Today, I finally got to see my son's face, his whole face. No tubes in his throat, no tape on his face. Just his sweet lil face! Its been 9 days since I saw just his face.
Brayden was extubated (taken off the ventilator) about 1130 this morning. He did great. He is so hoarse from that tube sitting between his vocal cords. He cried just a lil bit but it only took him about 5 minutes to start playing with the equiptment. Within 10 minutes, he was smiling. 45min later, he said "ball" when Gran was talking about his ball.
I am amazed at how good he feels. He will just be sitting there and he will start giggling for no reason! He licked a popcicle for the first time too.....and didnt gag!!!!!!! That is an improvement in itself!!
Hopefully we will get to go home on Friday. I cant wait to get my baby boy back home to his bed in his new-NON DIALYSIS-room!
_____________________________________________________
This is a poem/song that my mom wrote about Brayden's time on the vent.
So Still…
You’ve been so still—while our hearts pounded in our chests
So still, while we sat and watched the monitors.
You’ve been so still—while the nurses scrambled to fix you, to ease you, to mend you, and the doctors spoke with quiet words.
You’ve been so still—not your normal wiggling self.
No noses being “beeped”, no ball held high over your head with pride,
No “Ma-ma”, “Da-ddy”, or “Dai-sy”.
No toothy little grins.
You’ve been so still—while we waited and waited,
And waited some more for 9 long days, and 8 long nights.
So still, so still, so…STILL!
You’ve been so still—while we willed you to move, willed you to improve,
Willed you to take a turn for the better.
You’ve been so still—while your Mommy brushed your hair, rubbed your back,
And cut your fingernails.
While your Daddy whispered quietly in your ear,
And your jungle monkeys danced a little dance in your music box.
So still, while we updated family and friends,
And pleas were offered up on your behalf.
You’ve been so still—while the Hands on the clock wound slowly ‘round,
Twelve, twelve, twelve, twelve twelve.
Midnight and Noon, Midnight and Noon.
Tuesday, and then Tuesday again.
And STILL you were still.
So stilll.
So still is my heart, now that you’re awake!
So at peace, so comforted, so rested!
And now that this is over, now that you are wiggling again, smiling again,
living again,
This I know, Brayden Jay:
You ARE my heart, and I will cherish you until the day that I am…
So Still.
_________________________________________________________-
My mom showed me that today, I cried.....Duh....
After Transplant, day 9, the day he woke up
Wednesday, April 21, 2010
Sunday, April 18, 2010
Its the little things..
I have always been a details person but have never really noticed that it is the little things that get me thru the day.
Until today..........I realized today how much I missed being a Mommy to my lil boy. This morning we turned him over onto his belly to help his lungs expand and hopefully drain out some of the gunk. When we turned him over, his lil naked back and butt were laying there ready for me to rub out the wrinkles and rub lotion on. If felt so good to just touch my son's skin. His nurse suggested the lotion and it was a really good idea. I know that it made me feel better and it probably made him feel better too. I cut his really long fingernails too, which had been buggin me.
His xray doesnt look any better but I think his lungs are starting to open up and some of the gunk is starting to move around. This morning his sats dropped and they sucked out a whole bunch of stuff. Obviously the phazyime, CPT and turning has help alot. Im sure that we will have some sat drops before it all overwith, the gunk has to get moving around before it can come out. His dopamine is down to 2mcg and will be off before the day is over. His FIO2 was up to 100 again but Im confident that they can wean him back to 40% like he was last night. His urine output has been great since the diamox and most of the swelling in his face and body is gone. That should help his lungs alot. Potassium is just a lil low with all the urine output but Dr Malagon changed TPN orders so that should correct itself.
I stood up for a lil over an hour today so Im gonna rest for a while. Im trying to get the transplant resident to come see me when he comes to see buddy so he can give me the goahead to take these steristrips off that are blistering me. Im trying to be a good patient.
I have learned that hour by hour, day by day things change so we will see what happens.
