Due to great request by all of Mason Andrew's loving friends and family he finally has his very own blog. Thanks to my dear friend Mandee who helped me put it together, okay... actually she did it all, but taught me how to do it now. We pasted in all the e-mails I've sent out since Mason was born so you can follow his whole journey since we were so blessed to have him born into our family. We love Mason so much and hope his story will touch your hearts as much as he touches ours each and every day!
Mason is doing pretty good as we await his Glen Surgery in 2 weeks. He is on and off of oxygen right now, just depending on the day. Today he seems to be feeling pretty good without any extra O2, which makes life a little easier I have to admit! Now if I could just get him to sleep more than 2 hours at a time during the night. I guess he still thinks he needs to make up for lost snuggling time from his first 7 weeks of life, but I think we've well made up for that by now!
I will post more pictures soon.
Sunday, May 25, 2008
Thursday, May 15, 2008
Better Days
Mason is feeling much much better and we are back home. Surgery is scheduled for June 9th still, since his oxygen sats are way back upafter his blood transfusion.
We will update with anything new.
Sincerely,
Summer
We will update with anything new.
Sincerely,
Summer
Wednesday, May 14, 2008
Mason's Sleepover... In the PICU
Friends and family,
Mason's cath test went well. His heart function looks good, thepressures looked good, the clot is still there but caused no problemsduring the procedure. So the surgeuons say they will procede to thenext surgery and scheduled him for June 9th. But you know our Mason, he had a throw a little bit of theunexpexted into the story yesterday.....about 2 hours post the cathtest he started to need more oxygen then he had been on at home andmore and more as the day went on. So we ended up back in the PICUagain! Where they started running tests and put him on high flowoxygen. He just wanted to scare us for a bit! The Doc's say he justdoesnt have much reserve right now. So the anathesia from the procedure, his stuffy nose, a new ear infection (that I discoveredwhen it started draining yesterday morning), his red blood cell countwas low, combined with him starting to out grow his SANO (the shunt inhis heart)....just was pushing him over his limit! He is much betterthis morning after a blood transfusion and some high flow oxygen overnight. In fact he's down to 1/2 liter of O2, which is less then wecame in on yesterday morning. They are talking about bumping the surgery sooner now after yesterday's episode. We just need to get him over his little cold. I am not sure yet if we will stay for a few days or go home.
Keep up your prayers!
Thanx
Summer
Mason's cath test went well. His heart function looks good, thepressures looked good, the clot is still there but caused no problemsduring the procedure. So the surgeuons say they will procede to thenext surgery and scheduled him for June 9th. But you know our Mason, he had a throw a little bit of theunexpexted into the story yesterday.....about 2 hours post the cathtest he started to need more oxygen then he had been on at home andmore and more as the day went on. So we ended up back in the PICUagain! Where they started running tests and put him on high flowoxygen. He just wanted to scare us for a bit! The Doc's say he justdoesnt have much reserve right now. So the anathesia from the procedure, his stuffy nose, a new ear infection (that I discoveredwhen it started draining yesterday morning), his red blood cell countwas low, combined with him starting to out grow his SANO (the shunt inhis heart)....just was pushing him over his limit! He is much betterthis morning after a blood transfusion and some high flow oxygen overnight. In fact he's down to 1/2 liter of O2, which is less then wecame in on yesterday morning. They are talking about bumping the surgery sooner now after yesterday's episode. We just need to get him over his little cold. I am not sure yet if we will stay for a few days or go home.
Keep up your prayers!
Thanx
Summer
Monday, May 12, 2008
Mason's Blessing Day
Happy Mother's Day to All!!!
I took Mason into Cardiology on Thursday, because on Wed.afternoon I checked his oxygen sats (I have a pulse oxymeter at home) And they were 65 -67 and he needs to be between 75 and 85, So he's having to work a little too hard to breathe on his own. So Mason came home from Primary's that day on oxygen. He hasn't needed it at all at home since we came home in January. He needs about a liter and if he needs more than that he will need to go stay at Primary's. This is a huge sign that he's probably out growing his shunt placed in his heart in his first surgery. Thus a few changes in plans, As you know, I've learned to say with Mason.... always expect the unexpected. ( he was doing so good and then all of a sudden!...) His catheterization, the test needed prior to surgery that caused the controversy between the doc's cuz of his clot, has now been bumped from May 29th to May 13th, THIS TUESDAY! and surgery will depend on what is seen on the test, but it could be within 2 day or 2 weeks of the test! I thought we had a little more time to mentally prepare...yikes!
On a more positive note, we had Mason's baby blessing today in our home, (to avoid all the germs at church!) We had just the grandmas and grandpas and aunts and uncles who live near by come over and it was very simple , but amazingly special. It made this a memorable, very nice Mother's Day. We are so blessed to have Mason in our lives. His sweet smiles light up our home!
