I haven't blogged in a while because I've been so busy but I forgot that people actually read this for updates! For me, it's a therapeutic journal...Danny has been home for a couple of weeks and is slowly recovering. His abdomen is still red and "infected" looking, but he has no other signs of infection. The doctors truly have no idea what the redness is and don't have any more tests to try. So, we watch and wait. His heart biopsies are still showing no signs of rejection, but a new rejection determining test (done by bloodwork--called MAP) is showing slight rejection. Apparently it's a little more accurate than the biopsy and even though is shows slight rejection, I don't think it's enough to really worry about at this point. The doctors are still adjusting Danny's medicines regularly as routine blood work results become available. Though his incision is healing correctly this time, Danny still doesn't feel very good. Overall he is improving and getting stronger, but it's a slow process. Headaches, body aches, swelling, eye pain, fluid retention, mood swings, etc... I have gone back to work and am pleased to say that the Lord has changed my attitude and outlook on working. It's hard, but not the hardest thing in life and I'll be fine!! Maggie and Charlie are happy we are home. As would be expected they each struggled.struggle in their own ways with Danny and I being gone, but we are working through those challenges together. It's nice to have a parenting partner at home again...even if he helps from the bed mostly. :)
Hopefully Danny will continue to slowly and steadily improve. It would be an awesome miracle if he never had rejection issues to worry about. I'm so grateful he's home. Thank you for your prayers and support. It has been such a blessing for us!
~Tricia
Wednesday, March 26, 2014
Monday, March 10, 2014
Repeat mystery area
When Danny went in the hospital for the surgery to reopen his sternum, flush it out, and close it correctly we anticipated that he would be home a few days later. That surgery was on 2/27/14 and it is now 3/10/14 (11 days later). The doctors knew about the complication because of the inflamed, red area on the bottom of Danny's sternum. As unbelievable as it is, he has a new inflamed, red area and inch or two where it was before. The nurses and doctors are completely baffled. So far the bloodwork and cultures are testing negative for infections, but it's possible he could have an uncommon bug they are not testing for. His body is showing signs of a problem other that the big red area on his sternum. His temp has been a little higher than what's normal for Danny and his BP and pulse have also been high for him (at rest). So, even though the doctors don't yet know what they are dealing with, they do know there is a problem...and they are concerned. The doctor on call over the weekend for the heart team saw him on Saturday and took a picture of Danny's sternum (to send it to the surgeon who was out of town over the weekend) and Sunday when she looked at his chest her mouth dropped open. I would love to say that Danny and I are making a bigger deal out of this than we should be, but we aren't. It's not good to have had a heart transplant, a suppressed immune system, and then have a mysterious area that looks incredibly suspicious for infection. Danny had an ultrasound yesterday and just like the first time, something is showing up on the ultrasound, but they don't know what it is. Danny is still hopeful that it's a cool little alien friend living in his abdomen.
The doctors are still tweaking his pain meds trying to find the right one to alleviate his pain. They just came in for rounds and the thought is that it's fluid collecting again...or still, really. When they pulled out the chest tube the other day it was still draining but because his abdomen was starting to get red and inflamed again, they removed the tube to eliminate the possibility of it causing infection. I don't understand why if the chest tube was in and was draining why his sternal area started getting inflamed and red again in the same general area. I think they will put in a wound vac because the surgeon told us after this latest surgery that the next step would be a wound vac if necessary. Apparently they are amazing at stimulating healing. Danny's sternum is just having a really hard time healing and having a suppressed immune system makes it very tricky. They have to lower the immuno-suppressant medicines to enable his sternum to heal (and fluid go away), but if they aren't careful his body will reject his foreign heart.
We don't know if they are just going to wait and see what happens or do something surgically (proactive)...but I do know they won't send him home until his pain is managed and they feel comfortable knowing for sure what's going on with his sternum/fluid issue.
This is my last week with Danny before my leave is over and I have to go back to work. The kids have been struggling with the pressure of all of this and so I am going home at night and back to New Orleans during the day. If Danny is still here next week it is going to be awful not being able to see him during the day.