Until today..........I realized today how much I missed being a Mommy to my lil boy. This morning we turned him over onto his belly to help his lungs expand and hopefully drain out some of the gunk. When we turned him over, his lil naked back and butt were laying there ready for me to rub out the wrinkles and rub lotion on. If felt so good to just touch my son's skin. His nurse suggested the lotion and it was a really good idea. I know that it made me feel better and it probably made him feel better too. I cut his really long fingernails too, which had been buggin me.
His xray doesnt look any better but I think his lungs are starting to open up and some of the gunk is starting to move around. This morning his sats dropped and they sucked out a whole bunch of stuff. Obviously the phazyime, CPT and turning has help alot. Im sure that we will have some sat drops before it all overwith, the gunk has to get moving around before it can come out. His dopamine is down to 2mcg and will be off before the day is over. His FIO2 was up to 100 again but Im confident that they can wean him back to 40% like he was last night. His urine output has been great since the diamox and most of the swelling in his face and body is gone. That should help his lungs alot. Potassium is just a lil low with all the urine output but Dr Malagon changed TPN orders so that should correct itself.
I stood up for a lil over an hour today so Im gonna rest for a while. Im trying to get the transplant resident to come see me when he comes to see buddy so he can give me the goahead to take these steristrips off that are blistering me. Im trying to be a good patient.
I have learned that hour by hour, day by day things change so we will see what happens.
Saturday, April 17, 2010
And Tuesday came and went.....
Well, Tuesday morning got here.......and flew by.....now its Saturday morning and wow, what a rough couple of days.
Tuesday morning we woke buddy up after his dialsyis finished, bathed him in special soap, the family got there and poof, we were off to holding. It was like a dream, I dont remember about half of it....everything moved so fast. I went to surgery, then they took him back. That was the hardest part, leaving my baby boy to go back to surgery and worrying that something was going to happen to him while I was in surgery too.
We made it thru surgery, had some bed issues in the PICU so I couldnt stay in the PICU with him as planned so I went to the 6th floor but they got me a video monitor that helped out alot. He has had some kidney issues, lung issues, fluid issues but most are to be expected.
I really dont have time to write all of the details but I will for those of you that will be going thru this soon. As for right now, I am focused on staying positive while my lil man is sedated on the ventilator.
Tuesday morning we woke buddy up after his dialsyis finished, bathed him in special soap, the family got there and poof, we were off to holding. It was like a dream, I dont remember about half of it....everything moved so fast. I went to surgery, then they took him back. That was the hardest part, leaving my baby boy to go back to surgery and worrying that something was going to happen to him while I was in surgery too.
We made it thru surgery, had some bed issues in the PICU so I couldnt stay in the PICU with him as planned so I went to the 6th floor but they got me a video monitor that helped out alot. He has had some kidney issues, lung issues, fluid issues but most are to be expected.
I really dont have time to write all of the details but I will for those of you that will be going thru this soon. As for right now, I am focused on staying positive while my lil man is sedated on the ventilator.
Sunday, April 11, 2010
Come Tuesday morning....
IF Tuesday morning ever gets here....It will be the one of the best and most scary days of my life.
IF Tuesday morning ever gets here.....It will be 413 days since my baby boy was born.
IF Tuesday morning ever gets here.....We will be getting ready for Brayden to get his "new" kidney.
There were so many times in those first few weeks of Brayden's life that I wondered if we would ever get to Tuesday morning. When we first started this journey, we were told that if Buddy got his transplant by age 5 we would be lucky. I didnt accept that and yes, I pushed him harder than I probably should have but we are here and he is healthy!
The past few days have been suprisingly low stress and VERY laid back to me.....I was asking myself today...why have the past few days been so easy? Then I answered myself.....................Calories dont matter, how much he eats doesnt matter, how much he throws back up doesnt matter, that's why. Just a few more days, I thought, and life will be a lil different. The past few days-didnt matter! At least on the medical side of things...
