Why is God mean? I know He is fair and just and loving...but yesterday, I didn't see that. My friend's daughter, whose 2nd birthday is on the 15th, passed away in the wee hours of the morning yesterday. A nearly two year old...seriously...that for an entire year of her life had to battle cancer. She was "cured" of it through a liver transplant, only to relapse 6 months later. Yet the drunks, rapists, murderers and just plain jerks are feeling fine and living fancy free!! It's a crock of crap God - just so You know.
I don't understand why children die, why children suffer. I went to Sunday school. I sang "Jesus loves the little children". It completely stunk that Aubrey had to suffer for months, but I think what is worse is the suffering her four year old sister will endure now. How do you explain death to a child that can't understand that fact that a cold will not kill her. Daddy is going to work, he will not be gone forever like Aubrey. You will see Aubrey again one day. No, not tomorrow sweetie. Yes, we want you play together too, but please don't talk about leaving mommy and daddy anymore - it makes us sad.
I just can't imagine!
I know God's purpose is better than our own. I know God knows more than us. I know God is watching over his children of all ages. But it doesn't mean it doesn't suck. It does - big time.
I have NO sympathy for those people that drink and smoke themselves into cancer. Well, that's too bad - guess you shouldn't have been a chimney for five decades huh?? I'm a firm believer in what goes around comes around. If you are stupid and put crap in your body, your body will get even with you - whether from a heart attach with too many Whoppers or emphysema from too many cigarettes (which is what killed one of grandfathers). But a child hasn't been around to do anything wrong! I know God doesn't work that way - punishing those that speed or lie or cheat on their spouses (I would LOVE if He gave everyone that commits adultery a scorching case of the clap - again...I'm mean like that). But He's not. I just don't get how He picks and chooses. I hate how He picks and chooses. Why this child and not some other child? Why that child and not that child there? I guess if I had the answers I would be a millionaire and that is not the case!
I will see how God unfolds His plans with their family and with our family. I'm SO happy He placed us together earlier last spring. I hope I am able to provide any means of comfort and support that I can to them at this time. Please keep them in your prayers. Pray for the parents that teeter back and forth between shock and despair. Pray for Aubrey's older sister that she will get through this with as little long term effects as possible. I hope Aubrey visits her sister in her dreams often. Pray for the grandparents and extended family, for they lost a loved one too but are often overlooked during the funeral and weeks following. Pray that Aubrey is finally at peace and feels no pain. I pray she is happy, healthy and running wild.
I will miss that twinkle in her eyes.
The last time I saw her, I was leaving with Matthew from dialysis and she was coming in for transplant labs. Her mom and I stopped our strollers a minute to talk to one another while the babies talked to each other. I looked down and they were holding hands. I think they would have been great playmates. One day...one day. Rest sweet Aubrey, you deserve it little angel.
Showing posts with label Egleston. Show all posts
Showing posts with label Egleston. Show all posts
Friday, February 5, 2010
Wednesday, January 27, 2010
Two weeks ago
Fourteen days ago, my youngest son was hooked up to a machine that would empty his body of toxic blood and push it back inside him as mostly clean. He would be hooked up to monitors and have his blood pressure taken every 15 minutes. He would ride out stomach and leg cramps. Fight the want vs the need for sleep while people were carrying on conversations, televisions were playing and alarms were sounding. He didn't know any difference, but I did. It was his LAST dialysis session. :) Needless to say, my feet didn't touch the ground. When it was all over, I actually got a bit weepy. I going to miss some of our fabulous nurses. Yes, the docs make all the calls...but the nurses are the backbone of a hospital. I appreciate the care and concern they often showed my son...and at times...me.
That night, I tucked my "broken" son into his hospital crib one last time. A new day was coming in the morning. A new beginning and a new life, all in the form of a 5 inch kidney. Yeah...I didn't sleep for crap! And Matthew I think noticed my excitement and was "partying" it up from 2am til 4am. :) But I didn't mind in the slightest. We just giggled together. Then daddy arrived at a more respectable time in the morning at 7am after dropping the oldest son off at his parents' house. Soon we had a roomful of family including my parents and my aunt (the donor's friend).
Then...THEY came for him. I was so overwhelmed. I think I saw my mom cry. I grabbed my camera to take his last crappy kidney picture in the waiting room of the OR. Along the wall of windows leading to the elevator, I told him to soak up his last bit of sunshine since he would be stuck in the hospital for a couple of weeks. We went through all the consents and necessary talkings to with the transplant team. Then, they took him from my arms.
