To just keep Joshua stable.
They are not making too many changes today. They all feel like he is better off today than he was yesterday and that he needs to get at least one good stable day under his belt before any changes are made. He may have to go on an oscillator ventilator if his lungs get much worse. His xray was worse this morning compared to yesterday. More than likely from the extra fluid. He has not been peeing very much the last few days.
Joshua kept everyone VERY busy yesterday. My attitude (and mommy rule for Joshua) has always been 'as long as we are not the hottest fire in the CICU'....well yesterday Joshua broke the 'rule'! It was a scary long day and I am glad to say that I feel better about things today. He has had great nurses which helps put me at ease.
Dr Law also came by today. The respect that I have for that man is unmeasurable! He said that we are so lucky to have had such a "perfect, custom made donor match" especially at this point. He didn't need plasma phresis and his anti rejection medication is really pretty low. Both of this things in conjunction with ECMO and the sepsis would have really complicated things and would have made it a lot harder for him to fight the infection off. I give PRAISE and THANKS to the Lord for this miracle!!! (He did say that they were going to accept the organ anyway even if it wasn't such a good antibody match (they felt there were things they could do like phresis to work around that)....but they were amazed when it came the antibody tests came back!)
Last night he did have some bleeding around one of his chest tubes. His RA line fell out of his heart but it ended up to not be a big deal. The surgeons removed it this morning. He also had a another stitch added so there wasn't so much play around his chest tube.
He still remains on boluses of Vec, Dilaudid and Ativan. He will be very sedate and paralyzed today. He is also getting the Nitric Oxide today. He has not had a fever in the last 36 hours or so.
I will update you more as the day goes. I am hoping for a quiet, low key day!
Thursday, January 29, 2009
Wednesday, January 28, 2009
Short Wednesday Update
Joshua hasn't had a very good day....and consequently either has his mommy.
He is on full vent support and is still struggling to get good air into his lungs. The hope is that the infection is peaking. The doctors have all been very close the last couple of days. They are talking about doing an esophageal balloon so see what the actual pressures inside his body are to make sure they are not over inflating his lungs. His lactate was up to 4.9 today but now it is down to 2.8. He did get some blood today and continues on his antibiotics. We did have to Vec him because he was moving and the doctors felt they could get a better idea of the issues if they took him out of the picture and just focused on his body! :) He wants to move and watch and then his #'s get wacky. He hasn't tolerated much the last couple days...he has been straight up crabby. Michael felt very bad having to Vec him so he made sure he was sedated and asleep nice and comfy before he did it. He has a nice tight grip on his blanky!
They did another ECHO and Dr. B is looking at it. Lung xray looks worse today than it did yesterday. He is very swollen from fluid seepage, peeing very little and now his tummy is pretty distended.
Please pray that Joshua remains strong as is able to get past all of this without any further damage to his organs. I could use a prayer for strength! I have been pretty emotionally drained the last couple days. I feel like the pressures of the year are starting to weigh down on me.
Oh~family update also. My mother in law Betty was hospitalized yesterday. I believe it was because of her blood pressure but I haven't been able to get specifics yet. Please pray for her that she get better and can get some rest while she is there and please keep Grandpa Ray in your prayers too. I know that this has been a hard time for him as well.
He is on full vent support and is still struggling to get good air into his lungs. The hope is that the infection is peaking. The doctors have all been very close the last couple of days. They are talking about doing an esophageal balloon so see what the actual pressures inside his body are to make sure they are not over inflating his lungs. His lactate was up to 4.9 today but now it is down to 2.8. He did get some blood today and continues on his antibiotics. We did have to Vec him because he was moving and the doctors felt they could get a better idea of the issues if they took him out of the picture and just focused on his body! :) He wants to move and watch and then his #'s get wacky. He hasn't tolerated much the last couple days...he has been straight up crabby. Michael felt very bad having to Vec him so he made sure he was sedated and asleep nice and comfy before he did it. He has a nice tight grip on his blanky!
They did another ECHO and Dr. B is looking at it. Lung xray looks worse today than it did yesterday. He is very swollen from fluid seepage, peeing very little and now his tummy is pretty distended.
Please pray that Joshua remains strong as is able to get past all of this without any further damage to his organs. I could use a prayer for strength! I have been pretty emotionally drained the last couple days. I feel like the pressures of the year are starting to weigh down on me.
Oh~family update also. My mother in law Betty was hospitalized yesterday. I believe it was because of her blood pressure but I haven't been able to get specifics yet. Please pray for her that she get better and can get some rest while she is there and please keep Grandpa Ray in your prayers too. I know that this has been a hard time for him as well.
Tuesday, January 27, 2009
Pictures
This is part of the team that helped move Joshua to the OR (on the 24th) to come off ECMO. There were 9 people total.
This was taken this morning before Michael removed the bandage. (The orange stuff around the edges if from the echo.)
