Hello Friends and Family,
Not too much to update on quite yet. They rounded today and we will have a consult with the cardiologist and then they will have conference about him after that so that we can look and see what the big picture holds in store for him.
I have pictures to post on the other computer. I will try and get those up tonight or tomorrow. He has been playing a lot with his toys and seems to be more cheerful. Friday was a really bad day for him as he was having some pretty serious withdrawals. They have decided to not be so aggressive on his weans and see if that helps.
I just wanted to let you all know that he is doing well. Getting better and stronger. As soon as he is off the drips we will be able to hopefully concentrate on his heart.....isn't that we came here for in the first place? :)
Love,
Leah
Monday, July 14, 2008
Friday, July 11, 2008
Friday
Can you believe that yesterday was exactly 6 months since Joshua underwent his first lifesaving surgery! I was very excited to share his half birthday with him on the 4th of July but that is something that we do with all our babies. Not many have such a big milestone to celebrate! I am humbled at the thought that without that happening our precious little son wouldn't be here with us today. A very emotional thought.
So, how is our little miracle? Today has been a great day! :) When I got here he was very happy to see me and wanted kisses!! WHOO HOO It was awesome. He was looking at me smiling and reaching at me with his little mouth wide open just like a bird. I have been telling him that he owes me a 150 to make up for all the time when he was on the vent and I couldn't get kisses from him. Today he repaid me....several times. It was so nice to have him back to semi normal. He has been playing with his toys and just generally enjoying his awake time. He also has been flirting with his nurse. She is also has very dark hair. I am telling you my prediction is that he will be attracted to the dark haired girls!! Not that he hasn't had smiles to share with the lighter hair colored gals. :)
He had an echo today and we are still waiting on the results. They are increasing his caloric intake because he is not fattening up as well and as fast as they would like. He hasn't really gained any weight in the last 10 days or so. They upped his Captopril to 1.5 today. They just started it back a couple days ago. A little wean on the Ativan but not a whole lot. He spiked another fever this morning so they are keeping a watchful eye but no ideas as to what is causing it. He physically looks much better than he has in weeks.
My family will be heading this way soon. I am so excited to see them. Please pray for safe travel for them.
Enjoy your weekend and make sure to take time to thank the Lord for all that He allows us to experience.
Love and Blessings,
Leah and Joshua
So, how is our little miracle? Today has been a great day! :) When I got here he was very happy to see me and wanted kisses!! WHOO HOO It was awesome. He was looking at me smiling and reaching at me with his little mouth wide open just like a bird. I have been telling him that he owes me a 150 to make up for all the time when he was on the vent and I couldn't get kisses from him. Today he repaid me....several times. It was so nice to have him back to semi normal. He has been playing with his toys and just generally enjoying his awake time. He also has been flirting with his nurse. She is also has very dark hair. I am telling you my prediction is that he will be attracted to the dark haired girls!! Not that he hasn't had smiles to share with the lighter hair colored gals. :)
He had an echo today and we are still waiting on the results. They are increasing his caloric intake because he is not fattening up as well and as fast as they would like. He hasn't really gained any weight in the last 10 days or so. They upped his Captopril to 1.5 today. They just started it back a couple days ago. A little wean on the Ativan but not a whole lot. He spiked another fever this morning so they are keeping a watchful eye but no ideas as to what is causing it. He physically looks much better than he has in weeks.
My family will be heading this way soon. I am so excited to see them. Please pray for safe travel for them.
Enjoy your weekend and make sure to take time to thank the Lord for all that He allows us to experience.
Love and Blessings,
Leah and Joshua
Wednesday, July 9, 2008
Wednesday Night
No changes to really tell you about. He still remains in isolation. I am really thinking he does NOT have Rotovirus. He hasn't pooped since 6 am this morning which was BEFORE they ordered the stool sample. So if no poop by 6 am we will be out of isolation anyway. He seems to be feeling better but my mommy senses tell me he has a belly ache. He has received 3 Tylenol suppositories and numerous rectal temps in an attempt to collect something....but he is not letting go of it.
Other then that sats are nice and stable, no fever, great heart rate....what more can we ask for. :) Oh he has really started to enjoy his Binky again.
