We have been working so hard to raise awareness in the local area for CHDs. Jordan and I had a busy week and we are so glad to see nothing in our future this week. We do have a cardiologist appt Wednesday but that is it... YAY! That getting dressed every day is no fun! LOL He is so funny as my grandmother says "he smells a rat", when he wakes up and I am getting dressed he freaks out. He automatically thinks "doctors appointment"- poor fella can't catch a break.
Last Thursday - We went to Cuthbert(my Home town) and met with the Mayor and he signed a proclamation for the City of Cuthbert to recognize CHD Awareness week.
Monday- I met with Mayor of Albany - Dr Willie Adams and he signed the proclamation for the City of Albany to recognize CHD Awareness week.
Tuesday- Jordan was the star and was on WALB our local TV station. He really did well and I was so proud of him for being so sweet.
Wednesday- We went for a quick visit to see Jordan's new friend Olivia. Olivia needed to borrow Jordan's swaddle blanket so her mama and daddy could get a few hours of rest.
Thursday- We were so excited a day alone and we were staying in our PJs all day! NOT! Something just told me to check his oxygen saturation levels and they were 77-79. I remained calm but immediately called the cardiologist, they wanted his pediatrician to see him ASAP. So that meant I had to get dressed. Granny Lucy and Grandaddy Ron watched Jordan while I rushed and got dressed quickly, took him to the Dr to find out he has another ear infection and a viral infection. The doctor never really explained to me what his viral infection was, he just gave us antibiotics. I called the cardiologist after the appt to make sure it was OK for us to give Jordan the medicines he had prescribed. Then they tell me "If he doesn't get better and he started changing for the worse, take him to the ER." So trying to remain calm we monitored his oxygen levels for hours and both slept with one eye open all night.
Friday- He seemed to be doing much better. His sats are hanging around 79-80 so I can live with that number. I really feel like he is cutting teeth - EVERYTHING goes in his mouth and he drooling. He keeps his hands in his mouth all hte time.
We have a cardiologist appt this week and I am so ready. I just want them to check him out and make sure everything looks OK. If he were to tell us that we needed to be in Atlanta on Thursday for surgery it wouldn't be soon enough. We are so ready to get this dreaded time behind us and be able to enjoy him for a long time. I just find myself being so scared that something is going to happen and we won't be able to have surgery on March 1st. I am ready to have the shunt out and get him healed and happy.
We just want to say thanks to everyone for the love, support and prayers. We have been so blessed with praise for our hard work to raise awareness. I set a goal to help other and we have accomplished that goal. We have been contacted to do other media projects and also by some families that are on their own CHD journeys that just needed a comforting conversation. Please pray for Jordan to remain healthy and that God will continue to bless him everyday.
Thank you for coming here to support our family through this exciting but challenging period of our lives. As most of you are already aware, Jordan was diagnosed with Hypoplastic Left Heart Syndrome. We have set up this site to help keep our family and friends informed through the birth and surgical procedures of Jordan's life.
Sunday, February 13, 2011
Sunday, February 6, 2011
Wednesday, February 2, 2011
Update 02-02-2011
I can't believe it has been a month since I last posted... where does time go? We are all doing well and just enjoying being home with no excitement. We stay busy with doctors appointments and visits from family and friends.
We went for his heart cath on Jan 6, 2011 and it went as expected. The results of his pressures were good and they said we could proceed with the next surgery. While we were at Children's for his cath the doctor was a little concerned with his oxygen levels. His normal O2 levels are 84-80 but his that day were 75-65 so they decided they would keep him overnight. Which was fine with us because I couldn't imagine getting home and needing to be in Atlanta for an emergency situation. The next day they checked all of his levels and agreed he was ready to go home. Thankfully were on our way home by noon!
The following week after the cath Jordan developed a ear infection. I started noticing him pulling at his right ear. We couldn't tell if it was an infection or did he just find his ear? Home health care came that day and they agreed it was probably a ear infection. He had started getting congested and his O2 levels were dropping again. I took him to see pediatrician and he had a double ear infection. With two rounds of antibiotics they are gone and he is doing much better.