I just took this one a couple minutes ago. He is FINALLY getting a little rest. He is retaining some fluid still and his chest tubes are a little oozy. He doesn't tolerate his binky being taken out of his mouth. If you look close enough you will also notice that he is holding the silk of his blanket in his fingers. :)
This was taken this morning before Michael removed the bandage. (The orange stuff around the edges if from the echo.)I just took this one a couple minutes ago. He is FINALLY getting a little rest. He is retaining some fluid still and his chest tubes are a little oozy. He doesn't tolerate his binky being taken out of his mouth. If you look close enough you will also notice that he is holding the silk of his blanket in his fingers. :)Thank you
I just want to say thank you for everyone who has been praying for Joshua, our family and our donor family as we all deal with struggles of these life changing events.
Your support has been very comforting! Every message is very precious to us even though we can't thank each of you individually, I want you to know that it means a lot to us.
I think that the shock of all of this is starting to wear off. Maybe it is because everything isn't going as smoothly as I had hoped. It has been a hard couple days watching Joshua struggle. I want to scoop him up and love on him so bad but him even seeing me has been causing him some agitation. He doesn't understand why I can't succumb to his wishes and just pick him up.
I am thinking that it is equally hard for both of us.
I just want to remind you, and even remind myself, that there is a family still out there that is experiencing an unimaginable pain and loss. Please help me lift them in prayer as a thank you for the selfless gift that they have given my son. My baby has a shot at a good long life thanks to them and I don't want to loose sight of that.
Your support has been very comforting! Every message is very precious to us even though we can't thank each of you individually, I want you to know that it means a lot to us.
I think that the shock of all of this is starting to wear off. Maybe it is because everything isn't going as smoothly as I had hoped. It has been a hard couple days watching Joshua struggle. I want to scoop him up and love on him so bad but him even seeing me has been causing him some agitation. He doesn't understand why I can't succumb to his wishes and just pick him up.
I am thinking that it is equally hard for both of us.
I just want to remind you, and even remind myself, that there is a family still out there that is experiencing an unimaginable pain and loss. Please help me lift them in prayer as a thank you for the selfless gift that they have given my son. My baby has a shot at a good long life thanks to them and I don't want to loose sight of that.
Update on Bacteria (from the chest tube)
It was identified as Serratia. This is his second bout with this nasty bacteria. He had a urinary tract infection that also grew Serratia. He was pretty sick that time too. The Vancomycin is broad enough to treat the Serratia...they will still do a resistance test and may change it up a little bit later. I believe he was on something else before for it.
Just thought I would let you know....one mystery down.
Just thought I would let you know....one mystery down.
The petri dish has blossomed
UGH. So he has some kind of gram-negative rods growing in his lung, mediastinal chest tube and the pig tail drain. There is lots of it growing all over. They have yet to identify it. They changed up the antibiotics again and are waiting to get the exact identification of the bacteria and the resistance test results. He is feeling very crummy. They gave him more fluid last night and it just seeped into his tissues so he is again all swollen. Not to the extent he was before but pretty puffy. He has to really work to see his nurse today due to the puffy eyes. He lucked out and has his buddy Michael taking care of him. I am sure that he would enjoy it much more if he was able to play with him.
Joshua was kind of the "busy kid in the unit" last night. Never a good thing. They watched him very closely and continue to do so today. They started him on a vasodialator called Nipride in the hopes that it will bring his pressures down. They increased the Milrinone to 1 from .5 where it was most of yesterday. We haven't seen any major improvements yet. His fever creeps creeping back up and he remains on the cooling blanket. He is still fighting sedation...the little bugger.
Michael is planning on removing the chest bandage today. He has orange stuff all over him from the echo last night. I will be posting a picture later. He doesn't look too horrible but be warned.
Blessings,
Leah
Joshua was kind of the "busy kid in the unit" last night. Never a good thing. They watched him very closely and continue to do so today. They started him on a vasodialator called Nipride in the hopes that it will bring his pressures down. They increased the Milrinone to 1 from .5 where it was most of yesterday. We haven't seen any major improvements yet. His fever creeps creeping back up and he remains on the cooling blanket. He is still fighting sedation...the little bugger.
Michael is planning on removing the chest bandage today. He has orange stuff all over him from the echo last night. I will be posting a picture later. He doesn't look too horrible but be warned.
Blessings,
Leah
UGH
I can tell it is going to be a long night. :-(
Joshua has remained febrile all day. His white blood count is higher than it was and his lactate is 3.2 up from 1.72 earlier today. He is visibly uncomfortable and has been "crying" a lot tonight. They have cultured everything and started him on Zosyn and Vancomycin. They are not feeling confident in chalking it all up to some kind of infection. They have also ordered stat chest films and an ECHO. *sigh*
His culture from earlier showed that it is not RSV, but that is all we have back. Please keep this little guy in your prayers. He is feeling pretty crummy tonight. :-(
Joshua has remained febrile all day. His white blood count is higher than it was and his lactate is 3.2 up from 1.72 earlier today. He is visibly uncomfortable and has been "crying" a lot tonight. They have cultured everything and started him on Zosyn and Vancomycin. They are not feeling confident in chalking it all up to some kind of infection. They have also ordered stat chest films and an ECHO. *sigh*
His culture from earlier showed that it is not RSV, but that is all we have back. Please keep this little guy in your prayers. He is feeling pretty crummy tonight. :-(
Monday, January 26, 2009
HE IS CLOSED!! :-)
His chest is closed! Dr McMullan thinks that maybe tomorrow we can get his medial chest tube out. That will leave one chest tube, the pig tail tube and 2 RA lines. We are getting closer and closer to getting him into my arms! :-)
Oh~he is also sporting a new pearly white tooth. The tooth to the left (his left) of his 2 bottom teeth made made it through. I figure if he is going to get teeth....now is perfect! He should feel little pain with all the drugs he is on!
