I thought I should update our blog before it hits the 2 month mark since our last post... sorry!!
Winter has never bothered me much before this winter. I actually look forward to each season. However, the germs of winter this year are killing me! This year has actually been one of our healthiest- for Joshua and Luke that is. Whatever luck we have experienced with Joshua and Luke has been counteracted by Matthew. Remember the little cold Matthew was getting over about 2 months ago??? He's still getting over it! Matthew's pediatrician treated him for a chronic ear infection as a result of this cold with 4 rounds of antibiotics. Matthew has had a fever for over a month and has been extra sleepy. We were told Matthew may have developed luekemia which is a common cancer seen amoung transplant recipients because of the steriods they have to take to avoid rejection. We went to see an infectious disease doctor and he told me to take a huge sigh of relief because Matthew did not have luekemia, however; he suspected Matthew was in rejection. I MUST be insance because I immediately felt a lot of relief. What is wrong with me??? We ended up in cardiology doing lots of bloodwork and an echo, but everything looked good there. Echo's are not completely reliable in ruling out rejection, but cardiology wanted to explore every option before rushing in to do a heart biopspy when everything else looked good. More relief. Last week we spent 4 out of 5 days at the hospital or in doctor's offices. This week we got a CT scan of Matthew's head and discovered that he has severe sinusitis and horrible ear infections. I'll take it over leukemia or rejection! Matthew's transplant cardiologist told us that she really wanted to get on top of this because sinus infection can enter children's brain in immune suppressed patients- so we have an appointment with an ear, nose, and throat doctor tommorrow. Why not?? We haven't seen an ENT specialist with Matthew yet. They are planning to scope him to see what kind of infection he has so we can treat it approriately because obviously it hasn't gone away given the 40 plus days of antibiotics he's already been on. Matthew will probably get tubes in his ears as well.
So, in a nutshell, this is how my last two months have been spent. I really want to get all of this resolved because any time Matthew has sickness that imitates the signs of rejection I always worry that he could be in rejection, but his sickness masks it. That's what happened a year ago when Matthew was sick and his sickness was covering up the fact that he was actually in heart failure needing to be put on the transplant list. Tommorrow we will get more answers and hopefully a gameplan to get Matthew better.
I think my new best friend is Punxsutawney Phil- the groundhog who did not see his shadow yesterday therefore, predicting an early Spring. :) Let's all pray he's right!
Thursday, February 3, 2011
Sunday, December 5, 2010
We hope everybody is doing well this Holiday season! Life is always busy in December and it's been a great blessing this year as it keeps my mind off other "stuff." Although, lately the "stuff" has been pretty good. Matthew is still trying to fight off the cold Luke shared about 2 months ago. It's crazy, it seems to come and go, but everybody has been healthy here and he doesn't go anywhere else- so we are assuming it's the same bug. Matthew has had 2 ear infections as a result and has been treated with 2 antibiotics. Because he's on an antibiotic, he gets diarhea and because he has diarhea it messes up Matthew's absorption of his anti-rejection meds. So, lately we've been getting blood drawn more frequently. As it turns out, he hasn't absorbed one of his meds at all as it was "undetected" in his blood work. Matthew's cardiologist was going to continue with the wean of his steroids this month, but we are going to hold steady until we can get his blood levels where they need to be. I guess this is why I am confined to home still-- his body has a hard time fighting off ANYTHING. Even minor illness ends up being a big deal.
Matthew has some minor surgery scheduled for this Tuesday. He is getting his tube in his belly switched out for a button. I am certainly grateful we got that tube even though we fought against it for a long time. It is much better than an NG tube. Matthew is still not eating much, so he gets 95% of his nutrition through his tube.
As for the rejection, at Matthew's last appointment his echo and everything still looked great. We are just hoping and praying that things continue to look good. If so, we won't repeat a biopsy until February.
We hope everybody is doing well and gearing up for the most amazing time of the year. Love to all!!
