It has been a long last couple days. I have been working pretty much non-stop. A BIG HUGE THANK YOU to Brooke who took care of Joshua today. She loved him up for me in my absence. :) I have a wonderful picture that I will post tomorrow. You can tell Joshua is super comfortable with her and that makes it all the easier to leave him. She is a fabulous nurse and lady. It has been a pleasure getting to know her.
Joshua had quite a few arrhythmia's yesterday. The thought is that his electrolytes...specifically his potassium was a little out of whack. He has not had any today. (Praise the Lord!) His fever is still up and down. His eye is looking a little better today. He was off of his O2 for a chunk of time today. Lisa put him back on for a bit tonight as he was teetering in the low 70's. He is just getting a whiff but it boosted his sats to the mid 80's. I don't think that he will need it all night. Dr Mazor was pretty impressed that he was on room air. We will see how it pans out through the night.
Joshua is supposed to go to the cath lab tomorrow. It is supposed to happen after 2 pm. Please pray that all goes well during the procedure and that he can be extibated right afterwards. I would hate to see him be restrained again now that he is moving around more and enjoying be held. I will post as soon as I can tomorrow after he is out so you can see how he is.
Thank you all for checking in.
Leah and Joshua
Thursday, July 31, 2008
Tuesday, July 29, 2008
Tuesday~ Yep, day 62
Hey out there,
Just wanted to drop a quick line to say hello and let you all know that Joshua is doing rather well today. His eye is again all gunked up and swollen.....but all things considered....that is pretty minor. They started him on some drops for that.
They stopped the Lasix drip today. They are now giving him regular IV doses. They weaned the Dilaudid again today. Dr Mazor is on this week and said that he will continue to wean this one until he can get it low enough to start giving him an oral dose. He also talked about getting us ready to go to the floor. I have mixed feeling about that since we don't really know what is wrong with him in terms of fever....and there is still no plan. But I suppose we can't sit up here forever. He assured me that it would not be until after the cath later this week.
Trevor told my mom today that Joshua just needs a "heart plant so he can just get himself a new one and come home." Now if it was just that easy! :) He also said that he was packing a bag, walking to the airport, getting on a plane and flying to Seattle. Then he was going to take a taxi and have it drop him off at the Ronald McDonald house. He would be here tomorrow or in 300 days. LOL :) Oh, I love him. :)
I also think that I forgot to share a BIG MOMENT with you all. Before I took James and Trevor to the airport on Sunday we were up here playing with Joshua. Trevor was entertaining him with all his toys. He started showing him Lurkey Turkey and "gobbling". Then he grabbed Joshua's binky and told him that his binky said "gobble gobble". Joshua started ROLLING. He was laughing so hard. It was AWESOME. I, of course just sat there holding him and sobbing. It was the best laugh ever! (Now I must document that it was not his first laugh. Just the 1st laugh I heard. Our friend Brooke S. had him laughing the other evening when she came in to play with him after her shift. I had to ask he was he really laughing....she said yes. :) I tried not to kick her in the knee.....just kidding!) Speaking of Brooke....tomorrow is her birthday and she has put in a request to take care of Joshua. So if she gets her way, than he is officially a birthday gift. It is so funny to see all the nurses banter over who is going to take care of him. And no matter who gets him they all come in to see him. The nurses who haven't had him....which is rare....are always warned that he gets MANY visitors. I feel blessed to have so many people to love my baby. That includes all of you who follow up on him and pray for him! Thank you.
Dad update: He saw the surgeon for preop today. He will be having his eye removed on the 4th of August. Please pray that all goes smoothly and that the cancer is gone gone GONE! He spirit remains high through all of this. He is a strong man in his faith and I think that makes all the difference. He is also lucky to have such a wonderful woman by his side. (She even let him have ice cream cake on my brothers birthday..... :) ) I love you both!
Let's see~I can't think of any other great news at the moment.
Love,
Leah
Just wanted to drop a quick line to say hello and let you all know that Joshua is doing rather well today. His eye is again all gunked up and swollen.....but all things considered....that is pretty minor. They started him on some drops for that.
They stopped the Lasix drip today. They are now giving him regular IV doses. They weaned the Dilaudid again today. Dr Mazor is on this week and said that he will continue to wean this one until he can get it low enough to start giving him an oral dose. He also talked about getting us ready to go to the floor. I have mixed feeling about that since we don't really know what is wrong with him in terms of fever....and there is still no plan. But I suppose we can't sit up here forever. He assured me that it would not be until after the cath later this week.