Though I know for sure that God is good and faithful, and I know for sure that He loves us and has not forsaken us, all of this is still very, very hard. I haven't learned those things through this experience because I've already learned them through previous life experiences. What I'm learning through this trial is that He is the perfect comforter. People try to comfort-and many do. However, some people are hurtful (unintentionally I'm sure) and that is so hard. When we are in survival mode, our feelings and emotions are fragile and vulnerable. I think maybe things that are hurtful to us now maybe wouldn't be in times of life when things are smooth sailing. Anyway, I'm learning to give that hurt to the Lord and allow him to comfort me and bring me to forgiveness. Forgiveness can be so tough and I'm not an expert by any means!! I am an open person who wears my feelings on my sleeves. God is teaching me and convicting me to take my troubles to Him first. He does use the body of Christ, friends, family...to support each other...but God should be our primary source of comfort. I hope I learn that lesson well through this time of trial.
Prayer requests:
Danny's fluid/sternum/solution/pain
Maggie & Charlie (God knows their needs)
Tricia: strength, learn God's lessons, work next week, parenting, support Danny
Thanks and God Bless,
~T
The doctors are still tweaking his pain meds trying to find the right one to alleviate his pain. They just came in for rounds and the thought is that it's fluid collecting again...or still, really. When they pulled out the chest tube the other day it was still draining but because his abdomen was starting to get red and inflamed again, they removed the tube to eliminate the possibility of it causing infection. I don't understand why if the chest tube was in and was draining why his sternal area started getting inflamed and red again in the same general area. I think they will put in a wound vac because the surgeon told us after this latest surgery that the next step would be a wound vac if necessary. Apparently they are amazing at stimulating healing. Danny's sternum is just having a really hard time healing and having a suppressed immune system makes it very tricky. They have to lower the immuno-suppressant medicines to enable his sternum to heal (and fluid go away), but if they aren't careful his body will reject his foreign heart.
We don't know if they are just going to wait and see what happens or do something surgically (proactive)...but I do know they won't send him home until his pain is managed and they feel comfortable knowing for sure what's going on with his sternum/fluid issue.
This is my last week with Danny before my leave is over and I have to go back to work. The kids have been struggling with the pressure of all of this and so I am going home at night and back to New Orleans during the day. If Danny is still here next week it is going to be awful not being able to see him during the day.
Though I know for sure that God is good and faithful, and I know for sure that He loves us and has not forsaken us, all of this is still very, very hard. I haven't learned those things through this experience because I've already learned them through previous life experiences. What I'm learning through this trial is that He is the perfect comforter. People try to comfort-and many do. However, some people are hurtful (unintentionally I'm sure) and that is so hard. When we are in survival mode, our feelings and emotions are fragile and vulnerable. I think maybe things that are hurtful to us now maybe wouldn't be in times of life when things are smooth sailing. Anyway, I'm learning to give that hurt to the Lord and allow him to comfort me and bring me to forgiveness. Forgiveness can be so tough and I'm not an expert by any means!! I am an open person who wears my feelings on my sleeves. God is teaching me and convicting me to take my troubles to Him first. He does use the body of Christ, friends, family...to support each other...but God should be our primary source of comfort. I hope I learn that lesson well through this time of trial.
Prayer requests:
Danny's fluid/sternum/solution/pain
Maggie & Charlie (God knows their needs)
Tricia: strength, learn God's lessons, work next week, parenting, support Danny
Thanks and God Bless,
~T
Wednesday, March 5, 2014
On the Road Again
The song On the Road Again keeps coming to my mind... Danny and I are so ready to get back home again!!!
Danny is able to use the bathroom without trouble or pain now and he is sleeping through the night, which is something he hasn't been able to do in a long time. The amount of fluid his chest tube is putting out is still over the limit, so we are waiting on that to slow down a lot. If the tube is removed too quickly then the extra fluid may seep out through his sternal incision instead of being reabsorbed into his body. So, the best thing to do is to be very patient and let the chest tube do its job!
Danny is still using a pain pump that he will keep until the chest tube is removed. The good news is that when he needs the pump, it works...however, he doesn't need it nearly as much as he did in previous days. Danny will be transitioned over to oral pain meds with IV pushes for breakthrough pain when the chest tube is removed.
