From the very beginning, I have hoped and prayed that I would be not only a perfect match for Brody but also healthy enough to give up an organ. I would give my life for my child (what parent wouldn't) so I most certainly can "share my spare" without hesitation. We had to wait for authorization from our insurance company, and wait for Brody to gain most of his weight but finally on August 13th, 2013 we were able to begin the evaluation process. We met with one of Brody's transplant
surgeons, a social worker, a psychologist, his nephrologist, a pharmacist, a child
life specialist, a financial coordinator, his nutritionist, and his transplant
coordinator. Brody also got ANOTHER ultrasound done (I have come to fear ultrasounds). Adam's sister, Abby, selflessly got tested the same day, along with me, to see if she was a match to donate. A few days later we found out that the initial blood tests showed we were BOTH a match for Brody! CHOA sent over my donor packet to Emory for further testing with plans to move on to Abby if something showed that wouldn't allow me to donate.
Brody learned to walk, began speech therapy, started hemodialysis, and the holidays came and went. He gained weight, he lost weight, and had a few surgeries in between.
On December 30th, 2013 I completed a 24 hour urine test (its a glamorous life, people) and more blood work. I passed those tests so an evaluation day was scheduled for January 28th, 2014 at Emory. I had
more blood tests and an EKG done. I talked to a living donor advocate, another
social worker, another financial counselor, another psychiatrist, another nephrologist,
and one of my transplant surgeons. I was suppose to have a chest x-ray and a CT scan that day as well but it started snowing, the news was reporting the traffic getting worse and worse, and I kept seeing facebook posts about people getting stranded and walking home, so I decided to leave the evaluation early. I don't know how but thankfully it only took me 3 hours to get home.
I went back for my chest x-ray and CT scan on February 11th. Funny. It snowed again that day...we live in GEORGIA. But the snow held off until we left the hospital. A week and a half later on February 20th, I got the call. PHEW!! After six months of tests and waiting and more tests but mostly waiting I have been approved to donate my kidney!!
So now we continue to wait. haha. But we wait with a kidney ready to go! :)
Thursday, March 20, 2014
Wednesday, October 2, 2013
1 year, 5 months, 5 days
On April 27th, 2012 Brody's doctor explained that they were over-dialyzing (is that a word?) him and they were going to skip dialysis for the day. One day quickly turned in to a week, then a few weeks, then a month. Brody came home from the NICU without requiring dialysis but only orders for biweekly lab work. His doctors kept predicting that he'd eventually have to go back on dialysis before receiving his transplant but it was just a waiting game.
Well, it has been 1 year, 5 months, and 5 days. His little body has finally outgrown his kidney function so tomorrow he will restart treatment.
We were given the option to try peritoneal dialysis (which is what he was on while in the NICU) but that requires surgery to put another catheter into his abdomen (which would make 3 tubes in his tiny round belly), and 8 hours of treatment every single night. We would have a machine at home and Adam and I would be trained to do it ourselves.
Our second option was hemodialysis which would have to be done at a pediatric dialysis clinic, 3 hours a day for 3 days per week and it would require a catheter in his chest.
Even though we live an hour from the closest pediatric dialysis clinic, and both Adam and I work full-time, we went with the second option. We saw how uncomfortable Brody was while on peritoneal dialysis (filling & draining his belly over and over) and to be honest, it was extremely nerve wracking...I'm not sure I would be able to sleep with that going on. Ugh, I get anxious just thinking about it. We will make our schedules work- Adam can work longer hours if needed and even on the weekends, family has offered to help, and I can continue to work and build up sick time and take him myself every so often. We'll have our nights with only one machine to sound alarms (his feeding pump) and we know that this will be temporary. It's just a short bridge on our way to a transplant. He will hopefully feel much better (although he really doesn't act like what I would assume a sick baby to act like), eat better, and gain weight faster so we can reach our ultimate goal: transplant. Right now he is around 19 lbs and almost 19 months old. Just 3 more pounds to go...but that could take a few months.
I've already had the blood test done to see if I am a match to be a donor for Brody. Thankfully I am, as is my sister-in-law, Abby who also got tested. I hope to begin the rest of the work-up (MRI, ultrasound, etc.) within the next month or two to see if I'm healthy enough to donate... I hope we are celebrating Brody's second birthday fully recovered from transplant surgery. I can't wait to see him running after his brother and playing right along with his cousins. Right now he is a master crawler, a very cautious climber, and quickly becoming a bona fide walker! He is walking more and more every day and gaining the confidence for speed! Although he still doesn't really want to eat food, he'll put anything he finds on the floor right in his mouth. We just started speech/feeding therapy and I'm excited to see how this helps him. He is so happy and giggles at anything Ryder does. He has his momma's temperament, and his daddy's sense of humor. He likes to play peek-a-boo and loves to be outside. He likes to watch Spider-Man and Mickey Mouse Clubhouse and will dance to any and all music. He can say "DaDa", "Uh-oh", "uh-uh" (as in "no"), and "DUH" (this can mean both "duck" and "dog". And I think "I want that" and "go over here" and "what?" and "I want to go out side" and "yes, I want my bottle"). He can say "down" and recently learned "go dawgs!" and no, he still hasn't said mama. He has also started pointing at things he wants. I wish I could bottle up the cuteness and keep it forever.
He gives the best hugs and the most perfect kisses- smack and all.
So for now we continue to wait. Be patient, continue praying, and trust God to comfort and heal Brody. I know a transplant won't "cure" him and this is something he will have to deal with every single day for the rest of his life, but man will it be a sweet day.
Well, it has been 1 year, 5 months, and 5 days. His little body has finally outgrown his kidney function so tomorrow he will restart treatment.
We were given the option to try peritoneal dialysis (which is what he was on while in the NICU) but that requires surgery to put another catheter into his abdomen (which would make 3 tubes in his tiny round belly), and 8 hours of treatment every single night. We would have a machine at home and Adam and I would be trained to do it ourselves.
Our second option was hemodialysis which would have to be done at a pediatric dialysis clinic, 3 hours a day for 3 days per week and it would require a catheter in his chest.
