Lil Mark came down with a virus late Tuesday evening. I took him to the ped on Wednesday. Thankfully the flu and strep test were negative. He was really not well so we kept Mark and Broc a part as much as we could. Lil Mark was quarantined in our room until his fever was gone. Unfortunately Broccoli woke up on Thursday morning with a fever. It was a little higher than what he is so we took him in for some lab work. His numbers showed that he was fighting something.
By late afternoon he was not well at all. I emailed his hematologist and he said that we could watch him closely. When his fever shot up to 102.6 I called his GI team at Riley and they said to bring him down. When Broc gets a fever of 101 we have to bring him to Riley to be evaluated and worked up for a possibke line infection.
Mikki and I packed our bags and food and headed down. Thankfully I had called ahead so they were expecting him. We were trriaged very quickly and more labs were drawn. They started with the small antibiotics and then got us upstairs as soon as they could.
Once we got to the room they started 2 big antibiotics. When you come into the hospital with a central line and a fever you stay on iv for 48hrs.
Brocs belly also shutdown once again so we quit all feeds for a day or two. Yesterday we did pedialite only. We just added formula to that. So once again we hope he will tolerate half and half.
Today he slept until noon so we were a little concerned but now he is up in the chair and feeling much better. He is still very congested and puffy looking. We know he is getting better cause he started singing this evening.
If everything goes well tonight we can leave tomorrow. We will be back in a week as Broc was scheduled to be here from Jan 4-7.
Thank you to everyone for all the support with Brocs fundraiser. Thank you too for all the love prayers and support.
Saturday, December 26, 2015
Tuesday, December 22, 2015
Brocs Buddies Fundraiser
Brocs Buddies Fundraiser is coming to a close in 2 Days!!!
If you haven't bought a t-shirt now is your chance to get one.
It ends December 24 2015
www.booster.com/brocsbuddies2
Thank you to everyone that has supported our Buddies fundraiser.
Sunday, December 13, 2015
G I happenings and some results
A couple days after my last post we saw Brocs GI Dr. A very caring Dr who is always thinking positive. The last time we saw him I had mentioned "IF" Brocs gets off TPN then where do we go from there? He immediately stopped me in my tracks and said not "IF", we say "WHEN". Since he has been following Broc for a couple months now and with my many phone calls and questions he is beginning to see the bigger picture. We are still waiting for our consult with Dr Croffie at the Motility Clinic. Well Dr S and I spoke about that appointment and his tune is changing a little. He doesn't think that they will be able to offer us much or even the testing that we are eagerly waiting. He is now saying "IF" with me with a very sad tone in his voice.
Since Broc had the Gastro a couple weeks ago his GI system has never been the same. We have tried many times to give him straight formula but it makes him really sick. We are trying half formula, half pedialite for a couple weeks then going to lessen the pedialite until he will tolerate straight formula again. This is a very delicate process as Brocs belly holds onto as much formula as it can without making him too sick. He has not gained much weight in the past couple weeks. We are hoping that his body his just wanting to remain stable and nothing else is going on.
Broc is still dealing with his "episodes" of severe nausea,blurry vision and lightheadedness. He gets really pale when these happen too. Unfortunately Broc is starting to look very pale again more often than not. I know many people say its because he is not going outside and seeing the sun. Not the case, everyday that the sun has been out we have made a point to take him outside for some sunlight and fresh air.
We did Brocs Mitochondrial Results back. We have been told that he doesn't have any Primary Mito Diseases. On the one hand we are very happy and on the other we are still looking for answers. we know these are not the full results and he could still have a secondary Mito Disease or a Mutation which could make it a Primary Disease. We are still anxiously awaiting those results.
Broc is starting to have some very disturbing episodes with his heart when he is exerting himself. His HR is extremely fast and his heart can be seen beating out of his chest just about. He is telling us that his heart is hurting him when he is playing hard. We have already done a 24hr holter monitor test and that was all normal. Brocs case has also been taken to the cardiac conference and they all said that nothing more needs to be done for his heart at this moment. We are very concerned about this so I will be calling the Drs myself tom and not going through the nurse anymore. He was on a bp medication to help with his heart function but they have taken him off that as they thought that it was contributing to his "episodes" that he was having.
In between Broc not feeling well we have had a lots of fun.