Sincerely with love, Summer
ps...Ammon loves his new play toy.....the oxygen generator, He turns it way up and then off...etc.., poor little Mason.....and my poor sanity!!!
I took Mason into Cardiology on Thursday, because on Wed.afternoon I checked his oxygen sats (I have a pulse oxymeter at home) And they were 65 -67 and he needs to be between 75 and 85, So he's having to work a little too hard to breathe on his own. So Mason came home from Primary's that day on oxygen. He hasn't needed it at all at home since we came home in January. He needs about a liter and if he needs more than that he will need to go stay at Primary's. This is a huge sign that he's probably out growing his shunt placed in his heart in his first surgery. Thus a few changes in plans, As you know, I've learned to say with Mason.... always expect the unexpected. ( he was doing so good and then all of a sudden!...) His catheterization, the test needed prior to surgery that caused the controversy between the doc's cuz of his clot, has now been bumped from May 29th to May 13th, THIS TUESDAY! and surgery will depend on what is seen on the test, but it could be within 2 day or 2 weeks of the test! I thought we had a little more time to mentally prepare...yikes!
On a more positive note, we had Mason's baby blessing today in our home, (to avoid all the germs at church!) We had just the grandmas and grandpas and aunts and uncles who live near by come over and it was very simple , but amazingly special. It made this a memorable, very nice Mother's Day. We are so blessed to have Mason in our lives. His sweet smiles light up our home!
Sincerely with love, Summer
ps...Ammon loves his new play toy.....the oxygen generator, He turns it way up and then off...etc.., poor little Mason.....and my poor sanity!!!
Thursday, May 1, 2008
Heart Catheter Test Disagreement
Friends and Family,
Mason is doing well. He weighs about 9 lbs 14 oz. Slowly but surely he is chubben up. We had his cardiology clinic on Monday and the Dr.s thought he looked really good, just little. But pleased with his weight gain lately. Now the latest on surgery... there was quite a disagreement among the doctors about Mason not getting the catheter test last week. One of the cardiologist that saw us that day said he knew the surgeons would absolutely need Mason to have the cath test before surgery, because this is the only way to get an accurate measure of the pressures of the blood flow in and out of the heart. Which this info is very important to know before going ahead with the 2nd surgery. Then what about his clot? They say the cath lab dr. can just avoid going in the part of his heart where the clot is....but, what concerns me is that the cath lab doctor from last week still says he will not do it and another cath lab cardiologist will have to perform the procedure if he has it done. So we asked if this could be discussed in the weekly care conference with all the cardiologists and cardiothoracic surgeons. Mason was discussed on Wed. morning and the majority vote was that he needs the catheterization before they will schedule him for surgery. So the cath has been rescheduled for May 29th.
I am quite leery right now about this decision and pray I will know its right before we do it! They also may do an MRI to get a more accurate measure and position of the clot and for sure will do a sedated echo to look at the heart function and the clot before performing the catheter test. Now they are saying mid June for surgery.Thanks always for your concern and Love. Please continue to pray for Mason and the decisions that lay ahead of us this month.
Sincerely, Summer
Mason is doing well. He weighs about 9 lbs 14 oz. Slowly but surely he is chubben up. We had his cardiology clinic on Monday and the Dr.s thought he looked really good, just little. But pleased with his weight gain lately. Now the latest on surgery... there was quite a disagreement among the doctors about Mason not getting the catheter test last week. One of the cardiologist that saw us that day said he knew the surgeons would absolutely need Mason to have the cath test before surgery, because this is the only way to get an accurate measure of the pressures of the blood flow in and out of the heart. Which this info is very important to know before going ahead with the 2nd surgery. Then what about his clot? They say the cath lab dr. can just avoid going in the part of his heart where the clot is....but, what concerns me is that the cath lab doctor from last week still says he will not do it and another cath lab cardiologist will have to perform the procedure if he has it done. So we asked if this could be discussed in the weekly care conference with all the cardiologists and cardiothoracic surgeons. Mason was discussed on Wed. morning and the majority vote was that he needs the catheterization before they will schedule him for surgery. So the cath has been rescheduled for May 29th.
I am quite leery right now about this decision and pray I will know its right before we do it! They also may do an MRI to get a more accurate measure and position of the clot and for sure will do a sedated echo to look at the heart function and the clot before performing the catheter test. Now they are saying mid June for surgery.Thanks always for your concern and Love. Please continue to pray for Mason and the decisions that lay ahead of us this month.
Sincerely, Summer
Wednesday, April 23, 2008
No Catheter Test After All
Hello to all!