Oh~he is also sporting a new pearly white tooth. The tooth to the left (his left) of his 2 bottom teeth made made it through. I figure if he is going to get teeth....now is perfect! He should feel little pain with all the drugs he is on!
Monday
They are talking about taking him to the OR in a few minutes to close him up! The lung Dr's were just here and did a scope on his lungs. It was VERY interesting!! They did find a mucous plug blocking the upper left lobe, which is where he was having problems. They are culturing him for pneumonia. UGH. It seems that the census is closing him is the right thing to do and then they can get more aggressive with the chest PT. He has been febrile all day and night. Ranging from about 38.3 to 39.5. (roughly 101 to 103.5) Joshua of course has been awake almost all day and hard to sedate. He has a TON of drugs on board and is still trying to fight it and look around. Stubborn boy.....
Sunday, January 25, 2009
Sunday
Joshua has had a wonderful day. Sorry for not posting sooner. He came out of surgery and off ECMO without a hitch. He did come back with his chest still open but sporting a smaller patch. Dr McMullan also removed one drain tube but inserted to RA lines. So he is actually only down one tube. His numbers have been great all day. He isn't down as much fluid wise as we would have liked to seen but he is making some head way.
After he came back and was all settled in I took the liberty of taking a much needed nap. My mom woke me up to tell me that Joshua was wide awake and the anaesthesia had wore off. I was welcomed with a nice big smile. He has been trying really hard to talk (babble) to me but the the ventilator inhibits that. He doesn't quite understand....he tried and usually ends up in a fit of coughing. His lungs sound much clearer today than yesterday. After I made sure he was all settled in, I went with my mom and Trevor to go eat and hung out. Trevor and I played Rock band for a bit, had some ice cream and then I headed back to the hospital. Brooke took care of him last night and has him again tonight. :)
My mom, dad and Trevor headed back to Missoula early this morning. They made it safely there this afternoon.
Joshua has been having a real nice day today. He helped Tess administer a little chest PT. Loved hanging out with Ingrid and having her clean his mouth and play and explore things as she worked. And of course Brooke is here tonight taking care of him so he will love on her. He was smiling and playing with her earlier before she left this morning too. I am glad that he is feeling well enough to soak up the attention that he has come to love.
He has a sore on his leg that looks like a pussy blister maybe from the the Foley rubbing on his leg. He has a fever tonight so they are pulling all samples for cultures. Other than those things he is rocking! Pictures tomorrow.
Blessings,
Leah
After he came back and was all settled in I took the liberty of taking a much needed nap. My mom woke me up to tell me that Joshua was wide awake and the anaesthesia had wore off. I was welcomed with a nice big smile. He has been trying really hard to talk (babble) to me but the the ventilator inhibits that. He doesn't quite understand....he tried and usually ends up in a fit of coughing. His lungs sound much clearer today than yesterday. After I made sure he was all settled in, I went with my mom and Trevor to go eat and hung out. Trevor and I played Rock band for a bit, had some ice cream and then I headed back to the hospital. Brooke took care of him last night and has him again tonight. :)
My mom, dad and Trevor headed back to Missoula early this morning. They made it safely there this afternoon.
Joshua has been having a real nice day today. He helped Tess administer a little chest PT. Loved hanging out with Ingrid and having her clean his mouth and play and explore things as she worked. And of course Brooke is here tonight taking care of him so he will love on her. He was smiling and playing with her earlier before she left this morning too. I am glad that he is feeling well enough to soak up the attention that he has come to love.
He has a sore on his leg that looks like a pussy blister maybe from the the Foley rubbing on his leg. He has a fever tonight so they are pulling all samples for cultures. Other than those things he is rocking! Pictures tomorrow.
Blessings,
Leah
Saturday, January 24, 2009
Dr McMullan has called in the troops!
He just called in the operating room staff. Joshua will be coming off ECMO in about45 minutes.
PRAISE THE LORD!!!
He breezed through his trial and Dr McMullan said he certainly wouldn't put him on ECMO with those #'s, so there was no reason to leave him on.
He has been stirring this morning and welcomed me with several smiles. What an awesome boy.
There are still some issues with his left lung. They have increased his vent support but can't do much chest PT with his chest being open. I am unsure whether Dr McMullan will close his chest while he is in there. They are going to place two more lines in for meds.
I will update when he comes out of the OR.
PRAISE THE LORD!!!
He breezed through his trial and Dr McMullan said he certainly wouldn't put him on ECMO with those #'s, so there was no reason to leave him on.