Since Broc had the Gastro a couple weeks ago his GI system has never been the same. We have tried many times to give him straight formula but it makes him really sick. We are trying half formula, half pedialite for a couple weeks then going to lessen the pedialite until he will tolerate straight formula again. This is a very delicate process as Brocs belly holds onto as much formula as it can without making him too sick. He has not gained much weight in the past couple weeks. We are hoping that his body his just wanting to remain stable and nothing else is going on.
Broc is still dealing with his "episodes" of severe nausea,blurry vision and lightheadedness. He gets really pale when these happen too. Unfortunately Broc is starting to look very pale again more often than not. I know many people say its because he is not going outside and seeing the sun. Not the case, everyday that the sun has been out we have made a point to take him outside for some sunlight and fresh air.
We did Brocs Mitochondrial Results back. We have been told that he doesn't have any Primary Mito Diseases. On the one hand we are very happy and on the other we are still looking for answers. we know these are not the full results and he could still have a secondary Mito Disease or a Mutation which could make it a Primary Disease. We are still anxiously awaiting those results.
Broc is starting to have some very disturbing episodes with his heart when he is exerting himself. His HR is extremely fast and his heart can be seen beating out of his chest just about. He is telling us that his heart is hurting him when he is playing hard. We have already done a 24hr holter monitor test and that was all normal. Brocs case has also been taken to the cardiac conference and they all said that nothing more needs to be done for his heart at this moment. We are very concerned about this so I will be calling the Drs myself tom and not going through the nurse anymore. He was on a bp medication to help with his heart function but they have taken him off that as they thought that it was contributing to his "episodes" that he was having.
In between Broc not feeling well we have had a lots of fun.
Mark got a new bow tie for his Bible reading.
We went to movies with family.
We took advantage of the amazing weather we have been having.
Just in case you were wondering those are not Brocs flapjacks, they are my dads.
Lil Mark is so excited about learning to play the piano.
Tomorrow Broc will be having his vascular follow-up appointments. We are really hoping to hear the great news that his legs are the same length and that we will only have to be followed every year or two.
Just a reminder that there are about 10 days left to get yourself a Brocs Buddies T-shirt. Here is the link to purchase them.
www.booster.com/brocsbuddies2
Thank you to all of you who have already purchased a t-shirt and supported us.
Thank you for all your love,prayers and support.
Wednesday, November 25, 2015
Neuro Update and another virus
My dad and sister arrived last week. We have been frantically trying to get ready but to no avail so we made things as cozy as we could for them until Mark has some time off of work.
Thankfully they are very easy going and don't mind where they lay there heads as long as its warm and comfy. we love having them here. I have a huge load off my shoulders as I always have someone at home now to get Lil Mark on and off the bus or just watch Broc when I need to run an errand, especially when he doesn't feel good.
My sister is helping with cooking meals for us and my dad is helping me catch up with laundry and organizing the closets etc. I LOVE having them here with us.
Thankfully they are very easy going and don't mind where they lay there heads as long as its warm and comfy. we love having them here. I have a huge load off my shoulders as I always have someone at home now to get Lil Mark on and off the bus or just watch Broc when I need to run an errand, especially when he doesn't feel good.
My sister is helping with cooking meals for us and my dad is helping me catch up with laundry and organizing the closets etc. I LOVE having them here with us.
This was the first night they arrived. The boys couldn't wait to have bed time stories.
My Dad and I took a trip to see Brocs Neurologist. I really love her she is so caring and loving with Broc. She is a little concerned about the episodes that Broc has been having so he will have a 3 day VEEG. Myself and my sister will bring Broc down the first week in Jan. It will be challenging as Broc will be confined to a room for 72 hours straight. We have hoping that he will have an episode during those 3 days to capture it. If not then at least we can rule out any other seizure like activity. We would welcome all visitors for those 3 days. It will be Jan 4-6 2016. She is also waiting for the WES results to come back as are so may of Brocs other Drs too.
Broc was able to have his very first friend sleep over. The 2 of them had so much fun playing Drs and hospitals cause what else do you do when you have a whole room full of medical supplies.
Unfortunately Broc caught a nasty tummy virus over the weekend. Poor Buddy was so ill that he actually vomited past his nissen. He has not been able to throw up since he had his Nissen surgery last year. It was really quite scary as we were very close to packing up and driving him down to Riley. He is still having lots of pain but handling it well.
