Today is Bruce's one month birthday and I have no doubt that I will be 'that mom' that celebrates each and every month :) I'm blessed to have any months as a momma so it's probably more for me than him right now...until he gets old enough to appreciate special treats on every 20th!
We're still at Children's Mercy. Bruce had his second enzyme treatment on the 14th and all went well. It took a little longer than usual but the nurses in the NICU are not used to giving such treatments and it was a learning experience for them as well. With the new state newborn screenings starting next year, they may be doing it a lot more often so Bruce was their learning curve! Our next treatment is next week and with a little luck, we'll be traveling in to the outpatient clinic at CMH and not in our room at E48.
Speaking of which, life on the E pod in the NICU is getting a little exciting. For several weeks it was just a bunch of boys but now the cutest little girl with the most gorgeous black hair has moved in across the hallway. It used to be pretty quiet but with the new addition, it seems like all the little boys are screaming and saying hello. But not Bruce. Nope, he's letting the amateurs get out of the way before he goes and introduces himself. He's quite the ladies' man!
John has been traveling a lot up and down 1-35 back home to the ranch when the weather allows. It's tough on him, and us down here too, but no doubt the hay needs baled and cows need checking! Soon we'll break free of this joint and we'll be a lot closer for him to check on us when he wants!
No one at CMH has said anything about discharge. What's holding us up are still the ugly diapers. Last week GI was consulted and they ran several tests, one including radioactive dye injected in Bruce so they could look better at his intestines -- so, Bruce truly had radioactive diapers for 24 hours. So far, all of the tests and cultures have come back negative and the doctors are puzzled why he has bloody stools. He's on a special pre-digested formula that smells worse than any outdated can of hominy and I have no worries in my mind that I will never have to fight him to eat his vegetables. Any kid that can take that formula down, as well as his beta-blockers, can eat anything! We hope to be back on breast milk soon because mom has been spending a lot of time at the milking parlor and hopefully not for a lost cause. TMI? Sorry, it's a habit these days...
Sigh. Bruce has his father's hairline. At first, I had hope of it growing in but I really don't think it's going to any time soon...When he wrinkles his face and furrows his brow, he looks like an old man. I really don't feel like I have a one month old but rather an 80 year old. Bruce is truly an old soul and for what he's been through, he'll be as wise as any nursing home resident soon enough! But much cuter...and smaller diapers.
We hope to be home soon, fingers crossed, and I can't wait to share all of the experiences we'll have back on the ranch!
Thank you again to everyone for your thoughts and prayers and well-wishes!!
John, Sarah & Benjamin Button, er, Bruce.
Monday, June 20, 2011
Saturday, June 11, 2011
End of Week 3...
Yesterday, on the 10th, Bruce turned 3 weeks old! To celebrate the Children's Mercy guest server decided to crash and I somehow managed to wipe everything off my computer...it's my work laptop and fortunately all my files were unorganized enough I really didn't mind. But I did lose some of my red dirt music therapy and that's a little depressing...
We've been at CMH for 20 days and for some reason it seems a lot longer...I feel 62, not 26, and I'm starting to look a little rough around the edges. John and Bruce look as handsome as ever. Jerks. There have been rumors of possible discharge for us this coming week but really it depends on cardiology and what they decide. Bruce's heart rate has a tendency to be on the higher side for his heart condition and the docs really want to send us home with the correct beta blocker dosage. I really don't mind because the 5 minute lesson with the stethoscope on what to listen for didn't set in with me and I need more practice...
On the genetics side, our next enzyme treatment is scheduled for Tuesday the 14th and we're looking forward to that! He responded really well clinically to the last one so that was a relief but we will still have to be observant with each and every one. The treatment is FDA approved but it's still pretty new...especially for a 3 week old. The skin biopsy test that will let us know if we can continue with the treatments or not is still several weeks out but luckily we get to continue in the meantime.
On the weekends (when John isn't here, of course), Bruce enjoys having odd bowel functions that mystify the doctors, scare momma, and smell. Last weekend, some ugly diapers resulted in him being taken off feed completely, a few abdominal x-rays, several consults with surgeons, isolation contact which meant mom had to wear gloves and a gown and felt like she was holding baby E.T., and a team of doctors telling us they really had no idea what was going on. Today, he had copious amounts of yellow spit up, another abdominal x-ray that showed a very gassy little boy who had a very gross diaper and more are on the way...I hate to admit it, but Bruce got his father's hairline and his mother's bowels. Not our best features!