I've NEVER been happier to see someone take my son to surgery than I was at that moment.
Don't get me wrong, I was nervous...it was a major surgery. But happiness won out over nerves. But with the emotional battle occurring on the inside, I think I was crying while smiling on the outside. I just remember hugging Ian tightly. We headed up to get the entourage and I texted family and friends (that were being sweethearts and spreading the word for us) that he was taken back.
We waited. Steve, our donor Marie's husband, and her son Matthew (great name huh?) ;) came over to visit while Marie was still in surgery. We all talked and prayed together. I felt very peaceful the whole time. So back upstairs to waiting. We received updates every hour and Steve would text with updates on Marie. Then, one of the reporters from Sharewyk (Share What You Know) tweeted some pictures out to us.
Marie's kidney had arrived and Matthew's had been taken out. His kidneys were compared to rotten meat the size of a wad of bubble gum (ewww). Here's the comparison picture of two unhealthy kidneys and one GREAT kidney!
I started getting all hyper at that point. Life was going into my son, taking away disease and death. I just hoped beyond all hope that it would "take". We needed liquid gold to squirt out of that thing! With every update after that, I would ask...is there pee? Any pee yet? Did you see pee? No one answered that they had. AAAAAAAHHHHHH!
Then the transplant surgeon came out. I RAN into his arms right smack dab in the middle of the OR waiting room. I just gave him a BIG hug and sobbed on his shoulder when he told me Matthew was peeing for the first time in 3 months, REAL pee for the first time in his lifetime. Yep, there was a nice wet spot right there on his scrubs...but he just got out of surgery...he'd change them anyway. ;) I thanked him profusely and set about calling everyone! I really just wanted to see my son. But before we could see him, we took the picture we'd been waiting to take....
So off to the PICU waiting room to wait until Matthew got his bed assignment after recovery. That was around 2:30pm. We didn't see him until 7pm. He was NOT tolerating his pain well at all and was freaking out about being alone with nurses he had never met. They finally called me back saying that usually they don't let parents see their child like this, but it was all they could do besides sedate and intubate again. The moment he touched him, his blood pressure dropped by 20 points. He was still in pain, but he was near someone familiar and was able to start breathing again. They were setting up to bag him before I got there. His sats had dropped to the 50's and his arms, legs and face were turning blue. He pinked up nicely again soon after our arrival. Mommy didn't lay down at all that night. Just had to comfort my son since his pain meds were cut when his respiration went down. So I know he was hurting.
They next few nights got worse before they got better. The worse night being Sunday night when Matthew's prograf (anti-rejection med) reached dangerously toxic levels of 42 (needed to be 10 - 12). He was hallucinating and frantic. He didn't recognize us, would scream, tear at his skin and stop breathing. Another "bag him" night. UGH! But as all things do, they get worse before they get better. And now..they are SO much better! He is peeing up a storm...seriously...we're drowning in urine here and couldn't be happier about! His labs are still finicky, but look awesome! Marie is recovering well and even came to visit us this past Monday when we were still in-patient and she was needed across the street for her check up. Matthew was so smiley his last weekend at the hospital.
With transplant, we have gained a functioning kidney, urine and an appetite. We have also gained new family members (Marie and Steve and their kids). Matthew has become a brand new person. He is still Matthew, but more. He is for lack of better word and at the risk of sounding corny... ALIVE! His smiles are broader, his laughter is richer, his energy is multiplied. And our hearts and lives are SO full now. We could not be happier with everything. Still in awe of our son. Still overwhelmed of what Marie has done for him...for us. Our boy is healthy!!!! Thank you God for allowing things to come in your time and in your way. I could not see a happier ending than what we have right now. Our boy is healthy. :)
That night, I tucked my "broken" son into his hospital crib one last time. A new day was coming in the morning. A new beginning and a new life, all in the form of a 5 inch kidney. Yeah...I didn't sleep for crap! And Matthew I think noticed my excitement and was "partying" it up from 2am til 4am. :) But I didn't mind in the slightest. We just giggled together. Then daddy arrived at a more respectable time in the morning at 7am after dropping the oldest son off at his parents' house. Soon we had a roomful of family including my parents and my aunt (the donor's friend).
