August 3, 2008

Camo - July 28-30,2008

Hello to all! Camo is doing so much better :) we took him to school on Monday for a 1/2 day. He struggled with separation anxiety when we took him in the morning (we did too), and had a hard time laying down to nap - but when it was time to pick him up, he was super happy! He loved so much being reunited with his friends and teachers. I have to mention this - because it truly melted my heart... when we took him to school on Monday (his first day back ) we were talking to Ms.Lynn about how he may have a hard time with his nap - since he is still not on a regular schedule... She simply stated " I will hold him the entire time, if that is what he needs". How precious! Also, when we picked him up - she stated that he did really good with potty time, and even teared up when he first went " tee- tee"... thinking about how much everyone has prayed for him to start being able to "tee- tee" - which would mean that his kidneys are functioning properly again. We are so blessed to have so much love given to our little man - from his school teachers and little school friends. Since he spends almost more of his awake hours with them - than he does with us - it is so very comforting to know how much he is loved and cared for. We kept him home on the 2nd day - because he needed to try to catch up on his rest.
He is beginning to fall asleep a little easier at night.. working from 11p to 10pm then 9pm - trying to get back to the normal bedtime of 8:30pm that he was used to. He now has difficulty falling asleep - with his room completely dark (never had this problem before - prior to him being in the hospital)... we figured out that this is caused from being in the hospital for 4 weeks - with all lights constantly on - he adjusted to is somewhat, and is now having to try to change that mindset. We picked up a nightlight for him and he is doing pretty good now :)
His next follow up date is scheduled for lab's only - on Thurs., 7-31-08.
Thank you all again so very, very much for all your prayers!

July 23, 2008

Hello all! Camo is doing soo much better since he is back home. He is almost 100% back to being himself. He is loving his bath times, he is eating well and just completely content with sitting at home playing. We took him to the dr. on Tuesday (July 22) and the dr. said everything is looking good. We talked to him about how Camo was not taking his medicine too well, because he did not like the taste of it.. and it was alot to give to him. We mentioned that 30ml, 3x's a day was alot to try to make him take - since he hated the flavor of it. The dr. then looked at us with a deeply concerned face - and said, " you are giving him how much?!". We then told him, the discharge paper (that a nurse completed on our day of departure) wrote down " 30 ml , 3x's a day". We have a copy of this at home. The dr. then told us - Camo should only be given TWO ml's, 3x's a day ( a total of 6ml's daily - NOT 90 ml's daily). We panicked. This medicine is 'lasix' -which is for his blood pressure and to also help in assisting his kidneys to produce urine. The MAX. that Camo was given of this at the hospital - on his worse day - was 10 ml's per dosage. The dr. is going to follow up with the nurse that discharged this information incorrectly and also contact the pharmacy that filled the prescription. We are so thankful that at this time, there seems to be no long term effect from this "over dosage". We believe this is only because of the prayers that are still being said for our little man. Thankfully, it tasted bad - and he spit probably more of it out, than what he actually swallowed.
Other than that horrible discovery... all else is going well. Still trying to work on getting Camo on a regular routine (nap time from 12n-2p and bedtime around 8pm)...
Please continue to keep him in your prayers. Our goal is to have him back in school starting next week. He is already looking forward to this - he keeps talking about his teachers and 'best' friends :)
We are so thankful to have our angel home. Thank you again for all your loving prayers and thoughts.

Going Home!

We have a very exciting update to share with you all! The doctor came in this morning around 8am to tell us that we were going home today. Around 11am, we were discharged and heading back to home sweet home! Camo was so excited! When we got home, he wanted to sit in his room and play with all the toys he had missed so much. He then slept for about 4 hours, which was good for his recovering body. We are so thankful for all the thoughts and prayers. It is such an answer to prayer that he is back at home now and doing so well. He has a follow-up appt next Tuesday. We will keep you updated! :)

July 17, 2008

Camdyn had a great nights rest and woke up happy :) He ate all of his breakfast this morning and as soon as he was finishing up - the nurse came in and said it was time to go for his catheter x-rays. We took him to the x-ray room, and while he was laying down - they "de-ballooned" his catheter in hopes he could "tee tee" on his own - and this would naturally push the catheter out of his body - on its own. He could not "tee tee" on his own laying down (even after the nurses poured a couple of bottles of warm water on "that area", hoping this would trick his body into feeling like it's in a bath tub... so he would have the sensation to urinate. This did not work either. So! We sat him up and asked him if he wanted to stand up and tee-tee like a big boy - he said "yes!". As soon as he stood up (and we had the cup/bottle in place) - he "tee-teed" all on his own - and pushed the catheter out! he experienced NO PAIN at all!!! We have never been so happy to see him tee-tee!!! Oh my goodness! We are super thrilled :)

We are back in his hospital room right now, waiting on the results from the x-rays. Camo is trying to walk around everywhere. He is doing a great job! He is still really wobbley and unstable, but is anxious to get going! Camdyn is in such a great mood.. he is laughing and loveable... very much like the sweet baby boy we know.

