Monday, December 20, 2010
Thursday, December 16, 2010
We have a follow-up appointment with cardiology at UAB on Monday at 1:00. I am hoping that we will get off some medicine. Jack takes lasix twice a day, blood pressure medicine once a day, potassium medicine because of the lasix twice a day, and a baby aspirin once a day.
Wednesday, December 15, 2010
Tuesday, December 14, 2010
Monday, December 13, 2010
Tomorrow we have another x-ray to check for fluid in his chest and lungs and blood work. But as long as both look good we can walk out the doors. We will meet with EP (pacemaker people) one more time, too. We are a little discouraged about Jack's pacemaker. On Friday the pacemaker was set to watch his own rhythm and pick up if his ventricle doesn't beat. Well, as of today his ratio is 2:1 (for every 2 beats of his atrium, he is only pumping his ventricle once) so they had to set his pacemaker to beat his ventricle every time. So, in other words he is continuously being paced. In any other kid, this would not be a bad thing, but Jack only has one ventricle and this constant pacing is not good on the longevity of his one ventricle. We need this one ventricle to last the rest of his life, in order for him to avoid a heart transplant, and if the pacemaker weakens this ventricle it might cause us to have a transplant sooner rather then later.
So, because of the pace maker, Jack will not suffer a stroke due to a irregular heart beat, which has always been a huge fear for me. But the pace maker could cause Jack to need a new heart...and after our time here at the hospital, I just don't wish that on anyone!! I sit day after day while here in his room and walking the halls of the 8th floor, and I see all these kids and adults who are just waiting...waiting on a second chance at life, and it is so depressing and sad. All of these people deserve that chance...the chance to live without having tubes keep them alive. I know that Jack is special...and I know that I have to let his heart and his life go and just live each day. His life is in God's hands! It is just hard to let him go sometimes. I am a fixer and a planner and I can't do either for Jack. I am having a hard time dealing with that.
Jack has had a pretty good day. We played a lot in the play room. He met a lot of great friends...and loved the train set that they have in the play room. We also found a trike that Jack just loved riding on around the halls. I don't think I have seen him smile this much since before surgery.
Sunday, December 12, 2010
Saturday, December 11, 2010
So, to date we are on blood pressure meds, lasix, and some other diuretic. He is also taking miralax, because he has not pooped yet...but I am hoping that walking around will help with this, and some pain meds...
We are moving in the right direction...just slower then i would like. :)
Friday, December 10, 2010
Thursday, December 9, 2010
Jack's oxygen kept going down throughout the night and into this morning (down to 80% with 2L of O2). The docs kept saying it was the pain and fluid...but after some chest x-rays, it was determined that his right chest tube had a blood clot in it. The nurses did some messaging of the tube and got the clot to break up and now he is draining like crazy. His oxygen has gone up to 90% on .5L of O2. His tummy was so descended before, is now coming back to normal. His weight is even better. He was up something like 3 pounds since surgery (which makes no sense because he is hardly consuming any fluids)...they are going to recheck his weight when he wakes up.
Poor guy tells everyone "no" or "not this" when they walk in the door now. If I ever thought he had a dislike for doctors and nurses before, well, he definitely does now. He is not up for talking much. But I am hoping that once all this fluid leaves his chest and belly, he will feel better. The doctors are saying that he should get the chest tubes, external pacing wires, and his dressing out tomorrow and we have a scheduled echo at noon on Monday. Dr. Breitbart said that we will be here at least a few days once the chest tubes come out. We are also waiting to hear if they want us in Boston for our first follow-up appointment or if we can do it in Birmingham.
Every time Brian or I get a little antsy about being here, we just look at our roommate or the other kiddos on the floor and see how blessed we are. Our little roommate is waiting on a heart transplant. He has TGA but a couple of hours after is corrective surgery when he was just days old he suffered a massive stroke in his carotid artery that should have killed him but instead he lived. However, the stroke has caused so much damage to his heart that it is no longer working for him and he is here waiting for a new one. It is hard to feel sorry for yourself, when I know we get to go home next week...and this guy might be here for who knows how long.
Wednesday, December 8, 2010
I am hopeful that things will keep going in the right direction. Of course, I analyze all of his data on the computers and I ask questions every time, but everyone says it is all the way it is suppose to be for now. So, I try to turn my brain off from what I know and relax. Easier said then done.
Tuesday, December 7, 2010
Hoping and praying this does not set Jack back too far!!
An unexpected turn happened at around 9:30am when the surgeon came by to take a look at Jack and review his post-op x-rays. He noticed something odd on the x-ray. After more films where taken and a lot of other doctors reviewing the films, it was concluded that they think they left a sponge in his abdominal cavity. So, our whirlwind began...Everyone saying "sorry", "this has never happened here", and things like that. So, poor, sweet Jack is currently being put back under with a tube being placed so the doctors can open him back up to see if, in fact, they left a sponge inside him. The surgeon is just beside himself and said that the counts in the OR accounted for every sponge, so he doesn't know how this could have happened.
A friend sent me this verse: "This is the only thing I could think of right now:
"Hear my cry, O God; attend to my prayer. From the will I cry unto thee, when my heart is overwhelmed; lead me to the rock that is higher than I." 61:1
Monday, December 6, 2010
Thank you, everyone, for all of your sweet notes, thoughts and especially prayers!! Brian and I would not have made it through today without them!!
Sunday, December 5, 2010
Friday, December 3, 2010
So far, things could not be going any better!! Keep up the prayers!! I have felt such a peace...thank you!
Thursday, December 2, 2010
Thank you so much for all your prayers and thoughts!! They were truly felt all day long!!
Before I explain...imagine this image switched with the left side being on the right and the right side being on the left (which is Jack's defect L-TGA with double inlet single ventricle and pulmonary stenosis). So, the Fontan consists of stitching the superior vena cava and inferior vena cava through the anatomical right atrium (R.A. in this picture, L.A. in jack), making an artificial wall to make a chamber and leaving a small hole for pressure to not build up, and cutting the pulmonary artery away from the hear itself. The small hole is likely to close up on its own as the body learns to function with the new O2 stats. If it does not close up within a year, they will go back in and close it. It is really fascinating when you stop and look at it. It is truly amazing how far modern medicine has come.
Monday, November 29, 2010
Sunday, November 28, 2010
I have changed jobs. It has been a huge change for me. I just loved my old job at the The Bell Center. I loved everything about it, except it kept me from my own kids. I am now working part time, and I am able to spend more time with Jack and Evie. I am working for a company called pediatric associates, inc. I am still working with some in early intervention, but also doing some school systems. The flexibility is awesome.
Jack is great!! What a joy...and a tester at the same time. He loves buzz and woody and everything Toy Story. He goes everywhere is a houndstooth Bear Bryant hat that he calls his cowboy hat. I am going to write more about him in the next post. But for now...here are some great pics!!