Then...THEY came for him. I was so overwhelmed. I think I saw my mom cry. I grabbed my camera to take his last crappy kidney picture in the waiting room of the OR. Along the wall of windows leading to the elevator, I told him to soak up his last bit of sunshine since he would be stuck in the hospital for a couple of weeks. We went through all the consents and necessary talkings to with the transplant team. Then, they took him from my arms.
I've NEVER been happier to see someone take my son to surgery than I was at that moment.
Don't get me wrong, I was nervous...it was a major surgery. But happiness won out over nerves. But with the emotional battle occurring on the inside, I think I was crying while smiling on the outside. I just remember hugging Ian tightly. We headed up to get the entourage and I texted family and friends (that were being sweethearts and spreading the word for us) that he was taken back.
We waited. Steve, our donor Marie's husband, and her son Matthew (great name huh?) ;) came over to visit while Marie was still in surgery. We all talked and prayed together. I felt very peaceful the whole time. So back upstairs to waiting. We received updates every hour and Steve would text with updates on Marie. Then, one of the reporters from Sharewyk (Share What You Know) tweeted some pictures out to us.
Marie's kidney had arrived and Matthew's had been taken out. His kidneys were compared to rotten meat the size of a wad of bubble gum (ewww). Here's the comparison picture of two unhealthy kidneys and one GREAT kidney!
I started getting all hyper at that point. Life was going into my son, taking away disease and death. I just hoped beyond all hope that it would "take". We needed liquid gold to squirt out of that thing! With every update after that, I would ask...is there pee? Any pee yet? Did you see pee? No one answered that they had. AAAAAAAHHHHHH!
Then the transplant surgeon came out. I RAN into his arms right smack dab in the middle of the OR waiting room. I just gave him a BIG hug and sobbed on his shoulder when he told me Matthew was peeing for the first time in 3 months, REAL pee for the first time in his lifetime. Yep, there was a nice wet spot right there on his scrubs...but he just got out of surgery...he'd change them anyway. ;) I thanked him profusely and set about calling everyone! I really just wanted to see my son. But before we could see him, we took the picture we'd been waiting to take....
So off to the PICU waiting room to wait until Matthew got his bed assignment after recovery. That was around 2:30pm. We didn't see him until 7pm. He was NOT tolerating his pain well at all and was freaking out about being alone with nurses he had never met. They finally called me back saying that usually they don't let parents see their child like this, but it was all they could do besides sedate and intubate again. The moment he touched him, his blood pressure dropped by 20 points. He was still in pain, but he was near someone familiar and was able to start breathing again. They were setting up to bag him before I got there. His sats had dropped to the 50's and his arms, legs and face were turning blue. He pinked up nicely again soon after our arrival. Mommy didn't lay down at all that night. Just had to comfort my son since his pain meds were cut when his respiration went down. So I know he was hurting.
They next few nights got worse before they got better. The worse night being Sunday night when Matthew's prograf (anti-rejection med) reached dangerously toxic levels of 42 (needed to be 10 - 12). He was hallucinating and frantic. He didn't recognize us, would scream, tear at his skin and stop breathing. Another "bag him" night. UGH! But as all things do, they get worse before they get better. And now..they are SO much better! He is peeing up a storm...seriously...we're drowning in urine here and couldn't be happier about! His labs are still finicky, but look awesome! Marie is recovering well and even came to visit us this past Monday when we were still in-patient and she was needed across the street for her check up. Matthew was so smiley his last weekend at the hospital.
With transplant, we have gained a functioning kidney, urine and an appetite. We have also gained new family members (Marie and Steve and their kids). Matthew has become a brand new person. He is still Matthew, but more. He is for lack of better word and at the risk of sounding corny... ALIVE! His smiles are broader, his laughter is richer, his energy is multiplied. And our hearts and lives are SO full now. We could not be happier with everything. Still in awe of our son. Still overwhelmed of what Marie has done for him...for us. Our boy is healthy!!!! Thank you God for allowing things to come in your time and in your way. I could not see a happier ending than what we have right now. Our boy is healthy. :)
Sunday, November 22, 2009
Meet Aubrey
I was working on an entry about premature awareness month for November, but then something happened. Something bigger than me, bigger than my small "platform" on prematurity (it will be coming later this week). Little Aubrey. Aubrey is an angel on Earth and if the insurance companies wouldn't spin out into oblivion by looking at how costly it would be...I'd promise Matthew off to her. :) Look at this face and just try to deny how cute she is!