I took Mason to PCMC yesterday for his heart catheter test which they like to do before they set a date for the second surgery. Although, his clot that he has in his superior vena ceva at the top of his right atrium posed a high risk to perfom the catheterization, in fear of possibly hitting the clot and breaking it loose, the Dr. chose not to do it. We are very glad he decided to do a sedated and very detailed echo prior to the catheter to get a better look at his clot that Mason has had since Jan. Instead they did a CT scan to get close images of his arteries etc. All looked good, so they saw no pressing need to perform surgery before probably another month. We are glad Mason was once again protected by his "guardian angles" and our Father in heaven when the Dr. made his decision yesterday! PLease pray our little MAson can put some good weight on this month to stregthen him for surgery. We will set a date for surgery when we go to clinic next Monday.
We love you,
Summer
I took Mason to PCMC yesterday for his heart catheter test which they like to do before they set a date for the second surgery. Although, his clot that he has in his superior vena ceva at the top of his right atrium posed a high risk to perfom the catheterization, in fear of possibly hitting the clot and breaking it loose, the Dr. chose not to do it. We are very glad he decided to do a sedated and very detailed echo prior to the catheter to get a better look at his clot that Mason has had since Jan. Instead they did a CT scan to get close images of his arteries etc. All looked good, so they saw no pressing need to perform surgery before probably another month. We are glad Mason was once again protected by his "guardian angles" and our Father in heaven when the Dr. made his decision yesterday! PLease pray our little MAson can put some good weight on this month to stregthen him for surgery. We will set a date for surgery when we go to clinic next Monday.
We love you,
Summer
Thursday, April 10, 2008
Home Again!
Hi everybody.
We brought Mason home Tuesday afternoon. He is so happy to be home and seems to be doing well. While we were at Primary's Mason also had tubes put in his ears to solve the ear infection problem. ( we had already scheduled this 2 weeks ago and after his tachacardia episode last week the cardiologists were a bit leary, but he responded so well to being back on the medicine for the arythmias they gave the go ahead) We hope to not experience the Life Flight again! Although, the Life Flight nurses do love little Mason and we know he's been in great hands both times! The Dr's are thinking 4 - 6 weeks until his 2nd surgery. Thanx for all your support and prayers.
With Love,
Summer
We brought Mason home Tuesday afternoon. He is so happy to be home and seems to be doing well. While we were at Primary's Mason also had tubes put in his ears to solve the ear infection problem. ( we had already scheduled this 2 weeks ago and after his tachacardia episode last week the cardiologists were a bit leary, but he responded so well to being back on the medicine for the arythmias they gave the go ahead) We hope to not experience the Life Flight again! Although, the Life Flight nurses do love little Mason and we know he's been in great hands both times! The Dr's are thinking 4 - 6 weeks until his 2nd surgery. Thanx for all your support and prayers.
With Love,
Summer
Friday, April 4, 2008
Mason's Feeling Better
Mason is feeling and looking alot better today. So far the doc's still think that this inccident was from weaning him from the arythmia medication, because now back on it he is doing so much better. On his echo today his heart function looked good. He will need to be in the ICU for probably 3 more days if all goes well. He needs to recover from his tachacardia episode yesterday. It was hard on his little body. But he remains our little miracle and fighter. We appreciate all your prayers.
love,
Summer & Mark
love,
Summer & Mark
Thursday, April 3, 2008
Mason Loves To Fly
Friends and Family,
It seems as though Mason was having a bit of cabin fever this morning......So he has made a return visit to Primary Chidren's! He started really laboring to breath this morning,so I checked his oxygen sats and they were too low for him. After talking with cardiology at Primary's I called 911. The Paramedics came and he was having tacacardic heart rythms ( heart rates way too high) causing him to work really hard just to breathe. So Life Flight landed on our street and and transported him to Primary's. A pretty scary day. He is now in the PICU and already doing better. We are all hoping this was caused by a medication for his arythmias that the Dr.s weaned him off of 2 weeks ago. Please keep our little fighter Miracle Mason in your Prayers. We are hoping this is just a short visit and we'll take him home soon!
Sincerely, Summer
It seems as though Mason was having a bit of cabin fever this morning......So he has made a return visit to Primary Chidren's! He started really laboring to breath this morning,so I checked his oxygen sats and they were too low for him. After talking with cardiology at Primary's I called 911. The Paramedics came and he was having tacacardic heart rythms ( heart rates way too high) causing him to work really hard just to breathe. So Life Flight landed on our street and and transported him to Primary's. A pretty scary day. He is now in the PICU and already doing better. We are all hoping this was caused by a medication for his arythmias that the Dr.s weaned him off of 2 weeks ago. Please keep our little fighter Miracle Mason in your Prayers. We are hoping this is just a short visit and we'll take him home soon!