The nurse just stepped in and said that at 2:30pm the dr. is going to remove his vascath (the catheter in his chest)... We asked the nurse if this means the results from the x-rays were great?! the nurse assumes "yes" but is not for certain. The dr. will come by shortly to update us.
Thank GOD! What an amazing answer to all of our prayers!!!! WOW! We are soo happy and relieved! We are so close now :)

***Thank you our Heavenly Father, for the mercy and goodness you have shown to our precious baby. We praise you for the healing you have delivered in Camdyn's body. ***

UPDATE UPDATE UPDATE UPDATE UPDATE UPDATE UPDATE:
Camo's dr. came by around 2pm and was ready to do the procedure. We took Camdyn on a wagon ride to the 2nd floor and into the Operating Room. The dr. said he would not need to sedate Camo - he would simply use an instrument (similar to a pair of tweezers) and pull of the stitches and vascath. Camdyn cried, not because he was feeling any pain, but because he was fearful that he would feel pain - at any given second. The procedure only lasted about 10minutes. Once the dr. completed the procedure, we gave Camo a Popsicle and took him for another wagon ride back to our room. The dr. said the only precaution we need to take at this time - is no full bath for 3 days (today counting as day #1). Easy enough!

We are back in our room now. Camdyn is playing with his race cars, batman and superman... and just laughing and talking up a storm. He is so happy and relieved. The plan now, is to be able to leave here tomorrow (on Friday) and take him home :) yipee!!!!

We can not express our gratitude enough - to all of you for your prayers, thoughts and love. Thank you so much to everyone for all of your messages, phone calls, gifts and continuous visits to the hospital. You are all amazing, we are so blessed to have such an amazing circle of family and friends.
We love you all.

July 16, 2008

Camdyn was a sleepy head this morning (due to the catheter pains and the constant interruption of the nurses coming in to take his vitals and blood)... but overall he is doing good. Our dr. came by this morning. He is taking him off all but one medicine and stated our surgeon should come by this afternoon to explain to us the details of the procedure to take the catheters out. He stated that most likely - we can plan on the surgeon performing an x-ray on Thursday morning - to see if Camo's urethra has healed... if it has (you ready for this?!) - they will take him to the Operating Room and take out both catheters (the one in his bladder as well as the one in his chest -that was used for the dialysis)!!!!! If all goes well, we are going to be taking our baby boy home on FRIDAY!!! yipee!!! So, please pray that the catheter has healed with the healing process of his urethra.
Camo has eaten well today and has already had a couple of wagon rides. He is trying to walk more and is keeping up a great spirit :) He is such a tough little cookie :)

July 15, 2008

Camo had a good day today. All his labs are looking good. The dr. has really minimized his daily medicines. His irritability has settled down some. He can pull himself up with little or no help... and is really trying to walk on his own. He is doing a great job!! We took him on a wagon ride, several times.. inside and outside. He loved it!! We brought in some pizza for him tonight - since he has been asking for it, just about every day since we have been here (either that or "macky-rony and cheez"). He was happy and very active tonight... he colored on his new dry-erase board and played with his race cars. Camo slept well last night, for the most part... with the exception of some piercing pains (in his "goober" - from the catheter) that would wake him up in tears :(

July 14, 2008

Camdyn's day was a good one. Starting out, we snuck in a bag of donut holes and some chocolate milk - for Camo to have a fun breakfast. He loved it! Of course, he wasn't too hungry by the time his "low potassium breakfast" was delivered from the hospital... so we discretely tossed some of it in the waste basket (to hopefully go unnoticed by the staff) to appear that he had eaten it :)
After a few times of "I tooted!" in the morning - we all began looking around for face masks... woe! Our boy is not joking around when he is ready to fill up a diaper. Wow! we won't go into too much detail, since I am sure you all have changed a diaper or 2 (hundred)... all I can say is - once it was disposed of, we had to take "that" trash bag outside of the room. Thank God for Febreeze :)
The doctor has lowered the dosage and the number of medicines Camdyn is needing each day. Our little man still has "doctoristis and nurseitis" (that is what the hospital staff says)... which is sad but true. Any meds he needs to be given, they walk in and hand to us - and we give it to him our self - after they leave the room. He has even learned how to take his own blood pressure :) How many 3yr. olds do you know can do that? :)
Camo enjoyed a wagon ride several times this afternoon and evening. He is really in great spirits.
He is trying to walk on his own... is a little wobbly, but that is to be expected. The rehab. specialist came by again today and saw him trying to walk in the play room - she was highly impressed.
The doctor said no dialysis today. So, that's great. His labs are all average... looking good!
We are hoping by the end of this week - the doctor will be able to x-ray the catheter and see that all has healed properly. If so, this would mean that he will be taken to the Operating Room to have both catheters removed. Please pray for his body to have fully healed by the end of this week. We are so anxious to have our baby home again.

