So the last week has been so hectic let alone all the fun of the past few months!
Trystian's journey now includes a UTI... He was okay all of last week until Saturday morning when he was a little sluggish and didn't want to get out of bed. Friday night was long and the kids didnt get to sleep till way late, so I thought at first that was the reason. But when I checked on him in late morning, I noticed he had a fever. It was 102.2. I got him out of bed and moving because he had to go to the bathroom even though he said he didnt have to. I got him to come downstairs and about 10 minutes later he had a 103.3 fever. I gave him tylenol and consulted his pediatric urologist on the possiblity of a UTI or it just being a virus. The urologist said to make sure it wasnt a UTI. We went into the ER to get a urine culture. The doctor was so nice, well the whole team was great! From the techs and nurses to the doctor, they all listened to my concern of a possible UTI and that I was in contact with our urologist. Unfortunately the results came back positive. Trystian was prescribed an antibiotic and we were released. I told our urologist what was going on. The urologist said to just let him know once he is better and we would look at getting some tests done to make sure no harm was done to the kidneys.
Later on that night, Trystian was telling me he was so cold and he was very lethargic. It was exactly 4 hours from the last dose of tylenol. I checked his temperature and it was 104.7. I gave him his tylenol and then called the pediatrician to let him know. 5 minutes later as I was getting off the phone with the pediatrician Trystian's temperature was 105.4. I started to grab jackets and keys along with the meds he was on put together in prep for the ER again. It was about 10 minutes from the first time I checked his temperature and he was just laying there and looked miserable. I checked his temp one more time to find it at 106.9! I dropped everything except the keys and grabbed him and put him in the car so fast! We rushed to the ER where they checked his temp at 104. Thankfully in the time that he had they tylenol in him the temperature had started to go down! The ER took us to a room and Trystian just layed there. I told the techs, the nurses, and the doctors about his chronic kidney disease and about the UTI he was diagnosed with that afternoon. I contacted our urologist and he said that Trystian needed to be catharized and that he should be admitted to the hospital to monitor the fever and UTI. I relayed this information to the techs, the nurses, and the doctor. The doctor told me they would get the fever down, and that he didnt need to be cathaterized. I insisted that he did, however they said they would give him an IV and check his blood. We were released after the IV was completed and his fever was down to 100.5. I asked the nurse to check his temperature as we were leaving the room and it had already begun to rise. I was told that he just needed tylenol when it was time.
We woke up the Sunday, the next morning at 8am and I checked his temperature. It was 104.2. I gave him tylenol and wrote an email to the urologist. The urologist suggested we go to Hopkins so that they could cath him and take care of him if the local hospital wouldnt. I decided to try the hospital one more time since the day crew was much more helpful than the night crew was. We went to church and immediately to the hospital where we got the same doctor as the prior day and she was very helpful and Trystian was cathetarized about 10 minutes after we arrived. He then got some bloodwork to see if the UTI was being affected by the meds he was given at all. The outcome was that the first urine culture showed young growth and the new bloodwork showed that the infection was getting better, however not as fast as it should, and his creatinine levels were really high and sodium was super low. I let our urologist know what was going on, and we were told we would be transported to Hopkins that night. A little while later we were then told we would stay at the local hospital and that the Doctors were in close contact with the doctors at Hopkins and they would take care of us locally. Trystian was admitted to the hospital that night and he was given an IV antibiotic to help things along.
The next day more blood was taken and it showed a very big fluctuation in the creatinine and sodium levels. We were in contact with the Hopkins crew and told we would be going home that Monday and had follow up appointmens on Friday at Hopkins to start running tests. We were happy to go home, well I was anyways... Trystian said he wanted to stay in the hospital because he didnt want to go home with the catheter. Poor kid! He was released with the catheter in place and he got some leg bags so he can be mobile as well as a couple night bags for night time so I dont have to keep emptying it every 2 hours and can get some sleep. He has antibiotics to take 3 times a day and had a doctor appointment with his local pediatrician to make sure the catheter looked good and no big issues.
With all this being said, the urologist has tests lined up for us on this Friday as well as for 2 weeks from now. Trystian will get an ultrasound and VCUG this friday and we are suppose to learn how to self cathetarize so that we can make sure his bladder is completely emptied, and then when we go back in 2 weeks he will see the nephrologist and get a urodynamics test and possibly a MAG-3 scan. With all of these test results, we will find out the damage to the kidneys this UTI has caused, and whether the right kidney is worth preserving anylonger since it was already marginally usuable before. We will also find out why the bladder is unable to fully void all the urine when Trystian pees and if there is a surgical fix for this. The tests will also show if he has any other obstructions or if the reflux is back.
I hate seeing my children go through so much, and Trystian has been through too much in his short 7 years here on earth! He is a trooper though! So brave!!
You can follow Trystian's journey on his facebook page here. I keep that updated as things happen.