We also took him out of his wedge for a while. He is LOVING it. Here is a nice picture of him totally relaxed and loving life.
There is a new slide show at the bottom of the page. Enjoy.
Good night!
Leah and Joshua
Other then that sats are nice and stable, no fever, great heart rate....what more can we ask for. :) Oh he has really started to enjoy his Binky again.
We also took him out of his wedge for a while. He is LOVING it. Here is a nice picture of him totally relaxed and loving life.
There is a new slide show at the bottom of the page. Enjoy.
Good night!
Leah and Joshua
Wednesday>>>And here we go AGAIN!
So we are in a new room now. I believe 4270. Joshua is pretty sick again. High fevers. They took cultures and are even going to culture his poop since everything looked fine last time. They turned back up his drips (ativan and dilaudid) because he is super cranky and restless. Last night we just thought the wean was bad and he was having withdrawals....we were 1/2 wrong. It appears that he was also getting sick (AGAIN). Back to the old contact restrictions. (Mask, gown and gloves) UGH
But I find comfort in knowing that Friday I will be joined by James, Trevor and my parents. It will be so nice to not be alone for a while.
Please pray for all our health. Joshua to get better and for me to not catch it. We kissed and loved on each other a lot last week. I feel fine so far but I don't want to get sick and only be able to have limited contact.
But I find comfort in knowing that Friday I will be joined by James, Trevor and my parents. It will be so nice to not be alone for a while.
Please pray for all our health. Joshua to get better and for me to not catch it. We kissed and loved on each other a lot last week. I feel fine so far but I don't want to get sick and only be able to have limited contact.
Tuesday, July 8, 2008
Tuesday Update
Boy time is really getting the best of me.
Joshua is still about the same. He is spiking fevers and is SO cranky! The fellow today is going to check his ears, thanks to Sabrina's mom. We talked about it last night and I wasn't there for rounds so she said something to them. Misty and I have become rather close with all our late night chats. Nice to have someone to talk to when I am sitting there staring at the walls. :)
Still no plan for him. The exact phrase from Dr Mazor yesterday was, "I don't trust this kid....". He is so unpredictable. It doesn't sound like we will be going anywhere for a while. We pulled labs and there doesn't seem to be any bacterial infections. Maybe something viral. His eyes and nose are all crusty again. Came right back after the antibitics stopped. UGH.
Good news....well for me anyway! :0) My mom and dad are coming up this weekend. My dads first appointment is Monday. I am hoping that James and Trevor will be able to join them. YEAH!!
Joshua is still about the same. He is spiking fevers and is SO cranky! The fellow today is going to check his ears, thanks to Sabrina's mom. We talked about it last night and I wasn't there for rounds so she said something to them. Misty and I have become rather close with all our late night chats. Nice to have someone to talk to when I am sitting there staring at the walls. :)
Still no plan for him. The exact phrase from Dr Mazor yesterday was, "I don't trust this kid....". He is so unpredictable. It doesn't sound like we will be going anywhere for a while. We pulled labs and there doesn't seem to be any bacterial infections. Maybe something viral. His eyes and nose are all crusty again. Came right back after the antibitics stopped. UGH.
Good news....well for me anyway! :0) My mom and dad are coming up this weekend. My dads first appointment is Monday. I am hoping that James and Trevor will be able to join them. YEAH!!
Oh MORE GOOD NEWS!! APS did the raffle for the airline tickets last week. the winner.....
ANNA MARIE LEDER!!!
Congratulations Anna Marie!
I want to thank all of you who bought and sold these tickets. The money from the fundraiser has been a real blessing to our family and our little Joshua.
Sunday, July 6, 2008
Saturday Night....YIKES
I see that my last post was Tuesday! Sorry.....I didn't realize that it has been that long. I have been in a little funk. Lots of things have been going in lately.
I bet you are all wondering how the little man is fairing, aren't you?
Well, I can say as of this moment, very darn good!