Matthew has some minor surgery scheduled for this Tuesday. He is getting his tube in his belly switched out for a button. I am certainly grateful we got that tube even though we fought against it for a long time. It is much better than an NG tube. Matthew is still not eating much, so he gets 95% of his nutrition through his tube.
As for the rejection, at Matthew's last appointment his echo and everything still looked great. We are just hoping and praying that things continue to look good. If so, we won't repeat a biopsy until February.
We hope everybody is doing well and gearing up for the most amazing time of the year. Love to all!!
Wednesday, November 10, 2010
I read this quote the other day and it's been my motivation this week: "Life is hard, but life is simple. Get on the path and never, ever give up. You never give up. You just keep on going. You don't quit, and you will make it." Lawrence E. Corbridge
I'll start with all the good news that we've received, because truthfully, we have been blessed in so many ways. On November 2nd Matthew had his vesicoureteral reflux follow up study. We were told just before Matthew's transplant and after his last nuclear sonogram that Matthew still had grade III reflux which was unchanged since they discovered it at birth. Urology told us that Matthew would need surgery 6 months after Matthew's transplant. So, we went to our appointment fully expecting to go home with a scheduled surgery date. After the study, when we met with Dr. Wallis, he told us that Matthew had grown out of his reflux and that he could not see ANY reflux on the sonogram. Dr. Wallis continued to tell us that this was very uncommon. Usually, when kids grow out of reflux they grow out of it a grade at a time and they hardly ever see improvement in six months time. He told us we could discontinue Matthew's prophlaxis dose of antibiotics and that we didn't need to see him again unless Matthew got a urinary tract infection. Yippee!!! We eliminated one specialist and one drug from the list.
On Monday, Matthew had his heart catheterization and biopsy. Things looked so good!! His pulmonary pressures and diastolic function finally normalized. Matthew's echo looked great and his EKG looked perfect. We didn't have the pathology report from the biopsy back yet, but after talking to the cardiologist we all felt confidant that Matthew was finally over his rejection and his heart had recovered. After a VERY long day at the hospital I called Matt on the way home to share the great news with him. I told him that I felt like I could sigh a huge sigh of relief for the first time since Matthew's transplant. Then we joked about how everytime we allowed ourselves to feel optimistic about anything was usually when things changed. Then..... we got the pathology report back. Matthew has cellular and vascular rejection and he has it worse than the last rejection episode. The transplant team called and told me that they weren't going to treat it with high dose steroids. They felt like at this point, continued high doses of steriods may not be good for Matthew. They feel like because everything else looked good we are going to wait and see what happens and hope that Matthew's body will take care of it on it's own. Monday night and all day yesterday were super long days for me as I tried to wrap my head around what was happening and what could happen as we look to Matthew's future. It's true, we have always known that transplant is not a cure. We know that Matthew is still very sick. But still, we were hoping to make it through the first year with no rejection episodes and now he has faced two episodes in the first 6 months. I know that Matthew has the best medical care available and that he is on the very best drugs they make. Still, I am scared! I am scared that modern medicine may not be enough. I am scared to recognize the limitations of medicine and realize that we are running out of options.
Today I went back to Primary Children's to get a chest Xray. Matthew gets continuous feeds during the night and woke up in a coughing rage which kept him up all night. They felt like maybe he had aspirated some of his feeds and had pneumonia. Luckily, his chest Xray is clear. He probably has another virus they say. He also had some complications on Monday when he was extubated after his biopsy his airway closed off so they had to re-intubate him. The transplant team thought maybe there was some residual irritation that was caused by all of that. Who knows? Only time will tell I guess.
In the meantime we will continue to stay on the path and never give up. We will keep going day by day and sometimes minute by minute.
I'll start with all the good news that we've received, because truthfully, we have been blessed in so many ways. On November 2nd Matthew had his vesicoureteral reflux follow up study. We were told just before Matthew's transplant and after his last nuclear sonogram that Matthew still had grade III reflux which was unchanged since they discovered it at birth. Urology told us that Matthew would need surgery 6 months after Matthew's transplant. So, we went to our appointment fully expecting to go home with a scheduled surgery date. After the study, when we met with Dr. Wallis, he told us that Matthew had grown out of his reflux and that he could not see ANY reflux on the sonogram. Dr. Wallis continued to tell us that this was very uncommon. Usually, when kids grow out of reflux they grow out of it a grade at a time and they hardly ever see improvement in six months time. He told us we could discontinue Matthew's prophlaxis dose of antibiotics and that we didn't need to see him again unless Matthew got a urinary tract infection. Yippee!!! We eliminated one specialist and one drug from the list.