I had the great joy of meeting sweet Aubrey this spring at Egleston. I was dear friends with her father in high school, but like with most friends...with the passing of time and the building of our families...will lost track of each other. I never dreamed I would meet Jeremy once again on the transplant floor of all places. It was both wonderful and awful to see him. We caught up 8 years in the thirty minutes before Matthew's dialysis run. And Matthew and Aubrey waved to each other in their respective strollers. I know God brought Jeremy's beautiful family back into my life for a reason, though I wish it could have been the fact that our kids were on the same soccer team instead. I know the doctors, I know the nurses, I know transplants...maybe I could give them some knowledge...in anyway possible. However, I don't know pediatric cancers.
You see little Aubrey is a big fighter. Late last year she was diagnosed with a very rare tumor called a Rhabdoid tumor. Her poor body endured numerous months of chemo before she was finally given the sweetest gift - the gift of life from an angel with a signed donor card. This summer, Aubrey was finally declared cancer free with the help of a liver transplant and God's healing grace. I shared Aubrey's miracle with my friends and family and all rejoiced for her and with us!
Last week, Aubrey's parents noticed some sort of mass in her abdomen, and after calling the transplant team, thought it was likely to be a hernia. After transplant clinic a few days later, it was determined NOT to be a hernia. It is "something", believed to be the Rhabdoid returning. Tests, biopsies and surgeries will follow this week with an official diagnosis.
As most of my friends know, I rarely ask for prayers (especially for myself or my family), but I humbly ask you know to pray for this family.
This loving, Christian family that has already received one miracle desperately needs another one right now. Please pray that the tumors are benign or that the tumors are a less agressive type, an type that responds to medicine and chemo quickly. Please pray that God will keep this family enfolded in His strong arms. Pray that both Michelle and Jeremy find wisdom, hope and comfort in the days and years to come. Pray that older sister Maddie finds security and happiness as her family is once again torn between two places. And pray for complete healing for Aubrey...here in her earthly home.
God, I know You have this all mapped out already...but please allow us a selfish request to keep an angel on Earth with her family. Help her story and her fight unite people to better love and serve You as You perform yet another miracle through her. Please God, encourage others to give their time and money to various children's hospitals through out the country this holiday season in honor of Aubrey and her past battle, her current fight. A big request, for a small person. Lord, hear our prayer.
Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. (Prov 3.5-6)
I had the great joy of meeting sweet Aubrey this spring at Egleston. I was dear friends with her father in high school, but like with most friends...with the passing of time and the building of our families...will lost track of each other. I never dreamed I would meet Jeremy once again on the transplant floor of all places. It was both wonderful and awful to see him. We caught up 8 years in the thirty minutes before Matthew's dialysis run. And Matthew and Aubrey waved to each other in their respective strollers. I know God brought Jeremy's beautiful family back into my life for a reason, though I wish it could have been the fact that our kids were on the same soccer team instead. I know the doctors, I know the nurses, I know transplants...maybe I could give them some knowledge...in anyway possible. However, I don't know pediatric cancers.
You see little Aubrey is a big fighter. Late last year she was diagnosed with a very rare tumor called a Rhabdoid tumor. Her poor body endured numerous months of chemo before she was finally given the sweetest gift - the gift of life from an angel with a signed donor card. This summer, Aubrey was finally declared cancer free with the help of a liver transplant and God's healing grace. I shared Aubrey's miracle with my friends and family and all rejoiced for her and with us!
Last week, Aubrey's parents noticed some sort of mass in her abdomen, and after calling the transplant team, thought it was likely to be a hernia. After transplant clinic a few days later, it was determined NOT to be a hernia. It is "something", believed to be the Rhabdoid returning. Tests, biopsies and surgeries will follow this week with an official diagnosis.
As most of my friends know, I rarely ask for prayers (especially for myself or my family), but I humbly ask you know to pray for this family.
This loving, Christian family that has already received one miracle desperately needs another one right now. Please pray that the tumors are benign or that the tumors are a less agressive type, an type that responds to medicine and chemo quickly. Please pray that God will keep this family enfolded in His strong arms. Pray that both Michelle and Jeremy find wisdom, hope and comfort in the days and years to come. Pray that older sister Maddie finds security and happiness as her family is once again torn between two places. And pray for complete healing for Aubrey...here in her earthly home.
