Monday, January 31, 2011
Long Day!
Well after 7 1/2 hours Mason is out of surgery!! Nothing went wrong it just took longer to get through scar tissue and to stop bleeding after. He is doing pretty good. They are trying to figure out his meds because he isn't responding to some of them but just before we left they were trying a new one for pain and it was seeming to work. He is still has a breathing tube but we are hoping by the time we get back he will have passed his trial breathing on his own and it will be out! We got a room at the Ronald McDonald house and it seems to be a good place from the tour. He's still being such a fighter! So there is a quick update, I'll update again tomorrow night. HAPPY 4 MONTH BIRTHDAY tomorrow Mason! :) Thank you everyone for your thoughts, prayers, and those who have been fasting.
Surgery Day
Just trying to pass the time! Mason went back to surgery at 7:30am and they told us the surgery would be 5 1/2-6 hours and we wouldn't be able to see him for 7 hours so we are sitting in the waiting room watching time tick VERY slowly. We got our first update a little over an hour ago saying they had just made the incision and they would update us again in an hour so we are not so patiently waiting (although I really do try to be patient). We had to be down here by 9:30 yesterday morning for his pre-op work up. (Labs, Xrays, Physical). So we decided to get a hotel and stay the night because we had to be at the hospital at 6 this morning. It was nice to be out of the house as a family although we were still confined to the hotel room at least it was a change of scenery. I can't wait to get through this stage and have RSV season over so all of our friends and family can get to know Mason and his cute personality! I will try and update after his surgery today but I might not get a chance until tomorrow. Thanks for checking the blog!
Friday, January 28, 2011
How I am feeling
I read this today and it basically sums up how I feel most of the time, especially right now.
You passed me in the shopping mall... (You read my faded tee) You tapped me on the shoulder... Then asked..."What's a CHD?" I could quote terminology... There's stats that I could give... But I would rather share with you... A mother's perspective. What is it like to have a child with a CHD? It’s Lasix,aspirin,Captopril… It’s wondering…Lord what’s your will?… It’s monitors and oxygen tanks… It’s a constant reminder to always give thanks… It’s feeding tubes, calories, needed weight gain… It’s the drama of eating…and yes it’s insane! It’s the first time I held him…(I’d waited so long) It’s knowing that I need to help him grow strong… It’s making a hospital home for awhile… It’s seeing my reward in every smile. It’s checking his sats as the feeding pump’s beeping… It’s knowing that there is just no time for sleeping… It’s caths, x-rays and boo boos to kiss… It’s normalcy I sometimes miss… It’s asking do his nails look blue? It’s cringing inside at what he’s been through. It’s dozens of calls to his pediatrician… (She knows me by name…I’m a mom on a mission) It’s winters homebound…and hand sanitizer… It’s knowing this journey has made me much wiser. It’s watching him sleeping… his breathing is steady… It’s surgery day and I’ll never be ready. It’s handing him over…( I’m still not prepared…) It’s knowing that his heart must be repaired… It’s waiting for news on that long stressful day… It’s …praying…it’s hoping…that he’ll be okay. It’s the wonderful friends with whom I’ve connected… It’s the bond that we share…it was so unexpected… It’s that long faded scar down my child’s small chest… It’s touching it gently and knowing we’re blessed… It’s watching him chasing a small butterfly… It’s the moment I realized I’ve stopped asking why? It’s the snowflakes that fall on a cold winter’s day… (They remind me of those who aren’t with us today) It’s a brave little boy who loved Thomas the train… Or a special heart bear…or a frog in the rain…. It’s the need to remember we’re all in this plight…. It’s their lives that remind us we still need to fight! It’s in pushing ahead amidst every sorrow… It is finding the strength to have hope for tomorrow..
--Stephanie Husted
You passed me in the shopping mall... (You read my faded tee) You tapped me on the shoulder... Then asked..."What's a CHD?" I could quote terminology... There's stats that I could give... But I would rather share with you... A mother's perspective. What is it like to have a child with a CHD? It’s Lasix,aspirin,Captopril… It’s wondering…Lord what’s your will?… It’s monitors and oxygen tanks… It’s a constant reminder to always give thanks… It’s feeding tubes, calories, needed weight gain… It’s the drama of eating…and yes it’s insane! It’s the first time I held him…(I’d waited so long) It’s knowing that I need to help him grow strong… It’s making a hospital home for awhile… It’s seeing my reward in every smile. It’s checking his sats as the feeding pump’s beeping… It’s knowing that there is just no time for sleeping… It’s caths, x-rays and boo boos to kiss… It’s normalcy I sometimes miss… It’s asking do his nails look blue? It’s cringing inside at what he’s been through. It’s dozens of calls to his pediatrician… (She knows me by name…I’m a mom on a mission) It’s winters homebound…and hand sanitizer… It’s knowing this journey has made me much wiser. It’s watching him sleeping… his breathing is steady… It’s surgery day and I’ll never be ready. It’s handing him over…( I’m still not prepared…) It’s knowing that his heart must be repaired… It’s waiting for news on that long stressful day… It’s …praying…it’s hoping…that he’ll be okay. It’s the wonderful friends with whom I’ve connected… It’s the bond that we share…it was so unexpected… It’s that long faded scar down my child’s small chest… It’s touching it gently and knowing we’re blessed… It’s watching him chasing a small butterfly… It’s the moment I realized I’ve stopped asking why? It’s the snowflakes that fall on a cold winter’s day… (They remind me of those who aren’t with us today) It’s a brave little boy who loved Thomas the train… Or a special heart bear…or a frog in the rain…. It’s the need to remember we’re all in this plight…. It’s their lives that remind us we still need to fight! It’s in pushing ahead amidst every sorrow… It is finding the strength to have hope for tomorrow..