He has had some ups and downs since Tuesday but no major setbacks. He just felt icky again. Dr Baden came in and talked to me on Friday. He just said that Joshua has hit a plateau and until he gets a little better or a little worse, we are just going to have to hang out. He assured me that we would not be rushed out to the floor. Dr Baden wants to keep a close eye on him. I am TOTALLY ok with that. :) Today he is better than he has been all week. His sats have been hard to keep under 85-90 with the oxygen from the cannula and the cpap. He is still getting tired breathing so taking him off completely is not an option. He was off for about 6 hours today and did just fine but we put him back on for the night so he could get a good rest. He hasn't been too bothered by the cannula's. Tim, his RT the last few nights, has really been able to get that thing on him and not upset him!! That is talent. Words that I hear when other RT's have tried to get the mask on are strong, difficult and temperamental. :)
So, I have been referring to Joshua as my yo-yo son. This week we have dealt with a myriad of issues; racing heart, low sats, spiked fever, low blood pressure, high blood pressure, lots of urpiness (if that isn't a word....it should be), gas, constipation, little urination, very wet lungs, some withdrawal symptoms, back in a wedge (which he doesn't like)....I think that about sums it up. Tonight, he is doing spectacular and may even come out about even on his fluids!
I bet you are all wondering how the little man is fairing, aren't you?
Well, I can say as of this moment, very darn good!
He has had some ups and downs since Tuesday but no major setbacks. He just felt icky again. Dr Baden came in and talked to me on Friday. He just said that Joshua has hit a plateau and until he gets a little better or a little worse, we are just going to have to hang out. He assured me that we would not be rushed out to the floor. Dr Baden wants to keep a close eye on him. I am TOTALLY ok with that. :) Today he is better than he has been all week. His sats have been hard to keep under 85-90 with the oxygen from the cannula and the cpap. He is still getting tired breathing so taking him off completely is not an option. He was off for about 6 hours today and did just fine but we put him back on for the night so he could get a good rest. He hasn't been too bothered by the cannula's. Tim, his RT the last few nights, has really been able to get that thing on him and not upset him!! That is talent. Words that I hear when other RT's have tried to get the mask on are strong, difficult and temperamental. :)
So, I have been referring to Joshua as my yo-yo son. This week we have dealt with a myriad of issues; racing heart, low sats, spiked fever, low blood pressure, high blood pressure, lots of urpiness (if that isn't a word....it should be), gas, constipation, little urination, very wet lungs, some withdrawal symptoms, back in a wedge (which he doesn't like)....I think that about sums it up. Tonight, he is doing spectacular and may even come out about even on his fluids!
On the plus side we have spent several hours cuddling. I hold him and he just sleeps....probably some of his best rest.
They are going to talk about him at conference on Monday. Hopefully, we will get some sort of plan.
They are going to talk about him at conference on Monday. Hopefully, we will get some sort of plan.
I will get better about posting, I promise!
Tuesday, July 1, 2008
Tuesday Night
Few steps forward....few steps back......
Well it has been an interesting day. First I will tell you that I got to HOLD JOSHUA! The nurse this morning couldn't help herself and actually held him at the beginning of her shift....but I got to hold him....I may not have been first....but we snuggled. ;-) He also had plenty of smiles to dish out to Auntie and Uncle today when they stopped by.
So to start the day:
*The Dopamine was stopped
*Feeds back up to 33 cc's
*Arterial line~GONE
*They were going to take him off of the Ativan and Dilaudid drip today but have since changed their minds.
*He was held for a while. Proceeded to puke mucus all day.
To wrap up the day: :-(
*Fever spiked again
*very urpy
*Low O2 sats
*high heart rate
*fast breathing
~*sigh*~
So what does this all mean? We are not too sure. Lynne (the fellow tonight~who, like the rest is fabulous) is determined to find answers. Chest x-ray, cultures of blood and urine, look at kidneys, basically the whole works. Looks like he will need to go on C-PAP for a while to help him breathe a little easier. Many times this is used between coming of the vent and breathing on their own. The hope is that he will rest most or all of the night and feel like a million bucks tomorrow! :) Realistically, we will take semi calm. He has been resting nicely since I got back from supper.
So now for the prayer request portion of the night :)
1) My dad saw the Dr today. They are going to start with radiation. Please pray that absolutely ALL of this cancer is contained in the tumor in his eye. We found out while this is a slow type of cancer (contained) if any of it metastasized than it is VERY aggressive and we wouldn't have much time left with him here.