Even though we live an hour from the closest pediatric dialysis clinic, and both Adam and I work full-time, we went with the second option. We saw how uncomfortable Brody was while on peritoneal dialysis (filling & draining his belly over and over) and to be honest, it was extremely nerve wracking...I'm not sure I would be able to sleep with that going on. Ugh, I get anxious just thinking about it. We will make our schedules work- Adam can work longer hours if needed and even on the weekends, family has offered to help, and I can continue to work and build up sick time and take him myself every so often. We'll have our nights with only one machine to sound alarms (his feeding pump) and we know that this will be temporary. It's just a short bridge on our way to a transplant. He will hopefully feel much better (although he really doesn't act like what I would assume a sick baby to act like), eat better, and gain weight faster so we can reach our ultimate goal: transplant. Right now he is around 19 lbs and almost 19 months old. Just 3 more pounds to go...but that could take a few months.
I've already had the blood test done to see if I am a match to be a donor for Brody. Thankfully I am, as is my sister-in-law, Abby who also got tested. I hope to begin the rest of the work-up (MRI, ultrasound, etc.) within the next month or two to see if I'm healthy enough to donate... I hope we are celebrating Brody's second birthday fully recovered from transplant surgery. I can't wait to see him running after his brother and playing right along with his cousins. Right now he is a master crawler, a very cautious climber, and quickly becoming a bona fide walker! He is walking more and more every day and gaining the confidence for speed! Although he still doesn't really want to eat food, he'll put anything he finds on the floor right in his mouth. We just started speech/feeding therapy and I'm excited to see how this helps him. He is so happy and giggles at anything Ryder does. He has his momma's temperament, and his daddy's sense of humor. He likes to play peek-a-boo and loves to be outside. He likes to watch Spider-Man and Mickey Mouse Clubhouse and will dance to any and all music. He can say "DaDa", "Uh-oh", "uh-uh" (as in "no"), and "DUH" (this can mean both "duck" and "dog". And I think "I want that" and "go over here" and "what?" and "I want to go out side" and "yes, I want my bottle"). He can say "down" and recently learned "go dawgs!" and no, he still hasn't said mama. He has also started pointing at things he wants. I wish I could bottle up the cuteness and keep it forever.
He gives the best hugs and the most perfect kisses- smack and all.
So for now we continue to wait. Be patient, continue praying, and trust God to comfort and heal Brody. I know a transplant won't "cure" him and this is something he will have to deal with every single day for the rest of his life, but man will it be a sweet day.
Friday, March 15, 2013
Brody bear is ONE!
Well, it's official. My baby is the big 1.
We had asmall gathering of family and friends at our house this past Sunday and what a beautiful day for a party it turned out to be! I could NOT have asked for better weather. And since Brody is nothing short of an All-Star...and since he finished his rookie year (I'm a dork, I know)...we went all out baseball style. We served hot dogs, and had some other concession stand food & drinks to round out the menu.
Need some peanuts and cracker jacks? I've got plenty.
(but who cares, no big deal, I want moooooore! ...yes, I now have these two songs stuck in my head. You too? you're welcome!)
We didn't have the grand "welcome home" party that I initially hoped to have when Brody left the NICU so it was nice to have people over and celebrate his birthday. It was also really nice to get outside and take advantage of our porch, deck, trampoline(s), play ground, etc. after this long, wet winter we've had.
Did I mention the weather was gorgeous?
Of course our weekend wouldn't be complete without some sort of emergency. Big brother proved he doesn't let other people hog all the attention and decided to knock out another tooth. If you saw the picture Adam posted on facebook you know it had to have hurt. Ouch. I hurt just thinking about it. He actually didn't knock it all the way out, but just knocked it back to where the root was exposed and he couldn't close his mouth. The dentist took one quick look and said, "it's got to come out." Ugh. Anyways, he was a trooper and holds no hard feelings towards the dentist. And what's funny, Ryder's losing teeth and Brody's getting teeth. Brody's first tooth erupted on Feb. 27th and he got his second tooth on his birthday, March 11th.
Their smiles still melt my heart, with or without teeth.
In other exciting, or not so exciting news, I turn the big 3-0 this coming Monday. This is where I start pondering the whole concept of time and realize I really have no grasp on it. Wasn't I just starting college, wondering what the heck I was going to do with my life, and acting a fool? When the heck did I become a 30 year old wife and mother of two with a full time job? Jeeze.
Speaking of, I cleaned out some of my junk from my mom's house just recently and found some amazing things that brought me back to my childhood. Stephanie, remember these??
The 80's were awesome. And that's all I have to say about that.
Anyways. I am so excited that my brothers and their families, as well as my grandmother, are all coming down to visit soon. I cannot wait to see everyone. Everyone's a little happier when the boys are around. ;)
And now I leave you with a rare family photo because I have slacked off and shamefully hardly ever take real (as in not from my iphone) pictures anymore.
We had a
Need some peanuts and cracker jacks? I've got plenty.
(but who cares, no big deal, I want moooooore! ...yes, I now have these two songs stuck in my head. You too? you're welcome!)
We didn't have the grand "welcome home" party that I initially hoped to have when Brody left the NICU so it was nice to have people over and celebrate his birthday. It was also really nice to get outside and take advantage of our porch, deck, trampoline(s), play ground, etc. after this long, wet winter we've had.
Did I mention the weather was gorgeous?
Of course our weekend wouldn't be complete without some sort of emergency. Big brother proved he doesn't let other people hog all the attention and decided to knock out another tooth. If you saw the picture Adam posted on facebook you know it had to have hurt. Ouch. I hurt just thinking about it. He actually didn't knock it all the way out, but just knocked it back to where the root was exposed and he couldn't close his mouth. The dentist took one quick look and said, "it's got to come out." Ugh. Anyways, he was a trooper and holds no hard feelings towards the dentist. And what's funny, Ryder's losing teeth and Brody's getting teeth. Brody's first tooth erupted on Feb. 27th and he got his second tooth on his birthday, March 11th.
Their smiles still melt my heart, with or without teeth.
In other exciting, or not so exciting news, I turn the big 3-0 this coming Monday. This is where I start pondering the whole concept of time and realize I really have no grasp on it. Wasn't I just starting college, wondering what the heck I was going to do with my life, and acting a fool? When the heck did I become a 30 year old wife and mother of two with a full time job? Jeeze.
Speaking of, I cleaned out some of my junk from my mom's house just recently and found some amazing things that brought me back to my childhood. Stephanie, remember these??
The 80's were awesome. And that's all I have to say about that.
Anyways. I am so excited that my brothers and their families, as well as my grandmother, are all coming down to visit soon. I cannot wait to see everyone. Everyone's a little happier when the boys are around. ;)
And now I leave you with a rare family photo because I have slacked off and shamefully hardly ever take real (as in not from my iphone) pictures anymore.
 |
| "Cheese" |
Wednesday, February 6, 2013
Rough Start
2013. What can I say about 2013? Well, just in the month of January we visited the pediatricians office 7 times, made 3 trips to the ER, had 2 routine lab appointments, got 1 X-ray, and was admitted to the hospital for an overnight stay. But who's counting?