Trevor told my mom today that Joshua just needs a "heart plant so he can just get himself a new one and come home." Now if it was just that easy! :) He also said that he was packing a bag, walking to the airport, getting on a plane and flying to Seattle. Then he was going to take a taxi and have it drop him off at the Ronald McDonald house. He would be here tomorrow or in 300 days. LOL :) Oh, I love him. :)
I also think that I forgot to share a BIG MOMENT with you all. Before I took James and Trevor to the airport on Sunday we were up here playing with Joshua. Trevor was entertaining him with all his toys. He started showing him Lurkey Turkey and "gobbling". Then he grabbed Joshua's binky and told him that his binky said "gobble gobble". Joshua started ROLLING. He was laughing so hard. It was AWESOME. I, of course just sat there holding him and sobbing. It was the best laugh ever! (Now I must document that it was not his first laugh. Just the 1st laugh I heard. Our friend Brooke S. had him laughing the other evening when she came in to play with him after her shift. I had to ask he was he really laughing....she said yes. :) I tried not to kick her in the knee.....just kidding!) Speaking of Brooke....tomorrow is her birthday and she has put in a request to take care of Joshua. So if she gets her way, than he is officially a birthday gift. It is so funny to see all the nurses banter over who is going to take care of him. And no matter who gets him they all come in to see him. The nurses who haven't had him....which is rare....are always warned that he gets MANY visitors. I feel blessed to have so many people to love my baby. That includes all of you who follow up on him and pray for him! Thank you.
Dad update: He saw the surgeon for preop today. He will be having his eye removed on the 4th of August. Please pray that all goes smoothly and that the cancer is gone gone GONE! He spirit remains high through all of this. He is a strong man in his faith and I think that makes all the difference. He is also lucky to have such a wonderful woman by his side. (She even let him have ice cream cake on my brothers birthday..... :) ) I love you both!
Let's see~I can't think of any other great news at the moment.
Love,
Leah
Monday ~~~~~ DAY 61
Hello friends and family,
Hope this finds you all well. I know that you have all been wanting an update. I wish I had something great to tell you but I don't. I think we are pretty much holding down the tiles in room #72.
With that said, Joshua is doing pretty well. According to Dr Baden they spent a considerable amount of time talking about him at conference today. The conclusion is that they will do another cath to see what changes, if any, have happened since the last one. Last time he had a cath he was pretty sick and still on the vent. Dr Hardy wants to make sure that we have the best and most up to date information to base this major decision on. I am so glad that he is involved in our sons care. He is a fabulous Dr and man. So many people around here have the utmost respect for him. I feel that says a lot. We are VERY lucky to have his expertise in Western Montana. (I consider ourselves DOUBLE lucky because we also have the best nurse in Missoula. :) )
So in a nutshell here is what has happened this week.
They stopped the Milrinone today. A couple days a go they started a beta blocker to see if that will help decrease his heart rate. It has helped. Last night he spiked a fever of 102.8. I believe this is the highest that he has been. They cultured him and it came down fast. I doubt anything will grow. Dr Law and Dr Mazor think that they should figure out a different plan for the diuresis. They think the fevers could be caused by the Lasix. We will see how they change this up in the next couple days. He has been having a lot of problems with his potassium level so that has to be taken into account with the different diuretic medicines. He has been pretty fluid positive at the end of each day.
The fellow came in and talked to me for a bit tonight. Evidently they ran some tests on his thyroid recently. I am going to have to do some investigation to see what this all means but they measured a couple things. The hormones that are produced measured out ok, but the hormones that stimulate the thyroid to produce the other hormones was pretty elevated. He said that this could have to do with several things including having a bad heart, but an endocrinologist will be coming to examine him sometime this week.
Some statistics:
Weight ~ 18.3 (up from 15.2)
Height ~ 25 inches
O2 Sat ~ 70 - 85 ( from .5 to 3 liters of O2)
Heart Rate ~ 146-190
They are also still working on his wean. He is getting oral ativan and his Dilaudid is down to 13. Today is the first day that has been dropped in a long time.We will see how he handles the changes.
James and Trevor went home yesterday. It was so nice having them here and feeling like we were a whole family again. I will miss that.