John has been able to make it north a few times the last couple weeks to get some hay baled and wrapped...which is a good thing because he was starting to pace the room like a caged tiger and I wasn't sure who was going to get attacked first...ok, it wasn't that bad but he did need to get out and get some sunshine because his farmer's tan was starting to disappear! Thanks to a lot of neighbors up north and one very talented and mechanically-inclined cousin of mine, the ranch is holding up and doing fine!
Tonight, this momma needs out. My mamacita has graciously come to break me out of the joint a couple times for a Target run and some quality brother/sister time at Crown Center, but tonight I need some Stoney LaRue music to chase away some of the 'hospital/my baby scares me with every move he makes/I'm tired of the cafeteria food' blues...John's heading back from the ranch now and we're heading out and leaving Bruce with round the clock nursing care who just happen to be the best baby-sitters in the KC metro area!
Also, a huge thanks to great grandma and grandma & grandpa from the north country for taking us out the other night to the best BBQ joint in Kansas City! I'd share the name with you but the line was long enough and until we're out of KC, we're going back as much as we can! :)
On a side note, I've been listening to Bruce lay in his crib while typing this up and I'm pretty sure his bowels are feeling much better....ah, nothing like motherhood to let all the juicy details out!
THANKS AGAIN to EVERYONE who has called, emailed, posted, texted, pigeon mailed, commented, snail mailed, telegraphed their words of encouragement and prayers and well wishes!!! You have no idea how WONDERFUL they have been. You really don't understand how much they mean until you find yourself in a position like this and I guarantee if any one of you EVER need a shoulder, words, advice, or just someone to listen, I WILL BE THERE!!!
Sarah
(I have pictures to post but my crashed computer says no....)
We've been at CMH for 20 days and for some reason it seems a lot longer...I feel 62, not 26, and I'm starting to look a little rough around the edges. John and Bruce look as handsome as ever. Jerks. There have been rumors of possible discharge for us this coming week but really it depends on cardiology and what they decide. Bruce's heart rate has a tendency to be on the higher side for his heart condition and the docs really want to send us home with the correct beta blocker dosage. I really don't mind because the 5 minute lesson with the stethoscope on what to listen for didn't set in with me and I need more practice...
On the genetics side, our next enzyme treatment is scheduled for Tuesday the 14th and we're looking forward to that! He responded really well clinically to the last one so that was a relief but we will still have to be observant with each and every one. The treatment is FDA approved but it's still pretty new...especially for a 3 week old. The skin biopsy test that will let us know if we can continue with the treatments or not is still several weeks out but luckily we get to continue in the meantime.
On the weekends (when John isn't here, of course), Bruce enjoys having odd bowel functions that mystify the doctors, scare momma, and smell. Last weekend, some ugly diapers resulted in him being taken off feed completely, a few abdominal x-rays, several consults with surgeons, isolation contact which meant mom had to wear gloves and a gown and felt like she was holding baby E.T., and a team of doctors telling us they really had no idea what was going on. Today, he had copious amounts of yellow spit up, another abdominal x-ray that showed a very gassy little boy who had a very gross diaper and more are on the way...I hate to admit it, but Bruce got his father's hairline and his mother's bowels. Not our best features!
John has been able to make it north a few times the last couple weeks to get some hay baled and wrapped...which is a good thing because he was starting to pace the room like a caged tiger and I wasn't sure who was going to get attacked first...ok, it wasn't that bad but he did need to get out and get some sunshine because his farmer's tan was starting to disappear! Thanks to a lot of neighbors up north and one very talented and mechanically-inclined cousin of mine, the ranch is holding up and doing fine!
Tonight, this momma needs out. My mamacita has graciously come to break me out of the joint a couple times for a Target run and some quality brother/sister time at Crown Center, but tonight I need some Stoney LaRue music to chase away some of the 'hospital/my baby scares me with every move he makes/I'm tired of the cafeteria food' blues...John's heading back from the ranch now and we're heading out and leaving Bruce with round the clock nursing care who just happen to be the best baby-sitters in the KC metro area!