July 13, 2008

Camdyn is showing great signs of improvement. The doctor came by today and told us his labs are looking good. His blood pressure is a little high, but not considered "high risk". He has a little patch on his arm that is helping his blood pressure to stay level. Camo was extremely irritable today, but seems to have gotten all of it out of his system by 10pm or so. The picture here is of him trying to walk down the hallway - outside of his room. So cute!

Camdyn needs to continue to drink as much fluids as possible. He is actually "tee-teeing" too much :) I know that sounds ironic - since that is what all our prayers have been focused on... but the dr. says his kidneys are working well - Camo just needs to drink alot (more), to keep up - so he does not become dehydrated. Please keep praying for his body to continue to heal and for his irritability to settle down. It is quite extreme - to some of us more than others - and it hurts :(
He has been through so much. Thank you again for all your encouragement and love.

July 12, 2008

Camo woke up irritated this morning... not for any particular reason at the time - just uncomfortable and tired of not being at home, in his own bed. While he was throwing his arms and kicking his legs - we noticed there was blood all over the bandage around the i.v. in his hand and blood on the sheets. We panicked! Immediately we called for a nurse, they came in and cut the bandages off from around the i.v. and at this time we noticed he had some how managed to pull his i.v. out - and this is where the blood was coming from. Camdyn was cleaned up and he calmed down a little once he was given a "cool" band aid to put on his hand. They quickly changed the sheets and replaced them with new clean sheets and pillows - we laid down together and watched "The Incredibles" (again). He has a huge selection of dvd's that we have brought up here for him, yet he insist on watching "The Incredibles" about 2 - 3 times EACH day! :/ we are hearing clips of this movie, in our sleep... but hey! it's okay! anything to keep our baby boy comfortable and happy while having to endure staying in bed almost all day and night.

The doctor came in today and told us no dialysis was needed :):):)

All his labs from the day prior, as well as today, are looking good. yipee! He is eating well and drinking plenty of fluids. He is so funny, no matter what mood he is in - or what he is doing, he does not fail to mention "I tooted!" every single time that he passes gas. Very proud of himself. By the way, he did ~not~ get that from his mommy :)

He watched the Nascar race tonight with his daddy and is about ready to fall asleep. Good night baby boy, We love you soooooooooo much!
We can not thank you all enough, for all your continued prayers!

July 11, 2008

Camo is doing much better. He had a 3hour dialysis today and sleep through most of it. He had a total of 1200 cc's today :) wow! the doctor stated that is a great number - for any child :) Camo also had a huge (3 diapers full) "poo poo". This is exciting :) He has not had a b.m. for almost a full week. (you can only imagine how quickly the room cleared out when this happened :) He is showing great signs of improvement with his kidney functions. On the other hand, the catheter he has to keep in (for a min. of 2 weeks) is really starting to bother him. We have noticed a dramatic change in our little man - with his temperament, irritability and trust (not only towards the doctors and nurses, but even towards us!) ever since the traumatic experience he had to endure - when the nurse made the mistake of ballooning his catheter in his urethra before it was inserted fully into his bladder (this was on a Thursday, before July4th - can't remember the exact date at this time). We are really struggling with this incident. It has traumatized Camdyn in many different ways. He used to love his baths (even most of his sponge baths - prior to this occurrence), now he kicks and cries until his voice is hoarse - when either mommy or daddy attempts to sponge bathe him. It crushes our insides, knowing he has been through such a terrible experience - that it has effected him this much. He is terrified when anyone walks in the rooms - unless it is close family or friends that he has seen on a regular basis. When he first arrived at the hospital, he did not care for the doctors or nurses to come in - but he was tough and he remained calm - while they did whatever they needed to do. Now, since this incident, his little body starts to shake/tremble and tears instantly begin to fall - when a doctor or nurse walk in. It breaks our heart. We are praying to not become bitter and even more angry because of this... it is just so hard to keep a positive spirit - when every single day and night - we are constantly reminded of his trust issues because of the mistake that was made, on that day. We have spoken to a few directors and they have told us this occurrence is "being reviewed" with the board of directors... not sure what will come from that... we'll just have to wait and see.
Please continue to pray for Camdyn... for his body to continue to heal and also for his mind and spirit to not be effected long term from the trauma he has experienced.
Thank you all very much.

