That first night in the hospital is kind of fuzzy. I sent Jeff home. His sleeping is fitful enough and I knew that there would be many interruptions. The peds unit at St John's is very new and very nice. If we were going to be stuck anywhere for an extended amount of time, this was the place to be. All of the furniture was soft and comfy, the nurses were so accommodating and sweet. They kept Cal doped up all night in an effort to keep his fever down but he still woke very early. I held him and we rocked and rocked until Jeff arrived around 9am. He seemed to be doing a little better so I left to go sleep at home for a few hours. While I was gone, the doctors ordered a renal ultrasound and discovered inflammation in both kidneys and a highly muscular bladder (our bladders are supposed to be round and smooth. Cal's looked like the shape of a Christmas tree, 'tis the season).
It was decided then that a permanent catheter needed to be inserted since the bladder and kidneys weren't draining properly. I could see the hesitation on several nurses faces over the next few days when they discovered that they were assigned to an infant patient with a catheter. Apparently, caths in babies are pretty uncommon. The catheter turned Cal into a happy kid though (AFTER it was inserted, of course). His bladder was so full and he finally had relief. He wanted to eat and play for the first time in 48 hours. His fever was still present and we learned why on Tuesday the 15th. His infection had spread so rapidly from his bladder to his kidneys, he became septic. This was a word that I was familiar with from all of my years of watching ER but I never really knew the seriousness of it. And to be perfectly honest, I sort of blocked it out despite the fact that Dr. Z had told me that if we would have waited to take him back to the doctor instead of going to the hospital, there would have been a tragic ending. The longer sepsis goes untreated, it essentially starts attacking the major organs and they will eventually shut down. Hours can literally mean the difference between life and death. I get a stomach ache every time I think about that.
By Wednesday, his fever had broken and we had somewhat of a plan of attack. The pediatric infectious disease doctor had visited with us and decided that Cal needed to be on IV antibiotics for three weeks AFTER his blood showed up clean. This was to ensure that the bacterium was completely eradicated from his blood. The IV in his hand would be too unsafe when we were finally released home so we would have a PICC line placed in his upper left arm, again, after the bacteria was no longer present in his blood.
At this point, we were waiting on the bacteria issue but we did have a diagnosis of his kidneys and bladder. Dr Z suspected that Cal was born with something called Posterior Urethral Valves (later confirmed), which basically causes urine to reflux back up into his bladder and kidneys. This is something that could have been detected when I was pregnant in my ultrasounds but unfortunately it wasn't. We were put in touch with an outstanding pediatric urologist at Children's Hospital, Dr. C, but were warned that we would be in the hospital until surgery could be performed and due to the holidays, we probably wouldn't get on the surgery schedule until after Christmas. No biggie. We just went out and bought an awesome fiber optic tree, brought his stocking to his room and counted down the days until Christmas! Those of you who read the last entry know that we lucked out and were put on the surgery schedule Christmas Eve!
On Monday, Dec 21st we learned that Cal's blood had been clean since the 17th, so off to surgery he went to get the PICC line placed. It was scary knowing that he had to go under but since babies are so wiggly, they have no other choice. He did wonderfully and finally had use of his left hand again. The doctors and nurses in the OR loved him because he apparently was smiling at them until he drifted off. Then on Wednesday, Dec 23rd we packed up our room at St John's and took an ambulance ride to Children's. It was kind of bittersweet to leave St John's because we had gotten to know several of the nurses really well. We had taken countless walks around the ward in his wagon (with the urine bag attached to our pockets), had so many visitors that his room looked like a toy store, and had his first visit from Santa. He took his first bites of food in that room and turned 6 months old on the 20th. Don't get me wrong - we wanted out of there. But we had also grown comfortable in our new routine.
