Tuesday, February 26, 2008
Friday, February 22, 2008
I am exhausted!
I had to take Noah up to the hospital today. We figured he had ear infections and to play it safe we figured it was best if we verify it rather than just calling in an Rx. Well, it's a good thing we did cause it wasn't his ears.
So we called Cardiology and Dr. Everett wanted to see him right away. So we (actually ME carrying Noah's heavy car seat, my purse, and the diaper bag cause the stroller was in the other car) walked over to PCMC. He had an Echo which took forever because they kept wanted to redo it different shots since they looked different than last time (of course THAT was nerve racking) then we had an EKG and blood pressures, then we had a chest x-ray.
Everything was fine. In fact, his heart wall is getting thinner finally. So it's NOT rejection. But it was a good 3 hours of silent panic.
So, since something is still definitely wrong, we did an abdominal ultra sound too. Just to make sure his liver was ok and there weren't any stones left behind. We checked his kidneys, pancreas, liver, bile ducts, etc. All was fine there too.
So, we still have NO idea what his deal is. But we are going to go check tons of labs and his med level again on Monday.
They test his Cyclo level using a different method now. And they say it's about 20% lower than how the old test would show but when we were doing both it was always more than 20% lower. Well, right now Noah is sitting at 80 on the new test. He needs to be 100-150 on the old test. So he is sitting at 100 if the new test really is 20% lower. But since it's normally a little more, we are going to raise his dose.
I know Denver likes to keep the med level as low as possible and Primary's keeps them MUCH higher and I don't want to raise them to PCMC levels, but I don't want him sitting on the lower threshold right now either. I figure it's better to be slightly higher during this first year then after that, go for the lower end. So we are changing his dose a bit. Which makes me feel better.
But once Denver shows his one year cath and echo are all clear, I am going to try and keep his meds at the lowest dose possible to avoid the nasty side effects and kidney damage.
Anyways... I'm tired, Noah was so tired he has been asleep since the moment I put him back in his car seat. And while we don't know whats wrong just yet, at least it's NOT his heart.
With Much Love, Crystal at 7:22 PM
Thursday, February 21, 2008
I just love this little man SO much. And I think he is the cutest thing EVER!
When I am on the computer... working, bloging, researching, chatting, whatever... I always come back to this site over and over again just to see his cute picture in the header.
Does that make me silly?
It makes me Mommy.
With Much Love, Crystal at 11:42 PM
Wednesday, February 20, 2008
Sunday, February 17, 2008
Things ended up turning out very well...
Noah has NOT gotten any sicker and seems to be well managed with some Tylenol. He has started to eat a bit more and doesn't seem to be breathing as heavy but he still gets mad if the Tylenol wears off. So I'm sure he is still fighting something. But for now we are good.
This coming week should have been a no hospital visit week but since last week his Neoral (cyclosporin which is his main anti-rejection med) was too low, we have to have it checked again this week to make sure his new dose it enough.
Owell... at least thats a quick visit.
Thank you so much for all your thoughts, prayers, and supportive comments. It really is very comforting to me to know you are all out there keeping Noah in your hearts.
With Much Love, Crystal at 11:51 PM
Friday, February 15, 2008
We went to the hospital again today. Noah still isn't eating very well... actually he is hardly eating. He is also breathing very fast and is extra irritable. His sleep habits are all messed up too. He is napping much more but doesn't want to go to sleep at night. (that happens to me when I'm sick too)
Dr. Samson-Fang joked with us that he always seems to get sick on the weekend. She wasn't joking either. I can't believe for how well he is doing and how relatively healthy he is considering everything that we still end up at the hospital 3 times in one week.
Anyways, she isn't sure what his deal is. He's probably brewing something and we just have to wait until he gets sicker to find out. Which will probably be Saturday Night since thats the most inconvenient time.
He might have C.Diff again. He might have something up with his liver. He might have pnemonia. He might have something else completely. These were just the things that were on the top of the list. His ears surprisingly looked fine. There was still a little fluid behind one but it didn't look infected at all... and the weird thing??? Still no fevers. Dr. Everitt (his cardiologist) said he can still get infections even though he's immune suppressed but he never seems to get them, even with RSV and Lilly had a really high fever. Go figure.
Anyways, we'll wait out the weekend and hopefully he gets better not worse. But we have to go back next week regardless so we can check his level again since it was too low last week.