He has been stirring this morning and welcomed me with several smiles. What an awesome boy.
There are still some issues with his left lung. They have increased his vent support but can't do much chest PT with his chest being open. I am unsure whether Dr McMullan will close his chest while he is in there. They are going to place two more lines in for meds.
I will update when he comes out of the OR.
Friday, January 23, 2009
They have switched out the oxygenator
And have put in a different style that should "last forever". Now if I felt that he was going to be on this for so long that would be good news. I am glad we won't have to fuss over it anymore.
The good news is Joshua didn't even flinch when he was off the support. It was a full 3 minutes. No changes AT ALL!! Hopefully he will handle the trial as easy as that and we can get past this point. I talked to Dr Law when he came back and he said he will be around. Mostly in clinic. WHEW. He said he is excited to get him better and get him HOME. He said he has been here way too long. Amen to that! :)
It is amazing to me the thought of going home and just visiting the hospital as opposed to living here. I don't think I really ever expected that day to come. So much to soak in....
The good news is Joshua didn't even flinch when he was off the support. It was a full 3 minutes. No changes AT ALL!! Hopefully he will handle the trial as easy as that and we can get past this point. I talked to Dr Law when he came back and he said he will be around. Mostly in clinic. WHEW. He said he is excited to get him better and get him HOME. He said he has been here way too long. Amen to that! :)
It is amazing to me the thought of going home and just visiting the hospital as opposed to living here. I don't think I really ever expected that day to come. So much to soak in....
Friday
Today all the Dr's rounded. Dr B will be coming on service for Dr Law. I hope that he is still around. He has been so instrumental in all of this that I don't know if I can handle not seeing him daily! He has been the Dr that has gotten me, not just Joshua, BUT ME through all of this!
I don't know if he knows how AMAZING he is. He is a very humble man but just about as smart as they come. His intelligence and concern for his patients is breathtaking.
Our little Joshua is doing good. The oxygenator on the ECMO pump is going out again. The manufacturer says it has roughly a 4 hour life. 4 hours!! I think that company needs a little QI.
They will change that today and start to trial him off ECMO tonight. Today will mainly be getting extra fluid off of him and getting his ventilator setting lower.
He has been awake today off and on. He did wake up and stretch and when he saw me he had a big smile! It was awesome. I took this picture to share with you. After this picture and the flash went off Joshua of course hammed it up with another big smile. I wasn't able to capture that one though.
Thursday, January 22, 2009
My miracle
Joshua is still the same....well to a point. Stable but feisty! He keeps fighting sedation they are really having to hit him with the meds. He would rather be awake and loving on everyone than just lying there in bed.
After having lunch with my mom we returned to the room. I was up close to Joshua talking to him and telling him how strong he was and how much he was loved. He opened his eyes and was able to fix them on me. (After all the swelling just opening them has been a feat but with all the sedation when he did open them but he kind of looked like no one was home.) I got close so he could see me and told him that I loved him as big as the sky and that he was going to owe me 15o when he was better. (This is something that I have told him since he was little and on the vent this summer. I couldn't get into to kiss his lips so I would tell him that when he was off the vent he would owe me 150....meaning kisses. I have always done this with him and now that he is bigger I tell him I want a 150 and we pucker up and make as many smacking noises as we can. Things we do with our kids....right?) So my miracle.....with his little eyes open and fixed on him he "blew me a kiss" Joshua style. (He doesn't use his hands he just puckers with all he has and makes the noises!) I think my heart stopped. I felt the urge to hold back the surge of emotions that I felt overcoming me because of the fear of not being able to stop sobbing if I started!
So tonight I am thankful to the Lord not only for Joshua, his new angel heart and all the other awesome miracles and blessing in my life but for proving to me that despite the big scary ECMO machine....my baby is in there and is ok.
After having lunch with my mom we returned to the room. I was up close to Joshua talking to him and telling him how strong he was and how much he was loved. He opened his eyes and was able to fix them on me. (After all the swelling just opening them has been a feat but with all the sedation when he did open them but he kind of looked like no one was home.) I got close so he could see me and told him that I loved him as big as the sky and that he was going to owe me 15o when he was better. (This is something that I have told him since he was little and on the vent this summer. I couldn't get into to kiss his lips so I would tell him that when he was off the vent he would owe me 150....meaning kisses. I have always done this with him and now that he is bigger I tell him I want a 150 and we pucker up and make as many smacking noises as we can. Things we do with our kids....right?) So my miracle.....with his little eyes open and fixed on him he "blew me a kiss" Joshua style. (He doesn't use his hands he just puckers with all he has and makes the noises!) I think my heart stopped. I felt the urge to hold back the surge of emotions that I felt overcoming me because of the fear of not being able to stop sobbing if I started!
So tonight I am thankful to the Lord not only for Joshua, his new angel heart and all the other awesome miracles and blessing in my life but for proving to me that despite the big scary ECMO machine....my baby is in there and is ok.