It started around Christmas with a monstrous bug that plagued both boys and left Brody wheezing and coughing and in need of breathing treatments for several weeks. It turned into pneumonia and about the time he started feeling better his nephrostomy tube decided to abort ship. That's been a fun ride. The surgeon does not want to replace the tube because of the large amount of scar tissue in his kidney. Keep in mind this is the only way urine can leave his body. So we are using catheters/feeding tubes that we have to place in his side ourselves and replace every few days until further notice. And even though he went through a really weird few weeks of refusing his bottle (he would only drink on avg. 1.5oz at a time) and throwing up a lot (when your kidneys don't perform normally you can feel nauseous because your body is not eliminating waste product like it should), Brody's lab work has actually looked really good lately. He's been struggling with the weight gain since November...actually lost a little weight...but *knock on wood* *fingers crossed* *praying on bent knees* he actually seems hungry and eager for food the past few days. This is something very new and very exciting. Brody is also starting to become mobile - army crawling and rolling around everywhere. He'll make you dizzy! It is so cute and also so encouraging to see him progressing. He has been in physical therapy for a few months now and the therapist is quite impressed with his improvement.
...I'm often reminded that life is sometimes 2 steps forward, 1 step back. *sigh*
In other news, I now have a 3 year old! Ryder, he is something else. I honestly cannot say enough about how funny this kid is. He is curious, cuddly, and all around BOY. Seriously. I don't even know what to write because my mind is just flooded with things he's done and said and I want to write it all down so I don't forget but there is just sooo much! ...my kid is just the best kid, all around, hands down. I'll leave it at that. Anyways, with Christmas, the sickies, and everything else going on I almost forgot to plan his birthday party.
But that's our little secret ;)
With mommy brain in full gear, we celebrated in style at Chick-Fil-A in Monroe. They were excellent and took care of us from start to finish. I highly recommend having your kid's party there, especially if you don't have time to plan anything more than the time & date. He enjoyed it and it was fun to watch him interacting with all his friends from school, and his cousins. ...He is currently obsessed with tools, trucks, cars, trains, guns, knives (Lord, help), Batman, Spiderman, Superman, and loves to watch Curious George and Max & Ruby. If you spend more than 5 minutes with him, he'll probably ask you why you have bones and who makes the sun come up, even though I've answered these very questions hundreds of times. He also likes to hunt for bears, deer, and wolves...they are everywhere!! He takes pride in working with his daddy and is the only person who can make Brody laugh instantly, no matter what.
Adam and I have both been crazy busy. And if we're not busy we're crazy tired. I look forward to things slowing down a bit and maybe going on a date or two with my husband. When you have someone babysit your child all day, every day while at work, it's kind of hard to find a babysitter on a Friday or Saturday night...it's also hard to not feel an enormous amount of guilt when you choose not to spend every waking second with them when nights and weekends are all you have. I know one day I will miss my kids, annoy my husband because we're always together, and look back at this and laugh.
And now I am reminded I must start to plan a FIRST BIRTHDAY PARTY!!! lol. Sometimes I feel like I'm just trying to stay afloat. :)
It started around Christmas with a monstrous bug that plagued both boys and left Brody wheezing and coughing and in need of breathing treatments for several weeks. It turned into pneumonia and about the time he started feeling better his nephrostomy tube decided to abort ship. That's been a fun ride. The surgeon does not want to replace the tube because of the large amount of scar tissue in his kidney. Keep in mind this is the only way urine can leave his body. So we are using catheters/feeding tubes that we have to place in his side ourselves and replace every few days until further notice. And even though he went through a really weird few weeks of refusing his bottle (he would only drink on avg. 1.5oz at a time) and throwing up a lot (when your kidneys don't perform normally you can feel nauseous because your body is not eliminating waste product like it should), Brody's lab work has actually looked really good lately. He's been struggling with the weight gain since November...actually lost a little weight...but *knock on wood* *fingers crossed* *praying on bent knees* he actually seems hungry and eager for food the past few days. This is something very new and very exciting. Brody is also starting to become mobile - army crawling and rolling around everywhere. He'll make you dizzy! It is so cute and also so encouraging to see him progressing. He has been in physical therapy for a few months now and the therapist is quite impressed with his improvement.
...I'm often reminded that life is sometimes 2 steps forward, 1 step back. *sigh*
In other news, I now have a 3 year old! Ryder, he is something else. I honestly cannot say enough about how funny this kid is. He is curious, cuddly, and all around BOY. Seriously. I don't even know what to write because my mind is just flooded with things he's done and said and I want to write it all down so I don't forget but there is just sooo much! ...my kid is just the best kid, all around, hands down. I'll leave it at that. Anyways, with Christmas, the sickies, and everything else going on I almost forgot to plan his birthday party.
But that's our little secret ;)
With mommy brain in full gear, we celebrated in style at Chick-Fil-A in Monroe. They were excellent and took care of us from start to finish. I highly recommend having your kid's party there, especially if you don't have time to plan anything more than the time & date. He enjoyed it and it was fun to watch him interacting with all his friends from school, and his cousins. ...He is currently obsessed with tools, trucks, cars, trains, guns, knives (Lord, help), Batman, Spiderman, Superman, and loves to watch Curious George and Max & Ruby. If you spend more than 5 minutes with him, he'll probably ask you why you have bones and who makes the sun come up, even though I've answered these very questions hundreds of times. He also likes to hunt for bears, deer, and wolves...they are everywhere!! He takes pride in working with his daddy and is the only person who can make Brody laugh instantly, no matter what.
Adam and I have both been crazy busy. And if we're not busy we're crazy tired. I look forward to things slowing down a bit and maybe going on a date or two with my husband. When you have someone babysit your child all day, every day while at work, it's kind of hard to find a babysitter on a Friday or Saturday night...it's also hard to not feel an enormous amount of guilt when you choose not to spend every waking second with them when nights and weekends are all you have. I know one day I will miss my kids, annoy my husband because we're always together, and look back at this and laugh.
And now I am reminded I must start to plan a FIRST BIRTHDAY PARTY!!! lol. Sometimes I feel like I'm just trying to stay afloat. :)
Monday, December 31, 2012
Reflection
WOW. Is it really December 31, 2012?
