I'm going to try to make this post quick!
Levi was 9 months on Tuesday!!!! I can't believe it! I'm totally that mom that's thinking "It seems like yesterday...". I'll get the 9 month photo up ASAP. Stats will also go up on Monday, that's our follow up appointment for the feeding tube.
I had no idea how bad kidney diseases were in our country before Levi had them. I don't know if that's naive of me, or if it's just something that's hard to diagnose, therefore hard to publicize? March is Kidney Disease Awareness Month, and I'm thinking of something BIG! I'd like to get other kidney mama's involved. I would also like to start devoting more posts to kidney disease awareness.
I keep putting off starting to run again. I tell myself things like; no time, it's too hot, I don't have a training buddy, God didn't create me to run, why should I run? Well, this week God whacked me in the face with answers to my excuses! The weather has gotten beautiful! We're up every morning kind of early, so we'd have time to jog outside, also, I have a FREE gym membership. Duh. As for a training buddy, I have Levi. Jogging with him in the stroller is good for him too. He loves it! So, I'm going to start Couch to 5K again. Also, God may not have built me like a runner, but He gave me a son whom may require one of my kidneys one day, and I need to be healthy enough to give it to him.
Adventures of a Mama in Oklahoma.
Showing posts with label Renal System. Show all posts
Showing posts with label Renal System. Show all posts
Saturday, August 18, 2012
Wednesday, May 16, 2012
6 months and hospital visit
Levi is 6 months old! I can't believe it. It doesn't seem like half of his first year is done already. His 6 month stats are Height: 23 inches Weight: 11lbs 5oz. He has now more than doubled his birth weight (woohoo!). He's into 3 month and some 6 month clothing. Levi seems to be tolerating cloth diapers better than disposables, and he is getting CURIOUS about everything! We are still so in love with him!
On the flip side of things, we're also back in the hospital. Monday night we ended up in the ER for 6 hours because he had a high fever. With Levi, it's never okay for him to have a fever, it's the first sign of a kidney infection. I really felt like he needed to be admitted, not just sitting in the ER. I figured he was dehydrated and hello, he's a KIDNEY FAILURE PATIENT! In a small toen like ours, unless you have a cancer patient or a gunshot victim, a few hours is the difference between kidney failure and kidney function for him. We finally saw a doctor and got the results of the UA back to find out that everything was clear, just a virus. Tuesday we were supposed to follow up with his pediatrician. She agreed that it was just a virus, but to keep a close eye on him. She also ran more blood work and urine samples. Everything still looked clear. I still felt like he was dehydrated and we need to admit him to get him hydrated, but we were sent home since he looked okay on paper. Last night, his fever hit 104 and he started having diarreha and eating less. Then, this morning, the fever was at 102, but he added vomiting to the list of symptoms. After my 3rd shirt for the day was soaked in puke, I called the doctor's office. Our regular doc was out, but we could see one of the other pediatricians. We went into the appointment knowing that we were probably headed to the hospital. We were right. Levi was admitted this afternoon for dehydration, fever, and possible bloodborne bacteria. Gross. Good thing is, we get to stay in town at the hospital here! Yay! Also, they got him started on some iv fluids, and now he's keeping pedialyte down! Tomorrow we're hopefully back on formula. Small victories are amazing!
Please keep squirt in your prayers and remember to LISTEN TO YOUR GUT FEELINGS!
On the flip side of things, we're also back in the hospital. Monday night we ended up in the ER for 6 hours because he had a high fever. With Levi, it's never okay for him to have a fever, it's the first sign of a kidney infection. I really felt like he needed to be admitted, not just sitting in the ER. I figured he was dehydrated and hello, he's a KIDNEY FAILURE PATIENT! In a small toen like ours, unless you have a cancer patient or a gunshot victim, a few hours is the difference between kidney failure and kidney function for him. We finally saw a doctor and got the results of the UA back to find out that everything was clear, just a virus. Tuesday we were supposed to follow up with his pediatrician. She agreed that it was just a virus, but to keep a close eye on him. She also ran more blood work and urine samples. Everything still looked clear. I still felt like he was dehydrated and we need to admit him to get him hydrated, but we were sent home since he looked okay on paper. Last night, his fever hit 104 and he started having diarreha and eating less. Then, this morning, the fever was at 102, but he added vomiting to the list of symptoms. After my 3rd shirt for the day was soaked in puke, I called the doctor's office. Our regular doc was out, but we could see one of the other pediatricians. We went into the appointment knowing that we were probably headed to the hospital. We were right. Levi was admitted this afternoon for dehydration, fever, and possible bloodborne bacteria. Gross. Good thing is, we get to stay in town at the hospital here! Yay! Also, they got him started on some iv fluids, and now he's keeping pedialyte down! Tomorrow we're hopefully back on formula. Small victories are amazing!