On Monday, Matthew had his heart catheterization and biopsy. Things looked so good!! His pulmonary pressures and diastolic function finally normalized. Matthew's echo looked great and his EKG looked perfect. We didn't have the pathology report from the biopsy back yet, but after talking to the cardiologist we all felt confidant that Matthew was finally over his rejection and his heart had recovered. After a VERY long day at the hospital I called Matt on the way home to share the great news with him. I told him that I felt like I could sigh a huge sigh of relief for the first time since Matthew's transplant. Then we joked about how everytime we allowed ourselves to feel optimistic about anything was usually when things changed. Then..... we got the pathology report back. Matthew has cellular and vascular rejection and he has it worse than the last rejection episode. The transplant team called and told me that they weren't going to treat it with high dose steroids. They felt like at this point, continued high doses of steriods may not be good for Matthew. They feel like because everything else looked good we are going to wait and see what happens and hope that Matthew's body will take care of it on it's own. Monday night and all day yesterday were super long days for me as I tried to wrap my head around what was happening and what could happen as we look to Matthew's future. It's true, we have always known that transplant is not a cure. We know that Matthew is still very sick. But still, we were hoping to make it through the first year with no rejection episodes and now he has faced two episodes in the first 6 months. I know that Matthew has the best medical care available and that he is on the very best drugs they make. Still, I am scared! I am scared that modern medicine may not be enough. I am scared to recognize the limitations of medicine and realize that we are running out of options.
Today I went back to Primary Children's to get a chest Xray. Matthew gets continuous feeds during the night and woke up in a coughing rage which kept him up all night. They felt like maybe he had aspirated some of his feeds and had pneumonia. Luckily, his chest Xray is clear. He probably has another virus they say. He also had some complications on Monday when he was extubated after his biopsy his airway closed off so they had to re-intubate him. The transplant team thought maybe there was some residual irritation that was caused by all of that. Who knows? Only time will tell I guess.
In the meantime we will continue to stay on the path and never give up. We will keep going day by day and sometimes minute by minute.
Wednesday, October 20, 2010
I'm always talking about my friend whose little baby got a heart transplant two weeks prior to Matthew's getting his heart transplant. I thought you might be interested in seeing this link. Landon was the first to receive an incompatible heart transplant at Primary Children's- pretty amazing! This is an incredible family and I love the friendship that has developed between Tammy and I! The transplant cardiologist who was interviewed is also Matthew's cardiologist- Melanie Everitt. She is awesome!! Here is the link:
ksl.com - Lehi infant receives hospital's first incompatible heart transplant
We are doing good. Luke brought home a nasty cold from preschool and then passed it on to Matthew. I think this is Matthew's worst illness being on immune suppressants. We are holding our breath and waiting to see how he does. He's a trooper! We may need to consider preschool at home- at least during the cold/flu/RSV months...
Next on the docket for Matthew: He has a follow up ureteral reflux test on November 2nd, depending on what they find Matthew may have surgery in the near future. He has a heart biospy which will be scheduled the week of November 8th. We are hoping for good heart function and NO rejection. In early December he will have a procedure to change out his "tube" that was just placed to a "button". This will be nice because then his tube won't get caught in his shirt and he won't be at as high of a risk for pulling his tube out which would result in an ER visit to replace the tube. In the meantime, we will carry our "emergency gastrostomy kit" with us wherever we go. Always something with this sweet little man! He keeps us busy!
ksl.com - Lehi infant receives hospital's first incompatible heart transplant
We are doing good. Luke brought home a nasty cold from preschool and then passed it on to Matthew. I think this is Matthew's worst illness being on immune suppressants. We are holding our breath and waiting to see how he does. He's a trooper! We may need to consider preschool at home- at least during the cold/flu/RSV months...