The past few days have been INCREDIBLE! Brayden has been in the best mood! He has been SO funny. Kyle has been off and we have hung out and played around the house.
Just a few numbers that float around in my head all day...
Brayden's birthday 2/24/09
Birth weight 5lb 5oz
Brith length 17 in
Weight now 22lb (10kg)
Length now 29 in
Normal potassium 3.5-5.5
Lowest potassium 1.8
Highest potassium 7.4
Normal sodium 135-145
Lowest sodium 121
Highest sodium 156
Normal BUN 7-20
Highest BUN 89
Lowest BUN 16
Normal Creatinine 0.2-1.0
Lowest Creatinine 1..22
Highest Creatinine 4.6
Total days on dialysis 278
Total hours on dialysis 2286 (13 weeks/24hrs/day)
Total number of times under anethesia 10 (counting transplant)
Total procedures so far 16.....PUV resection, PD cath placement, Gtube placement, L inguinal hernia repair, R inguinal hernia repair, L Orchiopexy, PD cath replacement, Rectal Biopsy, PD cath out, PD cath #3, Port placement, EGD, Ph Probe Study, L nephrectomy, R nephrectomy, Bladder augmentation....
Number of hospital stays overnight 5 (wow, that's not many)
Number of Dr. Malagon visits 48
Number of lab draws 79
Highest number of meds 21
Lowest number of meds 12
Number of doctors he has 7 ...... Malagon-Nephrology, Hill-Urology, Fowler-General Surgery, Kendall-Gastroenterology, Treece-Peds, Grandas-Transplant, Goldman-Transplant
Wish us luck, IF Tuesday ever gets here!
IF Tuesday morning ever gets here.....It will be 413 days since my baby boy was born.
IF Tuesday morning ever gets here.....We will be getting ready for Brayden to get his "new" kidney.
There were so many times in those first few weeks of Brayden's life that I wondered if we would ever get to Tuesday morning. When we first started this journey, we were told that if Buddy got his transplant by age 5 we would be lucky. I didnt accept that and yes, I pushed him harder than I probably should have but we are here and he is healthy!
The past few days have been suprisingly low stress and VERY laid back to me.....I was asking myself today...why have the past few days been so easy? Then I answered myself.....................Calories dont matter, how much he eats doesnt matter, how much he throws back up doesnt matter, that's why. Just a few more days, I thought, and life will be a lil different. The past few days-didnt matter! At least on the medical side of things...
The past few days have been INCREDIBLE! Brayden has been in the best mood! He has been SO funny. Kyle has been off and we have hung out and played around the house.
Just a few numbers that float around in my head all day...
Brayden's birthday 2/24/09
Birth weight 5lb 5oz
Brith length 17 in
Weight now 22lb (10kg)
Length now 29 in
Normal potassium 3.5-5.5
Lowest potassium 1.8
Highest potassium 7.4
Normal sodium 135-145
Lowest sodium 121
Highest sodium 156
Normal BUN 7-20
Highest BUN 89
Lowest BUN 16
Normal Creatinine 0.2-1.0
Lowest Creatinine 1..22
Highest Creatinine 4.6
Total days on dialysis 278
Total hours on dialysis 2286 (13 weeks/24hrs/day)
Total number of times under anethesia 10 (counting transplant)
Total procedures so far 16.....PUV resection, PD cath placement, Gtube placement, L inguinal hernia repair, R inguinal hernia repair, L Orchiopexy, PD cath replacement, Rectal Biopsy, PD cath out, PD cath #3, Port placement, EGD, Ph Probe Study, L nephrectomy, R nephrectomy, Bladder augmentation....
Number of hospital stays overnight 5 (wow, that's not many)
Number of Dr. Malagon visits 48
Number of lab draws 79
Highest number of meds 21
Lowest number of meds 12
Number of doctors he has 7 ...... Malagon-Nephrology, Hill-Urology, Fowler-General Surgery, Kendall-Gastroenterology, Treece-Peds, Grandas-Transplant, Goldman-Transplant
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