Tuesday, January 24, 2012
It has now been two weeks since Carter was admitted to Seattle Children's Hospital. We have a good news update from the most current post, Carter is eating on his own and all foods and liquids are staying down! That is a major improvement over where he was just a few days ago. This means no yucky feeding tube for now and a decrease in the need to be admitted to the Intensive Care Unit. This means that Carter's days are as "normal" as possible, he can play, have visitors, and go on walks when he feels up to it. He is doing as well as can be expected and is in relatively high spirits. He has gotten some visitors in the hospital and that really boosts his spirits. Even family that can't physically come in to see him have been able to video chat with him. Carter LOVES to hold Teresa's phone and see who is talking to him. I personally made the mistake of showing him a Hershey's Bar and a Coke while we chatted last night. That apparenly upset him because he wanted some. Sorry Teresa and Erick! As always, your thoughts, prayers and support are greatly appreciated. God Bless.
Saturday, January 21, 2012
The last couple of days have certainly had their ups and downs for Carter. His mommy and daddy are both reporting that Carter isn't eating but that his belly is bloated and he keeps throwing up. The nurses and doctors are taking steps to determine if he is sick with a bug of some kind or if it is something else. As of right now they are convinced that it isn't a bug but that perhaps he is "backed up". Regardless of the cause, he is losing valuable weight and is currently being given fluids through an IV and if he doesn't start eating tomorrow they will most likely have to give him a feeding tube. Because he hasn't been eating his kidney levels have increased and his BNP levels, the indicators of degree of heart failure, were up as well. Since they put IV fluids in him those levels have decreased and are manageable again. Teresa and Erick are certainly learning that each day will bring new frustrations but also need to remember that each smile is a blessing.
Also of note, this week the Seattle area received "record setting" snow. I use the " " because anyone reading this outside of the Seattle area will be surprised that the city can shut down with 1 foot of snow, but trust me it can, and did. This is frustrating for anyone, but it had unique frustrations for Teresa, Erick, and other family members. First, gotta give a big shout out and awesome award to my sister Kimberly, who is helping Teresa and Erick out by taking Madison and Clinton during the school week so they can keep as normal a routine as possible. This on top of caring for the four children of her own. Well, with the snow, this week there was no school which meant that Kimberly had six lil' childrens runnin' round the house causin' a good ole ruckus. Thankfully, the roads are finally all cleared and Teresa was able to make it home to Mount Vernon, and was able to pick up Madison and Clinton to spend the weekend with them in Seattle to visit Carter. The doctors have told Teresa that they joy that Carter experiences when Clinton and Madison around is off the charts and truly does help with his health.
Here is wishing all of you happiness, health, and more ups than downs.
Tuesday, January 17, 2012
Monday, January 16, 2012
So, It has been about a week since Carter was admitted to Seattle Children's to wait for his donor heart. This week a lot has happened. Teresa and Erick have been great about trying to keep everyone informed as to Carter's condition, but it can be hard to keep everyone up to date. This week Carter was moved from the Intensive Care Unit to the regular hospital floor after he received his PICC line. The PICC line is essential in his care because it provides a more direct flow of medications to his heart as opposed to a standard IV. As can be expected he is being constantly monitored by the great Doctors and Nurses at Children's and his medication has changed a bit throughout the week to address different needs. Currently I believe he is on 4 different types of medication to manage his heart rate and blood pressure as well as to manage his iron.
Teresa and Erick were able to bring down Madison and Clinton for the weekend to visit their brother. That was a huge morale boost for the whole family. Teresa and Erick have also been allowed a room at the Ronald McDonald house. This wonderful organization provides lodging for families who have to be with their child while receiving long term medical care. Apparently, they have a nice sized room that will accommodate them as well as Madison and Clinton when they are able to be with them in Seattle. They also have a kitchen and a refrigerator which helps to keep mommy and daddy fed on more than cheap hospital coffee and food from the vending machines. Carter's condition is one that truly impacts the whole family!
I think that this week has been about settling in, getting used to being in the hospital for Teresa, Erick, Carter and getting Madison and Clinton on a routine. So many people are helping out and Teresa and Erick are very thankful for everything!
Your kind thoughts and prayers are always welcome.
Thursday, January 12, 2012
On the 23rd of February, when Carter was only 3 weeks old, he underwent his first open heart surgery. He went through a procedure known as the Norwood procedure. This life saving procedure allowed us to eventually take Carter home with us. We knew he was very weak and that the Norwood procedure did not solve the problem entirely. Over the next few months we made many trips back and forth to the hospital for check ups, and for other “minor” surgical procedures. On the 26th of July 2010 Carter was healthy enough to go through the second phase of the surgical process, the Glenn procedure. This was his second open heart surgery. As you can imagine we were extremely nervous for Carter to undergo such an extreme procedure for the second time in his very short life. Thankfully, he came out of the surgery as well as could be expected. Over the next few days and months it became apparent that while the surgery was successful, there were remaining complications, and that Carter was not responding to the surgery as he should be. We went through more “minor” procedures and many, many trips to the hospital.
We have adapted to “normal” life for our family. This means: knowing infant CPR; introducing all of the emergency technicians in our small town to Carter so they can know the details of his care if called in an emergency; having Seattle Children’s Hospital on speed dial; and knowing how to administer feeding and breathing tubes if needed. We have lived this “normal” life since the Glenn procedure while we waited to see if Carter would be a good candidate for the final surgical procedure, the Fontan. This procedure is usually done when the patient is approximately 30 pounds. However, right around Carter’s first birthday there were some complications and between February 2011 and March 2011 it became apparent that he would not be a good candidate for the Fontan procedure and that the only other course of action would be a heart transplant.