Next on the docket for Matthew: He has a follow up ureteral reflux test on November 2nd, depending on what they find Matthew may have surgery in the near future. He has a heart biospy which will be scheduled the week of November 8th. We are hoping for good heart function and NO rejection. In early December he will have a procedure to change out his "tube" that was just placed to a "button". This will be nice because then his tube won't get caught in his shirt and he won't be at as high of a risk for pulling his tube out which would result in an ER visit to replace the tube. In the meantime, we will carry our "emergency gastrostomy kit" with us wherever we go. Always something with this sweet little man! He keeps us busy!
Thursday, October 7, 2010
I will apologize up front if this post doesn't make much sense. I'm somewhat sleep deprived and my brain is only partially functioning today. We were able to bring Matthew home from the hospital yesterday. Oh, how good it feels to be home! For the first time in about 4 1/2 months Matthew's sweet little face is free of any tubes! He is so beautiful!! We will have to snap some pictures and post them once his face heals from all the tegaderm injuries he's acquired in the past from keeping his NG tube in place.
The surgery for Matthew's gastrostomy tube placement went well. It's a little strange to think that when I open the cap at the tip of his tube to give him meds or food, I am basically dumping it all right into his belly. I'm not sure if I feel like this is an improvement from what we had before, but I guess it was a necessary step. Matthew is actually eating a little bit by mouth since his surgery. If having the Peg tube helps Matthew to eat better, I guess all of this was worth it.
The hospital stay went better than expected. The worse part was when he woke up right after surgery. Of course, Matthew had a difficult time waking up from the anesthesia like always. The hospital only allows one parent into the post operative recovery room so I got to go back with him. I heard him screaming as soon as the doors to the unit opened- all I had to do was follow his voice to find him. The nurse wanted me to console him and hold his oxygen in place while she worked on discharge paperwork so that he could be admitted to the floor as quickly as possible. Let's be honest, if I was a nurse and had a patient like Matthew post anesthesia, I would be doing the same thing. I could see that his IV was loose already, probably from his thrashing prior to my arrival. They secured it with additional tape. About 10 minutes later, and while Matthew was still obviously very unhappy the nurse informed me that it was time for me to hold him in my arms and walk him upstairs to his inpatient room with the nurse's aid who would be escorting me. We almost made it to the exit doors of the unit, probably the busiest part of that area, when I noticed blood all over Matthew, my shirt, Matthew's blanket and on the floor. When I saw the aid staring at me along with about six or more other desk receptionists, and nurses who were all doing nothing but staring at us with their mouths opened I yelled "somebody help me please!!!" I think everybody was in shock- they all started putting gloves on but I don't think anybody really knew what to do. I've been through a lot of hospital experiences with Matthew and not all of them have been pretty, but I've always maintained a calm, nice disposition. However, when I saw the blood pooling all over the floor, literally soaking me and Matthew and I wasn't sure exactly what to do or where the blood was coming from and I could clearly see that nobody around me knew what to do I ordered that my husband come in the room right now. Matt walked through the doors and asked what in the world was going on?? As it turns out, Matthew had pulled out his IV in his struggles and post anesthesia delerium. He also somehow pulled off this cup that was attached to his G tube to catch any blood or other drainage from the surgery. They moved us to a side room, called the GI doctor and quickly got the bleeding stopped. When the GI doctor came into the room he asked me if I was wearing a tye-dye shirt or if that was blood all over me? Yep, it was blood which soaked through all 3 layers of my clothing! Never underestimate the blood thinning agents in Aspirin! Matthew takes Aspirin every day and it definitely does it's job!
After we got to Matthew's room things were smooth sailing. Once Matthew woke up, he tolerated everything much better and things calmed down a lot. We ended up being two hospital rooms down from our friends Faith and Shawn Garff whose little baby who was born with hyposplastic left heart. Cruz had just had his Glenn surgery about 4 days earlier. When Matthew had his transplant, Cruz was born and we were in the hospital back then together also. Baby Cruz seemed to be doing well when we left the hospital yesterday and sure is a sweet little guy! You know your a hospital frequent flier when you know your patient neighbors in the hospital.