July 10, 2008

This morning Camdyn's doctor came by and said after reviewing his labs from yesterday and over night - without being on the dialysis - are looking good... which means (you ready for this?!): CAMO GETS TO MOVE OUT OF I.C.U. TODAY!!! Oh my goodness! Thank God :)
We are now sitting comfortably (as comfortable as possible, for still being in a hospital) in our own private room, on a much calmer floor.
Camo's blood pressure is elevated and he has a bad headache (he has never once in his life complained that his head hurts... so this is a new pain for him). The nurse has given him Tylenol and blood pressure medicine to help relieve his discomfort. He has not eaten much of anything today, we think it is due to simply being exhausted. His cc's for the day today exceeded 600 :)
The dr. came by and said if a child's level is 1.0 or higher - they are pleased. Camo's level has increased to 0.7 :) we are getting there!!
He had a 2hour dialysis today and will possibly have this every day or every other day - we are not sure yet.
He is loving having his own room... (we do too! seeing as in the I.C.U. there is no privacy and the closest bathroom is down a few hallways and outside a secured area. That's a long walk - when you 'gotta go' in the middle of the night ;)
We took Camdyn on a wagon ride OUTSIDE today. He was loving this! We also took him up to the 4th floor to a wonderful play room they have created for children. (the picture attached is him in the play room.) He could not stop smiling :) He tried to stand up to reach into a large bucket of toys to pull out some big trucks - needed some help standing.. he is a little off balance. This is to be expected, seeing as he has been laying in bed for over 2 weeks straight now. This is hard for us to see, but also we are very happy and proud of him for the strength his is already beginning to show that he is regaining.
We are thanking our heavenly Father for his blessing he has shown us on our precious little man. Please continue to pray for him to gain strength and to be comforted. This is a very trying time for him... he is so ready to go home (tells us this over and over, several times a day).
Thank you all again for your prayers!

July 9,2008

Today has been a pretty good day... a few irritable moments (morning time and sponge bath time), but that's okay!! His lab results from being on the dialysis overnight - were great! since the numbers were all looking good, he did not have to be on a dialysis at all today (unless his labs from mid-day reflect a negative change). His color looks good and he has very minimal (if any) swelling in his face or body.


The nurse came by around 3pm and stated all the labs are looking the same or a little better (yay!)... so our little man did not have to be on a dialysis at all today :)


It is currently almost 8pm and Camdyn's "CC's" are already up to 269!! woo-hoo!!!


He is smiling and laughing - while playing with his Batman's right now and is acting very much like the Camdyn we all know... so great to see this! very, very encouraging.


We are going to "attempt" to tuck him in, sing our songs and say our prayers by 9:30pm... Please pray for a much needed good nights rest for Camo. He was not able to get much good sleep during the day today.


Thank you all for your prayers. We are beginning to see some wonderful answers :)

******************************UPDATE *********************

Camdyn's kidneys produced a significant amount today :) total for July 9th is 529 cc's!!!!!!

July 8, 2008

Good day to everyone! by the way... what day is it?! just kiddin' ... (but the days sure do seem to all run together - while sitting here in the same I.C.U. room every day). Camdyn had a really good nights rest and woke up fairly happy and ready to face the day. His potassium was low enough this morning, that the dr. said it was not necessary for him to be on the dialysis today. Although, the dr. did order labs to be drawn every 4 hours - to check on Camdyn's levels. We took Camo on a wagon ride today for a few minutes. He is sleepy today and has mostly wanted to just lay in bed and nap.
Around 3:00pm - Camo's labs came back reflecting a high count of his potassium level - so! back to the dialysis machine we go... he will be on the dialysis for 10hours.
It is early afternoon at this time and his urine level for the day (so far) is 115cc's! very exciting!!
will update again asap...

******************* UPDATED ****************
Camo's grand number of cc's for Tuesday is 279 cc's!!!!!!!!!!!!!!!!!!!!!!

July 7, 2008

Today was a good day. It has been mostly uneventful - and we love that! Camo had a 5hr. dialysis treatment today. His labs today show that his potassium level has come down a little... that is great!!! He is currently up to 48 cc's for the day and counting :)
He looks a million times better already. His face and body are no longer noticeably swollen. The dr. is hoping we can move out of the I.C.U. by the end of this week.

****** UPDATED @ 10pm:
Camdyn's kidneys are showing off today - he now has a grand total of 65cc's :) yipee! He played with his new Lego's tonight. When we put him to bed and tucked him in - this is the first night since we have been in the hospital that he has asked about doing our nightly bedtime songs and prayers. So precious :) Our hearts are overjoyed!!

We know we say this each time, but we mean it with all of our hearts... THANKYOU for all your prayers, love and encouragement. Have a good night.
Good night and Sweet dreams to you, baby Camo :)

July 6, 2008

Camo is soo happy and in such a great mood this morning :) He had a pretty rough night last night (extreme irritability, caused from a number of things: the disease, exhaustion and ready to get of this bed!)... but it's okay because we would be the same way! He had a GRAND TOTAL of 50 cc's of urine yesterday (Saturday)! Yipee!!! Thank God!!
We gave him a (much needed) sponge bath this morning... and he loved it! We have a really sweet nurse, who really seems to give Camdyn some extra T.L.C. :) we placed a favorite truck of his in the bath - to help entertain him (it worked!). He cleaned his truck, while we washed him. He is squeaky clean now and smells like a fresh baby :) he is so precious.
His nurse noticed he had gobbled down all of his breakfast (waffle sticks and scrambled eggs) already this morning, so she requested a 2nd order for him... it just arrived and he is eating away. So wonderful to see he has his healthy (hefty!) appetite back :)
The dr. has ordered for a 10hour dialysis again today. The nurse is getting an early start, so hopefully later this day he can be finished and able to go for a wagon ride. He loves to do that!
His vitals seem to be steady... the only main concern (in addition to his kidney's) we have at this time, is that his Potassium is high :( He is on a low Potassium diet (which he is not too fond of - since it does not include his favorite food: "Macky-roni and cheese"), but we are hoping it will start to help and turn around to reflect a lower count asap.
will update again later today. Thank you again -sooo very much - for all of your prayers!!! We can not express our thankfulness enough! with love...