Children's was another story. This hospital is known nationwide for its amazing pediatric care but it was like night and day compared to St Johns. It was chaotic and in your face. Far too much going on for our taste. Thank goodness that he only had one night there. Bright and early on Christmas Eve morning, we got a call that we had been bumped up the schedule and he would go in by 9am. We met with Dr C, the surgeon, and the anesthesiologist. Then we waited. For a whole 45 minutes and it was over! Again, Cal did great. It took them longer to sedate him than the actual procedure. After he woke up in recovery, we all took a nap in his room waiting to be discharged. While we were sleeping, "Santa" unloaded a ton of gifts for Cal. We felt sort of guilty for getting those since so many other kids actually had to stay through the holidays and we were literally counting the minutes until we could leave. All Cal had left to do was pee and we were out of there. Jeff and I kept undoing his diaper every 5 minutes. When he finally did the deed, adios!!!!
We got home and took a 3 hour family nap. It was the best nap ever. I felt like I needed to keep pinching myself. Our ordeal wasn't completely over as we still had to meet with a home health nurse that evening to teach me how to administer the IV antibiotics through his PICC at home for the next 2 weeks. It was a little tricky the first few times (a 32 minute process from beginning to end) but then after a few treatments, it was no big deal. The PICC was taken out last Friday, Jan 8th and he started an oral antibiotic that evening that he will have to continue for a year to keep future UTIs at bay until he outgrows the residual reflux issues. The new antibiotic tastes like grape. He likes it.
So that's that. Our ordeal that we will never forget and he'll never remember. We were on prayer lists in Brooklyn, LA, Orlando, San Antonio, the list goes on and on. We discovered so many things about ourselves, or family and our friends that are invaluable. The moral of the story is Cal has hit his hospital quota for his childhood, maybe until he's about 65. He's allowed to do crazy little boy things like get stitches and break bones. But no more near fatal illness.
It was decided then that a permanent catheter needed to be inserted since the bladder and kidneys weren't draining properly. I could see the hesitation on several nurses faces over the next few days when they discovered that they were assigned to an infant patient with a catheter. Apparently, caths in babies are pretty uncommon. The catheter turned Cal into a happy kid though (AFTER it was inserted, of course). His bladder was so full and he finally had relief. He wanted to eat and play for the first time in 48 hours. His fever was still present and we learned why on Tuesday the 15th. His infection had spread so rapidly from his bladder to his kidneys, he became septic. This was a word that I was familiar with from all of my years of watching ER but I never really knew the seriousness of it. And to be perfectly honest, I sort of blocked it out despite the fact that Dr. Z had told me that if we would have waited to take him back to the doctor instead of going to the hospital, there would have been a tragic ending. The longer sepsis goes untreated, it essentially starts attacking the major organs and they will eventually shut down. Hours can literally mean the difference between life and death. I get a stomach ache every time I think about that.
By Wednesday, his fever had broken and we had somewhat of a plan of attack. The pediatric infectious disease doctor had visited with us and decided that Cal needed to be on IV antibiotics for three weeks AFTER his blood showed up clean. This was to ensure that the bacterium was completely eradicated from his blood. The IV in his hand would be too unsafe when we were finally released home so we would have a PICC line placed in his upper left arm, again, after the bacteria was no longer present in his blood.
At this point, we were waiting on the bacteria issue but we did have a diagnosis of his kidneys and bladder. Dr Z suspected that Cal was born with something called Posterior Urethral Valves (later confirmed), which basically causes urine to reflux back up into his bladder and kidneys. This is something that could have been detected when I was pregnant in my ultrasounds but unfortunately it wasn't. We were put in touch with an outstanding pediatric urologist at Children's Hospital, Dr. C, but were warned that we would be in the hospital until surgery could be performed and due to the holidays, we probably wouldn't get on the surgery schedule until after Christmas. No biggie. We just went out and bought an awesome fiber optic tree, brought his stocking to his room and counted down the days until Christmas! Those of you who read the last entry know that we lucked out and were put on the surgery schedule Christmas Eve!