If anyone has been trying to reach me....it will be easier now. My cell has been quirky. If you call me at the hospital, let them know to check with me before transferring the call. Some people will ask and some won't. The phone doesn't ring all the time and I know that I have missed some calls.
Thanks for checking on us.
Love and blessings,
Leah and Joshua
Oh.....new slide show at bottom of page.
Wednesday, July 23, 2008
Wednesday
Just a quick update today. Joshua is still the same. Dr B is going to read the echo results today from the echo that was taken yesterday. He said he was pleasantly surprised by what he saw and that it didn't appear to be as bad as expected. His "unhappy heart" # was 171. I gasped when I heard it since the # when he came in May was 14. They assured me that is a "low" #. A number of 600-800 would be more indicative of heart failure. He hasn't had much a fever but his heart rate is still fast. He did sleep for a good protion of last night in the 140's. Today sleeping has been in the 176-180 range. :( He was having some issues with a belly ache today but I think we now have that under control.
Last night was a long and emotionally difficult night. Please keep the Dawson family in your prayers. Last night they said goodbye to their little Sabrina and she went home to heaven. About 7 pm she started experiencing problems in her blood pressure and her rate rate plummeted to 40. They took her for an emergency CT scan because they suspected a brain bleed. That was not the case but she was at a point that they couldn't do anything for her anymore. They put her on a high dose of epi to keep her going while her family came in and held her. I spent the majority of the night here with the family helping with their 3 boys. At 4 am I spoke to Misty as she was going in to hold her baby for the last time while they took her off the ventilator. Their family has shown amazing strength through all of this and even though they knew it was coming they are heart broken. Please pray for peace, comfort and understanding while they process through all of this.
Blessings,
Leah
Last night was a long and emotionally difficult night. Please keep the Dawson family in your prayers. Last night they said goodbye to their little Sabrina and she went home to heaven. About 7 pm she started experiencing problems in her blood pressure and her rate rate plummeted to 40. They took her for an emergency CT scan because they suspected a brain bleed. That was not the case but she was at a point that they couldn't do anything for her anymore. They put her on a high dose of epi to keep her going while her family came in and held her. I spent the majority of the night here with the family helping with their 3 boys. At 4 am I spoke to Misty as she was going in to hold her baby for the last time while they took her off the ventilator. Their family has shown amazing strength through all of this and even though they knew it was coming they are heart broken. Please pray for peace, comfort and understanding while they process through all of this.
Blessings,
Leah
Monday, July 21, 2008
Monday
Happy Monday! I know, I know.....I still haven't gotten the pictures up yet. I am going to try and do it early this week. I have been working a lot of hours and trying to spend as much time with James and Trevor as I can before they have to go home. Unfortunately, their visit coincides with end of quarter reporting, so it has been a balance.
Dr. Boucek, a cardiologist who specializes in heart failure, came in today to assess Joshua and see what he thought. He was not 100% convinced that the things that we are seeing (fever, irritability, etc) are related to his heart! UGH......so, where does that put us?? I would like to know too :) He will be spending time with Joshua all week long. Of course, today when he came up here Joshua was totally chilling, taking a nap....no fever, ok sats, slightly high heart rate.... Leslie told Dr Baden that he needed to come in when he was not so happy so that he could get a better assessment. :) They have tweaked his Ativan again and last night and today he was pretty doped up! We are still trying to figure out the balance with that. They have upped his Captoprill and are hoping to get him off of the Milrenone, but they are waiting to see what Dr B has to say first. Hopefully, I will have a little more information tomorrow. They are going to do an echo and do some special measurements of the right ventricle as well as get his "unhappy heart" # from his blood.....I can't remember the real term but that is what it was referred to. Basically the higher the # the higher the chance that you are in heart failure. When he got here in June his # was 14 (low) and they will see what it is tomorrow.
I have a special prayer request for today. A family that was here from Montana had to make a heartbreaking decision to take their baby off of life support and let her go home to be with Our Lord. Brianna and Josh (and grandma Tammy) had a little girl named Arianna. She was flown here at 3 months old with meningitis/encephalitis. They have been here about the same amount of time as we have. Tammy got here a couple days ago and they did a scan on Arianna. The encephalitis had eaten away little Arianna's brain, leaving only the brain stem. There was no chance that she would ever be able to breathe, swallow, "wake up" or maintain any body functions on her own. Please hold their family up in prayer that they can find peace and comfort at this time of extreme heartache. I can't imagine the pain that they must be feeling.