With Much Love, Crystal at 10:39 PM
Thursday, February 14, 2008
As many of you probably already know, today is not only St. Valentine Day... it's also Congenital Heart Defect Day (the ending of CHD week). This is a very special and reflective day for us as Noah was born was several Congenital Heart Defects.
- It is estimated that 40,000 babies are born each year with Congenital Heart Defects in the United States alone.
- CHD is the most frequestly occurring birth defect and is a leading cause of birth-defect related deaths worldwide.
- Some CHDs may not require treatment, other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really cured.
- Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months or even years after. In some cases, CHDs are not detected until adolescence or adulthood.
- Many cases of Sudden Cardiac Death in young althletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.
Despite these statistics, newborns and teen-aged athletes are NOT routinely screened for Congenital Heart Defects and a disproportionately small amount of funding is available for research and support.
Signs and Symptoms
Parents should be alert to the following symptoms in infancy:
- Tires easily during feeding (i.e. falls asleep before feeding finishes)
- Sweating around head, especially during feeding.
- Fast breathing when at rest or sleeping
- Pale or bluish skin color
- poor weight gain
- sleeps a lot - not playful or curious for any length of time.
- Puffy face, hands and/or feet
- Often irritable, difficult to console
Some children with CHDs may not have any symptoms until later in childhoos. Things to look for include:
- Gets out of breath during play
- Difficulty "keeping up" with playmates
- Tires easily/sleeps a lot
- change in color during active play or sports (looks pale or has a bluish tint around mouth and nose)
- Frequent colds and respiratory illnesses
- Slow growth and weight gain/poor appetite
- complains of chest plain and/or heart pounding.
If your child has two or more of these symptoms, talk to your pediatrician about a referral to a Pediatric Cardiologist! Click Here for more information.
Since Noah was born with Critical Aortic Stenosis and an Abnormal Mitral Valve with Significant Regurgitation, his CHDs were unable to be fixed. Instead, he required a Heart Transplant for a second chance at life. So in bringing awareness to CHDs we also strive to bring awareness to Organ Donation. Please visit the National Transplant Society website and the Donate Life America website to learn more about Organ Donation and to sign up to become a Donor. Please don't take your Organs to Heaven. Heaven knows we need them here!
And a special Thank you to Noah's Donor Family. Who during a most dificult time, chose to donate life and gave Noah a new heart.
With Much Love, Crystal at 7:48 PM
Monday, February 11, 2008
Noah's appointment today went great! His liver tests all came back normal. His heart looks great... there is NO CoArch, his EKG was normal, and he wasn't upset when they pressed his liver. So maybe it was just gas or something.
So Noah continues to do really well. His next appointment will be in 3 1/2 weeks. That will be the longest stretch between appointments then we have ever had. I wonder how crazy I will be making myself by then??
This past weekend I wouldn't allow myself to think about todays appointment. I didn't want to get all worked up for nothing. And now that I know it was nothing I am really glad I didn't.
But Thank you for your prayers and support.
With Much Love, Crystal at 3:25 PM
Sunday, February 10, 2008
So tomorrow I will be taking Noah to PCMC first thing in the morning to check med levels in addition to checking his liver function. Then, we'll do his regular cardiac check up... echo, ekg, etc. Hopefully everything is ok and this Liver thing was just a random fluke that has already resolved itself. Either way, I will update once I get home.
Thank you for your prayers though. I can't tell you how much I rely upon them to help me stay calm when I am worried about something. Not to mention that I know they have and continue to work miracles for my little man (chubby cheeks and all).
Have a great night! I'm off to bed.
With Much Love, Crystal at 10:57 PM
Friday, February 8, 2008
I Spoke with Emily (the Transplant Coordinator) this morning and after she discussed with Dr. Everitte. They decided that if Noah looked or acted sick then I would need to bring him in today. But since he seemed ok, we are going to switch are weekly appointment from Thursday to Monday. Then we can check his med level, check his liver function, and get his echo and EKG.
I really hope it's nothing, but it sure can be unnerving. But I guess this is just the road of a transplant. Every little cold can be something bigger, every infection can lead to rejection, and every unexplained pain could be a result of heart function. I assume with time I won't get SO worked up about it because we'll have many "false alarms" under our belts but for now, it's always a bit scary.
I'll definately post an update as soon as I know what they say. But I don't think we'll have lab results back until Monday evening or even possibly Tuesday.
With Much Love, Crystal at 2:19 PM
Today Noah went to see Dr. Samson-Fang for his next Synagis shot. The shot part was easy. Of course he cried a little. But I think it was more from having to be held down than the actual shot because as soon as I picked him up, he stopped crying. (He doesn't like to be manipulated...just like his mom.)