Sincerely, Summer
Thursday, March 20, 2008
A Really Full Plate
Friends and Family,
Sorry it has been so long without and update. My plate is just a bit full right now, I'm sure you can imagine. Mason is doing well. He did have a rough couple of weeks with a horrible ear infection (which he's just following his siblings' examples, they all had to get tubes in as babies!). It took 3 different antibiotics and then a shot of Rocefin (sp?) to clear it up. In the mean time, all the crying and pain caused his breathing to be labored ,his oxygen sats to lower and he wouldn't eat. We had some scary moments and a few time almost headed to the ER, but then he would pull out of it. Our cardiologist said "do whatever you can to keep him comfortable and from crying so hard." OK ..with only being able to give him Tylenol,( no motrin allowed) and Mason wanting me to constantly hold him... that has been no easy task with four other kids! He is feeling better now, but still almost always wants to be held. Although, I guess he deserves every minute of it!
We are still trying to be extra careful to not get him sick, ESPcially after seeing how an ear infection affected him. So this means he and I only go to his Dr. apt.s . and that is it! Cabin Fever? Most definitely. But Mason is well worth it!
Some exciting news, well if you are a Mom you'll relate, he will nurse now. Which most heart babies have trouble doing at all. And this makes life a Little easier for me. (except for the ear infections, when I had to put his NG (feeding) tube back in for awhile cuz he would cry to hard when he would try and nurse or take the bottle!) The only problem now is he's refusing the bottle and his Dr.s still want me supplementing with some high calorie bottles as well, because he works harder then a normal healthy baby just to eat thus burning more calories.
He is up to @ 8lbs 5oz but they want him to be 11 or 12 lbs for his next surgery. The surgery...my next topic. We saw the cardiologist team on Monday and they are thinking around 6 or 7 months old for his next surgery... so, end of May or June. Unless he needs it before then (with constantly lower oxygen sats and a gray/blue coloring in his face begins to be noticeable, meaning his body is in need of a better blood flow). We will do some testing at the end of April / beginning of May which will look at his heart function and this will gives a better idea when they will need to do his surgery.
We also met with an ENT at primary Children's on Wed. and will probably put tubes in Mason's ears to avoid any more traumatic ear infections! The ENT will be discussing it with the Cardiology team ant let us know in a few days.
If you are wondering how I could possibly be writing this long email... for one it has taken me all morning with several interruptions, and two Mason finally fell asleep in my arms, three and most exciting...Ammon is now attending a special preschool, a school bus even picks him up! It is so good for him! Well, for me too...some of my sanity comes back at least for a few hours during the day!
we love you!
Summer and family
Sorry it has been so long without and update. My plate is just a bit full right now, I'm sure you can imagine. Mason is doing well. He did have a rough couple of weeks with a horrible ear infection (which he's just following his siblings' examples, they all had to get tubes in as babies!). It took 3 different antibiotics and then a shot of Rocefin (sp?) to clear it up. In the mean time, all the crying and pain caused his breathing to be labored ,his oxygen sats to lower and he wouldn't eat. We had some scary moments and a few time almost headed to the ER, but then he would pull out of it. Our cardiologist said "do whatever you can to keep him comfortable and from crying so hard." OK ..with only being able to give him Tylenol,( no motrin allowed) and Mason wanting me to constantly hold him... that has been no easy task with four other kids! He is feeling better now, but still almost always wants to be held. Although, I guess he deserves every minute of it!
We are still trying to be extra careful to not get him sick, ESPcially after seeing how an ear infection affected him. So this means he and I only go to his Dr. apt.s . and that is it! Cabin Fever? Most definitely. But Mason is well worth it!
Some exciting news, well if you are a Mom you'll relate, he will nurse now. Which most heart babies have trouble doing at all. And this makes life a Little easier for me. (except for the ear infections, when I had to put his NG (feeding) tube back in for awhile cuz he would cry to hard when he would try and nurse or take the bottle!) The only problem now is he's refusing the bottle and his Dr.s still want me supplementing with some high calorie bottles as well, because he works harder then a normal healthy baby just to eat thus burning more calories.
He is up to @ 8lbs 5oz but they want him to be 11 or 12 lbs for his next surgery. The surgery...my next topic. We saw the cardiologist team on Monday and they are thinking around 6 or 7 months old for his next surgery... so, end of May or June. Unless he needs it before then (with constantly lower oxygen sats and a gray/blue coloring in his face begins to be noticeable, meaning his body is in need of a better blood flow). We will do some testing at the end of April / beginning of May which will look at his heart function and this will gives a better idea when they will need to do his surgery.
We also met with an ENT at primary Children's on Wed. and will probably put tubes in Mason's ears to avoid any more traumatic ear infections! The ENT will be discussing it with the Cardiology team ant let us know in a few days.
If you are wondering how I could possibly be writing this long email... for one it has taken me all morning with several interruptions, and two Mason finally fell asleep in my arms, three and most exciting...Ammon is now attending a special preschool, a school bus even picks him up! It is so good for him! Well, for me too...some of my sanity comes back at least for a few hours during the day!
we love you!
Summer and family
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