I realize it has been 6 months since my last post and I feel like such a failure! I promised myself if I was going to write a blog that I was going to keep at it and not get this far behind! Oh man...what have I done?! LOL. I could try and get everyone up to speed with where Brody's at but 6 months is a lot to write about. So, I'd like to take this time and opportunity to reflect back on the past year. Makes sense, right?
January started the year started off with a bang as we learned about Brody. I am thankful that I was able to grieve before the birth of my sweet baby, even though it made for a difficult pregnancy. And although I couldn't fully know what was to come at least I was prepared so it didn't come as a shock when I was left all alone, with empty arms, in a hospital room that was once filled with doctors and nurses immediately after giving birth.
February was filled with non-stress tests, bio physical profiles and ultrasounds. I learned to trust as God does not make mistakes. God created this perfect baby for our family. I admit, I did cry a few times feeling like I was robbed of a perfect pregnancy and a perfect baby. I had no idea that I was just defining the word "perfect" incorrectly.
In March we welcomed sweet Brody. Adam and I grew a lot during this time. Basically, March, April, and May were all about finding the delicate balance it took to spend time with Brody, with Ryder, and with each other. I have never so desperately wanted to just have my family together for one day. One hour. One minute. Brody needed a lot of machines and medications just to keep him alive and if Adam and I weren't at the hospital we were calling and speaking to his doctors and nurses.
I learned how to change a diaper with all sorts of wires and tubes in the way. I learned how to take his vitals, place a feeding tube, and give a shot. I knew how to read his monitors and which wires were safe to unplug to pick him up. Day after day I left him in the care of the hospital only to go home empty handed. It wasn't easy trying to explain to a 2 year old about his little brother, whom he had never met but somehow I believe Ryder got it. He has a love for Brody that is beyond words. They have such a special bond and it's so amazing to witness.
Brody surprised everybody and came off dialysis after just 6 weeks! He eventually got weaned off the oxygen and has been breathing completely unassisted since the end of April. Both of which I am so beyond thankful for. Every day with out dialysis is a miracle and I continue to ask God to bless us and keep him off of dialysis until he can get a transplant. His doctor even talked to us several times about a trach and that he may never breath on his own. I love how my little boy has proven doctors wrong time and time again. :)
Our family was finally together for the first time at the end of May. I will never forget the look on Ryder's face when he came running down the sidewalk to see his little brother.
Brody was hospitalized in June and twice in July for infections. He got rid of his feeding tube mid-July and we had the Brody Johnson Benefit to raise money for his medical expenses. I cannot say thank you enough to everybody who had a hand in putting together that benefit. It was amazing. Thank you to those that came and supported us. Thank you to those that could not be there but prayed for us. Thank you. I had to take a lot of unpaid time from work and God has provided for our every need.
Brody had his 7th surgery in August and a nephrostomy bag was put in place. It is cumbersome to say the least but we are learning to live with it.
September and October were low key. Just a LOT of doctor appointments and blood testing. Through it all I still have the happiest baby in the whole world. The ultimate challenge of these two months were simply trying to get Brody to gain weight. We took a weekend trip to Nashville for a wedding and of course had to make a trip to the ER there too. But this time it was for Ryder. Not 30 minutes after arriving at the hotel he knocked out his front tooth! He might be the most accident prone child ever. The highlight of the year however (second to Brody being born, of course) is that Ryder is finally diaper free! Hallelujah!! :)
I started back to work mid-November which comes as a huge blessing. It means Brody is well enough that I can return to work. Brody also started physical therapy through Babies Can't Wait. He was evaluated and found to have "mild delays" and I can really tell the therapy is helping. I can't say enough good things about Babies Can't Wait.
Brody had his latest surgery at the beginning of December and has continued to pack on the pounds. He is in the less than 2 percentile for both height and weight but his doctor is happy with his own growth curve. He is currently around the 14 pound mark and can sit up on his own pretty well. He's finally starting to bear weight on his feet too. He has a contagious, heart-melting smile and loves the sound of his own voice. Oh, and Ryder chipped his other front tooth. ;)
Eight surgeries, 2 blood transfusions, hundreds of blood tests, ultrasounds, x-rays and doctor appointments, I'm happy 2012 is coming to a close. I'm looking forward to 2013, knowing it's going to be a crazy ride, because God is good all the time. He has gotten us through this year, making each one of us stronger, and I know he will take care of us through it all. Ryder and Brody are the best boys any mother could ask for. I thank God every day for both of them. I know they will both continue to surprise and amaze me. Adam has stuck by my side, even during my darkest days, and I hope we can take more time for ourselves this coming year. A few more date nights maybe. I'm hoping Brody gets his transplant in early 2013 and I'm hoping Ryder doesn't hurt himself too bad!
I feel the need to write out my new years resolutions too. Maybe this will help me stick with them?? So here they are in no particular order:
1. Be kind, especially to my incorrigible, yet adorable, 3 year old.
2. Spend more time with Adam. (we will celebrate our 5 year anniv. in June)
3. Use my CFA coupons (haha)
4. Drink more water, take the stairs, and eat breakfast.
5. Run ...{shutter}
...I'm sure I'll come up with more, as I always do.
So here's to a wonderful 2013!
...Peace out '12.
I realize it has been 6 months since my last post and I feel like such a failure! I promised myself if I was going to write a blog that I was going to keep at it and not get this far behind! Oh man...what have I done?! LOL. I could try and get everyone up to speed with where Brody's at but 6 months is a lot to write about. So, I'd like to take this time and opportunity to reflect back on the past year. Makes sense, right?
January started the year started off with a bang as we learned about Brody. I am thankful that I was able to grieve before the birth of my sweet baby, even though it made for a difficult pregnancy. And although I couldn't fully know what was to come at least I was prepared so it didn't come as a shock when I was left all alone, with empty arms, in a hospital room that was once filled with doctors and nurses immediately after giving birth.
February was filled with non-stress tests, bio physical profiles and ultrasounds. I learned to trust as God does not make mistakes. God created this perfect baby for our family. I admit, I did cry a few times feeling like I was robbed of a perfect pregnancy and a perfect baby. I had no idea that I was just defining the word "perfect" incorrectly.
In March we welcomed sweet Brody. Adam and I grew a lot during this time. Basically, March, April, and May were all about finding the delicate balance it took to spend time with Brody, with Ryder, and with each other. I have never so desperately wanted to just have my family together for one day. One hour. One minute. Brody needed a lot of machines and medications just to keep him alive and if Adam and I weren't at the hospital we were calling and speaking to his doctors and nurses.