Thursday morning
Joshua is still doing ok. We had a little excitement last night when the oxygenator on the ECMO pump started leaking and needed to be changed. Joshua handled it really well even though he lost a lot of the sedation and needed to be comforted....and drugged!
They rounded this morning but there is still a lot of speculation and no hard evidence one way or the other explaining what could be going on. He is getting an echo right now and I will update as I hear more.
The main plan for today is to increase his Lasix and get some more fluid off of him. He is less swollen today and closed out the 24 hour period with even fluids in and out.
They rounded this morning but there is still a lot of speculation and no hard evidence one way or the other explaining what could be going on. He is getting an echo right now and I will update as I hear more.
The main plan for today is to increase his Lasix and get some more fluid off of him. He is less swollen today and closed out the 24 hour period with even fluids in and out.
Wednesday, January 21, 2009
Pictures
Snuggles with mom after we found out he was offered a heart! (This is his "new" favorite position...of course I need to be standing :) )
This was taken after Joshua went to the cath lab. He came out on the ventilator and ready for his new heart. (You will notice that they forgot something when they returned him.....HIS DIAPER!)
This is his big debut after he received his new angel heart. His perfect color was a shock to me. The whole thing has been a shock to me.....
This is today. Yesterday he was positive 1825 cc's. We estimate that he has gained roughly 3 kilo's or 6.5 - 7 pounds in the last 24 hours. (He has gained about 1/3 of himself.) His weight before transplant was 9.45 kilos or 20.8 pounds..... 
Joshua's chest remained open after his trip to the OR last night. He has a rubber patch over his heart. Two of the lines that you see bring blood in and blood out of his body and to the ECMO machine. He has 4 chest tubes that are draining and the one on the far right is his G-J Tube.
It is really hard to do the ECMO machine "justice", but here is a picture to you can get somewhat of an idea. The blood comes out and goes through this machine where it is oxygenated and returned to him.
This was taken after Joshua went to the cath lab. He came out on the ventilator and ready for his new heart. (You will notice that they forgot something when they returned him.....HIS DIAPER!)This is his big debut after he received his new angel heart. His perfect color was a shock to me. The whole thing has been a shock to me..... This is today. Yesterday he was positive 1825 cc's. We estimate that he has gained roughly 3 kilo's or 6.5 - 7 pounds in the last 24 hours. (He has gained about 1/3 of himself.) His weight before transplant was 9.45 kilos or 20.8 pounds..... 
Joshua's chest remained open after his trip to the OR last night. He has a rubber patch over his heart. Two of the lines that you see bring blood in and blood out of his body and to the ECMO machine. He has 4 chest tubes that are draining and the one on the far right is his G-J Tube.It is really hard to do the ECMO machine "justice", but here is a picture to you can get somewhat of an idea. The blood comes out and goes through this machine where it is oxygenated and returned to him.Wednesday afternoon
Hello friends,
So....today has been pretty good and Joshua is doing alright. He has a "dream team" with Becky and Maree by his side so I am feeling pretty good too. It is nice to be among friends up here and there is a comfort in knowing that each of these awesome people really CARE about Joshua and have only his best interests at heart. He has charmed and shared his unconditional love with many and it has been reciprocated.
He did have an echo today and I am still waiting for those results. I talked to Dr Law at length regarding his antibodies and they just don't feel that is what is causing the issues. Everything about Joshua's (and what they can tell from the donor's) antibodies seem to be fine. The comment was even made that it is like they were twins. A miracle indeed.
I want to thank you all for checking up on him. I do have some pictures that I am going to post. They are graphic and I am sure that some of you would rather not see him like this. I cannot say that I am much different. My intentions with the creation of this blog were to keep those of you who wanted to know what was going on with Joshua, easily in the loop. It has evolved into much more than that. This has become, in a way, the documentation of the journey that we have been on in the last several months. Someday, I will be sitting with Joshua by my side, explaining to him all the MOUNTAINS that he endured and I don't want to miss any of the details or loose sight of all the miracles that surrounded him.
With love,
Leah
So....today has been pretty good and Joshua is doing alright. He has a "dream team" with Becky and Maree by his side so I am feeling pretty good too. It is nice to be among friends up here and there is a comfort in knowing that each of these awesome people really CARE about Joshua and have only his best interests at heart. He has charmed and shared his unconditional love with many and it has been reciprocated.
He did have an echo today and I am still waiting for those results. I talked to Dr Law at length regarding his antibodies and they just don't feel that is what is causing the issues. Everything about Joshua's (and what they can tell from the donor's) antibodies seem to be fine. The comment was even made that it is like they were twins. A miracle indeed.
I want to thank you all for checking up on him. I do have some pictures that I am going to post. They are graphic and I am sure that some of you would rather not see him like this. I cannot say that I am much different. My intentions with the creation of this blog were to keep those of you who wanted to know what was going on with Joshua, easily in the loop. It has evolved into much more than that. This has become, in a way, the documentation of the journey that we have been on in the last several months. Someday, I will be sitting with Joshua by my side, explaining to him all the MOUNTAINS that he endured and I don't want to miss any of the details or loose sight of all the miracles that surrounded him.