He was so tired of not making it to the bathroom in time so he just slept on the floor. I did bring him a blanket to keep warm. I made myself some tea and we just sat in the bathroom for most of the night.
Brocs Fundraiser is still up and running. Crichfield Elementary has put it up on their website and we are very grateful for that. The money raised will help us pay for travel expenses and lodging while we are down in Indy. It will also help us with supplies and meals for us while Broc is in the hospital. We will have a stay in Jan and possibly one in Feb too as well as many Dr apps.
Here is the link for his fundraiser again.
www.booster.com/brocsbuddies2
Thank you for all your love, prayers and support.
Thursday, November 12, 2015
Just a little update
Things are still pretty much the same with Broc. He is still dealing with daily abdominal pain. Some days are worse than others. On the bad days we just stay home and cancel everything we had planned for that day.We have a list of things we can do for him to keep him as comfortable as possible. Taking him to the hospital really isn't an option for him as there is nothing more that they can do for him there that we can do at home.
He is still very much dependent on his TPN. We are trying to increase his formula as much as he can tolerate but when he has really bad days we have to go back to an extremely slow rate which puts us back to square one again. This last year or to has taught us to have an extreme amount of patience and to be even more flexible than we have ever been. We could have a whole day of fun planned and then Broc would get sick the night before or even that morning and then everything gets put on hold until he feels better again, even Lil Mark is starting to understand. Now when we make plans only Mark and I know about them and the boys will only get told a couple hours before hand so that they are not disappointed every time.
Brocs IV therapy has been put on hold to till next year. This will make his immune system as "Broc" as possible. His Hematologist is wanting to do more in depth testing to see if we can get to the bottom of his crazy immune issues. Since stopping the IV therapy Broc has started having his fevers again, his sensory issues have become crazy again and just having some really bad days. We are hoping that he can manage until the testing will start in February.
We found out some more bad news yesterday but nothing has been confirmed yet so I cannot tell any details yet. Once I have spoken to Brocs ped I will let you know.
We were able to attend the Assembly this past weekend. It was a great day. Unfortunately Broc got worse as the day went on so I spent most of the afternoon with him lying down. We got to meet a brother and sister from South Africa that were special speakers at out Assembly. What a treat. He tried to talk to me in Afrikaans but mine is almost gone as I haven't used it since I have been here in the US.
Daddy took the boys to see the Noah's Ark display in the morning. They were so enthralled with it. They could stand there for hours looking at all the animals and different things that were so intricately placed.
This pic was taken towards the end of lunch. By this time was was not very happy at all.
He is still very much dependent on his TPN. We are trying to increase his formula as much as he can tolerate but when he has really bad days we have to go back to an extremely slow rate which puts us back to square one again. This last year or to has taught us to have an extreme amount of patience and to be even more flexible than we have ever been. We could have a whole day of fun planned and then Broc would get sick the night before or even that morning and then everything gets put on hold until he feels better again, even Lil Mark is starting to understand. Now when we make plans only Mark and I know about them and the boys will only get told a couple hours before hand so that they are not disappointed every time.
Brocs IV therapy has been put on hold to till next year. This will make his immune system as "Broc" as possible. His Hematologist is wanting to do more in depth testing to see if we can get to the bottom of his crazy immune issues. Since stopping the IV therapy Broc has started having his fevers again, his sensory issues have become crazy again and just having some really bad days. We are hoping that he can manage until the testing will start in February.
We found out some more bad news yesterday but nothing has been confirmed yet so I cannot tell any details yet. Once I have spoken to Brocs ped I will let you know.
We were able to attend the Assembly this past weekend. It was a great day. Unfortunately Broc got worse as the day went on so I spent most of the afternoon with him lying down. We got to meet a brother and sister from South Africa that were special speakers at out Assembly. What a treat. He tried to talk to me in Afrikaans but mine is almost gone as I haven't used it since I have been here in the US.
Daddy took the boys to see the Noah's Ark display in the morning. They were so enthralled with it. They could stand there for hours looking at all the animals and different things that were so intricately placed.
This pic was taken towards the end of lunch. By this time was was not very happy at all.