I thought the incision the surgeon did this last time was to reopen the bottom 6 cm of the sternal incision, but apparently I misunderstood. The surgical bandage was finally removed today and it's 6 inches, not centimeters. That makes more sense to me because I was having a hard time understanding how he could drain fluid, flush, scrape, and stitch in a 6 cm opening!
Danny's arms look soooo sad...the slightest touch hurts.His veins are not cooperative anymore!
We try to go for several walks each day. It's kind of hard because Danny needs to walk to recover more quickly, but walking makes more fluid drain through the chest tube thereby keeping him hospitalized longer...
Danny is able to use the bathroom without trouble or pain now and he is sleeping through the night, which is something he hasn't been able to do in a long time. The amount of fluid his chest tube is putting out is still over the limit, so we are waiting on that to slow down a lot. If the tube is removed too quickly then the extra fluid may seep out through his sternal incision instead of being reabsorbed into his body. So, the best thing to do is to be very patient and let the chest tube do its job!
Danny is still using a pain pump that he will keep until the chest tube is removed. The good news is that when he needs the pump, it works...however, he doesn't need it nearly as much as he did in previous days. Danny will be transitioned over to oral pain meds with IV pushes for breakthrough pain when the chest tube is removed.
I thought the incision the surgeon did this last time was to reopen the bottom 6 cm of the sternal incision, but apparently I misunderstood. The surgical bandage was finally removed today and it's 6 inches, not centimeters. That makes more sense to me because I was having a hard time understanding how he could drain fluid, flush, scrape, and stitch in a 6 cm opening!
 |
| Bottom 6 inches reopened...that's about half! What's still covered is the chest tube exit site. |
Danny's arms look soooo sad...the slightest touch hurts.His veins are not cooperative anymore!
 |
Bruises from IV's and blood work |
We try to go for several walks each day. It's kind of hard because Danny needs to walk to recover more quickly, but walking makes more fluid drain through the chest tube thereby keeping him hospitalized longer...
Prayer requests:
- Chest tube stops draining or slows down considerably
- Easy transition to oral pain meds from the pump
- Sternum stays closed tightly with no leaking
- The 1st three lead to going home soon!!
- Our children
God Bless,
Danny & Tricia  |
Saturday, March 1, 2014
Persistence
I admire Danny's persistence...I would have given up the battle more than an hour ago. After receiving a pretty good amount of IV fluids and drinking water orally, Danny finally feels the urge to urinate. His bladder feels full and despite his valiant efforts, so far nothing! This began at 12:00 am and it is now almost 2:00 am. I'm not sure what else he could do to force his body to urinate. He rotates between sitting, standing, bedside, bathroom, running water, silence, praying out loud, praying quietly...His pain medicine pump is now out of medicine and is beeping steadily and loudly. He refuses to call the nurse in to refill the medicine because then the nurse would do the bladder scan to know exactly how much urine Danny has, and then the nurse would probably have to do another in and out catheter...Danny (against my advice) is choosing not to call the nurse about the pain medicine being out and is absolutely determined to go to the bathroom on his own...even though that means he will be totally behind on pain medicine.
Persistence. Like I said, I would have given up already!! Clearly the catheter hurts pretty badly for him to give up pain medicine for now. The nurse told Danny he was going to give him until midnight to use the bathroom and then comes the bladder scan, a call to the doctor with results, and probably in and out! It's two hours after midnight and still the nurse hasn't come in. That means Danny is seriously running out of time!!! Who will win the battle of the wills...Will Danny be able to urinate on his own without pain medication? Or, will he be forced to give up by the nurse??!!?!?! Stay tuned...
Persistence. Like I said, I would have given up already!! Clearly the catheter hurts pretty badly for him to give up pain medicine for now. The nurse told Danny he was going to give him until midnight to use the bathroom and then comes the bladder scan, a call to the doctor with results, and probably in and out! It's two hours after midnight and still the nurse hasn't come in. That means Danny is seriously running out of time!!! Who will win the battle of the wills...Will Danny be able to urinate on his own without pain medication? Or, will he be forced to give up by the nurse??!!?!?! Stay tuned...
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