--Stephanie Husted
Wednesday, January 12, 2011
Discharged!
We are home! YAY! Mason decided to snap out of whatever he was going through and they let us come home! He was scheduled to have his Glenn on February 28th but with that other narrowing and them having to stint his shunt they have bumped it up to January 31. That is typically the youngest they do the Glenn but hey we will take it! He is on oxygen all the time and holding up really well. Ryder's birthday is coming up next week so we are just trying to get stuff ready to have a Ryder day, so I more than likley wont be updating again until the 31st! Thanks for everyone who is following Mason's progress. I really want the awareness for Congenitive Heart Defects to be more and this is really the only way I know how to help that so thank you for reading! :)
Monday, January 10, 2011
Happy New Years/Heart Cath
I have been a slacker updating lately so I will try to get you up to date. I will start with New Years. On New Years eve we took Mason to the ER because he was having some episodes of dropping his oxygen. While we were there he dropped and wouldn't bring it back up so they decided to admit him. He was admitted a little after midnight so HAPPY NEW YEAR!!! They kept him for a few nights to observe him and decided that he just had a small common cold, scary that such a small thing would affect him in such a negative way, but they had prepared us for things like that. Fast forward to today:
Today was Mason's Heart Cath. He was first case so we had to be down here by 6am. His cath was at 7:30am and they told us it would be around 3-4 hours long. His lasted 3 hours. When they got inside to look at the heart they checked his lung pressures and that was a concern they had was they were expecting his lung pressures to be really high and with that it would mean that his next surgery would be really high risk or the pressures would be so high that they wouldn't be able to do the Glenn(2nd surgery) and he would have to go straight to the transplant list. So good news his lung pressures were perfect! Wahoo!! But when they got in his shunt in his heart was narrowing and when they would go next to it his oxygen and blood pressure dropped extremely so they had to make a quick decision and put a stint in the shunt. There was also a narrowing in front of it but they decided to leave it because it would either help a lot or could have caused fatal results. Normally the heart cath is out patient, they had told us they were going to keep him over night where we don't live here but we would just go to surgical. He wasn't very stable after so we are in the CICU. For the first few hours they couldn't get his oxygen above 60 percent and he just wasn't coming off everything very well. He was very irritated which doesn't help that shunt either. They are worried about the other narrowing and his oxygen levels so now it is a debate on if they can hold off 2 weeks so he can gain a little more weight for the Glenn or if they need to do it this week. The earliest they usually do it is 4 months old so he wouldn't quite be that old yet, plus he is still super tiny for his age. He only weighs a little over 9 lbs. He just had a blood transfusion and there is another one on hold depending on how he is acting tonight. They will watch all his vitals and his pulses and then we should find out in the morning the plan for what will happen. Thanks for your thoughts and prayers and I will keep everyone updated as much as I can!
Today was Mason's Heart Cath. He was first case so we had to be down here by 6am. His cath was at 7:30am and they told us it would be around 3-4 hours long. His lasted 3 hours. When they got inside to look at the heart they checked his lung pressures and that was a concern they had was they were expecting his lung pressures to be really high and with that it would mean that his next surgery would be really high risk or the pressures would be so high that they wouldn't be able to do the Glenn(2nd surgery) and he would have to go straight to the transplant list. So good news his lung pressures were perfect! Wahoo!! But when they got in his shunt in his heart was narrowing and when they would go next to it his oxygen and blood pressure dropped extremely so they had to make a quick decision and put a stint in the shunt. There was also a narrowing in front of it but they decided to leave it because it would either help a lot or could have caused fatal results. Normally the heart cath is out patient, they had told us they were going to keep him over night where we don't live here but we would just go to surgical. He wasn't very stable after so we are in the CICU. For the first few hours they couldn't get his oxygen above 60 percent and he just wasn't coming off everything very well. He was very irritated which doesn't help that shunt either. They are worried about the other narrowing and his oxygen levels so now it is a debate on if they can hold off 2 weeks so he can gain a little more weight for the Glenn or if they need to do it this week. The earliest they usually do it is 4 months old so he wouldn't quite be that old yet, plus he is still super tiny for his age. He only weighs a little over 9 lbs. He just had a blood transfusion and there is another one on hold depending on how he is acting tonight. They will watch all his vitals and his pulses and then we should find out in the morning the plan for what will happen. Thanks for your thoughts and prayers and I will keep everyone updated as much as I can!
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