Dr. Kirshbom's nurse called me last week to confirm surgery. Every time the phone rings and it comes up Children's my heart stops. When I answered the phone Tracy wanted to make sure March 1, 2011 was still ok. She told me what to expect and when to stop his medicines. I just sat there and cried for hours after the call. I still question "why" but I am so thankful that Jordan is as healthy as can be for his condition. I am so thankful for him everyday! It will be super hard to hand him over to the doctors this time. It was hard last time but I still feel like I was in a bubble and don't remember half of what happenned.
CHD Awareness week is Feb 7-14th so I have been working on several little things to raise awareness. I just spoke with the Mayor of Albany and he will sign the Proclamation on Feb 7th and Randolph County will sign their Proclamation on Feb 8th. I have also got appointments set up with WALB (local tv company) and The Albany Herald (local newspaper). The Charter School will also be doing a fundraiser that will go towards research that same week. I am very excited that Jordan's broken heart may save someone else's life.
We went to the doctor today and he got a good report from the cardiologist. No changes and he says he is still good for surgery on the 1st. We also had an appointment with his pediatrician and his ear infection is all gone. He had to get his 4 month shots and he was not a happy camper! The doctor also told us that he is in the 25th percentile of weight and height. She said when he came for his 2 month check up he was so little the was not even on the chart. We are so excited that he is growing to be big and strong.
We are asking everyone to continue to pray for him to have strength to go through surgery. Please pray for the doctors and medical staff that will be caring for him. And also pray for us as we hand him over to the doctors. We love this little guy so much!
We went for his heart cath on Jan 6, 2011 and it went as expected. The results of his pressures were good and they said we could proceed with the next surgery. While we were at Children's for his cath the doctor was a little concerned with his oxygen levels. His normal O2 levels are 84-80 but his that day were 75-65 so they decided they would keep him overnight. Which was fine with us because I couldn't imagine getting home and needing to be in Atlanta for an emergency situation. The next day they checked all of his levels and agreed he was ready to go home. Thankfully were on our way home by noon!
The following week after the cath Jordan developed a ear infection. I started noticing him pulling at his right ear. We couldn't tell if it was an infection or did he just find his ear? Home health care came that day and they agreed it was probably a ear infection. He had started getting congested and his O2 levels were dropping again. I took him to see pediatrician and he had a double ear infection. With two rounds of antibiotics they are gone and he is doing much better.
Dr. Kirshbom's nurse called me last week to confirm surgery. Every time the phone rings and it comes up Children's my heart stops. When I answered the phone Tracy wanted to make sure March 1, 2011 was still ok. She told me what to expect and when to stop his medicines. I just sat there and cried for hours after the call. I still question "why" but I am so thankful that Jordan is as healthy as can be for his condition. I am so thankful for him everyday! It will be super hard to hand him over to the doctors this time. It was hard last time but I still feel like I was in a bubble and don't remember half of what happenned.
CHD Awareness week is Feb 7-14th so I have been working on several little things to raise awareness. I just spoke with the Mayor of Albany and he will sign the Proclamation on Feb 7th and Randolph County will sign their Proclamation on Feb 8th. I have also got appointments set up with WALB (local tv company) and The Albany Herald (local newspaper). The Charter School will also be doing a fundraiser that will go towards research that same week. I am very excited that Jordan's broken heart may save someone else's life.
We went to the doctor today and he got a good report from the cardiologist. No changes and he says he is still good for surgery on the 1st. We also had an appointment with his pediatrician and his ear infection is all gone. He had to get his 4 month shots and he was not a happy camper! The doctor also told us that he is in the 25th percentile of weight and height. She said when he came for his 2 month check up he was so little the was not even on the chart. We are so excited that he is growing to be big and strong.
We are asking everyone to continue to pray for him to have strength to go through surgery. Please pray for the doctors and medical staff that will be caring for him. And also pray for us as we hand him over to the doctors. We love this little guy so much!
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