July 5, 2008

Camdyn had a good night last night, with the exception of some intense tummy ("belly button") pains... after a couple of x-rays, the conclusion was that he is experiencing gas pains. He slept well all night and ate a quite a bit for breakfast. The ~wonderful~ news is this: we checked his urine level from only what has accumulated since the morning shift nurse has collected - Camo is already at 15cc's :) woo hoo!! We were soo thrilled to here this!!
Camdyn was up for a wagon ride - so we showed him around the hospital. He loves to ride in the "alligator" (this is what he calls the 'elevator').. so we went up and down (... and up and down again :) he had a great time... this lasted about an hour then he was ready to lie wn again.
The dr. has Camo on a 10hr. dialysis today and 10hr.'s on Sunday as well. If all goes well, we may be moving off the I.C.U. floor and back up to the 3rd floor (the "kidney kids" floor) on Monday or Tuesday :)

4th of July

Good morning so far :) Camo slept almost 8 hours last night. Also, a huge answer to all of our prayers is that he had a few drops of urine in his catheter bag!! yea!! it's not much, but it's a start.. we'll take it! also, around 5:30a.m. he had a poopy diaper! we gave him a sponge bath and he went back to sleep for a couple more hours. He just woke up craving "Cheetos" :) silly boy.
Last night the dr. stated he did not have to stay on dialysis over night and in the morning he will be re-evaluated. so! we will keep you posted when we get an update.
Today has been a good day. His vitals look pretty good. His potassium is low and is now on a low-potassium diet. Camdyn just completed 8 hours of dialysis and is now getting ready for a wagon ride. We are able to take him to a location in the hospital that has large windows, and he will be able to watch the fireworks :) fun!
He has a total of 5cc's of urine today. Not much to most - but HUGE for us :)
We hope you all are having a great 4th of July weekend. Good night.

July 3, 2008

Camdyn had a great night, did not wake up once. He slept peacefully until around 7;15a.m. :) he still has a dry pull-up on, so no sign of the lasix working just yet. They have told us this morning that instead of every 8hours, they will be giving it to him every 6hours. The dr. is becoming a little more aggressive with trying to help give Camdyn's kidneys a 'jump start'. If he does not tinkle on his own today, the dr. stated he most likely would insert a catheter on Friday, in hopes of releasing any urine that may be in his bladder. So! at this time, we are still desperately praying that his body begin to work on its own...
We will continue to update you later this evening...
much love!

We have had a traumatic occurance this morning while inserting the catheter. The nurse (and student nurse >:( have possibly punctured the bladder or the urethra. When the catheter was inserted, a small amount of urine came out (yea!) but all of the sudden - blood began to protrude from him (down there).. not through his catheter, but around it. It was immediately pulled out. We instantly knew something was seriously wrong. The dr. came in and the nurses, and were offering their apologies :/
We will not know for sure until he is x-rayed. In about an hour, the dr. that performed Camo's initial surgery, will sedate Camdyn and insert a dye into his "goober" (that is what Camo calls it) to see where the damage is and to what extent. Once this is determined, then we will know what the next step is.
tbd.

After 2 unsuccessful attempts from the dr. to insert the catheter, while Camo was lightly sedated - they decided to fully sedate him and take him to the O.R. for the procedure. After about an hour (felt like 5hours!) the dr. came out of the surgery area with good news. The catheter was in place and they actually saw some urine in Camdyn's bladder. This is good! This means the kidneys are trying to start functioning.

After the sedation wore off and a short nap... he woke up in a great mood with a even better appetite! The doctor said his mood was because his central nervous system was making progress! So hopefully tonight we will have tinkle, poopoo, and no more mishaps! Tomorrow should be a great 4th of July!

Good night and Sweet dreams baby Camdyn. We love you soooooooooooooo mmmuch!

July 2, 2008

This morning Camdyn woke up hungry and in good spirits. He ate all his eggs and 1/2 a pancake.. and drank 240ml of juice. Great news! the nurse came in and told us the dr. says he is allowed up to 1,000ml now :) Also, the surgeon (that performed his surgery) came by to look at the irritation Camdyn has been complaining about on his neck. He says it does not look infected, which is wonderful. He stated he will have a nurse take off the old dressing and place a soothing ointment on it and replace with a new bandage. We tried to give Camdyn a sponge bath this morning - but he became quickly irritated, and we had to stop short of giving him his full bath. He is just so exhausted. He has slept more today than he has been awake. Which is good for him... he needs the rest. The dr. just came by and said he is going to give Camo an injection in his i.v. of lasix. This should encourage Camdyns kidneys to begin to work again, which means he will tinkle. The dr. says to not be disappointed if this does not work immediately. Sometimes, it can take several dosages (which can only be given once every 8hours). Please pray!