Blessings,
Leah and family
Dr. Boucek, a cardiologist who specializes in heart failure, came in today to assess Joshua and see what he thought. He was not 100% convinced that the things that we are seeing (fever, irritability, etc) are related to his heart! UGH......so, where does that put us?? I would like to know too :) He will be spending time with Joshua all week long. Of course, today when he came up here Joshua was totally chilling, taking a nap....no fever, ok sats, slightly high heart rate.... Leslie told Dr Baden that he needed to come in when he was not so happy so that he could get a better assessment. :) They have tweaked his Ativan again and last night and today he was pretty doped up! We are still trying to figure out the balance with that. They have upped his Captoprill and are hoping to get him off of the Milrenone, but they are waiting to see what Dr B has to say first. Hopefully, I will have a little more information tomorrow. They are going to do an echo and do some special measurements of the right ventricle as well as get his "unhappy heart" # from his blood.....I can't remember the real term but that is what it was referred to. Basically the higher the # the higher the chance that you are in heart failure. When he got here in June his # was 14 (low) and they will see what it is tomorrow.
I have a special prayer request for today. A family that was here from Montana had to make a heartbreaking decision to take their baby off of life support and let her go home to be with Our Lord. Brianna and Josh (and grandma Tammy) had a little girl named Arianna. She was flown here at 3 months old with meningitis/encephalitis. They have been here about the same amount of time as we have. Tammy got here a couple days ago and they did a scan on Arianna. The encephalitis had eaten away little Arianna's brain, leaving only the brain stem. There was no chance that she would ever be able to breathe, swallow, "wake up" or maintain any body functions on her own. Please hold their family up in prayer that they can find peace and comfort at this time of extreme heartache. I can't imagine the pain that they must be feeling.
Blessings,
Leah and family
Friday, July 18, 2008
Friday~Short Update
Just a quick note to let you all know that we are hanging in there. No major updates this week. Joshua is acting happier and is more playful each day. He is quite the flirter and has many nurses who think he is just the cutest.
I spent a lot of time with Infectious Disease and the cardiologist here at the hospital. We talked about many scary things but the search continues to see what is causing the fevers. I will spend more time talking about this when I post this weekend from my personal computer and put those pics up that I have been talking about. :)
James, Trevor and I snuck out yesterday for a bit and took in the Science Museum. It was nice to get away from the hospital for a bit. I love having them here but wish I could spend more time with them and Joshua at the same time. Trevor just can't find it in himself to sit at the hospital....which we totally understand. James doesn't particularly like it either.
The Children's Hospital lost a fabulous nurse at the end of her shift today. She is going back to Philly to be close to her family. Kristina~ I want to thank you for the being such an awesome nurse and lady!! :) I really enjoyed chatting with you and the care and attention that you provide to your kiddo's and families is a real blessing. Thank you for celebrating Joshua's 1/2 birthday with us (also recognized as the Fourth of July). You made it a lot easier to be away from family on that holiday. Take care and please keep in touch. Get to working on those bibs! :)
Love,
Leah and Joshua
I spent a lot of time with Infectious Disease and the cardiologist here at the hospital. We talked about many scary things but the search continues to see what is causing the fevers. I will spend more time talking about this when I post this weekend from my personal computer and put those pics up that I have been talking about. :)
James, Trevor and I snuck out yesterday for a bit and took in the Science Museum. It was nice to get away from the hospital for a bit. I love having them here but wish I could spend more time with them and Joshua at the same time. Trevor just can't find it in himself to sit at the hospital....which we totally understand. James doesn't particularly like it either.
The Children's Hospital lost a fabulous nurse at the end of her shift today. She is going back to Philly to be close to her family. Kristina~ I want to thank you for the being such an awesome nurse and lady!! :) I really enjoyed chatting with you and the care and attention that you provide to your kiddo's and families is a real blessing. Thank you for celebrating Joshua's 1/2 birthday with us (also recognized as the Fourth of July). You made it a lot easier to be away from family on that holiday. Take care and please keep in touch. Get to working on those bibs! :)
Love,
Leah and Joshua
Monday, July 14, 2008
Monday
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
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
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