Yesterday and last night, Matt was on call at the hospital. I was a little nervous to bring Matthew home, but things went well. He did throw up in the middle of the night. I think he's still recovering and needs to take his feeds more slowly. He was so excited to get home yesterday that he wore himself out trying to keep up with Luke running all over the house. Today he's been really sleepy! Hopefully he will pace himself and have a full recovery soon. Until then, I am dreading the daily dressing changes on his new tube... yikes!
The surgery for Matthew's gastrostomy tube placement went well. It's a little strange to think that when I open the cap at the tip of his tube to give him meds or food, I am basically dumping it all right into his belly. I'm not sure if I feel like this is an improvement from what we had before, but I guess it was a necessary step. Matthew is actually eating a little bit by mouth since his surgery. If having the Peg tube helps Matthew to eat better, I guess all of this was worth it.
The hospital stay went better than expected. The worse part was when he woke up right after surgery. Of course, Matthew had a difficult time waking up from the anesthesia like always. The hospital only allows one parent into the post operative recovery room so I got to go back with him. I heard him screaming as soon as the doors to the unit opened- all I had to do was follow his voice to find him. The nurse wanted me to console him and hold his oxygen in place while she worked on discharge paperwork so that he could be admitted to the floor as quickly as possible. Let's be honest, if I was a nurse and had a patient like Matthew post anesthesia, I would be doing the same thing. I could see that his IV was loose already, probably from his thrashing prior to my arrival. They secured it with additional tape. About 10 minutes later, and while Matthew was still obviously very unhappy the nurse informed me that it was time for me to hold him in my arms and walk him upstairs to his inpatient room with the nurse's aid who would be escorting me. We almost made it to the exit doors of the unit, probably the busiest part of that area, when I noticed blood all over Matthew, my shirt, Matthew's blanket and on the floor. When I saw the aid staring at me along with about six or more other desk receptionists, and nurses who were all doing nothing but staring at us with their mouths opened I yelled "somebody help me please!!!" I think everybody was in shock- they all started putting gloves on but I don't think anybody really knew what to do. I've been through a lot of hospital experiences with Matthew and not all of them have been pretty, but I've always maintained a calm, nice disposition. However, when I saw the blood pooling all over the floor, literally soaking me and Matthew and I wasn't sure exactly what to do or where the blood was coming from and I could clearly see that nobody around me knew what to do I ordered that my husband come in the room right now. Matt walked through the doors and asked what in the world was going on?? As it turns out, Matthew had pulled out his IV in his struggles and post anesthesia delerium. He also somehow pulled off this cup that was attached to his G tube to catch any blood or other drainage from the surgery. They moved us to a side room, called the GI doctor and quickly got the bleeding stopped. When the GI doctor came into the room he asked me if I was wearing a tye-dye shirt or if that was blood all over me? Yep, it was blood which soaked through all 3 layers of my clothing! Never underestimate the blood thinning agents in Aspirin! Matthew takes Aspirin every day and it definitely does it's job!
After we got to Matthew's room things were smooth sailing. Once Matthew woke up, he tolerated everything much better and things calmed down a lot. We ended up being two hospital rooms down from our friends Faith and Shawn Garff whose little baby who was born with hyposplastic left heart. Cruz had just had his Glenn surgery about 4 days earlier. When Matthew had his transplant, Cruz was born and we were in the hospital back then together also. Baby Cruz seemed to be doing well when we left the hospital yesterday and sure is a sweet little guy! You know your a hospital frequent flier when you know your patient neighbors in the hospital.
Yesterday and last night, Matt was on call at the hospital. I was a little nervous to bring Matthew home, but things went well. He did throw up in the middle of the night. I think he's still recovering and needs to take his feeds more slowly. He was so excited to get home yesterday that he wore himself out trying to keep up with Luke running all over the house. Today he's been really sleepy! Hopefully he will pace himself and have a full recovery soon. Until then, I am dreading the daily dressing changes on his new tube... yikes!