What was interesting was what happened before the shots. Noah had been sleeping in his car seat when we got there. The time came to weigh him so I went to get him out and could tell he had pooped. Very stinking. So I pick him up and hold him upright against me so I can lay him down on the counter. As I lay him down I see yucky poopy diareah all over his leg and the only onesie that I brought. Then I look down and there was poop all over my boob. On my shirt of course. But it wasn't just a smear. There was actually a good deal of poop on me that had to be scooped off. It was VERY nasty. So I cleaned it up but then I was too stinking to wear it so I took it off and just wore my jacket as a shirt. Unfortunately, Noah had to wear his stinky onesie home but I did try to clean it up as much as I could.
The next turn of events might end us back in the hospital tomorrow. When the Dr. was doing his physical, he started crying when she pushed on his liver. Normally this doesn't bother him at all. The only time it has ever hurt him was when he had a blockage due to his gallstones. So her hypothosis was it could either be a missed GallStone, a random Virus thats in his liver, or a backup of fluid from his heart and lungs (He had this before he received his transplant since the Aorta was too small to push all the blood out so it backed up into his lungs and liver). So that just gave me a HORRIBLE thought.... I was told in Denver that Noah had a CoArct (a narrowing of his Aortic Arch near where the new heart was sewed to his exsisting Aorta). *remember the scary I hate the Cath lab post? But lately PCMC hasn't been checking it because the way they do their echo's they couldn't show a significant Coarch so they stopped looking for one. But if he does have one and it's getting worse, it could cause the fuild to back up and flood his lungs and liver and lead to heart failure..... Oh... gonna need a zanax tonight.
Anyways... It's probably nothing, but I have to call Cardiolody tomorrow to see if they want to see him right away or if it can wait till our schedule appointment on Thursday. Either way we will be checking his liver function labs.
Oh... one last thing. He was upset earlier because he was tired and I had to wake him up for meds... and as he cried I saw two little teeth trying to pop through. They seem to come and go since the Neoral thickens his gums and makes it harder to teeth. So maybe they will pop through this time... or maybe we'll have to wait.
With Much Love, Crystal at 12:11 AM
Wednesday, February 6, 2008
It took me a while to change my mind but I decided that I wanted a new look for Noah's Adventure. This new look is very symbolic of how things have changed since when the blog began.
I started this blog at the beginning of June. Before Noah was even born. Back when we had no idea what the future had in store for us.
I feel like we have come such a long way. I remember anticipating Noah's arrival with great excitement. I couldn't wait for him to join our family. When he was born my Joy was overwhelming. But then it was clouded by a pain I had wished I would never have to endure.
The days following were very hard as we struggled watching Noah suffer. As we watched random and rare set backs hinder his progress. But the days brightened as Noah improved.
And here we find ourself back to our regular life. It's different that we thought it would be with Noah's limitations and all his Dr visits. But I wouldn't change it for the world.
But in honor of Noah's progress, I thought it was time to update and change his website.
I hope you enjoy it and continue to stop by and check on his progress. I find great support through blogging and all the kind and support comments that everyone posts. So THANK YOU!
With Much Love, Crystal at 10:13 PM
Tuesday, February 5, 2008
Noah is doing well. The antibiotic seems to have really helped. He has a few more days to go to make sure they stay clear though.
One problem though... It brought back the really acidic poop that is burning holes in his poor little bum. I am trying everything and its just not working so we are back to the Lyticain cream and the Ilex. Only problem with the iLex is it makes his bum cheeks stick together. I try really hard to put the vasaline there so it won't but it doesn't help. I wonder if that will keep him from being able to poop is he needs to?!?! ;)
But he really is doing so well. You just can't tell all that he has been through just by looking at him. He also has more personality than I have ever seen in a baby his age. He honestly thinks he is funny. He does stuff to make me laugh and then starts laughing himself. Or he will cock his head and give you this look than slowly desolves into a little grin and then he just bursts out laughing. It's the cutest thing I have ever seen.
I just adore him. He brings me SO much joy. And even though the past 8 months has been hard, I wouldn't have him any other way. I love that he is so special. That he is my miracle. I wish I could take away his suffering. But since this is the road we have all been called to walk... I am honored to be a Heart Mommy. Especially since I'm the Mommy to a BEAUTIFUL Heart Baby.
With Much Love, Crystal at 11:24 PM