We have started selling t-shirts for Broc again too. You have the option to have your t-shirt shipped to our house or to yours which ever is easier for you. If you are in South Africa you can have your t-shirt shipped to our house and my dad will bring it back with him. Here is the link to buy them.
www.booster.com/brocsbuddies2
Thank you for all your love, prayers and support.
Monday, October 19, 2015
Its been a while....
Wow I cannot believe its been so long since I wrote a post. Broc has really kept us so busy. There are days when I have plans for grocery shopping or other errands and I have to cancel because he is feeling so bad that all he can do is lie on the couch. We have gone from having GOOD days and BAD days to GOOD HOURS and BAD HOURS.
We have had a couple appointments and spent a night and day at Riley hospital. Broc had an issue with his new central line and and ileus so we had to have it all checked out. Unfortunately Broc was running a fever which he does most of the time due to all the viruses so we had to say over for some IV antibiotics to cover him in case his blood cultures came back positive.
We see Brocs GI and he wanted us to try solid food again. I was very against it as I knew what it could do to him but we obliged and tried some. BIG MISTAKE!!!!! The poor boy was in so much pain and then he ended up with a pseudo obstruction. The last 2 weeks have been really rough on him. He deals with pain daily and this just added to all of that. GI finally admitted defeat and said there was nothing more he could offer us so gave us a referral for the Motility Clinic at Riley. We have been offered this before but know what all the testing involves and we didn't want to put Broc through this. Unfortunately this is our only option to hopefully one day get him off TPN and figure out why his digestive system does not work like it is supposed to. We have an appointment in January to see the specialist. We are also on a cancellation list so hoping to get in sooner.
Broc was not gaining weight like they want him to so his calories were increased in his TPN. He was also having some fluid issues so they increased his fluids too. He is also draining a lot at night so we are having to replace that with IV fluids in the morning.
The fire station down the road from us was having a fun day. I was really hesitant to take the boys. Brocs numbers were not too bad that week and he was having lots of pain so we really wanted him to have some fun. The boys got to climb onto the fire trucks and look around.
Unfortunately a couple hours after our trip to the fire station was when Broc became really ill. We never know when these things will happen. We were very happy that he was able to enjoy an afternoon like a little boy.
These Drs apps and hospital stays also play a role in my health too and I need a couple days to recover but sometimes if there are a couple in a week then I need longer to recover. My hip has been causing some issues again so I went and got a cortisone shot which seemed to have helped me. No time for mommy to be down.
We did not get to see the genetic specialist as we thought. Apparently he needs an actual dx before he will see us. Those results will only be back around February we think. So until then we are trying to keep Broc as comfortable as possible when he is in pain. He has had some new things come up. He is calling them "weird" episodes. We have called cardiology and they are having us hold one of his heart meds for a month to see if that makes a difference. So far it has not helped at all. If they continue it will be up to his ped to try and figure them out.
We also had a couple levels tested and found that Broc is not absorbing his supplements so we are going to increase the dose to see if that helps. This particular supplement helps his cells produce energy for his body to function. Either his dose is not high enough for him or his body is needing so much that it cannot keep up.
Thank you to everyone that helps us out even if its at the last minute. We truly appreciate all you love,support and prayers.
We have had a couple appointments and spent a night and day at Riley hospital. Broc had an issue with his new central line and and ileus so we had to have it all checked out. Unfortunately Broc was running a fever which he does most of the time due to all the viruses so we had to say over for some IV antibiotics to cover him in case his blood cultures came back positive.
We see Brocs GI and he wanted us to try solid food again. I was very against it as I knew what it could do to him but we obliged and tried some. BIG MISTAKE!!!!! The poor boy was in so much pain and then he ended up with a pseudo obstruction. The last 2 weeks have been really rough on him. He deals with pain daily and this just added to all of that. GI finally admitted defeat and said there was nothing more he could offer us so gave us a referral for the Motility Clinic at Riley. We have been offered this before but know what all the testing involves and we didn't want to put Broc through this. Unfortunately this is our only option to hopefully one day get him off TPN and figure out why his digestive system does not work like it is supposed to. We have an appointment in January to see the specialist. We are also on a cancellation list so hoping to get in sooner.
Broc was not gaining weight like they want him to so his calories were increased in his TPN. He was also having some fluid issues so they increased his fluids too. He is also draining a lot at night so we are having to replace that with IV fluids in the morning.