With love,
Leah
joshua is on ecmo
He looks GREAT! He is pink again and is warming up. He really responded well. They will watch him closely over the next few days but I feel better about the decision after seeing him. It looks like the issue that he was having is that his heart was not relaxing enough to fill up with blood. It is pumping well and likes the help. He is doing good. Good night friends!
Tuesday, January 20, 2009
Tuesday
So....it has been a long day. Joshua started out really well. He lost a lot of blood and they replaced it as he lost it. He was warm, pink and actively looking around the room this morning. As the day progressed he managed to get a temp of 39.(something), collapsed his left lung, had to get another left chest tube placed, was put on nitric, had blood pressure issues and his arms and legs turned ice cold. :(
About an hour ago the decision was made that they could not let him go on as he was because he was not doing so hot. They all got together....as they have several times through the day and decided that he needed to go back to the OR. Dr McMullen is stepping in for Dr Cohen as he has fallen ill. I know he is in good hands but it is not a familiar face.....well not as familiar.
The plan as it stands: to open up his chest and take a look around. The thought is that maybe by opening it the heart will have some released pressure and will be able to work a little better. He will come out of the OR with an open chest this time around. In the last several hours he has had LITERS of fluid injected to help with blood pressure issues. He is severely swollen. I was told to be prepared for him to go onto ECMO. This is much like the heart bi pass machines that are used in the OR. It will be his heart and lungs while his little body gets some much needed rest. Please pray that all goes smoothly for Joshua over the next few days. I must say that I am TERRIFIED. As I know that this is a huge effort to help him, I have been in this CICU too long and have seen more unfavorable outcomes than positive. Not that this is always a bad thing but it has been a scary thing for me to face. Please pray that this is just what his body needs to recoup.
And of course.....another sign that God is at work: (like we didn't already know it) The test on his antibodies shows that he has had no major (let me repeat NO MAJOR) antibody attacks!! We were most definite that this was going to be his MAJOR obstacle and God has spared us that....even if just for now. He will not need immediate plasma replacement therapy. PRAISE THE LORD. Now this can change of course, but to not have to worry about this at this point is a miracle.
Thanks for following up. I will try and call many of you but please know many people have been trying to reach me and my cell phone battery is crap. :( I am not loving it right now. I am thinking of you all and appreciate ALL the support that each of you has given. Know that I don't think that I could be as strong with out your prayers and contact. I know that many of you have questions and please feel free to keep trying to get through or post them as a comment and I can reply on the board. This is very scary for all of us and I know each of you has a vested interest and love for this awesome boy.
Much love,
Leah for the family
About an hour ago the decision was made that they could not let him go on as he was because he was not doing so hot. They all got together....as they have several times through the day and decided that he needed to go back to the OR. Dr McMullen is stepping in for Dr Cohen as he has fallen ill. I know he is in good hands but it is not a familiar face.....well not as familiar.
The plan as it stands: to open up his chest and take a look around. The thought is that maybe by opening it the heart will have some released pressure and will be able to work a little better. He will come out of the OR with an open chest this time around. In the last several hours he has had LITERS of fluid injected to help with blood pressure issues. He is severely swollen. I was told to be prepared for him to go onto ECMO. This is much like the heart bi pass machines that are used in the OR. It will be his heart and lungs while his little body gets some much needed rest. Please pray that all goes smoothly for Joshua over the next few days. I must say that I am TERRIFIED. As I know that this is a huge effort to help him, I have been in this CICU too long and have seen more unfavorable outcomes than positive. Not that this is always a bad thing but it has been a scary thing for me to face. Please pray that this is just what his body needs to recoup.
And of course.....another sign that God is at work: (like we didn't already know it) The test on his antibodies shows that he has had no major (let me repeat NO MAJOR) antibody attacks!! We were most definite that this was going to be his MAJOR obstacle and God has spared us that....even if just for now. He will not need immediate plasma replacement therapy. PRAISE THE LORD. Now this can change of course, but to not have to worry about this at this point is a miracle.
Thanks for following up. I will try and call many of you but please know many people have been trying to reach me and my cell phone battery is crap. :( I am not loving it right now. I am thinking of you all and appreciate ALL the support that each of you has given. Know that I don't think that I could be as strong with out your prayers and contact. I know that many of you have questions and please feel free to keep trying to get through or post them as a comment and I can reply on the board. This is very scary for all of us and I know each of you has a vested interest and love for this awesome boy.