God, I know You have this all mapped out already...but please allow us a selfish request to keep an angel on Earth with her family. Help her story and her fight unite people to better love and serve You as You perform yet another miracle through her. Please God, encourage others to give their time and money to various children's hospitals through out the country this holiday season in honor of Aubrey and her past battle, her current fight. A big request, for a small person. Lord, hear our prayer.
Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. (Prov 3.5-6)
Thursday, November 12, 2009
I am thankful
I am thankful that Matthew's surgery allowed him to be in patient for 10 days so we could learn about some potentially dangerous complications due to his high blood pressure. I knew high blood pressure over the long term was bad, but no one expected it to get so bad so quickly. Matthew's heart is damaged, but not irreversibly. With new meds, (and a new kidney, minus TWO crappy kidneys) Matthew's heart will be repair itself and be just fine. But they will monitor it now. If things go from bad to worse, we get listed...no more waiting. Without being in-patient -they would not have caught the fluid in his heart, in his lungs and the thickening of his ventricles. But we caught it...we caught it...it will be ok. I am thankful!
I am thankful we got a larger catheter...which makes for a smoother dialysis. With smoother dialysis...you get less alarms. Alarms cause the machine to stop...when the machines stop, the blood isn't getting clean. Matthew's blood is the cleanest it has been for a while! The day of surgery - his creatinine was 7.8, now it is 2.7. :) This mommy is thankful AND happy! And so is Matthew. :)
I am thankful that Matthew smiles the brightest smile for me when I need it. I took the hospitalization a lot harder than he did! Everyday to be told "you'll go home tomorrow", only to be re-told "well, one more night". To be given discharge papers THREE times and only for one of those to actually hold true! VERY frustrating. But that smile...made it worth it. Bad food, no sleep, 5am labs and REALLY having to relieve your bladder right as the doctor, intern and resident ALL walk in to do each of their separate spills. I'm thankful Matthew is so happy...he makes me happy.
I am thankful William is strong and healthy. I am thankful that I don't take his health for granted anymore...I just realize how blessed I am to be a mom to a "normal" extraordinary kid. He still surprises me with his intelligence and sense of humor. His athletic abilities are gaining too. Hmmm - dare we say track star? This boy rocks my world everyday. I'm thankful to be his mother...and that he tells me he misses me when I'm gone (even if it ends up making me cry afterwards).
I am thankful for unexpected detours that lead to wonderful family memories. I am thankful I can't plan it all, but can enjoy every second. I'm thankful for my family that God game me. For a supportive husband that lets me cry on his shoulder or come home from the hospital so I can spend some time with our other son. I'm thankful for my parents that came up to the hospital EVERY evening so that I was able to get a "break" to take a shower, take a nap, take a breath. I'm thankful for my "family" friends that lifted us up in prayer and my special "big sis" Robin that even drove down to visit us. Yeah, my family is kind of...wonderful and for that...I'm thankful.
Saturday, August 29, 2009
a day in the life
It's been a long time coming, but I'm finally getting to it. A day in the life of Matthew, photo journal style. Now some changes have been made since I took these pics a month ago - like no longer on procrit/epogen, he is on Aranesp that he gets once a week at diaylsis.) These include diaylsis and the common what we do when the g-tube has been pulled out too. If you have any questions about these pictures, please do not hesitate to ask. Whether you have a kidney baby, or know a kidney adult it would be a wonderful opportunity to share tricks of the trade. I will do this for my kidney donation steps too. Beware - you will see a jug of pee in the future (just not me actually peeing into it...I do have some privacy issues!). Also, you will never see pics of any of my children in situations that I am needed to hold their hand and soothe them. So no pictures of getting the actual shot of procrit, no pictures of the g-tube being pulled out or me shoving in a new replacement, and no pictures of bandage change. Trust me, those times are deeply burned into my memory and I have NO need for Matthew to ever see them anyway. I hope you learn a little something about kidney function and what life is like without. If nothing else, I hope you see what a remarkable son I have and all the trials he faces - with such sweet smiles and giggles. :) On to the show:
Daily Medicines
The meds on the counter basically help to control electolyte imbalances that your kidneys do naturally: sodium, iron, calcium, parathryoid levels, potassium and phosphorus. He has one or two meds for each of those electrolytes. The meds in the frig are for high blood pressure, kidneys also control that function in your body too. The jug next to the meds is his formula. We make a new 32 oz batch every night at 10pm; we add kayexlate and shake. The kayexlate binds the potassium and settles to the bottom. In the morning we pour off the formula, leaving the brown sludge you see pictured. Too much potassium can cause someone to go into cardiac failure. Matthew hoards pottasium! He's not allowed any. I have noticed muscle cramps and spasms because of this - we now had baby applesauce through his g-tube four days a week, both days of the weekend since he gets dialysis on Friday and Monday and then Tuesday and Thursday too. This keep his potassium level right around 4.7 - 5.1, perfect!
