comforting. We met with Dr. Mee this afternoon. He and Dr. Latson, who did the heart cath, worked together to determine our options. Having only a single ventricle, too much blood has been flowing through his lungs, 4 times as much, to be exact. As a result, the body’s natural defense is to build up the muscle around the walls through which the blood flows, thus resulting is less flow. As it gets thicker and thicker, his chances for intervention and options lessen. Normally by 3 1/2 years of age, the walls would be too thick to consider surgery to refeverse. Going in to the heart cath the dr’s were expecting that to be the case, but were pleased to find that they are at a level we can hopefully reverse the damage some. The will do open heart surgery and place a ring around the vessel/ artery (not sure exactly) that carries the blood to the lungs. Hopefully the muscle will respond to the oxygen and reduce in size. He will gradually get bluer and bluer until his oxygen saturation reaches a level in the low 80’s and then we would move to the next step of treatment. He will hopefully then be a candidate for fontan surgery. I’m not exactly sure what this is, but plan to research it when I have more time near a computer. It is a miracle that we have this option. If the walls would have been too thick to do the ring surgery, which they were expecting to find, our only option would have been a heart and lung transplant down the road. We were told the success rate, if these organs became availible, was 40-50 percent and then only a 20 % rate of success for them taking. We are so thankful that this is not our only option. As with any surgery, there are many risks, so please praw the surgery is successful, uneventful, no infection, quick recovery and strength for us all as wego through this. It has been overwhelming to imagine them sawing his little chest open, but I continue to seek strength and comfort from our ultimate healer, our precious Lord and Savior. We have had a wonderful day with Samuel, and a sweet time of prayer over him tonight. Thank you all for your many prayers. I will update as soon as I can. The only internet service is in our room, where we will spend little time. We can be reached any time on our cells and Cole’s Blackberry (cole.portis@beasleyallen.com) I miss you and love you very much SK, Elizabeth & Jon Cole. I hope someone is giving you huggs and kisses from me every day! Have fun at the Thanksgiving Feast …