Much love,
Leah for the family
Dr Law
Came out and said that they are all real happy with how the "graft" (meaning his new angel heart) is looking and functioning. They are now cleaning up little things and getting things like his chest tubes and pace wires in place. He should be out before too long. I had hoped to be able to call many of you, but this won't happen until tomorrow. My phone battery will probably die VERY soon and I am really hoping there is enough juice left on this little baby to get James' call! :) Thank you all for your prayers and happy thoughts through this emotional time. We appreciate all of you! Much love, Leah for the Garrison's
Monday, January 19, 2009
update
Joshua went back to surgery at 7pm. His angel heart should be here around 11pm. Dr Law just came out and said that everything was going well. He has a lot of scar tissue but the bleeding was minimal.They don't expect him to be out of surgery until 3 or 4 in the morning. Dr Cohen reassured me that he tried to take a nap around 5:30 and was ready to pull an allnighter! :) Both Dr Cohen and Dr Law feel really good about the donor heart and the match! When I asked Dr Law earlier if it was a good match.... He said "no....it is a PHENOMINAL match!!" He said it is really weird, like they were related or something. It couldn't have been a better match at 95% sensitized, unless it was his own. You can really sure that God had control over all of this! To see God's work all day today has been a true blessing.
a heart
This is a mobile update so I hope it works...the call has come and the Lord has graced our little Joshua with a new angel heart! The transplant will be this evening. He is in the cath lab right now. I know you would all like details but I am not in a position at this moment to provide them. I will soon. Please lift Joshua and all the Dr's and staff as well as the donor's family in prayer! Leah
Sunday, January 18, 2009
a non Joshua update
I have had a couple questions about patients and prayer requests of the past.
I would like to share this link with you regarding Evett. She was Joshua's neighbor for a long time when we first got here this summer. She was the little gal that had a Berlin Heart. I remember how sick she was and how scared her parents were. I often wondered how her future would look and what God had planned for her.
http://www.nwcn.com/health/children/stories/NW_122708HEB_child_double_transplant_SW.110edda1.html
The 2 nurses Pam and Jason are 2 of the 3 transplant coordinators that I work with daily. Dr Law is also Joshua's primary heart Doctor. What a fabulous team!
I would like to share this link with you regarding Evett. She was Joshua's neighbor for a long time when we first got here this summer. She was the little gal that had a Berlin Heart. I remember how sick she was and how scared her parents were. I often wondered how her future would look and what God had planned for her.
http://www.nwcn.com/health/children/stories/NW_122708HEB_child_double_transplant_SW.110edda1.html
The 2 nurses Pam and Jason are 2 of the 3 transplant coordinators that I work with daily. Dr Law is also Joshua's primary heart Doctor. What a fabulous team!
Sunday Update
Joshua is still up in the ICU. We were moved to the Bridge yesterday. We were in the 1st bed in the PICU....we could NOT have been any further from the CICU and still have been in the Unit. They moved us yesterday so we would be a little closer to the Cardiac Unit.
We are sharing a room with a little gal that is 6. She wants nothing more than to eat or drink something......anything!! Please pray that she can get healed up and get something in her belly. Oh and I must also mention that when they did rounds today they couldn't figure out why Joshua would just start bawling....Then stop and smile. Well it didn't take too long to figure out that we have a little sympathy crier! Every time the neighbor starts crying....so does Joshua! I have to laugh as I find it quite amusing. Dr Law was so puzzled as to what could be bothering him. :) The timing was great. They were cracking jokes about him being a sensitive boyfriend and Dr Law didn't see how crying on your first date was very good boyfriend material!! We all enjoyed a good and much needed laugh.
Joshua did have another echo today. I don't know what the results are yet. It sounds like he is going to have to go to the Cath Lab again real soon. Dr Law is going to consult with Dr Johnston and get back to me. Something about his double Glenns, flow and effusions. I need more clarification as I couldn't hear a word over all the noise in our room. It sounds like they want to go in and coil something off. ???? I will update as I know what the heck I am talking about! :)
Oh....one last thing. God provided Seattle with some much needed sunshine the last couple days!! Boy that can really help put the blahs at bay!
Blessings,
Leah
We are sharing a room with a little gal that is 6. She wants nothing more than to eat or drink something......anything!! Please pray that she can get healed up and get something in her belly. Oh and I must also mention that when they did rounds today they couldn't figure out why Joshua would just start bawling....Then stop and smile. Well it didn't take too long to figure out that we have a little sympathy crier! Every time the neighbor starts crying....so does Joshua! I have to laugh as I find it quite amusing. Dr Law was so puzzled as to what could be bothering him. :) The timing was great. They were cracking jokes about him being a sensitive boyfriend and Dr Law didn't see how crying on your first date was very good boyfriend material!! We all enjoyed a good and much needed laugh.
Joshua did have another echo today. I don't know what the results are yet. It sounds like he is going to have to go to the Cath Lab again real soon. Dr Law is going to consult with Dr Johnston and get back to me. Something about his double Glenns, flow and effusions. I need more clarification as I couldn't hear a word over all the noise in our room. It sounds like they want to go in and coil something off. ???? I will update as I know what the heck I am talking about! :)
Oh....one last thing. God provided Seattle with some much needed sunshine the last couple days!! Boy that can really help put the blahs at bay!
Blessings,
Leah
Friday, January 16, 2009
Oh where, oh where
does the time go!! Just a quick update on our favorite Joshua....