This afternoon, Camdyn was given another dosage of lasix... since the first go 'round didn't work. The dr. said for us to not be discouraged, this is not uncommon to take a while before helping the body to "tinkle" on its on. Camo was craving quesadilla's today, so his daddy picked up some on his way back to the hospital :) he ate about 1/2, which is great!

The nurse had been by this evening to replace the old bandage from the incision (on his neck, from the surgery). She placed a topical cream on it and is letting it 'air dry'. This seems to have really given Camdyn some relief. He didn't feel up to eating any dinner tonight, but was in great spirits.

Camo was really exhausted tonight when it was time to go to sleep, but after about 15 minutes of fighting it... he was out like a light.

Have a good night sweet baby, you remain in our prayers and thoughts each day and night. We love you with all our heart and soul. You are our world and we are right here with you, every step of the way through this. You are a blessing to us. We thank God each day for blessing our lives with you. We love you infinite (and beyond!!!) :)

July 1, 2008

Today was a good day overall for our little Camo. He has slept most of the day. He ate almost all of his pancakes and eggs for breakfast, but not much lunch. The dialysis machine clogged (which is normal after running continuously for over 50hours)... so the nurse unhooked Camdyn from the dialysis machine and we laid him down and took him for a wagon ride. He laughed when daddy bumped the wagon into the wall :) This was a wonderful feeling for Camo - since he has been constantly hooked up to the dialysis machine, and blood pressure glove on his arm, and the bandage wrapped around his little finger, to keep an eye on his oxygen level.. he also has to stay laying on his back - which is not easy, for a tummy sleeper. When the dialysis machine was being unclogged and setup to restart (about a 2hr process) , the nurse inserted a medicine into Camdyn's i.v. to unclog any possible blood clots that may have occurred.. just as a precautionary measure. He has had pretty good spirits today. The only change in a report from the labs for the day - is that his potassium level is low, but not so low at this time that he will need a 4th blood transfusion, yet. Camdyn had spaghetti for dinner - and ate it all! even had some of a sugar cookie for dessert. He has only been allowed @ 700ml of juice a day (which for those of you who know him, know this is a challenge - considering how much he ~loves~ to drink!!).. hopefully soon he will be allowed to have a little more. We saw about 10minutes of "our Camdyn" today... meaning- he laughed and played a little and showed his sweet, happy personality to us. We don't see much of this these days, due to the cruel symptoms of the disease. It has made him extremely irritable. Camo is ready for bed now, seems to be dozing off peacefully. I know this may begin to sound redundant, but we can not thank you all enough for all of your prayers and love. This has really been a difficult time for mommy and daddy to see our baby suffering, and not be able to 'fix it'. We desperately wish we could take his pains away and have it placed on us instead. It breaks our hearts over and over each day, when Camdyn tells us his tummy hurts, and that he just wants us to hold him and walk around.. he keeps saying - he wants to go home.. and he wants his bed. He is such a sweet baby and so tender hearted. We talked to him about going to the Zoo, Chuck-E-Cheese and 6Flags.. he just sadly looks at us and says " I just want to go home". There has not been nothing in our life that has made us feel as helpless and desperate - as this. We know our family and close friends feel the same. I know the prayer request initially sounds silly, but please pray for Camdyn to be able to to "tinkle" on his own. This would mean his kidney's are functioning again, on their own. Then we can take our little man home. Also, please pray for Camo to feel comforted and at peace, as well as for the internal pains to subside.
Thank you so much. We are going to try to get some rest now. With love...

June 30, 2008

Today was a pretty good day. Camdyn slept more of the day, than he was awake (which we are happy for him to be getting his rest, but so sad we have very little awake time to play with him and talk to him). Camdyn ate a few bites of pancakes and eggs for breakfast (a little more than the day before... so that's an improvement!). He didn't have much appetite for lunch. Although when he woke up around 4pm - our little man was craving pizza! so, he had a slice of pizza for dinner. He has been keeping most all of his fluids down. Still we have not seen any tinkle or b.m. in his diaper. The rough spot of the day was this evening. We decided to give him a sponge bath, to help relax & refresh him - while the nurses placed new sheets on his bed. He was less than thrilled to be given a bath right then, he really just wanted to sleep. While we were finishing up with his sponge bath - the nurse looked at the area on his chest where the catheter is (from surgery) and she stated we needed to take the old bandages off an replace them.. to avoid any infection. Camdyn was miserable while the nurse was struggling to pull away the taping/bandages from his sensitive skin. We know it was hurting him - we could almost feel the pain as well. His little face was bright red, an tears were flowing. He was squeezing mommy's fingers as tightly as possible. Once the bandages were finally replaced with new ones - he started complaining about how badly his neck hurts. We look at it, and can see why! The incision the dr. made to insert the catheter into his neck - had a small bandage over it (used to be white, now was mostly dark reddish black) and on top of the small bandage is a larger bandage - almost like a waterproof tape. We looked closely at this area and began to become quickly concerned. It looks as if it may be infected? it is bright red around the incision and seems to be worsening. We showed the nurse who called a dr. in to examine. He stated we needed to give him an antibiotic tonight, in case it is becoming infected (he also mentioned it could just be serious chaffing on his neck from the constant movement he makes). He can not take the bandage off because he is not a surgeon. A surgeon has been requested to come to our room in the morning to further examine. Please pray this is nothing but sensitive skin needing a little TLC. We hope no infection has begun to set in.
Thank you again for all your love, time, efforts and prayers. We love you and thank you for showing such great love to us and our little Camdyn Michael Racer Slack :)