Here's what his formula is comprised of (I didn't take a pic of the kayexlate, but you saw the "final" product anwyay. :)
Here are the "special meds" he doesn't get these every day. Which is good - we have enough problems with the heparin he gets...stupid bloody noses!! And like I said before, no more procrit...we have "moved up" to stronger meds - Aranesp (a protein made from human plasma).
OK, so how do we get these meds into him you ask - his g-tube of course. LOVE the g-tube. No more iron stains, no more half doses due to spit up, and no more forcing a tiny baby down and making him swallow these VILE things! So, here's the package and the tube itself. You can see the two ports; the med port with the small medicine syringe and the feed port where I do his bolus and night time feeds. Also attaching what the temporary "replacment" looks like for after he pulls out his own g-tube - not that he EVER does that right...umph!
I think I've got a lot of pics up right now, so I'm going to just move on to dialysis...but know there are a LOT more. I have tegaderms (breathable bandages), swabs and catheters for cultures of urine, the feed pump (which I belive you can see him hooked up to that on his caringbride site, the 2nd page of pics...I really need to update those...) Also his therapy, but I don't have Crystal's permission to put her pic up here, I'll ask her next week if she would mind. :)
So why don't you travel 64 miles with me from our door to Egleston's door. We are across the street from Emory University Hospital smack in between the city of Decatur and Atlanta, though it is given an Atlanta address. We head down four stories into the parking deck, parking on the very bottom level so we don't have to fight for a spot or be followed by parking vultures (which just makes me go slower people!). Up into the elevator to another elevator further in the heart of the hospital. The butterfly elevators. :) Now up 6 floors to the transplant wing and greet our family. I will not be publishing pics that I have taken with nurses/dieticians/child life workers, because again I only had their permission for his transplant journey book that I am making - not my blog. These pictures were taken on his first birthday, thus why I have my camera at dialysis in the first place. :) Oh and the one pic of his hospital crib, if you look closely you can see his little arm hanging out...he was napping. :)
Again, these nowhere near show you the amount of crap he puts up with every day. It's a small glimpse into a BIG life he is going to live. And because of all the crap he puts up with daily - he IS going to live! I'm so proud of my little fighter. Matthew is my hero. :)
Daily Medicines
The meds on the counter basically help to control electolyte imbalances that your kidneys do naturally: sodium, iron, calcium, parathryoid levels, potassium and phosphorus. He has one or two meds for each of those electrolytes. The meds in the frig are for high blood pressure, kidneys also control that function in your body too. The jug next to the meds is his formula. We make a new 32 oz batch every night at 10pm; we add kayexlate and shake. The kayexlate binds the potassium and settles to the bottom. In the morning we pour off the formula, leaving the brown sludge you see pictured. Too much potassium can cause someone to go into cardiac failure. Matthew hoards pottasium! He's not allowed any. I have noticed muscle cramps and spasms because of this - we now had baby applesauce through his g-tube four days a week, both days of the weekend since he gets dialysis on Friday and Monday and then Tuesday and Thursday too. This keep his potassium level right around 4.7 - 5.1, perfect!
Here's what his formula is comprised of (I didn't take a pic of the kayexlate, but you saw the "final" product anwyay. :)
Here are the "special meds" he doesn't get these every day. Which is good - we have enough problems with the heparin he gets...stupid bloody noses!! And like I said before, no more procrit...we have "moved up" to stronger meds - Aranesp (a protein made from human plasma).
OK, so how do we get these meds into him you ask - his g-tube of course. LOVE the g-tube. No more iron stains, no more half doses due to spit up, and no more forcing a tiny baby down and making him swallow these VILE things! So, here's the package and the tube itself. You can see the two ports; the med port with the small medicine syringe and the feed port where I do his bolus and night time feeds. Also attaching what the temporary "replacment" looks like for after he pulls out his own g-tube - not that he EVER does that right...umph!