The fire station down the road from us was having a fun day. I was really hesitant to take the boys. Brocs numbers were not too bad that week and he was having lots of pain so we really wanted him to have some fun. The boys got to climb onto the fire trucks and look around.
Unfortunately a couple hours after our trip to the fire station was when Broc became really ill. We never know when these things will happen. We were very happy that he was able to enjoy an afternoon like a little boy.
These Drs apps and hospital stays also play a role in my health too and I need a couple days to recover but sometimes if there are a couple in a week then I need longer to recover. My hip has been causing some issues again so I went and got a cortisone shot which seemed to have helped me. No time for mommy to be down.
We did not get to see the genetic specialist as we thought. Apparently he needs an actual dx before he will see us. Those results will only be back around February we think. So until then we are trying to keep Broc as comfortable as possible when he is in pain. He has had some new things come up. He is calling them "weird" episodes. We have called cardiology and they are having us hold one of his heart meds for a month to see if that makes a difference. So far it has not helped at all. If they continue it will be up to his ped to try and figure them out.
We also had a couple levels tested and found that Broc is not absorbing his supplements so we are going to increase the dose to see if that helps. This particular supplement helps his cells produce energy for his body to function. Either his dose is not high enough for him or his body is needing so much that it cannot keep up.
Thank you to everyone that helps us out even if its at the last minute. We truly appreciate all you love,support and prayers.
Tuesday, September 29, 2015
Brain MRI and a new central line
We left bright and early Friday morning. First thing was Brocs brain MRI. The anesthesia team was awesome and let me do most things with putting him to sleep and changing his TPN over to IV fluids. We had quite the party in the waiting room. Jon, Nadiene and Maddie came to visit us as well as Kelley and Carolyn. Thank you so much for all the support. It was great to catch up at usual.
Yolanda and I were able to eat some breakfast as we hadn't eaten all morning and leaving at 3am in the morning can make a person quite hungry. The coffee was great too. Brocs MRI scans took quite a while. Before his MRI we were told that he was getting a new central line too. We thought they were only going to try and fix his picc line, not give him a whole new one.
The hopes were to keep him sedated and then just put him in the elevator and take him upstairs for his central line, but the case before him took a little longer so Broc recovered down in MRI. Once he was awake enough we went off to see Dr Boaz to find out how his brain is doing. He gave us the great news that everything is looking really good with his brain as well as his surgery site. He did suggest a pain medication for Broc to help with his continual leg and feet pain but we have not made a decision on that yet. It could help him a lot and possibly his belly too but it could also have horrible side effects too.
Waiting to see Dr Boaz.
While we were seeing Dr Boaz surgery called us to say they are ready for Broc whenever we are done seeing Dr Boaz. Once we left Dr Boaz we headed down to surgery to check Broc in. We really didn't want to sedate him twice in one day but unfortunately it had to be done. Thankfully all the questions had already been answered when we checked in for MRI.
Always smiling.
These pics going down the hallway never get old. We always pray that broc comes back to us. Every sedation no matter how small can be dangerous to brocs heart.
In true Broc fashion he decided to spike a small fever while we were getting him all ready. Everyone went on high alert so a cbc and blood culture was done while he was under as well as a dose of IV ABX was given. We love it when the Drs are so pro-active with Broc. It shows that they truly care about him. The central line took about an hour and then we went down to see him. Our visitors had left once we left the MRI Dept.
Broc recovered well in the PACU and we left with giving him a dose of Tylenol for pain and fever and benedryl for his bites. Poor boy was attacked by a mosquito and it was driving him crazy.
Thank you to everyone that contributed to his fundraiser. We were able to use his new chair at the hospital. It really came in handy as he was very much out of it at times and wanted to sleep.
Thank you for all your love, prayers and support.
Yolanda and I were able to eat some breakfast as we hadn't eaten all morning and leaving at 3am in the morning can make a person quite hungry. The coffee was great too. Brocs MRI scans took quite a while. Before his MRI we were told that he was getting a new central line too. We thought they were only going to try and fix his picc line, not give him a whole new one.