I learned how to change a diaper with all sorts of wires and tubes in the way. I learned how to take his vitals, place a feeding tube, and give a shot. I knew how to read his monitors and which wires were safe to unplug to pick him up. Day after day I left him in the care of the hospital only to go home empty handed. It wasn't easy trying to explain to a 2 year old about his little brother, whom he had never met but somehow I believe Ryder got it. He has a love for Brody that is beyond words. They have such a special bond and it's so amazing to witness.
Brody surprised everybody and came off dialysis after just 6 weeks! He eventually got weaned off the oxygen and has been breathing completely unassisted since the end of April. Both of which I am so beyond thankful for. Every day with out dialysis is a miracle and I continue to ask God to bless us and keep him off of dialysis until he can get a transplant. His doctor even talked to us several times about a trach and that he may never breath on his own. I love how my little boy has proven doctors wrong time and time again. :)
Our family was finally together for the first time at the end of May. I will never forget the look on Ryder's face when he came running down the sidewalk to see his little brother.
Brody was hospitalized in June and twice in July for infections. He got rid of his feeding tube mid-July and we had the Brody Johnson Benefit to raise money for his medical expenses. I cannot say thank you enough to everybody who had a hand in putting together that benefit. It was amazing. Thank you to those that came and supported us. Thank you to those that could not be there but prayed for us. Thank you. I had to take a lot of unpaid time from work and God has provided for our every need.
Brody had his 7th surgery in August and a nephrostomy bag was put in place. It is cumbersome to say the least but we are learning to live with it.
September and October were low key. Just a LOT of doctor appointments and blood testing. Through it all I still have the happiest baby in the whole world. The ultimate challenge of these two months were simply trying to get Brody to gain weight. We took a weekend trip to Nashville for a wedding and of course had to make a trip to the ER there too. But this time it was for Ryder. Not 30 minutes after arriving at the hotel he knocked out his front tooth! He might be the most accident prone child ever. The highlight of the year however (second to Brody being born, of course) is that Ryder is finally diaper free! Hallelujah!! :)
I started back to work mid-November which comes as a huge blessing. It means Brody is well enough that I can return to work. Brody also started physical therapy through Babies Can't Wait. He was evaluated and found to have "mild delays" and I can really tell the therapy is helping. I can't say enough good things about Babies Can't Wait.
Brody had his latest surgery at the beginning of December and has continued to pack on the pounds. He is in the less than 2 percentile for both height and weight but his doctor is happy with his own growth curve. He is currently around the 14 pound mark and can sit up on his own pretty well. He's finally starting to bear weight on his feet too. He has a contagious, heart-melting smile and loves the sound of his own voice. Oh, and Ryder chipped his other front tooth. ;)
Eight surgeries, 2 blood transfusions, hundreds of blood tests, ultrasounds, x-rays and doctor appointments, I'm happy 2012 is coming to a close. I'm looking forward to 2013, knowing it's going to be a crazy ride, because God is good all the time. He has gotten us through this year, making each one of us stronger, and I know he will take care of us through it all. Ryder and Brody are the best boys any mother could ask for. I thank God every day for both of them. I know they will both continue to surprise and amaze me. Adam has stuck by my side, even during my darkest days, and I hope we can take more time for ourselves this coming year. A few more date nights maybe. I'm hoping Brody gets his transplant in early 2013 and I'm hoping Ryder doesn't hurt himself too bad!
I feel the need to write out my new years resolutions too. Maybe this will help me stick with them?? So here they are in no particular order:
1. Be kind, especially to my incorrigible, yet adorable, 3 year old.
2. Spend more time with Adam. (we will celebrate our 5 year anniv. in June)
3. Use my CFA coupons (haha)
4. Drink more water, take the stairs, and eat breakfast.
5. Run ...{shutter}
...I'm sure I'll come up with more, as I always do.
So here's to a wonderful 2013!
...Peace out '12.
Wednesday, June 20, 2012
The Road Home
Ever had writer's block even when you've known exactly what you want to write about? Or feel like you're so behind it would just take forever to catch up so you just keep procrastinating over and over? Yeah, that's me. There are so many things I want to say but I just don't know how to write it all without sounding like a manic depressive chick with ADD. ...But I'll try...I only have a whole month of updates to write about.
The word "exhausted" doesn't quite seem adequate to describe how I've felt for the past month. The NICU grind seems easy compared to our new normal at home. I just want to sleep. (HA! I'm realizing sleep is a thing of the past.) So that's another reason why I haven't updated this blog in forever. I'm just too busy and too dang tired! We have a dr. appointment almost ever day and sometimes even multiple appointments in one day. Brody has several meds that are to be taken throughout the day and then there's the whole feeding regimen. Pump, fortify, decant, add meds, feed. All day long. :) But anyways, here it goes...
The road to home was drawn out and postponed several times. On May 1st we got our first approximate discharge date of May 7th. Then on May 4th we found out about the Pyloric Stenosis...surgery was postponed twice which then put our discharge date out to May 21st. And then the day before discharge he got his first infection. That pushed the date even further back until May 27th. Then, on May 26th, as Adam, Ryder and I were enjoying the morning playing outside, Dr. Elmore called and said Brody's pyelostomy was getting too tight and he needed to revise it. He gave me the choice: either do surgery now and stay in the NICU a few more days or go ahead and go home on the 27th and then come back in a week for surgery. I didn't think twice...so I hung up, we jumped in the car, and Brody had surgery that afternoon. We expected to stay 3 or 4 more days but on the morning of the 27th, Adam called and spoke to his nurse. When he hung up he said the sweetest words, and I will never forget the way he sounded when he said, "Brody's coming home!" ...Fear and excitement and nervousness and relief and every emotion imaginable flooded my body. THANK YOU GOD! After exactly 11 weeks, we finally had our entire family home under one roof.
During that last month in the NICU every time someone asked me "Do you know when Brody's coming home?" I just had to say "Not yet"...I didn't even want to mention that it was possible he'd be coming home on a certain day or that we were even discussing it. So I apologize to everyone for not sharing that info before now.