Friday, October 1, 2010
Things have been pretty good and stable since the last biopsy. These past two weeks we've been chasing Matthew's Prograf level, but we are hoping to get that stabilized soon. Matthew goes in for surgery on Tuesday to get his Peg tube (gastric tube) placed. It's suppose to be an overnight stay- I'm dreading it! Who knows what kinds of memories this experience will dig up... poor little Matthew! He's getting a Peg tube because he is still not eating at all. Since his transplant, Matthew gets all of his nutrition through his NG tube. He is finally gaining weight, but we keep praying he will some day gain weight because of what HE is putting in his mouth not because of what we put down his tube. We are hoping that any food aversions, discomforts, or gastric reflux that can occur with an NG tube will go away with a Peg tube and that he will magically start eating like a champ again. We'll see... it's okay to dream right? Please keep him in your prayers!
Now that his heart is looking good, the cardiologists are wanting to focus on Matthew's kidney issues that have always taken a back seat to his heart issues. Matthew has ureteral reflux which has not improved since birth. We will go in for some testing on November 2nd to see if the reflux has improved since our last test about 6 months ago. Reflux usually does not improve in 6 months so mentally we are planning on another surgery for that before the year is over.
Matthew's next biopsy will also be in early November sometime. We are hoping to find normalized pressures and NO rejection!!
It looks like it is going to be a busy Fall! We have enjoyed these past few weeks- the calm before the storm, I guess. Matthew is one tough little guy! Our kids all got the flu shot this week and you would've thought the end of the world came right in the Dr's office-- Matthew just keeps plugging along and takes life as it comes dealing with everything wonderfully. We sure love all of our kids!
Now that his heart is looking good, the cardiologists are wanting to focus on Matthew's kidney issues that have always taken a back seat to his heart issues. Matthew has ureteral reflux which has not improved since birth. We will go in for some testing on November 2nd to see if the reflux has improved since our last test about 6 months ago. Reflux usually does not improve in 6 months so mentally we are planning on another surgery for that before the year is over.
Matthew's next biopsy will also be in early November sometime. We are hoping to find normalized pressures and NO rejection!!
It looks like it is going to be a busy Fall! We have enjoyed these past few weeks- the calm before the storm, I guess. Matthew is one tough little guy! Our kids all got the flu shot this week and you would've thought the end of the world came right in the Dr's office-- Matthew just keeps plugging along and takes life as it comes dealing with everything wonderfully. We sure love all of our kids!
Wednesday, September 1, 2010
Matthew had another biopsy yesterday. It's funny how after experiencing so many lows after awhile you don't anticipate good news coming. When it does come, it's wonderful! The interventional cardiologist took 6 pieces of Matthew's heart and all six pieces were clean showing no evidence of rejection!! His heart function was still down and unchanged from the previous biopsy, but the cardiologists are hopeful that Matthew's function will improve over time which could take several months. Yesterday was a long day- because his heart function was still down I think we all suspected more rejection. We all waited on pins and needles for the pathology report to come back and got word around 5:00pm that things looked good. We are so grateful for everybody involved in Matthew's care. Literally, the transplant team, and everybody we've come to know and love at Primary Children's Medical Center is like a second family to us.
The plan for Matthew now is to keep his steriod dose where it is for at least two more weeks. The transplant cardiologist is out of town until then and nobody wants to rock the boat while she is gone. I would imagine they will repeat another biopsy in the future, but today we are enjoying the good news and living in this moment! :)
Thanks to all of you for your continued prayers, love and support. We could not do this without all of you!
The plan for Matthew now is to keep his steriod dose where it is for at least two more weeks. The transplant cardiologist is out of town until then and nobody wants to rock the boat while she is gone. I would imagine they will repeat another biopsy in the future, but today we are enjoying the good news and living in this moment! :)
Thanks to all of you for your continued prayers, love and support. We could not do this without all of you!
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