He is in the ICU getting a little med adjustment. He is doing super well and is happy and as busy as can be. I don't think we will be going back tot he floor until atleast Monday. They decided that he needed more Milrinone so they bumped him up to 1 today. He has been desatting alot tonight so I am not wondering if we are going to see the effusion getting a little worse. I will keep you posted. He is breathing easily so I don't know what his deal is. He is sporting a pair of Garfield socks tonight and each time he see's his foot he giggles. It is great! :)
Blessings,
Leah
He is in the ICU getting a little med adjustment. He is doing super well and is happy and as busy as can be. I don't think we will be going back tot he floor until atleast Monday. They decided that he needed more Milrinone so they bumped him up to 1 today. He has been desatting alot tonight so I am not wondering if we are going to see the effusion getting a little worse. I will keep you posted. He is breathing easily so I don't know what his deal is. He is sporting a pair of Garfield socks tonight and each time he see's his foot he giggles. It is great! :)
Blessings,
Leah
Friday, January 9, 2009
January 8th
Just a quick little note to let you know that Joshua is doing really well. He has had just about the best week he has had in MONTHS! I have been busy loving him up and working. I will try and keep this updated but in the next several weeks lets go off the no news is good news theory!We have been working on trying to re-introduce food. We have discovered over the last few days that it is not the food (Applesauce) that he so much minds it is the fact that he is PETRIFIED of the spoon!! We had been feeding him with a little marroon spoon. He SCREAMS! James had the idea of letting him play with the spoon. I pulled it out while we were on the phone and as soon as he saw what it was he started screaming and threw it. So....what is a mom to do. I decided that maybe we should use a white spoon and try to outwit him. Karen with OT/PT one upped that idea. She decided that I should eat too. So she put some yogurt in a cup for me and applesauce in Joshua's with the hope that he wouldn't realize they were different. :) (He is really smart for one!) So all prepared we showed him the white spoon. He fussed and threw it on the floor. I decided that I would take a bite to show him that it was not that bad. As I was bringing the spoon to my mouth he got a very scared look...tensed up...and KNOCKED the spoon out of my hand. The look of releif on his face, a look of self pride for protecting him mother BUSTED me and Karen right up! So needless to say he didn't wretch when we gave him food today but he still screamed when we tried to get it in his mouth. We have been distracting him with toys but that can't last forever. Tomorrow I may try and just dip my finger in it and get him to taste it. That is our goal....just for him to get tastes. We shall see how it goes.
Talking to Grandma Julie
AHH Brothers! :)
Dr Law came in quickly tonight to tell me that his blood results came back and his PRA's are still really high. They will test them again in a month. I will get clarification tomorrow but I don't think that his body will be ready to accept a heart until they come down. Unless it was a super close match...the odds of that are not too good. Looks like we could be hanging out longer than hoped.
I hope that all of you are doing good and enjoying 2009.
Blessings,
Leah
Talking to Grandma Julie
AHH Brothers! :)
Friday, January 2, 2009
Happy New Year!!
Wow. I can't believe that it is 2009. What a year 2008 was!
Joshua is starting to perk up. When I went in to see him yesterday he was smiling and blowing me kisses!! That was so nice to see. He still has a little diarrhea and his electrolytes are still a little out of whack but much better than where they were. Last night he fell asleep in my lap. At almost a year old this should be a daily occurrence! Joshua and I have only had that pleasure a couple times in the last several months. I hated to put him down.
He is back out on the floor now. He moved down Wednesday Night. He is in room 4014.
I am glad that he is out on the floor now but I have to say I REALLY enjoyed touching base with everyone, especially Brooke and Betsy! :)
Trevor is feeling better too. He hasn't coughed at all in several days. He still can't hear too well but I assume that will get better with the antibiotic course. (I hope!) He is so sensitive that he gets hurt feelings when I raise my voice but if I don't he can't hear me.
It is hard for me to believe that the two weeks with the kids is almost up. It wasn't too fun this last week sitting in isolation. UGH. Hopefully they will remember more than just being bored while they were here.
Well I hope that all of you are having a nice start to 2009. (Darla, my friend, I hope that you are hanging in there. Know we are praying for your family and your grandmother.)
Blessings,
Leah
Joshua is starting to perk up. When I went in to see him yesterday he was smiling and blowing me kisses!! That was so nice to see. He still has a little diarrhea and his electrolytes are still a little out of whack but much better than where they were. Last night he fell asleep in my lap. At almost a year old this should be a daily occurrence! Joshua and I have only had that pleasure a couple times in the last several months. I hated to put him down.
He is back out on the floor now. He moved down Wednesday Night. He is in room 4014.
I am glad that he is out on the floor now but I have to say I REALLY enjoyed touching base with everyone, especially Brooke and Betsy! :)
Trevor is feeling better too. He hasn't coughed at all in several days. He still can't hear too well but I assume that will get better with the antibiotic course. (I hope!) He is so sensitive that he gets hurt feelings when I raise my voice but if I don't he can't hear me.
It is hard for me to believe that the two weeks with the kids is almost up. It wasn't too fun this last week sitting in isolation. UGH. Hopefully they will remember more than just being bored while they were here.
Well I hope that all of you are having a nice start to 2009. (Darla, my friend, I hope that you are hanging in there. Know we are praying for your family and your grandmother.)
Blessings,
Leah
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