But anyways, we're home. Well, kinda. Ok, not really. He was in the NICU for 11 weeks, home for almost 3 weeks and now Brody's back in the hospital and had his 6th surgery today. So here's how that happened...On Tuesday, June 12th, Brody had an appointment with his urologist, Dr. Elmore. He noticed that the stoma of his pyelostomy was getting tight again so he put in a catheter and scheduled surgery for the following Wednesday, June 20th. He told me that the catheter would probably come out in a few days so if it does, just make sure the pyelostomy is still draining. The catheter came out just after 2 days. That Friday night Brody hardly slept and was very irritable. He also had a low grade fever and by Saturday had lost his appetite (what little he had). We drove down to the lake Saturday morning, which I was REALLY REALLY excited about...finally, a family day...a day we could all be together with NO DOCTOR APPOINTMENTS! ...and maybe I could get rid of this vampire glow. Anyways, we got to the lake, I changed his diaper and it was completely dry. So we turned around and off to the ER we went. We spent about 8.5 hrs in the ER...a urologist put another catheter in his pyelostomy to drain the urine (It took several attempts to get a catheter in) and they did a renal ultrasound to look at the kidneys. (Gah, I hate freakin ultrasounds. Too many bad memories.) His CRP was 15 (suppose to be less than one) which indicated an infection. He had a spinal tap done to rule out meningitis. And he had a EKG done because his potassium was 7.2 ("dangerously high" which can effect his heart). He was admitted into the PICU around midnight and started a round of antibiotics. We were told his surgery would most likely be postponed because the anesthesiologist wouldn't mess with him if he has an infection. Monday night he was transferred from the PICU to the general floor. And surprisingly, everyone agreed to go forward with surgery on wednesday. So here we are. Post surgery. Dr. Elmore opened up his pyelostomy, looked at his bladder and kidney with a scope, and guess what...turns out he DOES have a ureter!! It's just not hooked up right and part of it is not an open tube but more of a cord. So now the question is when and how do we reconstruct the urinary tract. Before transplant? After transplant? ...Brody's team of doctors are going to all meet up and discuss future plans this Friday. I'm anxiously awaiting to hear what they come up with.
...It's now Thursday June 21st...and today's big event is a blood transfusion (he's severally anemic and they just keep drawing and testing his blood...a lot). He's getting his last dose of IV antibiotics before being switched to oral antibiotics so hopefully, HOPEFULLY Brody can come back home tomorrow (or at the latest, Saturday).
The word "exhausted" doesn't quite seem adequate to describe how I've felt for the past month. The NICU grind seems easy compared to our new normal at home. I just want to sleep. (HA! I'm realizing sleep is a thing of the past.) So that's another reason why I haven't updated this blog in forever. I'm just too busy and too dang tired! We have a dr. appointment almost ever day and sometimes even multiple appointments in one day. Brody has several meds that are to be taken throughout the day and then there's the whole feeding regimen. Pump, fortify, decant, add meds, feed. All day long. :) But anyways, here it goes...
The road to home was drawn out and postponed several times. On May 1st we got our first approximate discharge date of May 7th. Then on May 4th we found out about the Pyloric Stenosis...surgery was postponed twice which then put our discharge date out to May 21st. And then the day before discharge he got his first infection. That pushed the date even further back until May 27th. Then, on May 26th, as Adam, Ryder and I were enjoying the morning playing outside, Dr. Elmore called and said Brody's pyelostomy was getting too tight and he needed to revise it. He gave me the choice: either do surgery now and stay in the NICU a few more days or go ahead and go home on the 27th and then come back in a week for surgery. I didn't think twice...so I hung up, we jumped in the car, and Brody had surgery that afternoon. We expected to stay 3 or 4 more days but on the morning of the 27th, Adam called and spoke to his nurse. When he hung up he said the sweetest words, and I will never forget the way he sounded when he said, "Brody's coming home!" ...Fear and excitement and nervousness and relief and every emotion imaginable flooded my body. THANK YOU GOD! After exactly 11 weeks, we finally had our entire family home under one roof.
During that last month in the NICU every time someone asked me "Do you know when Brody's coming home?" I just had to say "Not yet"...I didn't even want to mention that it was possible he'd be coming home on a certain day or that we were even discussing it. So I apologize to everyone for not sharing that info before now.
But anyways, we're home. Well, kinda. Ok, not really. He was in the NICU for 11 weeks, home for almost 3 weeks and now Brody's back in the hospital and had his 6th surgery today. So here's how that happened...On Tuesday, June 12th, Brody had an appointment with his urologist, Dr. Elmore. He noticed that the stoma of his pyelostomy was getting tight again so he put in a catheter and scheduled surgery for the following Wednesday, June 20th. He told me that the catheter would probably come out in a few days so if it does, just make sure the pyelostomy is still draining. The catheter came out just after 2 days. That Friday night Brody hardly slept and was very irritable. He also had a low grade fever and by Saturday had lost his appetite (what little he had). We drove down to the lake Saturday morning, which I was REALLY REALLY excited about...finally, a family day...a day we could all be together with NO DOCTOR APPOINTMENTS! ...and maybe I could get rid of this vampire glow. Anyways, we got to the lake, I changed his diaper and it was completely dry. So we turned around and off to the ER we went. We spent about 8.5 hrs in the ER...a urologist put another catheter in his pyelostomy to drain the urine (It took several attempts to get a catheter in) and they did a renal ultrasound to look at the kidneys. (Gah, I hate freakin ultrasounds. Too many bad memories.) His CRP was 15 (suppose to be less than one) which indicated an infection. He had a spinal tap done to rule out meningitis. And he had a EKG done because his potassium was 7.2 ("dangerously high" which can effect his heart). He was admitted into the PICU around midnight and started a round of antibiotics. We were told his surgery would most likely be postponed because the anesthesiologist wouldn't mess with him if he has an infection. Monday night he was transferred from the PICU to the general floor. And surprisingly, everyone agreed to go forward with surgery on wednesday. So here we are. Post surgery. Dr. Elmore opened up his pyelostomy, looked at his bladder and kidney with a scope, and guess what...turns out he DOES have a ureter!! It's just not hooked up right and part of it is not an open tube but more of a cord. So now the question is when and how do we reconstruct the urinary tract. Before transplant? After transplant? ...Brody's team of doctors are going to all meet up and discuss future plans this Friday. I'm anxiously awaiting to hear what they come up with.
...It's now Thursday June 21st...and today's big event is a blood transfusion (he's severally anemic and they just keep drawing and testing his blood...a lot). He's getting his last dose of IV antibiotics before being switched to oral antibiotics so hopefully, HOPEFULLY Brody can come back home tomorrow (or at the latest, Saturday).
