Today is a good day for several reasons.....
1) Our appt with Dr. Malagon was great!. Brayden weighed 6kg ( 13 lb). He was 23 inches long and his head circ was 41 cm. That's 2lbs, 1 in and 1 in more than 2 weeks ago! Dr. M was thrilled. His labs were pretty good.
Na 139
K 5.0
Cl 101
BUN 63 ( little up)
Cr 2.0( little up)
Glu 119
Ca 10
PO4 4.3
Albumin 3.0 (great!)
Alk Phos 574
PTH 673.6 ( down from 1000 so the Sensipar is working)
Hgb 11.9
Hct 35 ( great!)
WBC 6
We are increasing his Calcitrol to .08ml/daily and decreasing the Tums to 3 times a day
2) Brayden got to see his great grandparents today....He puked on Grandmama but she loved it.
3) Finn, our new found dialysis buddy got a kidney today and is doing well. Another PD pt at UT got a kidney today too.
Its amazing how excited you get when somebody else's kid gets a new kidney.
Wednesday, July 29, 2009
Monday, July 27, 2009
I LOVE weekends!
I love the weekends! I work every other weekend so the ones that I am off are the best thing ever! We went to the lake with my family. It was the first time in a long time that we ALL were somewhere hanging out. Brayden did so good, he fussed some because it was hot but when we got him cooled down he was his happy self...It did storm big time, but we just huddled together under the canopy and hoped it would stop! Kyle, tried to sink the boat.....well, it wasnt all his fault, the water was super choppy and the front of the pontoons were riding low...Only about 300 gallons came over the front and soaked everything. Kyle threw it in reverse and all was well, except all the towels were wet. All in All a GREAT DAY!
I just cant wait till the day that Buddy can go swimming in the lake too! He loved the bath when he was off of dialysis for that 23 days!
We are going to his Ped today to get some allergy medicine. He threw up mucous again today, its not just a cold. I have put it off for ever so that if we could avoid another medicine, we could
I just cant wait till the day that Buddy can go swimming in the lake too! He loved the bath when he was off of dialysis for that 23 days!
We are going to his Ped today to get some allergy medicine. He threw up mucous again today, its not just a cold. I have put it off for ever so that if we could avoid another medicine, we could
Wednesday, July 22, 2009
Labs today
Today we did labs....we cheated and just did a heel stick....I am so tired of him getting poked a million times just for blood.....I cant wait until we get the medi-port
Na 137
K 5.2
Cl 101
CO2 27
Glu 92
BUN 59
Cr 1.82
PO4 4.2
Alb 2.9
No changes to anything. That we know of...they atleast didnt call today....
Buddy has been doing really well at PT, made it a whole hour! Such a big boy!
Na 137
K 5.2
Cl 101
CO2 27
Glu 92
BUN 59
Cr 1.82
PO4 4.2
Alb 2.9
No changes to anything. That we know of...they atleast didnt call today....
Buddy has been doing really well at PT, made it a whole hour! Such a big boy!
Until TODAY
Well, Brayden will be 5 months old on Friday and boy has it been a roller coaster. Since I have just started this thing, I will fill you in on our life up until today.
Kyle and I met in Feb of 2008. We started dating a couple of months after that and got very serious very quickly. We decided to have a baby in May of 2008. I went off of birthcontrol in June and we got pregnant in July. We found out that I was pregnant on August 8th and our world started revolving around this baby. We were the happiest people ever! I had horrible morning sickness but wouldnt trade it now for anything. At the time, I was working nights in the ER ( I am a RN) and Kyle was still at the Fire Dept. (he is a paramedic and now works full time at the Ambulance Service). Life was great, we were going to have the most wonderful healthy baby that there ever was.....Until our first official ultrasound at 19 weeks.
At 19 weeks, we went in to have our first official ultrasound. We had been doing unofficial ones in the ER and had watched our lil man grow. We were okay with either sex but were so excited that the first thing we saw was his "fireman"! All of the joy lasted about 15 min while we watched the rest of the ultrasound. Our OB came in and said that the babies bladder and ureters were big and we would need to see a high risk OB to help determine what it was. This was the most devistating thing that I have ever gone thru. To know that something may be wrong with your baby is awful.
We saw the high risk people the next Friday and they said that it was either Posterior Urethral Valves (PUV) or Prune belly syndrome ( PBS). He said that we would need to decide if we wanted to continue the pregnancy becuase both of these problems were life threatening to the baby and that about half the time they dont make it long after being born. We promptly said kiss it and we want our baby no matter what. .....What kind of question is that anyway?
We continued to see them and have many many ultrasounds. They said that things were going great and that we could deliver at our hosptial and if anything was to happen that we could transfer Brayden to an NICU in a bigger hospital. That sounded great to me until I went to see the Urologist that would be seeing him after he was born. He told me that even if he came on time that he would need a NICU and would probably need to be put on dialysis....That was at 32 weeks. I called my regular OB and told her that and since my fluid level had been dropping we decided to give the high risk people in Knoxville a call. My fluid dropped even more on thursday and I started steriods to prepare his lungs, saw Dr. Stevens on Friday. He told me to come back Monday with intentions to stay in the hosptial. We might have a baby. When we got there Monday, he put us in and said he would try to get us to 34 weeks. On tuesday, I was exactly 33 weeks and went for another ultrasound and monitoring of Brayden. He wasnt doin so hot and my fluid was almost compeltely gone so Dr. Roussis came in and said that we would have a baby by c- section that day. It was 10 am and we had a baby at 12:30.
When he came out he was HUGE for a 33 weeker. He was 5lb 5oz and 17 in long. He cried and was breathing great and peed on the doctor in the OR! I was the happiest mom ever. I got to see him for about 5 min before he was wisked to the NICU. Kyle stayed with him as much as possible until I was able to go to him at 8pm that night. He was so tiny yet looked so big next to some of his neighbors.