Please keep squirt in your prayers and remember to LISTEN TO YOUR GUT FEELINGS!
Tuesday, March 20, 2012
A three in one post...
So today I'm blogging about 3 different events at once, please bear with me. I'll try to make this short and sweet.
1) Happy Anniversary!
We've been married 2 years today! We share this date with John's brother and sister-in-law who are celebrating 13 years! Congrats all around!
2) 4 Months!
I cannot believe that Little Levi is 4 months old already! The time has flown by! He is a ham and lovin' it! He's started to eat foods, doctor permitting, and weighs in at just over 10 lbs.
3) Kidney Update
Not as good as we had hoped. Sounds like dialysis is coming sooner than we'd thought. Please keep him in your thoughts and prayers, if he can just manage to get a little bit bigger, that would help a ton!
I'll try to get a more detailed update in here soon, when I have some time.
1) Happy Anniversary!
We've been married 2 years today! We share this date with John's brother and sister-in-law who are celebrating 13 years! Congrats all around!
2) 4 Months!
I cannot believe that Little Levi is 4 months old already! The time has flown by! He is a ham and lovin' it! He's started to eat foods, doctor permitting, and weighs in at just over 10 lbs.
3) Kidney Update
Not as good as we had hoped. Sounds like dialysis is coming sooner than we'd thought. Please keep him in your thoughts and prayers, if he can just manage to get a little bit bigger, that would help a ton!
I'll try to get a more detailed update in here soon, when I have some time.
Tuesday, January 10, 2012
Meet the Nephrologist
That was our plan for yesterday. We had our first appointment with Levi's permanent nephrologist. She was wonderful. She seemed to have a real interest in Levi. Yesterday was mostly a "meet and greet" appointment. Dr. Stuart was getting familiar with Levi in the flesh, learning about his habits and just giving him a brief physical. He did great. They also weighed him and had to take blood. We were very excited to find out that Levi now weighs 7lbs 11oz. Unlike our doctor at home, this doctor weighs him with his clothes on, so his actual weight could be a little bit lower than what we got yesterday. Dr. Stuart also cleared him to go to daycare, which will be great, so I can work more!
Here are some pictures of Levi from yesterday...
I can't believe how big he's gotten! He changes and amazes me each day!
On another note, yesterday one of our cats died. John's cat, Stubby, had gotten really bad the past few weeks. Here's a picture of him from Sunday morning.
It was time for him to go. He couldn't walk very well, was blind in both eyes, and was using the bathroom all over the house (yuck!). I think that we're going to stick with the two animals that we have for now. We don't want to get anymore animals until after we are completely finished with the house.
Here are some pictures of Levi from yesterday...
I can't believe how big he's gotten! He changes and amazes me each day!
On another note, yesterday one of our cats died. John's cat, Stubby, had gotten really bad the past few weeks. Here's a picture of him from Sunday morning.
Tuesday, December 6, 2011
But once they actually say it...
We've known in the back of our minds that at some point Levi will have to have a new kidney. How far off was always the question. A big part of me thought that maybe once he got here, the damage to his kidney would be less than anticipated, and we could wait a good 15-20 years before we had to look at transplant. Today the APRN at the hospital actually said the words "kidney transplant" out loud. Well that changes everything. Now it's a reality. We're still looking at a couple of years down the road, as his body will have to be big enough for an adult sized kidney. We will probably have months, or years of dialysis before transplant. I realize that kidney transplants are one of the easiest, most routine things to do, but forgive me for not being excited about it.
I hate the fact that my baby is sick. I hate that he'll never get to play football or baseball. I hate that he'll be on medicine for the rest of his life. I hate the fact that all of my organs work just fine, and I've used and abused most of them, and my baby, who should be perfect, was born with his organs fighting against each other. I hate that I can protect him from so much, except for his own body. I hate that I feel like a bad mother for this.
I really wish that we were at home, decorating the Christmas tree, listening to Christmas music, going to the mall to shop and walk, getting ready to head back to work. I wish that our sense of normality and routine did not involve a hospital. I wish that my friends were the ones that we were spending time with, the ones that were getting to know him, instead of a team of doctors and nurses.
I'm thankful that we have all of this. That we're in a place that can give him this care. I'm glad that there's something that they can do, even if it's just to make him more comfortable. I know that God is protecting Levi and watching over him, and us, and I'm grateful for that.
I hate the fact that my baby is sick. I hate that he'll never get to play football or baseball. I hate that he'll be on medicine for the rest of his life. I hate the fact that all of my organs work just fine, and I've used and abused most of them, and my baby, who should be perfect, was born with his organs fighting against each other. I hate that I can protect him from so much, except for his own body. I hate that I feel like a bad mother for this.