Tuesday, May 8, 2012
Awaiting Surgery #4
Brody is becoming quite the snuggle bunny. Both Saturday and Sunday when we walked into the NICU, Brody was hanging out at the nurses' station getting loved on by some awesome nurses. I can't even begin to describe the feeling I had when I saw that. The best word that my delirious brain can come up with is "joy". It was just a few weeks ago that he was on a ventilator and receiving dialysis for several hours a day with multiple tubes hanging off his little body...and wasn't able to be held. Maybe he's making up for lost time ;) He loves being held and looking around the room. I went and bought a Moby wrap so when when he comes home I can hold him all the time! lol. Seriously though, I am very excited about the Moby. I wanted one with Ryder but just never got one. Brody has also really started to take his pacifier pretty well and it is so cute to watch him drift off to sleep with it.
Brody still hasn't taken his milk from a bottle except for just a few times and it was only a few milliliters each time. On Thursday he had an upper GI test just kind of routinely to see if anything was going on. I didn't get to go with Brody to get the test done because I was learning how to use the home apnea monitor and feeding pump that was delivered to the hospital for us to take home but I'm kind of glad I didn't get to see it. The nurse said Brody did very well with it but when Ryder was about a year old he had an upper GI done and it was traumatizing to say the least. Ryder wouldn't drink the barium from a sippy cup so they literally squirted it down his throat with a bulb syringe and then he vomited for several hours afterwards and was very lethargic. Not pretty. Anyways, Brody's upper GI showed that he might have Pyloric Stenosis and then Friday they did an ultrasound that confirm it. Pyloric Stenosis is where the Pylorus (muscle in the stomach) is too large and doesn't allow food in the stomach to pass into the intestines. This explains why he's had such mucussy spit ups even though he's doesn't have food in his stomach, and when he does, he vomits. The nurse practitioner said she was going to contact the surgeon and schedule surgery. Later that day, someone from surgery (a resident, I think) came to talk to me and said they were going to hold off on surgery because it could just be irritation from the TP tube in which case it would resolve on it's own. This kind of frustrated me. No, I don't WANT Brody to have to have surgery again but to me it sounded like the right thing and this way we'd go ahead and fix the problem and maybe we could really get him on a bottle. The doctors and nurses talked and decided to wait a few days and do another ultrasound to see if it's getting better or worse. The follow up ultrasound from this morning (5/8) showed the pylorus was significantly larger than on Thursday and confirmed that it's definitely pyloric stenosis. Surgery is scheduled for tomorrow (5/9)afternoon. The surgeon will go in and cut the muscle fibers allowing it to open up. The surgeon is going to try to keep the TP tube in place but if it comes out Brody will have to go about a week without feeds (just IV nutrition) to let it heal. I'm praying that doesn't happen. We just started to get on a nice upward trend with his weight and I would hate to see those numbers slide backwards.
The nephrologist has been so pleased with his lab work and thinks that he will actually be able to go several more weeks without dialysis, so she decided we need to take out the dialysis catheter! They will remove it while he is in surgery tomorrow. Dr. Jernigan said it is too risky to keep the catheter in and not use it. This is amazing and scary all at the same time. I'm truly amazed that he has gone 2 whole weeks without needing dialysis and probably going to go several more weeks without it. I'm scared that I'm going to wake up one day and BAM! back to 16 hours of dialysis with a puffy little baby that's having difficulty breathing. I'm scared they're going to take out the catheter and just a few days later decide to put it back in. I'm trying not to think about any of that though... Just thankful his kidney is working as well as it is...Brody truly is a little miracle.
...There is so much more I want to write about...I've been sitting here staring at my computer for over an hour trying to figure out what else to write. But I'm tired. I almost fell asleep driving in bumper-to-bumper traffic on I-285 during a thunderstorm today. (shh...don't tell my mom!) So I think I'll save those thoughts for another post and go to bed now. But first, here's the weekly run down:
Monday (4/30):
-Weight: 2.95kg
-No PD. BUN still ok and Creatinine starting to stabilize...it is the same as yesterday.
-Potassium is high. Dr. Warshaw ordered K to be checked venously and not by heel pricks anymore (for more accuracy). Kayexalate ordered to lower potassium. At 4pm they rechecked K and it was fine. No need for Kayexalate yet.
-MCT oil increased to 3ml.
-Took 12ml of milk by bottle and then spit up almost immediately afterwards.
Tuesday (5/1):
-Weight: 2.97kg
-Labs good. BUN & Creatinine up slightly.
-Withholding Beneprotein b/c it has K in it.
-Took 6ml of milk from bottle.
-Spoke to discharging caseworker about starting to get things together to go home!
Wednesday (5/2):
-Weight: 3.005kg.
-Sodium low, Potassium high. EBM & formula to be decanted with Kayexalate. Creatinine the same, BUN good.
-GI doctor came on board to try to figure out what's going on with feeding.
-CVL Picc line removed (permanent cuff under skin).
-Blood is acidic. Given Bicitra as a buffer.
Thursday (5/3):
-Weight: 3.06kg
-Ordered hearing screen.
-Upper GI test at 1:30pm
-Potassium good (went from 6.1 to 4.8) after decanting milk.
-Creatinine the same, BUN up slightly. Still anemic. Dr. Warshaw increased EPO dose.
-Learned how to use home apnea monitor and food pump.
Friday (5/4):
-Weight: 3.05kg
-Upper GI test showed Brody might have Pyloric Stenosis. Confirmed by Ultrasound. Spoke to surgeon, will not do surgery right now. Re-check on Tuesday.
-Gave Brody a bath for the first time (our first time, not his).
-Learned how to place a NG tube
-Watched PURPLE Crying video
Saturday (5/5):
-Weight: 3.13kg
-Phosphorus is high. Adding Calcium Carbonate to milk to bind to phosphorus and keep him from absorbing it.
-Potassium normal at 4.3 (still decanting milk)
-Learned how to fortify and decant milk.
Sunday (5/6):
-8 weeks old today!
-Weight: 3.21kg (7 lbs, 2 oz)
-No labs today (to be ordered every other day from now on instead of every day)
Monday (5/7):
-Weight: 3.27kg
-Potassium normal. Phosphorus normal. Sodium low.
-Creatinine same as Saturday and BUN down a little (great news!)
-I gave Brody his EPO shot, canola oil (switched to this from MCT oil), and clipped his nails for the first time.
-Dr. Jernigan is really impressed with his labs and wants to take out PD catheter.
-Klonopin weaned to just once/day.
-Fussy at night.
Tuesday (5/8):
-Weight: 3.3kg
-No labs today
-Ultrasound showed Pylorus is significantly larger than last Thursday Scheduled surgery for tomorrow. Surgeon will also remove PD catheter.
