Jordan's First St Patricks Day 2011
Monday, March 28, 2011
Much Needed Update
I can't believe its been over a month since my last post. I know you probably think I have abandoned the blog. I know so many of you have been keeping up with us through other family members and care for us deeply... I can't say thank you enough! The prayers have worked again... God is good!
Since my last post so much has happenned... where do I even start? We had great success with raising awareness during CHD Awareness week. I was able to help other families and even talk with several mothers that are fighting the same fight. It has been amazing... I hope that I can continue meet others and help them along their journey.
The time went by so fast and before we knew it, it was time for Jordan's Glenn procedure. The weeks leading up to the surgery were a little nerve racking. We were scared but more than anything knew that it would be very hard to hand him over to the doctors. Days before his surgery we just enjoyed every second with him. We knew God was by our side once again but we didn't know what path he would lead us down. We didn't want to have any regrets so we made sure that we made as many memories as possible with him. He got to eat a sucker, slept in the swing and played outside for many days.
We left home on Sunday for the dreaded ride to Atlanta. On our way up there we stopped a couple of times just to give him (and us) a break. We arrived at the Ronald McDonald house around 8:30 pm just in time to take baths and get ready for our big day. Monday morning we got to the hospital around 9 am and we got all of his pre-op stuff ready for surgery. Children's hospital had contacted us several weeks before surgery and wanted us to help with a media project. We agreed to so they started filming us on Monday afternoon. It was a very long and stressful day. Although Jordan did amazing and everything was a go for surgery Tuesday March 1, 2011 at 7 am. We went and picked up my grandparents for dinner that evening and enjoyed some quality time together at Chili's. By the time we finished dinner and headed back to the RMH everyone else had made it to Atlanta. We all gathered in the family room and spent time together that evening. Everyone was exhausted and knew that 5:30 am would be coming soon so we all went our seprate ways around 9 pm.
There wasn't much sleeping going on that night... Jordan wasn't in his enviroment, I was scared to death and Rho was having to make sure we were both okay. We woke up and headed to the hospital that morning and all I wanted to do was hold him tight. For him to not have had his bottle for several hours he was a happy camper... he was all smiles. We all gathered in the waiting room and played with him until they called us back. I felt like I could run out the other door when the nurse said "Kleckley". But what other choice did we have? It had to be done! He loved on us and watched TV while the nurse took his vital signs. They gave him the sleeping medicine and life was good. They took him from me around 7:30 am for surgery and Dr. Kirshbom came out and spoke with us around 2 pm. It makes for a long day watching your watch waiting on the hourly updates. Thanks to our amazing family that came to support us, time went by a little faster. Dr. K said that everything had gone as planned during surgery and that he felt really good about the procedure. We finally got to see him around 3 pm and it was hard to see the smiling happy baby now intubated and having wires and tubes everywhere.
After surgery things moved really fast. They were working quickly to get him extubated and start working toward pulling some wires. They had him extubated by 9 pm and we were on the floor by 2 pm the following day. I finally had him back in my arms by noon that day...but he wasn't very happy. He was hurting and he would rather be in him bed alone and being still. We did everything we knew to do for him but the change to him was major. They kept assuring us that this was normal and that it normally takes two weeks for them to adjust. They let us go home that Friday March 4, 2011 - YES, we were scared to death and he was screaming every couple of minutes. He did great on the way home- couldn't have asked for a better child. The second we walked in the door it was another story.
He was having terrible headaches from the pressure change from the rerouting of his superior vena cava to the pulmonary artery. It was one of the worst experiences I have ever faced. There was nothing we could do to help him. We were giving him pain medicine every 3 hours and in the mean time whatever it took to console him. There were many hours day and night that we would stroll all over the house. That was about the only thing that would make him happy.
We went to the cardiologist on the following Tuesday and they kept telling us that it was normal and that things would get better. By now exhaustion had set in and we were about to all jump off of a cliff. Every day and night I kept praying God, "Please help him, take the pain away" and sure enough almost two weeks to the day I saw my sweet Jordan again. He started smiling and talking again. It was the best feeling in the world! The Sunday after we got home from the hospital my mama brought my niece and nephew over to see Jordan and visit for a little while. My nephew that is 9 looked up at Jordan and told him "I wish God would take the headaches away from you and put them in my head". Then he looked at me and said "Jordan doesn't know what is going on but I do and I know that the headache will eventually go away he doesn't". That was the sweetest and most sincere moment for him. Thanks Joseph for your unconditional love to Jordan. I know that one day ya'll will be best of friends!
We went to the cardiologist again on March 17th by now Jordan was happy and doing so much better. They did an echo just to make sure everything looked good and another chest xray. We got a great report and couldn't thank God enough for all he had done for us again. Dr Cardis told us that that the valve they had hoped would get better on its own had done just what they had hoped for - it went from moderated to mild leakage. We will contine to watch it and hope that it will get better in time. He said that the Glenn procedure itself looked beautiful. He made the comment that sometimes the HLHS babies just do "ok" but Jordan was doing "very well". That made my heart smile and I knew that God had placed this special baby in my arms for many reasons.
Now that we are home and able to enjoy life we have been staying busy. During the week Jordan and I may get out some but we usually go to my parents for a couple of hours on the weekends. He love to be around people and look at the different things. My boy loves to be outside and watch a wind chime. We haven't ever gone this long without seeing a doctor and it seems so strange. I have been checking his oxygen levels and they have been great! I can't begin to thank everyone again for all the support and prayers. We were at a friends house the other night and one of them told me that the kid next door told her that he prays for Jordan every night. It just makes my heart smile to see how God has worked and continues to work in Jordan's life. He will have the most amazing testimony when he gets older.
I will try my best to do better about posting updates... I get so busy with life and enjoying my quality time with Jordan that I forget to post! Will leave you with some pictures of the wild man! Thanks again and We love you !