The hopes were to keep him sedated and then just put him in the elevator and take him upstairs for his central line, but the case before him took a little longer so Broc recovered down in MRI. Once he was awake enough we went off to see Dr Boaz to find out how his brain is doing. He gave us the great news that everything is looking really good with his brain as well as his surgery site. He did suggest a pain medication for Broc to help with his continual leg and feet pain but we have not made a decision on that yet. It could help him a lot and possibly his belly too but it could also have horrible side effects too.
Waiting to see Dr Boaz.
While we were seeing Dr Boaz surgery called us to say they are ready for Broc whenever we are done seeing Dr Boaz. Once we left Dr Boaz we headed down to surgery to check Broc in. We really didn't want to sedate him twice in one day but unfortunately it had to be done. Thankfully all the questions had already been answered when we checked in for MRI.
Always smiling.
These pics going down the hallway never get old. We always pray that broc comes back to us. Every sedation no matter how small can be dangerous to brocs heart.
In true Broc fashion he decided to spike a small fever while we were getting him all ready. Everyone went on high alert so a cbc and blood culture was done while he was under as well as a dose of IV ABX was given. We love it when the Drs are so pro-active with Broc. It shows that they truly care about him. The central line took about an hour and then we went down to see him. Our visitors had left once we left the MRI Dept.
Broc recovered well in the PACU and we left with giving him a dose of Tylenol for pain and fever and benedryl for his bites. Poor boy was attacked by a mosquito and it was driving him crazy.
Thank you to everyone that contributed to his fundraiser. We were able to use his new chair at the hospital. It really came in handy as he was very much out of it at times and wanted to sleep.
Thank you for all your love, prayers and support.
Thursday, September 17, 2015
Brocs first bible reading
Last night Broc did his first bible reading in our congregation. Broc is very outspoken and proved that once again last night by his comment that horrified us as parents but everyone loved it and thought that is just how Broc is. It just goes to show this Buddy doesn't let anything stop him. Well done Buddy. We are very proud of you, especially Jehovah.
Wednesday, September 16, 2015
A little more clarification.
We spoke to Dr Nalepa over the weekend and he explained the bone marrow biopsy results much clearer to us. The fact that Broc does produce less blood cells than other children his age is the reason he is having lower counts. It is called hypocellular bone marrow. The next test that will be done will be done is a screening for test for all kids that have hypocellular bone marrow. Unfortunately with Brocs continual low counts we have to keep him away from crowded places and enclosed spaces with lots of people. Especially with the flu season approaching us fast. A simple flu or cold could mean a hospital stay for Broc.
Broc is still having a lot of GI issues. We are trying to increase his feeds but to no avail. We are getting better with his TPN schedule. We are also able to leave the house more as I'm more comfortable changing his TPN to IV fluids on the go.
We have good news. Broc has completed Science for Second Grade. He is so happy. He will now start Science for Third Grade too. We are hoping that he is able to do this with most of his subjects so he will catch up to the year he was in in school.
We realize that many people think that just because Broc is out of the house, running around or just being himself means that he is well and cured. The only time he will be cured or well is when Jehovah makes him well. Until then he struggles through every day. Some days are better than others. Some days he can walk and other days he needs his wheels. He is dependent on IV nutrition to keep him alive. He has pain daily which he has learned to deal with for the most part. Some days it gets too much for him.He gets tired really easily too. His Drs are really puzzled and I'm sure you all have the same questions we do as parents. Why can he not eat food? Why does it make him sick? His Drs have been in contact with another Childrens Hospital and they too have no idea. We have the option to put Broc through more invasive testing which may or may not give us an answer and we have decided not to do that at this time. In his short life of 8 years he has endured more than a typical adult goes through in a life time.
Here is a little collage that popped up on my screen from 7 years ago. How I wish they were this small again. It seemed as if life was so simple then.
Broc is still having a lot of GI issues. We are trying to increase his feeds but to no avail. We are getting better with his TPN schedule. We are also able to leave the house more as I'm more comfortable changing his TPN to IV fluids on the go.
We have good news. Broc has completed Science for Second Grade. He is so happy. He will now start Science for Third Grade too. We are hoping that he is able to do this with most of his subjects so he will catch up to the year he was in in school.