-Off feeds and back on IV nutrition.
-Increased Klonopin back to twice/day but very small dose.
-Medications for home were delivered to NICU and checked by pharmacy.
-Spoke to nutritionist about going home.
 |
| 5-6-12 cuddles with Mommy |
Brody still hasn't taken his milk from a bottle except for just a few times and it was only a few milliliters each time. On Thursday he had an upper GI test just kind of routinely to see if anything was going on. I didn't get to go with Brody to get the test done because I was learning how to use the home apnea monitor and feeding pump that was delivered to the hospital for us to take home but I'm kind of glad I didn't get to see it. The nurse said Brody did very well with it but when Ryder was about a year old he had an upper GI done and it was traumatizing to say the least. Ryder wouldn't drink the barium from a sippy cup so they literally squirted it down his throat with a bulb syringe and then he vomited for several hours afterwards and was very lethargic. Not pretty. Anyways, Brody's upper GI showed that he might have Pyloric Stenosis and then Friday they did an ultrasound that confirm it. Pyloric Stenosis is where the Pylorus (muscle in the stomach) is too large and doesn't allow food in the stomach to pass into the intestines. This explains why he's had such mucussy spit ups even though he's doesn't have food in his stomach, and when he does, he vomits. The nurse practitioner said she was going to contact the surgeon and schedule surgery. Later that day, someone from surgery (a resident, I think) came to talk to me and said they were going to hold off on surgery because it could just be irritation from the TP tube in which case it would resolve on it's own. This kind of frustrated me. No, I don't WANT Brody to have to have surgery again but to me it sounded like the right thing and this way we'd go ahead and fix the problem and maybe we could really get him on a bottle. The doctors and nurses talked and decided to wait a few days and do another ultrasound to see if it's getting better or worse. The follow up ultrasound from this morning (5/8) showed the pylorus was significantly larger than on Thursday and confirmed that it's definitely pyloric stenosis. Surgery is scheduled for tomorrow (5/9)afternoon. The surgeon will go in and cut the muscle fibers allowing it to open up. The surgeon is going to try to keep the TP tube in place but if it comes out Brody will have to go about a week without feeds (just IV nutrition) to let it heal. I'm praying that doesn't happen. We just started to get on a nice upward trend with his weight and I would hate to see those numbers slide backwards.
 |
| 5-8-12 |
The nephrologist has been so pleased with his lab work and thinks that he will actually be able to go several more weeks without dialysis, so she decided we need to take out the dialysis catheter! They will remove it while he is in surgery tomorrow. Dr. Jernigan said it is too risky to keep the catheter in and not use it. This is amazing and scary all at the same time. I'm truly amazed that he has gone 2 whole weeks without needing dialysis and probably going to go several more weeks without it. I'm scared that I'm going to wake up one day and BAM! back to 16 hours of dialysis with a puffy little baby that's having difficulty breathing. I'm scared they're going to take out the catheter and just a few days later decide to put it back in. I'm trying not to think about any of that though... Just thankful his kidney is working as well as it is...Brody truly is a little miracle.
...There is so much more I want to write about...I've been sitting here staring at my computer for over an hour trying to figure out what else to write. But I'm tired. I almost fell asleep driving in bumper-to-bumper traffic on I-285 during a thunderstorm today. (shh...don't tell my mom!) So I think I'll save those thoughts for another post and go to bed now. But first, here's the weekly run down:
Monday (4/30):
-Weight: 2.95kg
-No PD. BUN still ok and Creatinine starting to stabilize...it is the same as yesterday.
-Potassium is high. Dr. Warshaw ordered K to be checked venously and not by heel pricks anymore (for more accuracy). Kayexalate ordered to lower potassium. At 4pm they rechecked K and it was fine. No need for Kayexalate yet.
-MCT oil increased to 3ml.
-Took 12ml of milk by bottle and then spit up almost immediately afterwards.
Tuesday (5/1):
-Weight: 2.97kg
-Labs good. BUN & Creatinine up slightly.
-Withholding Beneprotein b/c it has K in it.
-Took 6ml of milk from bottle.
-Spoke to discharging caseworker about starting to get things together to go home!
Wednesday (5/2):
-Weight: 3.005kg.
-Sodium low, Potassium high. EBM & formula to be decanted with Kayexalate. Creatinine the same, BUN good.
-GI doctor came on board to try to figure out what's going on with feeding.
-CVL Picc line removed (permanent cuff under skin).
-Blood is acidic. Given Bicitra as a buffer.
Thursday (5/3):
-Weight: 3.06kg
-Ordered hearing screen.
-Upper GI test at 1:30pm
-Potassium good (went from 6.1 to 4.8) after decanting milk.
-Creatinine the same, BUN up slightly. Still anemic. Dr. Warshaw increased EPO dose.
-Learned how to use home apnea monitor and food pump.
Friday (5/4):
-Weight: 3.05kg
-Upper GI test showed Brody might have Pyloric Stenosis. Confirmed by Ultrasound. Spoke to surgeon, will not do surgery right now. Re-check on Tuesday.
-Gave Brody a bath for the first time (our first time, not his).
-Learned how to place a NG tube
-Watched PURPLE Crying video
Saturday (5/5):
-Weight: 3.13kg
-Phosphorus is high. Adding Calcium Carbonate to milk to bind to phosphorus and keep him from absorbing it.
-Potassium normal at 4.3 (still decanting milk)
-Learned how to fortify and decant milk.
Sunday (5/6):
-8 weeks old today!
-Weight: 3.21kg (7 lbs, 2 oz)
-No labs today (to be ordered every other day from now on instead of every day)
Monday (5/7):
-Weight: 3.27kg
-Potassium normal. Phosphorus normal. Sodium low.
-Creatinine same as Saturday and BUN down a little (great news!)
-I gave Brody his EPO shot, canola oil (switched to this from MCT oil), and clipped his nails for the first time.
-Dr. Jernigan is really impressed with his labs and wants to take out PD catheter.
-Klonopin weaned to just once/day.
-Fussy at night.
Tuesday (5/8):
-Weight: 3.3kg
-No labs today
-Ultrasound showed Pylorus is significantly larger than last Thursday Scheduled surgery for tomorrow. Surgeon will also remove PD catheter.
-Off feeds and back on IV nutrition.
-Increased Klonopin back to twice/day but very small dose.
-Medications for home were delivered to NICU and checked by pharmacy.
-Spoke to nutritionist about going home.
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