I think I've got a lot of pics up right now, so I'm going to just move on to dialysis...but know there are a LOT more. I have tegaderms (breathable bandages), swabs and catheters for cultures of urine, the feed pump (which I belive you can see him hooked up to that on his caringbride site, the 2nd page of pics...I really need to update those...) Also his therapy, but I don't have Crystal's permission to put her pic up here, I'll ask her next week if she would mind. :)
So why don't you travel 64 miles with me from our door to Egleston's door. We are across the street from Emory University Hospital smack in between the city of Decatur and Atlanta, though it is given an Atlanta address. We head down four stories into the parking deck, parking on the very bottom level so we don't have to fight for a spot or be followed by parking vultures (which just makes me go slower people!). Up into the elevator to another elevator further in the heart of the hospital. The butterfly elevators. :) Now up 6 floors to the transplant wing and greet our family. I will not be publishing pics that I have taken with nurses/dieticians/child life workers, because again I only had their permission for his transplant journey book that I am making - not my blog. These pictures were taken on his first birthday, thus why I have my camera at dialysis in the first place. :) Oh and the one pic of his hospital crib, if you look closely you can see his little arm hanging out...he was napping. :)
Again, these nowhere near show you the amount of crap he puts up with every day. It's a small glimpse into a BIG life he is going to live. And because of all the crap he puts up with daily - he IS going to live! I'm so proud of my little fighter. Matthew is my hero. :)
Thursday, March 5, 2009
March
Every March, the National Kidney Foundation sponsors National Kidney Awareness Month, an educational outreach program aimed at raising awareness of kidney diseases. According to their education programs, approximately 8 million Americans suffer from reduced kidney function and up to 400,000 require dialysis or transplants to live.
For the rest of the month, many of the various kidney associations will be holding educational events and handing out kidney awareness bracelets. Early kidney disease has no symptoms and since people with diabetes or high blood pressure are particularly vulnerable, anyone suffering from those conditions are encouraged to test themselves often.
Here is a link to Matthew's hospital where he undergoes hemo and will eventually undergo his life changing transplant surgery. http://www.choa.org/default.aspx?id=694
Please, for the month and every month after, keep all of the patients, both children and adults, in your prayers. This is a rough disease that affects the entire family and not just the individual. Pray for the caretakers, doctors, nurses and extended family. Keep your health in check too. Is it time for you to go pee in a cup? Maybe this is the month to do so.
For the rest of the month, many of the various kidney associations will be holding educational events and handing out kidney awareness bracelets. Early kidney disease has no symptoms and since people with diabetes or high blood pressure are particularly vulnerable, anyone suffering from those conditions are encouraged to test themselves often.
Here is a link to Matthew's hospital where he undergoes hemo and will eventually undergo his life changing transplant surgery. http://www.choa.org/default.aspx?id=694
Please, for the month and every month after, keep all of the patients, both children and adults, in your prayers. This is a rough disease that affects the entire family and not just the individual. Pray for the caretakers, doctors, nurses and extended family. Keep your health in check too. Is it time for you to go pee in a cup? Maybe this is the month to do so.
Tuesday, November 4, 2008
still alive!
I know...I know...I went MIA for a while, but hopefully I'm back for more regular postings soon. Out of the 31 days of October, 21 of them were spent at Egleston's Children's Hospital in Atlanta for three different surgeries. But we are home, playing and growing now, so all is happy in my little world! And this weekend was made even happier when Georgia Tech won a nailbiter of a game against FSU and the puppies from Athens got their tails handed to them by some Gators. :) Just had to throw that little tidbit in for good measure!
Autumn has finally arrived in Hotlanta! The past two weeks, I actually had to turn the heat on at night when it would dip into the upper 40's some nights. Other nights we mistakenly left the windows up since it's been in the upper 70's during the day, well when 6:30am rolls around for Ian to wake up...it's a mighty rude awakening. Being in the 50's outside drops the inside of the house into the mid 60's. The kids and I were bundled up in sweatshirts for a good hour while the heater caught up once I turned it on. But I love the weather and the show outside along the roads.