June 29,2008

We were moved from the 3rd floor down to the 2nd floor - which is also known as I.C.U.. the doctors feel like this is best for Camo.. since his vitals have not shown any improvement and his blood pressure has risen. Camdyn is now on a 24hour dialysis and he has been given 2 blood transfusions today. This is in hopes to increase his red blood count - to improve his oxygen level (it dropped to 43!!! should be between 95-100). He hated the oxygen tube placed in his nose, but we explained to him he needs to keep it in, so he can feel better soon. He is so darn sweet. He trusts us and simply says"okay". It breaks our heart now, every single time a nurse comes in - Camdyn asks her "you going to hurt me?". Most of the time they are only coming in to check vitals..which does not poke or stick anything in/on him.. so most of the time they can simply explain what they are going to be doing - and that they promise this won't hurt. Each nurse has been wonderful. Very attentive and kind.
He ate for the first time today, since (6/20). He had some mac-n-cheese and jello. yea!! still no "tinkle" yet though :(
Camdyn had another extremely emotional incident this evening... lasting almost 2.5 hours. His nose was bothering him so badly that he almost rubbed it raw.. he could not stop scratching all over his head and tummy.. and his eyes became so swollen he could barely see us. He was more irritable than we had had ever seen before. We asked the nurses to explain to us all the medicines they had recently given to him.. and one of the medicines was a pain medicine semi-related to the codeine family. Needless to say, we panicked!! the nurses quickly gave him benadryl and a sedative.. it took a little while for this to kick in but once it finally did, Camdyn was so exhausted and overwhelmed - that he passed out.

Thank you again for your prayers. We greatly appreciate it.

June 28,2008

We have a 3hour dialysis scheduled for this morning at 9am. Before the dialysis, we gave Camo a bath. He loves water so much - we knew this would feel good to him, and hopefully relax him as well. Camdyn did well through the dialysis process today; they were able to take out a little more fluid that he has been retaining. When he came back from the dialysis.. he was almost acting like the fun little Camdyn we have always known. He stood up and tried to walk (for the first time since Tues.,6/24).. we needed to hold his hands while he took a few steps, but that's okay! at least he is walking :):):) We took him for a ride around our floor in a wagon - loaded with lots of blankets, pillows and toys.. he liked to have daddy or whomever was pulling him in the wagon - to "race" others walking down the hallways. He took "1st place" every time :)

Camdyn had a good day today until we noticed something odd. Mommy was lying in bed next to him - while he napped.. and after sleeping a little over 3 hours.. he would open his glazed over eyes and reach out into midair and try to say something. We briefly thought he was just in a really good deep sleep.. but then began to worry when both mommy and daddy tried to sit him up and talk to him - and he could not focus his eyes on either of us. He even had a hard time holding up his own head. We immediately called for the nurse, who rushed over to our room. By this time, Camo had been acting delirious for almost 2 hours. We followed the nurses who took him down to the 2ND floor - to have a Ct Scan and X-rays.

Nothing extremely out of the ordinary appeared on the x-rays or scan.. which was good.. but the blood samples showed a very low blood count. This worried us quite a bit, since the red blood cells carry oxygen. The dr. told us he wanted to start a dialysis in the morning for at least 24 consecutive hours.

Camdyn slept okay this night.. but did require a sedative and some children's Tylenol for discomfort. Still hard to believe that our sweet angel baby Camo is here - in the hospital. We know we are at the very best possible hospital for our child. The doctors and nurses have been fabulous. Thankfully we all (family an friends) live nearby.

We thank you again for all your continued love and most of all for your sincere prayers. We need it!