We realize that many people think that just because Broc is out of the house, running around or just being himself means that he is well and cured. The only time he will be cured or well is when Jehovah makes him well. Until then he struggles through every day. Some days are better than others. Some days he can walk and other days he needs his wheels. He is dependent on IV nutrition to keep him alive. He has pain daily which he has learned to deal with for the most part. Some days it gets too much for him.He gets tired really easily too. His Drs are really puzzled and I'm sure you all have the same questions we do as parents. Why can he not eat food? Why does it make him sick? His Drs have been in contact with another Childrens Hospital and they too have no idea. We have the option to put Broc through more invasive testing which may or may not give us an answer and we have decided not to do that at this time. In his short life of 8 years he has endured more than a typical adult goes through in a life time.
Here is a little collage that popped up on my screen from 7 years ago. How I wish they were this small again. It seemed as if life was so simple then.
Thank you for all your continued love , prayers and support.
Thursday, September 10, 2015
Been home for a week now.
We have been home for a week now. We just got our second delivery of TPN yesterday. We have had to make space in our fridge for his TPN and all the vit and heparin that I have to mix it with. Broc was doing a little better but he is back to only tolerating a little formula which is 5mls an hour. We run TPN for 18 hours and then IV fluids for 6 hours while he is off the TPN. He continues to have pain and nausea which nothing relieves. I try and help him with meds for the nausea which thankfully that does help most times. Draining his g port helps as much as it can. We use gas drops too which give some relief. Otherwise he just deals with it. He is so used to being in pain so it has to be a lot before it stops him from doing anything.
His electrolytes are doing really well on IV fluids and TPN. He has also gained a whole kilo in a week. For Broc that is amazing. He does have spurts of energy and tries to do things then tires himself out again. He is not able to ride his bike when he is on TPN as the pump and bag are too heavy for him to carry so he takes advantage of when he is on IV fluids and formula only.
Getting used to our new schedule is quite challenging but I'm getting it figured out. we have to take his TPN out the fridge at 10:30 so that it can get down to room temperature by 1:45 when we start mixing all the other things he needs in it. Then at 2pm we unhook his IV fluids and clean his lines and then switch him over to TPN. That runs for 18 hours till about 8am. When that is done we clean his lines and hook up IV fluids till the cycle starts all over again. While this is all going on he is still getting formula at 5-10mls an hour whichever he can tolerate. We also hook up a drain bag to drain his belly at night. He also gets medication 4 times a day through his j tube and g tube. It takes quite a lot of planning if we need to leave the house to have the correct supplies but so far all we forgot was extra batteries for his IV pump but thankfully his TPN and IV pump use the same batteries.
We got a call from his hematology team with the results from his bone marrow biopsy. All was fairly normal except that he is producing less red and white blood cells than normal. Because this can be found in many people's marrow they are not sure that it is significant enough for Broc to cause issues. They are running one other blood test the next time we are down there for an app to see if the lack of these cells can be causing an issue. We are still waiting for the WES DNA testing to come back and are hopeful that it will give us some clues too. We are not holding our breathe either as we know that it could just lead to more questions too. Dr H which we will see at the end of Oct may be able to help us too.
Broc continues to get viruses too which is causing fevers as well which in turn causes ileus's for him which causes lots of pain and discomfort. It's kind of a crazy roller coaster that broke its OFF switch. All we can do is strap our seatbelts tight and hang on for dear life!
Lil Mark is having a great year so far. He loves his teacher and trying so hard. He is having some extra math lessons twice a week which is really giving him the confidence he needs.
We will see Brocs GI team in October to talk about all that has been happening and see what our future plans are. Broc will be having his brain imaging at the end of this month. We are hoping that all is well and no further intervention will be needed.
Broc should be getting his medical special needs stroller soon too. It will make things so much easier for him and us when we are out. He will be able to lay down and sleep if he needs to. It will be much better support for him too.
Thank you for all your love, prayers and supports.
His electrolytes are doing really well on IV fluids and TPN. He has also gained a whole kilo in a week. For Broc that is amazing. He does have spurts of energy and tries to do things then tires himself out again. He is not able to ride his bike when he is on TPN as the pump and bag are too heavy for him to carry so he takes advantage of when he is on IV fluids and formula only.