I really wish that we were at home, decorating the Christmas tree, listening to Christmas music, going to the mall to shop and walk, getting ready to head back to work. I wish that our sense of normality and routine did not involve a hospital. I wish that my friends were the ones that we were spending time with, the ones that were getting to know him, instead of a team of doctors and nurses.
I'm thankful that we have all of this. That we're in a place that can give him this care. I'm glad that there's something that they can do, even if it's just to make him more comfortable. I know that God is protecting Levi and watching over him, and us, and I'm grateful for that.
Saturday, December 3, 2011
5 pounds!
I can't believe it! Our tiny boy broke the 5 pound mark today! Tonight he weighed in at 5lbs 1oz. Considering when we got here on Thursday night he was 4lbs 10oz, I'm very excited!
On a negative note, we are back in the NICU. Thursday we went in for a routine pediatricians appointment which for Levi, always involves blood work. His blood work did not look good. The electrolytes were way out of wack. For a kid with one kidney and chronic renal failure, this signals to the doctor that the kidney is failing. Off to KC we go. Once we got here everything happened so quickly. They started running labs again and scheduling ultrasounds and getting him all checked out again. Come to find out, he has a uti. This is not good because that means that the antibiotic that he was on for his reflux was not doing the job. Once we got the labs back, we found out that the infection was actually in his bloodstream as well. This infection is similar to an E. coli bacteria. It can be common in kids with the reflux and hydronephrosis. Tomorrow they are going to do a spinal tap to make sure that the infection has not spread to his spinal column or his brain. If it has, the course of action is still the same, it just extends the process 11 days. His little body has done such a great job of fighting the infection. The doctors all kept asking us what signs of infection he was showing and the truth is- NONE! His body was fighting so hard against the infection, that it kept it at bay for days. It only truly showed itself once he got here and they pulled him off of his routine antibiotic and started letting new medicines and IV's do the work for him. Turns out, this infection is what was throwing his electrolyte levels off, and what was causing him to not gain any weight for a week. They have also put him on some mineral supplements to try to get his electrolyte levels back on track. So far, they need to work harder, but we're making steps in the right direction. The procedure on discharge for him is that he has to finish all of the antibiotics, get his electrolyte levels back in order, go two days with no signs of infection in his blood or urine, then be under observation for a few more days, then we'll be discharged. This comes out to 10-25 days. We're hoping to be home by Christmas. There's so much to tell about what's going on and how we're adjusting to life with a chronically ill kid. It's frustrating and scary to know that every time he gets the smallest germy bug, it could land him right back here. This is all part of our journey with Levi. We knew when he was still in utero that there was a good chance this would be our life once he was here. I hoped and prayed that this would not be the case, but God chose differently. I'm amazed that he trusts me to handle Levi. That God has given us HIS strength to make it through these trying times with Levi. I am so blessed to have a God and husband that trust me and empower me to be a good Mom to him.
Listening to music with Daddy today
On a negative note, we are back in the NICU. Thursday we went in for a routine pediatricians appointment which for Levi, always involves blood work. His blood work did not look good. The electrolytes were way out of wack. For a kid with one kidney and chronic renal failure, this signals to the doctor that the kidney is failing. Off to KC we go. Once we got here everything happened so quickly. They started running labs again and scheduling ultrasounds and getting him all checked out again. Come to find out, he has a uti. This is not good because that means that the antibiotic that he was on for his reflux was not doing the job. Once we got the labs back, we found out that the infection was actually in his bloodstream as well. This infection is similar to an E. coli bacteria. It can be common in kids with the reflux and hydronephrosis. Tomorrow they are going to do a spinal tap to make sure that the infection has not spread to his spinal column or his brain. If it has, the course of action is still the same, it just extends the process 11 days. His little body has done such a great job of fighting the infection. The doctors all kept asking us what signs of infection he was showing and the truth is- NONE! His body was fighting so hard against the infection, that it kept it at bay for days. It only truly showed itself once he got here and they pulled him off of his routine antibiotic and started letting new medicines and IV's do the work for him. Turns out, this infection is what was throwing his electrolyte levels off, and what was causing him to not gain any weight for a week. They have also put him on some mineral supplements to try to get his electrolyte levels back on track. So far, they need to work harder, but we're making steps in the right direction. The procedure on discharge for him is that he has to finish all of the antibiotics, get his electrolyte levels back in order, go two days with no signs of infection in his blood or urine, then be under observation for a few more days, then we'll be discharged. This comes out to 10-25 days. We're hoping to be home by Christmas. There's so much to tell about what's going on and how we're adjusting to life with a chronically ill kid. It's frustrating and scary to know that every time he gets the smallest germy bug, it could land him right back here. This is all part of our journey with Levi. We knew when he was still in utero that there was a good chance this would be our life once he was here. I hoped and prayed that this would not be the case, but God chose differently. I'm amazed that he trusts me to handle Levi. That God has given us HIS strength to make it through these trying times with Levi. I am so blessed to have a God and husband that trust me and empower me to be a good Mom to him.