On Monday, Dec 21st we learned that Cal's blood had been clean since the 17th, so off to surgery he went to get the PICC line placed. It was scary knowing that he had to go under but since babies are so wiggly, they have no other choice. He did wonderfully and finally had use of his left hand again. The doctors and nurses in the OR loved him because he apparently was smiling at them until he drifted off. Then on Wednesday, Dec 23rd we packed up our room at St John's and took an ambulance ride to Children's. It was kind of bittersweet to leave St John's because we had gotten to know several of the nurses really well. We had taken countless walks around the ward in his wagon (with the urine bag attached to our pockets), had so many visitors that his room looked like a toy store, and had his first visit from Santa. He took his first bites of food in that room and turned 6 months old on the 20th. Don't get me wrong - we wanted out of there. But we had also grown comfortable in our new routine.
Children's was another story. This hospital is known nationwide for its amazing pediatric care but it was like night and day compared to St Johns. It was chaotic and in your face. Far too much going on for our taste. Thank goodness that he only had one night there. Bright and early on Christmas Eve morning, we got a call that we had been bumped up the schedule and he would go in by 9am. We met with Dr C, the surgeon, and the anesthesiologist. Then we waited. For a whole 45 minutes and it was over! Again, Cal did great. It took them longer to sedate him than the actual procedure. After he woke up in recovery, we all took a nap in his room waiting to be discharged. While we were sleeping, "Santa" unloaded a ton of gifts for Cal. We felt sort of guilty for getting those since so many other kids actually had to stay through the holidays and we were literally counting the minutes until we could leave. All Cal had left to do was pee and we were out of there. Jeff and I kept undoing his diaper every 5 minutes. When he finally did the deed, adios!!!!
We got home and took a 3 hour family nap. It was the best nap ever. I felt like I needed to keep pinching myself. Our ordeal wasn't completely over as we still had to meet with a home health nurse that evening to teach me how to administer the IV antibiotics through his PICC at home for the next 2 weeks. It was a little tricky the first few times (a 32 minute process from beginning to end) but then after a few treatments, it was no big deal. The PICC was taken out last Friday, Jan 8th and he started an oral antibiotic that evening that he will have to continue for a year to keep future UTIs at bay until he outgrows the residual reflux issues. The new antibiotic tastes like grape. He likes it.
So that's that. Our ordeal that we will never forget and he'll never remember. We were on prayer lists in Brooklyn, LA, Orlando, San Antonio, the list goes on and on. We discovered so many things about ourselves, or family and our friends that are invaluable. The moral of the story is Cal has hit his hospital quota for his childhood, maybe until he's about 65. He's allowed to do crazy little boy things like get stitches and break bones. But no more near fatal illness.
Sleepy mom and babe. Cal screamed when he woke up and saw how scary mommy looked.
I'm 6 months old!!
Get that camera outta my face.
First solid food. Noticed the styrofoam cup/bowl. Nice.
First Santa experience
Wagon ride with Aunt Lisa
Taking his peeps for a spin around the hospital.
First treatment at home on Christmas morning
3 comments:
Mel--i can't imagine how scary that must've been. He looks so happy in all those pictures you would never know what he was going through. He is a sweet little boy and must have a guardian angel. :) Love, Ashley Hoover Schuette
Mel - my heart goes out to you. I can't even imagine those moments and days of seeing Cal so vulnerable and hurting. i thank God that He pushed you to follow your instincts. i am praying for Cal's continued recovery and health. marianne was born with an obstructed kidney and urinary reflux. she's already had surgery for the obstruction and is now on a daily dose of antibiotics (for UTI prevention) as we monitor the reflux in hopes that she will outgrow it. although she's not out of the woods yet, fortunately, her kidney issues were detected during pregnancy...i just cannot imagine going through this the way that you have. you are so very strong. my thoughts and prayers are with you and your family. much love to you and precious Cal. -Jill Chapman Laflen
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