Matthew and I were heading up from our labs at Scottish Rite late this morning and I had to stop along side the road our neighborhood is off of (Hwy 20 in North Ga). It's a crappy pic because it was taken by camera phone, but here it is:
Today is election day. I'll be voting once Ian gets home and dinner is made. I'll be one of the stragglers that the polling places hate I'm sure since they are ready to close up and go home after a long day. I know who I favor and would like to see as the next president, but I don't know if America is ready to agree or not. It seems people have a bad taste in their mouths for Republicans at the moment, whether you are actually affliated with the party or not. Kind of like the Clinton era. Gore probably would have won the presidency if people weren't sick of the lies and immoral behaviors that were unfortunately part of the administration. I have a feeling that with the economy, war and just being 8 years...America is ready for a change.
I have prayed on this, even when driving home from the hospital this morning. Just because I think I know who is right for this country and helping her to turn back to her values that everyone has completely forgotten. But maybe God has other things in mind. Maybe it is His plan to let this nation under God hit (Barak) bottom and people will realize how much we still need Him. Can't rely on the government for our spiritual well being, though it seems they think they are the only ones capable of "saving" us. I pray God will guide our country with whichever president He sees is best for us at this time. Time will tell us of His plans, for now I'll just sit back, bite my tongue when I feel obsenities starting to rise out, and wait to see what He has in store.
Go vote for whoever you believe in even if it is the odd man out Nadar! Just do your duty as a citizen today. God will always watch over us, no matter which man sits in a oval room!
Autumn has finally arrived in Hotlanta! The past two weeks, I actually had to turn the heat on at night when it would dip into the upper 40's some nights. Other nights we mistakenly left the windows up since it's been in the upper 70's during the day, well when 6:30am rolls around for Ian to wake up...it's a mighty rude awakening. Being in the 50's outside drops the inside of the house into the mid 60's. The kids and I were bundled up in sweatshirts for a good hour while the heater caught up once I turned it on. But I love the weather and the show outside along the roads.
Matthew and I were heading up from our labs at Scottish Rite late this morning and I had to stop along side the road our neighborhood is off of (Hwy 20 in North Ga). It's a crappy pic because it was taken by camera phone, but here it is:
Today is election day. I'll be voting once Ian gets home and dinner is made. I'll be one of the stragglers that the polling places hate I'm sure since they are ready to close up and go home after a long day. I know who I favor and would like to see as the next president, but I don't know if America is ready to agree or not. It seems people have a bad taste in their mouths for Republicans at the moment, whether you are actually affliated with the party or not. Kind of like the Clinton era. Gore probably would have won the presidency if people weren't sick of the lies and immoral behaviors that were unfortunately part of the administration. I have a feeling that with the economy, war and just being 8 years...America is ready for a change.
I have prayed on this, even when driving home from the hospital this morning. Just because I think I know who is right for this country and helping her to turn back to her values that everyone has completely forgotten. But maybe God has other things in mind. Maybe it is His plan to let this nation under God hit (Barak) bottom and people will realize how much we still need Him. Can't rely on the government for our spiritual well being, though it seems they think they are the only ones capable of "saving" us. I pray God will guide our country with whichever president He sees is best for us at this time. Time will tell us of His plans, for now I'll just sit back, bite my tongue when I feel obsenities starting to rise out, and wait to see what He has in store.
Go vote for whoever you believe in even if it is the odd man out Nadar! Just do your duty as a citizen today. God will always watch over us, no matter which man sits in a oval room!
Thursday, July 24, 2008
MIA!
I won't be around this weekend and most likely for a good part of next week too. My baby's coming home!!! After 7 long weeks in the NICU, Matthew is being discharged tomorrow to head over to Egleston. Ian and I have been there for the past four days doing our out patient peritoneal dialysis training at their clinic. Tomorrow...we practice on a living person...our BABY! EEK!! The clinic is only open on Mon - Fri, and we have to do a 48 hour trial run. So, depending on when he gets there on Friday, if the clinic is still open we can start then and finish our observation period on Monday and bring him home that evening! If not then we have our observation period Monday and Tuesday with Matthew coming home on Tuesday evening. But I will be spending the night with him in his patient room (not the NICU!) starting tomorrow night. I'm looking forward to waking up at 3am and feeding and rocking him. I'm looking forward to his screams of outrage when I give him his first sponge bath from a parent. I'm looking forward to holding him without my gaze having to stray back to the monitors if an alarm nearby goes off. I'm looking forward to him not having any wires or constraints to him...I'll finally be able to dance with my baby properly! I'm just looking forward to it all. I'll write when I get the chance and post pics! Thanks for being part of our little short journey so far!
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