Also, a huge thanks to great grandma and grandma & grandpa from the north country for taking us out the other night to the best BBQ joint in Kansas City! I'd share the name with you but the line was long enough and until we're out of KC, we're going back as much as we can! :)
On a side note, I've been listening to Bruce lay in his crib while typing this up and I'm pretty sure his bowels are feeling much better....ah, nothing like motherhood to let all the juicy details out!
THANKS AGAIN to EVERYONE who has called, emailed, posted, texted, pigeon mailed, commented, snail mailed, telegraphed their words of encouragement and prayers and well wishes!!! You have no idea how WONDERFUL they have been. You really don't understand how much they mean until you find yourself in a position like this and I guarantee if any one of you EVER need a shoulder, words, advice, or just someone to listen, I WILL BE THERE!!!
Sarah
(I have pictures to post but my crashed computer says no....)
Friday, June 3, 2011
Update on Bruce
Thank you so much to everyone for your support and we really appreciate all of your prayers and thoughts!
Yesterday we learned what is going on inside our little man. Last week, the day we were admitted to Children's Mercy, we were told he has hypertrophic cardiomyopathy which is a disease of the heart where there is too much muscle. He can't always pump the blood where it needs to go because the heart muscle itself is so strong, it clamps down and won't release the blood to all organs in the body.
A heart transplant was brought up by the doctors but it wasn't an option until we could find out what caused the heart disease. So, A LOT of tests were sent out, mainly genetic and metabolic tests to look for the culprit. Yesterday results came back positive for a genetic disorder called Pompe Disease. It's really complex and we're still learning a lot ourselves but basically his body can't breakdown glycogen and it stores itself in the muscles and cells of his body. This caused the heart disease and means a heart transplant is not an option; the Pompe will only cause another heart to build up with muscle.
To catch Pompe Disease this early is an absolute blessing. It's very rare and symptoms don't always show up until later in life in those who have it and that can be sometimes too late. If Pompe goes untreated, problems with the heart, lungs, and muscles arise and generally are fatal.
The only treatment is enzyme replacement therapy and he will be doing it every 2 weeks for the rest of his life through a permanent IV. There are more tests to be run to make sure that he will respond to this treatment that he needs and those won't come back for six weeks or so. However, because the medical staff at Children's Mercy is AMAZING, rounds of treatment was ordered 'just in case' the test came back positive and only a few hours after John & I learned the results, a treatment was started.
If the results come back that his body won't respond to enzyme replacement therapy, we will do the best to make his life as comfortable as possible. But, to have started treatment this early in his life just may allow him to function and develop normally for any beautiful, strong-willed little boy, as long as his body is willing.
There is no cure for Pompe; only treatment. And a whole lotta prayers! If the enzyme replacement therapy works, his heart should go back to normal but he will always need check-ups to make sure all the vitals are in place.
We love this little guy no matter how much work he has put us through and a whole teams of geneticists and cardiologists and nurses the last several days and we will do whatever it takes to keep him growing strong!! He is eating well and putting on some weight which is a blessing in itself and he's starting to become more active each day. All positive signs!!
This is a great website www.pompe.com for any questions and I'm constantly checking it out to learn all I can. No matter how scary it all is, we still have a wonderful little man in our lives and I thank God daily for my family!!
www.pompe.com
GOD BLESS!!!
John, Sarah & Bruce
Alooooooha!
I've always wanted to create a blog but never found anything engaging to write about...that has changed in the last 14 days!
The purpose of this blog is to capture and share all the amusing and amazing moments that have come and will come in our new life, together as a family. If it weren't for John, the rock in my universe, I never would have survived the last couple weeks...and if it weren't for our beautiful and handsome son, Bruce Jackson, we never would have the strength and laughs and cries and new found hope we have come across....
Thank you to all my family and friends for coming together and celebrating and loving our new bundle of joy who brings to this planet a beautiful, old soul and for being our support system. I may not say the words all the time but I thank God every day!
Sarah
The purpose of this blog is to capture and share all the amusing and amazing moments that have come and will come in our new life, together as a family. If it weren't for John, the rock in my universe, I never would have survived the last couple weeks...and if it weren't for our beautiful and handsome son, Bruce Jackson, we never would have the strength and laughs and cries and new found hope we have come across....
Thank you to all my family and friends for coming together and celebrating and loving our new bundle of joy who brings to this planet a beautiful, old soul and for being our support system. I may not say the words all the time but I thank God every day!
Sarah
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