June 27, 2008

This morning we were moved from the 4th floor (the '23 hour observation floor ) to the 3rd floor, since we were now admitted...
Camdyn was able to sleep quite a bit today. His little face and entire body has swollen a considerable amount.. due to all the fluids his body is retaining (since his kidneys are shut down - he has not been able to "tinkle" since last Tuesday 6/24). At times he has barely been able to open his eyes. His body needs alot of down time - just to rest and try to recoup.
He had lots of visitors come by to show their support and love. Thank you to all for the fun balloons, pretty flowers and cute toys that have been brought/delivered. Camo is too cute - when he has a gift bag in his lap.. he is so excited to pull out the tissue paper and see what his 'prize' is. He is just as excited to find a little $0.50 toy, as he is a $$$ toy. He is so precious and so sweet. He has been through so much already, and still does not hesitate to give kisses and tell you he loves you sooo much!
Tonight was a nightmare :_( It all started around 5pm... we noticed Camdyn's eyes were extremely puffy and he could not stop scratching his little nose and his head.. something was really driving him crazy. We immediately concluded that these symptoms were a result of a severe allergic reaction to Tylenol codeine. We called the nurses into our room - to check his condition. After calling the dr. to explain his symptoms.. the nurses brought in a medicine to place in his i.v. that should reverse the effects of the Tylenol with codeine he had been given earlier in the day. As soon as the doctor walked in to check on Camdyn - the nurse inserted the medicine, Camdyn immediately vomited and became extremely irritable and restless. Camo's mommy and daddy had to physically hold him down and give him a tight bear hug.. until he finally settled down.
The doctor scheduled an immediate Ct Scan and blood to be taken, to send to the labs. We waited about an hour and the nurse came in to let us know the Ct Scan was normal and the blood samples were unchanged (no better or worse). All of Camo's symptoms were caused from the codeine in the Tylenol. So! no more of that will be given to him, ever again.
Camdyn fell asleep around 11pm simply from pure exhaustion.

June 26, 2008

Surgery was scheduled for 7am today, then was changed to 8am. Fortunately, several of our family members came in to the hospital to sit with us in the waiting room. The love and support was much needed. We gave Camo "XO's" and then the sedative kicked in and he fell into a deep, comfortable sleep... it was surgery time now. This was such a scary time... to just sit and wait... the nurse had told us they would call the waiting room to let us know that they had started the surgery.. and would call again to let us know the surgery was complete. We waited and waited for the first call - to let us know the dr. had begun... after over an hour they finally called the waiting room with an update - the surgery had been successfully completed.

Camdyn came out of recovery very well and really has been such a trooper. He is a tough little cookie :)

His first dialysis was scheduled for this afternoon. The dr. initially requested this first dialysis to be a 3 hour process... but once he had completed about 2 hours.. the dr. decided that was enough for his first day.

Camo rested on and off for this rest of this day.

June 25, 2008

This morning we were admitted into a hospital room on floor5 (the "23hour observation floor) at @ 5am... Camo had only slept a total of 5 hours in the past 24hours.. he was extremely tired. The nurse woke us up (after only sleeping about 1.5 hours), the doctor had ordered additional x-rays and an intense sonogram for him. The doctor had requested the sonogram, due to Camdyn having complained for several days and now non-stop of his belly button (that is what he refers to, when speaking of his tummy) hurting. He really seemed to be in severe pain at this time.
At this point, Camdyn had not eaten anything since the previous Friday (June 20th).. and almost every time he would drink, it would immediately be thrown right back up.
With these symptoms, all the doctors and nurses seemed to be convinced that Camdyn had Gastroenteritis. It was only later in the day, after reviewing recent labs that the doctor came in to our hospital room and told us the bad news...
The radiologist reviewed the x-rays, and found that Camdyn's large and small intestines as well as his kidneys were enlarged. This is not a symptom or sign of Gastroenteritis. The doctor came in to our room and began to explain to us that this is a much more serious situation. He told us that he would be sending in a kidney dr. to our room, to talk with us.
A few long hours of waiting for the news.. a kidney specialist walked into our room and explained the following... Camdyn has been diagnosed with Hemolytic Uremic Syndrome (also known as HUS). He told us that more than likely, this was caused from exposure to E.coli and that this had caused his kidneys to completely shut down. We, of course, were heartbroken to hear our angel had been diagnosed with such a painful and cruel disease. There is not any way to pinpoint where he picked up the E.coli; it could have been from a lake or pool.. or from some foods he had eaten - any time within the past 3-4 weeks. There is no known cure for this disease. We can only hope and pray that his body can regain full function again of his kidneys, on his own.
The dr. told us that he had scheduled a surgery for Camdyn the following morning (6/26) to insert a catheter, which would allow for dialysis.
Needless to say, this was a very restless and tearful night..

June 24, 2008

This morning Camdyn was taken to the hospital - due to possible food poisoning. He had been sick (diarrhea & vomiting) for a couple of days by this point. This morning we checked him in the emergency room around 8am and the dr. placed an i.v. in him - due to slight dehydration. The dr. dismissed us around 2pm to go home. Camdyn slept for about 3-4hours and woke up with the same symptoms. We immediately knew something was more serious than we originally had suspected. We took him back to Cook's at 9pm and after waiting for a few hours we were taken to an outpatient room and they inserted an i.v. to begin hydrating him again and took a few x-rays. After the dr. reviewed the x-rays and blood tests from the lab, Camo was admitted around 4am, Wed. 6/25.