Trystian's journey now includes a UTI... He was okay all of last week until Saturday morning when he was a little sluggish and didn't want to get out of bed. Friday night was long and the kids didnt get to sleep till way late, so I thought at first that was the reason. But when I checked on him in late morning, I noticed he had a fever. It was 102.2. I got him out of bed and moving because he had to go to the bathroom even though he said he didnt have to. I got him to come downstairs and about 10 minutes later he had a 103.3 fever. I gave him tylenol and consulted his pediatric urologist on the possiblity of a UTI or it just being a virus. The urologist said to make sure it wasnt a UTI. We went into the ER to get a urine culture. The doctor was so nice, well the whole team was great! From the techs and nurses to the doctor, they all listened to my concern of a possible UTI and that I was in contact with our urologist. Unfortunately the results came back positive. Trystian was prescribed an antibiotic and we were released. I told our urologist what was going on. The urologist said to just let him know once he is better and we would look at getting some tests done to make sure no harm was done to the kidneys.
Later on that night, Trystian was telling me he was so cold and he was very lethargic. It was exactly 4 hours from the last dose of tylenol. I checked his temperature and it was 104.7. I gave him his tylenol and then called the pediatrician to let him know. 5 minutes later as I was getting off the phone with the pediatrician Trystian's temperature was 105.4. I started to grab jackets and keys along with the meds he was on put together in prep for the ER again. It was about 10 minutes from the first time I checked his temperature and he was just laying there and looked miserable. I checked his temp one more time to find it at 106.9! I dropped everything except the keys and grabbed him and put him in the car so fast! We rushed to the ER where they checked his temp at 104. Thankfully in the time that he had they tylenol in him the temperature had started to go down! The ER took us to a room and Trystian just layed there. I told the techs, the nurses, and the doctors about his chronic kidney disease and about the UTI he was diagnosed with that afternoon. I contacted our urologist and he said that Trystian needed to be catharized and that he should be admitted to the hospital to monitor the fever and UTI. I relayed this information to the techs, the nurses, and the doctor. The doctor told me they would get the fever down, and that he didnt need to be cathaterized. I insisted that he did, however they said they would give him an IV and check his blood. We were released after the IV was completed and his fever was down to 100.5. I asked the nurse to check his temperature as we were leaving the room and it had already begun to rise. I was told that he just needed tylenol when it was time.
We woke up the Sunday, the next morning at 8am and I checked his temperature. It was 104.2. I gave him tylenol and wrote an email to the urologist. The urologist suggested we go to Hopkins so that they could cath him and take care of him if the local hospital wouldnt. I decided to try the hospital one more time since the day crew was much more helpful than the night crew was. We went to church and immediately to the hospital where we got the same doctor as the prior day and she was very helpful and Trystian was cathetarized about 10 minutes after we arrived. He then got some bloodwork to see if the UTI was being affected by the meds he was given at all. The outcome was that the first urine culture showed young growth and the new bloodwork showed that the infection was getting better, however not as fast as it should, and his creatinine levels were really high and sodium was super low. I let our urologist know what was going on, and we were told we would be transported to Hopkins that night. A little while later we were then told we would stay at the local hospital and that the Doctors were in close contact with the doctors at Hopkins and they would take care of us locally. Trystian was admitted to the hospital that night and he was given an IV antibiotic to help things along.
The next day more blood was taken and it showed a very big fluctuation in the creatinine and sodium levels. We were in contact with the Hopkins crew and told we would be going home that Monday and had follow up appointmens on Friday at Hopkins to start running tests. We were happy to go home, well I was anyways... Trystian said he wanted to stay in the hospital because he didnt want to go home with the catheter. Poor kid! He was released with the catheter in place and he got some leg bags so he can be mobile as well as a couple night bags for night time so I dont have to keep emptying it every 2 hours and can get some sleep. He has antibiotics to take 3 times a day and had a doctor appointment with his local pediatrician to make sure the catheter looked good and no big issues.
With all this being said, the urologist has tests lined up for us on this Friday as well as for 2 weeks from now. Trystian will get an ultrasound and VCUG this friday and we are suppose to learn how to self cathetarize so that we can make sure his bladder is completely emptied, and then when we go back in 2 weeks he will see the nephrologist and get a urodynamics test and possibly a MAG-3 scan. With all of these test results, we will find out the damage to the kidneys this UTI has caused, and whether the right kidney is worth preserving anylonger since it was already marginally usuable before. We will also find out why the bladder is unable to fully void all the urine when Trystian pees and if there is a surgical fix for this. The tests will also show if he has any other obstructions or if the reflux is back.
I hate seeing my children go through so much, and Trystian has been through too much in his short 7 years here on earth! He is a trooper though! So brave!!
You can follow Trystian's journey on his facebook page here. I keep that updated as things happen.
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