Getting used to our new schedule is quite challenging but I'm getting it figured out. we have to take his TPN out the fridge at 10:30 so that it can get down to room temperature by 1:45 when we start mixing all the other things he needs in it. Then at 2pm we unhook his IV fluids and clean his lines and then switch him over to TPN. That runs for 18 hours till about 8am. When that is done we clean his lines and hook up IV fluids till the cycle starts all over again. While this is all going on he is still getting formula at 5-10mls an hour whichever he can tolerate. We also hook up a drain bag to drain his belly at night. He also gets medication 4 times a day through his j tube and g tube. It takes quite a lot of planning if we need to leave the house to have the correct supplies but so far all we forgot was extra batteries for his IV pump but thankfully his TPN and IV pump use the same batteries.
We got a call from his hematology team with the results from his bone marrow biopsy. All was fairly normal except that he is producing less red and white blood cells than normal. Because this can be found in many people's marrow they are not sure that it is significant enough for Broc to cause issues. They are running one other blood test the next time we are down there for an app to see if the lack of these cells can be causing an issue. We are still waiting for the WES DNA testing to come back and are hopeful that it will give us some clues too. We are not holding our breathe either as we know that it could just lead to more questions too. Dr H which we will see at the end of Oct may be able to help us too.
Broc continues to get viruses too which is causing fevers as well which in turn causes ileus's for him which causes lots of pain and discomfort. It's kind of a crazy roller coaster that broke its OFF switch. All we can do is strap our seatbelts tight and hang on for dear life!
Lil Mark is having a great year so far. He loves his teacher and trying so hard. He is having some extra math lessons twice a week which is really giving him the confidence he needs.
We will see Brocs GI team in October to talk about all that has been happening and see what our future plans are. Broc will be having his brain imaging at the end of this month. We are hoping that all is well and no further intervention will be needed.
Broc should be getting his medical special needs stroller soon too. It will make things so much easier for him and us when we are out. He will be able to lay down and sleep if he needs to. It will be much better support for him too.
Thank you for all your love, prayers and supports.
Tuesday, September 1, 2015
Day 4 at Riley and going home.
Broc is responding really well to the TPN and formula. We have him on a slow rate of formula as the TPN is giving him most of his calories. We had the whole GI team in here this morning. We have come up with a really good plan for Broc. We also have a plan for when his belly and intestines shut down again. Broc has gained weight while we have been here which is great. His color has also returned to his face too.
Broc has made friends with all the nurses and Drs here but Andrew has become his favorite med student buddy.
Thank you to all the friends that visited us while we were here and to everyone that helped out with Lil Mark. We will be leaving this afternoon as they feel that we can do everything at home for him. We will have his nurses come out and show me how to mix his TPN and hook it up.
Broc has made friends with all the nurses and Drs here but Andrew has become his favorite med student buddy.
Thank you to all the friends that visited us while we were here and to everyone that helped out with Lil Mark. We will be leaving this afternoon as they feel that we can do everything at home for him. We will have his nurses come out and show me how to mix his TPN and hook it up.
Monday, August 31, 2015
Day 3 at Riley
Broc is still having blood pressure issues so his echo was done last night. We got the news this morning that his heart is still doing great and they are not sure why his bp is dropping. His heart rate is dropping at night too.
We had a few more visitors yesterday and met a wonderful family from West Africa.
Brocs procedures went well this morning. He was mad cause wasn't allowed to drink anything so we had to distract him a lot. His new gj tube looks great. He is in some pain from his biopsy but hoping some phentanyl will help with that.
As of now we have not started any type of feed through his tube. Broc is doing so well on the TPN. He came in weighing 26 kilo's and today is 26.4 kilo's. We know that with him being on TPN his body isn't going to loose all this weight just trying to digest his food. Even the drs have said how much more perkier he looks.
So far all his blood cultures are still negative so we should be able to discontinue his ABX too.
We are still not sure when we will be leaving. Thank you to all the friends that have offered to help with Daddy and Mark.
We had a few more visitors yesterday and met a wonderful family from West Africa.
As of now we have not started any type of feed through his tube. Broc is doing so well on the TPN. He came in weighing 26 kilo's and today is 26.4 kilo's. We know that with him being on TPN his body isn't going to loose all this weight just trying to digest his food. Even the drs have said how much more perkier he looks.
So far all his blood cultures are still negative so we should be able to discontinue his ABX too.
We are still not sure when we will be leaving. Thank you to all the friends that have offered to help with Daddy and Mark.
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