2) Secondly, the baby that Joshua is sharing a room with and her family need lots of prayer. Baby is Sabrina, (Mom (Misty), dad (Ken) and 3 brothers (Shane, Shawn and Chase) Their baby is really struggling. She is about 6 weeks old it was determined today, on their wedding anniversary, that there is not much more that medicine can do for her. Please pray that they can find comfort in knowing the Lord has a plan for them and their baby and that they can find strength in Him to to handle all that they are going through. (So yes mom and dad...there was a reason that we had to share a room. I bring to them my optimism for life and living, I told Misty to love on her and build as many memories as you can in the precious time that you have AND of course to just pray for a miracle. Certainly a time of prayer over hope. For me it was reassurance that there is always a plan for the things that happen, even something as small as changing rooms, always a plan. It also puts me in check, that even with the severity of Joshua's issues, we are blessed there is confidence that he can heal and be "fixed".)
3) And of course a prayer for health for out little Joshua. He has certainly had ups and downs.
Love and blessings to you all. I will update tomorrow as we find out more.
Leah
**Update (already~Lynne likes to work fast :)) His lungs are very wet and are showing area's of collapse. They are setting him up on the C-PAP machine and increasing his diuretic. He is about 1/2 liter positive as far as fluid goes for the day. Probably not moving to the floor tomorrow.
This is from earlier today when he was sharing time with Auntie and Uncle.
Well it has been an interesting day. First I will tell you that I got to HOLD JOSHUA! The nurse this morning couldn't help herself and actually held him at the beginning of her shift....but I got to hold him....I may not have been first....but we snuggled. ;-) He also had plenty of smiles to dish out to Auntie and Uncle today when they stopped by.
So to start the day:
*The Dopamine was stopped
*Feeds back up to 33 cc's
*Arterial line~GONE
*They were going to take him off of the Ativan and Dilaudid drip today but have since changed their minds.
*He was held for a while. Proceeded to puke mucus all day.
To wrap up the day: :-(
*Fever spiked again
*very urpy
*Low O2 sats
*high heart rate
*fast breathing
~*sigh*~
So what does this all mean? We are not too sure. Lynne (the fellow tonight~who, like the rest is fabulous) is determined to find answers. Chest x-ray, cultures of blood and urine, look at kidneys, basically the whole works. Looks like he will need to go on C-PAP for a while to help him breathe a little easier. Many times this is used between coming of the vent and breathing on their own. The hope is that he will rest most or all of the night and feel like a million bucks tomorrow! :) Realistically, we will take semi calm. He has been resting nicely since I got back from supper.
So now for the prayer request portion of the night :)
1) My dad saw the Dr today. They are going to start with radiation. Please pray that absolutely ALL of this cancer is contained in the tumor in his eye. We found out while this is a slow type of cancer (contained) if any of it metastasized than it is VERY aggressive and we wouldn't have much time left with him here.
2) Secondly, the baby that Joshua is sharing a room with and her family need lots of prayer. Baby is Sabrina, (Mom (Misty), dad (Ken) and 3 brothers (Shane, Shawn and Chase) Their baby is really struggling. She is about 6 weeks old it was determined today, on their wedding anniversary, that there is not much more that medicine can do for her. Please pray that they can find comfort in knowing the Lord has a plan for them and their baby and that they can find strength in Him to to handle all that they are going through. (So yes mom and dad...there was a reason that we had to share a room. I bring to them my optimism for life and living, I told Misty to love on her and build as many memories as you can in the precious time that you have AND of course to just pray for a miracle. Certainly a time of prayer over hope. For me it was reassurance that there is always a plan for the things that happen, even something as small as changing rooms, always a plan. It also puts me in check, that even with the severity of Joshua's issues, we are blessed there is confidence that he can heal and be "fixed".)
3) And of course a prayer for health for out little Joshua. He has certainly had ups and downs.
Love and blessings to you all. I will update tomorrow as we find out more.
Leah
**Update (already~Lynne likes to work fast :)) His lungs are very wet and are showing area's of collapse. They are setting him up on the C-PAP machine and increasing his diuretic. He is about 1/2 liter positive as far as fluid goes for the day. Probably not moving to the floor tomorrow.
This is from earlier today when he was sharing time with Auntie and Uncle.
This one is from right now (11 pm)
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