Our NICU stay--the short version is.........stayed 45 days, had 4 surgeries, day 6 for PUV, day 13 for cath placement, day 29 for G tube, hernia repair and orchiopexy, day 33 for cath replacement b/c of omentum. Transfered to UT (where his nephrologist is) and started dialysis training on day 40 and came home on April 10th, 2009. He weighed just over 6 lb at that time.
Since then......we have had 2 round of peritonits, surgery to take out infected cath, off dialysis for 23 days, surgery to put it back in, and a vomiting admission. Before now, then longest he had been out of the hospital for was 13 days. Now he has been out for almost 2 months (knock on wood)
He is on dialysis 8 hours a night, 6 nights a week. We see his Nephrologist every 2 weeks and get blood drawn every Wednesday. He see physical therapy for an hour every Tuesday and occupational therapy every Thursday. He is a very happy baby and is coming along very well.
He doesnt eat well....he did for a while but stopped completely a few weeks ago....he is slowly comeing back to eating. He offer 2 oz every 2 hours during the day...he eats maybe 1-1.5 oz and the rest goes down his G tube. He is on the continuous feed at night getting almost 2 oz every hour...I was totally against the G tube and cont feed but now realize that the best thing for him is to grow....and boy is he growing.
Today he weighed 6.03 kg which is 13 lb after dialysis so his dry weight is about 12.5lb! He was 23 in long last time we were at Dr. Malagon's.................He is my big fat boy!!!
Kyle and I met in Feb of 2008. We started dating a couple of months after that and got very serious very quickly. We decided to have a baby in May of 2008. I went off of birthcontrol in June and we got pregnant in July. We found out that I was pregnant on August 8th and our world started revolving around this baby. We were the happiest people ever! I had horrible morning sickness but wouldnt trade it now for anything. At the time, I was working nights in the ER ( I am a RN) and Kyle was still at the Fire Dept. (he is a paramedic and now works full time at the Ambulance Service). Life was great, we were going to have the most wonderful healthy baby that there ever was.....Until our first official ultrasound at 19 weeks.
At 19 weeks, we went in to have our first official ultrasound. We had been doing unofficial ones in the ER and had watched our lil man grow. We were okay with either sex but were so excited that the first thing we saw was his "fireman"! All of the joy lasted about 15 min while we watched the rest of the ultrasound. Our OB came in and said that the babies bladder and ureters were big and we would need to see a high risk OB to help determine what it was. This was the most devistating thing that I have ever gone thru. To know that something may be wrong with your baby is awful.
We saw the high risk people the next Friday and they said that it was either Posterior Urethral Valves (PUV) or Prune belly syndrome ( PBS). He said that we would need to decide if we wanted to continue the pregnancy becuase both of these problems were life threatening to the baby and that about half the time they dont make it long after being born. We promptly said kiss it and we want our baby no matter what. .....What kind of question is that anyway?
We continued to see them and have many many ultrasounds. They said that things were going great and that we could deliver at our hosptial and if anything was to happen that we could transfer Brayden to an NICU in a bigger hospital. That sounded great to me until I went to see the Urologist that would be seeing him after he was born. He told me that even if he came on time that he would need a NICU and would probably need to be put on dialysis....That was at 32 weeks. I called my regular OB and told her that and since my fluid level had been dropping we decided to give the high risk people in Knoxville a call. My fluid dropped even more on thursday and I started steriods to prepare his lungs, saw Dr. Stevens on Friday. He told me to come back Monday with intentions to stay in the hosptial. We might have a baby. When we got there Monday, he put us in and said he would try to get us to 34 weeks. On tuesday, I was exactly 33 weeks and went for another ultrasound and monitoring of Brayden. He wasnt doin so hot and my fluid was almost compeltely gone so Dr. Roussis came in and said that we would have a baby by c- section that day. It was 10 am and we had a baby at 12:30.
When he came out he was HUGE for a 33 weeker. He was 5lb 5oz and 17 in long. He cried and was breathing great and peed on the doctor in the OR! I was the happiest mom ever. I got to see him for about 5 min before he was wisked to the NICU. Kyle stayed with him as much as possible until I was able to go to him at 8pm that night. He was so tiny yet looked so big next to some of his neighbors.
Our NICU stay--the short version is.........stayed 45 days, had 4 surgeries, day 6 for PUV, day 13 for cath placement, day 29 for G tube, hernia repair and orchiopexy, day 33 for cath replacement b/c of omentum. Transfered to UT (where his nephrologist is) and started dialysis training on day 40 and came home on April 10th, 2009. He weighed just over 6 lb at that time.
Since then......we have had 2 round of peritonits, surgery to take out infected cath, off dialysis for 23 days, surgery to put it back in, and a vomiting admission. Before now, then longest he had been out of the hospital for was 13 days. Now he has been out for almost 2 months (knock on wood)
He is on dialysis 8 hours a night, 6 nights a week. We see his Nephrologist every 2 weeks and get blood drawn every Wednesday. He see physical therapy for an hour every Tuesday and occupational therapy every Thursday. He is a very happy baby and is coming along very well.
He doesnt eat well....he did for a while but stopped completely a few weeks ago....he is slowly comeing back to eating. He offer 2 oz every 2 hours during the day...he eats maybe 1-1.5 oz and the rest goes down his G tube. He is on the continuous feed at night getting almost 2 oz every hour...I was totally against the G tube and cont feed but now realize that the best thing for him is to grow....and boy is he growing.
Today he weighed 6.03 kg which is 13 lb after dialysis so his dry weight is about 12.5lb! He was 23 in long last time we were at Dr. Malagon's.................He is my big fat boy!!!
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