Wednesday, November 30, 2011
Tomorrow
Tomorrow is Levi's 2 week doctor's appointment, and I have to say, I am not looking forward to it. I HATE having a chronically ill kid. I hate the fact that tomorrow is the first appointment in a long line of appointments that will require ultrasounds, blood work, and painful things for my little man. I also hate that he grows slower than most other kids, so I'll get lectured about that, and that we're going to have to attempt to find a new formula for him because the one that we're on we can't get here in town. I know that God gave us Levi because He knows that we can handle everything, but right now I feel like a run-down mama, not an empowered one. I need prayers for tomorrow. I'll update his stats and such later this week. Also, I have a friend that was expecting her baby girl on Monday, and she's still not here. Pray that she comes on her own before the doctors have to serve her with an eviction notice (induction).
Saturday, November 26, 2011
Birthday Week
Today officially started Birthday Week! We have 3 birthdays in my family in a week's time span. My dad is TODAY 11/26, my sister, Mary is 11/27 and I'm Monday 11/28. People always ask us if we mind sharing our birthdays, and truthfully, we don't! It's always been fun to celebrate together and enjoy the time with each other. Last year was hard because it was the first time that we weren't with each other. None of us were together. I was in Kansas, Dad was in Texas, and Mary was in Afghanistan. This year will be nice to have Mary here with me. Another very important birthday this week is my best friend, Kelsey! I know we fit together because she's in birthday week, too. I am so thankful for all of these people that have touched my lives and that I'm lucky enough to celebrate Birthday Week with! God has blessed me with so much this year, I cannot wait to see what this coming year has in store for us!
Also happening on Monday, Levi turns two weeks old! I can't believe that he's already been here that long! We had our one week check up last week and he's already back up to 4lbs 12oz. This week we both have appointments, I have one to check on my incision and Levi has his two week check up. I'm fairly certain that my appointment will be smooth sailing, I'm feeling great and the incision is looking good! Unfortunately, I think that little Levi will rarely have "just a check up". This week we're looking at a renal ultrasound, a hip ultrasound, and getting blood drawn for labs. They're look at his renal system to see if things are still looking okay there, his hips to see if they're out of place, and labs to check his creatine levels again. Please, pray for his renal system above all other things. If it looks like there is increased back-up due to the reflux, or if something looks enlarged, I fear that they may send us back to the hospital. With breech babies, sometimes their hips are popped out of the socket because of their legs being crossed and curled up for so long. If they find this on the hip ultrasound they'll have to pop them back into place. The blood work is hopefully going to find that all of his levels look good and we can go about our merry way. God has been so good to us, and I know that at some point we will have to face "scary" days again, but I pray that those days are not this week!
Also happening on Monday, Levi turns two weeks old! I can't believe that he's already been here that long! We had our one week check up last week and he's already back up to 4lbs 12oz. This week we both have appointments, I have one to check on my incision and Levi has his two week check up. I'm fairly certain that my appointment will be smooth sailing, I'm feeling great and the incision is looking good! Unfortunately, I think that little Levi will rarely have "just a check up". This week we're looking at a renal ultrasound, a hip ultrasound, and getting blood drawn for labs. They're look at his renal system to see if things are still looking okay there, his hips to see if they're out of place, and labs to check his creatine levels again. Please, pray for his renal system above all other things. If it looks like there is increased back-up due to the reflux, or if something looks enlarged, I fear that they may send us back to the hospital. With breech babies, sometimes their hips are popped out of the socket because of their legs being crossed and curled up for so long. If they find this on the hip ultrasound they'll have to pop them back into place. The blood work is hopefully going to find that all of his levels look good and we can go about our merry way. God has been so good to us, and I know that at some point we will have to face "scary" days again, but I pray that those days are not this week!
Sunday, November 20, 2011
Levi is Here!
Levi Douglas was born on 11-14-2011 at 7:40am. He weighed in at 4 pounds 15 ounces. 
We've spent the week in Kansas City at Children's Mercy Hospital making sure that his renal system is working, and we are hoping to be released tomorrow. He has done great. Here are some pictures of him this week. I will post more on our "adventures" here and the results of everything soon. I have to say that through all of this, one thing is perfectly clear, God is great!
We've spent the week in Kansas City at Children's Mercy Hospital making sure that his renal system is working, and we are hoping to be released tomorrow. He has done great. Here are some pictures of him this week. I will post more on our "adventures" here and the results of everything soon. I have to say that through all of this, one thing is perfectly clear, God is great!
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