We have been home for 12 days now. Broc is doing really well with only being allowed a clear liquid diet.
He does get a little hungry and then he has some chicken broth but he ends up getting full so quickly that a meal for him is just a couple of spoons. He is still struggling with his energy level. His now sinus infection is not helping with that either. He has had a cold virus since we came home from the hospital which I think he started while we were there cause he did have a sniffly nose and sore throat. His fever has continued all week and he started getting a headache with face pain. We had his labs checked and his WBC was a little on the high side for Broc so we thought something may be brewing. Friday was his ENT app as he also started with some ear pain and his ped had said that it looked like one of his ear tubes were not in the ear drum as they are supposed to be. We are also keeping an eye on his Hgb and Hct levels.
Once the ENT listened to Brocs happenings since we saw him in December he was amazed at all that had happened in Jan. He also saw that both of Brocs ear tubes were not in the correct place and are on there way out of his ears. With the cold virus possibly turning into a sinus infection the collective decision was made to put Broc on ABX to prevent any ear infections. Unfortunately Brocs ears do not drain properly so if there is any fluid build up it will cause him more ear infections. If this continues to happen again then he will have to have another set of ear tubes put in. This will then be his third set.
We also found out that the genetic labs that Dr Eliason wanted drawn for Broc were not drawn at the hospital so we will have them done this week when we go for his weekly labs. We are also in the process of getting an appointment to see a heamatologist. There are lots of weird things going on with Brocs body as well as some of the labs we had checked for his hypercoagulation. These results can be very helpful to us when he has his Open Heart Surgeries in the future.
We also had a meeting with Brocs school about him returning with all his new equipment. It was a great meeting and everyone involved is eager to learn and help Broc have a good quality of life. The school will discuss with the children before Broc comes to school and explain how he will look different. Broc and I will visit the school as well to see the children and teach everyone how to use his feeding pump and what to feed him. Once we have done all of this then Broc will go to school for the morning only for a few weeks. Once we think he is ready then he will go full day. He will still be under restrictions for gym class and recess until 6 months after his surgery. We are hoping that once we see Dr Eliason in June for a check up he will say that Broc will not have to wait the full 6 months as I know how devastated he is that he cannot once again ride his bike during the Summer Break.
We are still being very careful around crowded places and all the nasty viruses that are out there at the moment. That is why Dr Moustafa has recommended that we wait until March before Broc returns to school. Until Broc goes back to school I will continue to work through all the papers with him that his teacher sends home with Mark.
We will be seeing G.I. on Friday and then Broc will hopefully be very close to his goal rate for his feedings. So far he has tolerated the increases in his rate very well. He has not had much belly pain nor nausea. Before his NJ tube belly pain and nausea was something Broc lived with on a daily basis. Many times he would actually not eat a meal cause his belly hurt so much. His eos level was really low on Thursday which was wonderful. Both GI and Immuno are thinking that the food allergy was making his eos level higher for a longer time. None of this is text book by any means and all Brocs Drs know that all of this is trial and error. We are very thankful that his team of Drs have realized that Broc is writing his own book and many of his testing and treatments need to be "outside the box".
Thank you everyone for your continued support and love and prayers. We really appreciate all the help you have given us.
Saturday, January 31, 2015
Sunday, January 25, 2015
Unexpected ER Trip
Brocoli and I took a trip to the ER on Friday afternoon. We went to LaPorte Hospital for labs as usual and Dawn wasn't able to draw from either of his lumens(the 2 lines in his PICC). His lines had started to become difficult we just kept pushing harder. He did have the purple lumen TPA (medication to dissolve any fibers that start to grow in the lumen) in the PICU at Mott Childrens Hospital a week ago.
We need to have both his lumens working ASAP as he is having an IV therapy treatment on Wed and still needs to have lab draws to check his eos levels. They have not gone back to normal yet but at least as staying lower than 10%.
I got a hold of Brocs Immuno before hand to let him know we were coming to the ER.We checked in and they very kindly put us in a small waiting room away from all the other ill people. Seen as Broc really isn't ill and very immune compromised and also 2 weeks out of surgery.
We only waited a couple minutes and then they took us back to take his vitals. Something I was not expecting was that Broc had a fever. 100.1F may not seem high to many but for Broc its a fever that needs at least a little investigating.
Once they saw that he had a fever and a little cold we were put in isolation and poor buddy was tested for the flu and a whole battery of tests were run on him. Its protocol when you have a PICC line and a fever you have to be tested for a line infection.
Thankfully all the tests came back negative which I suspected anyway. Buddy did not like that fact that they had to stick him as his PICC line wasn't working but he was a champ and they were very proud of him.
The thing that kept us there the longest was waiting for the PICC Team to come infuse the TPA into Brocs lines. Once that is done we have to wait 45 min to see if it works. If they can draw blood from them then it worked. Thankfully it worked. We were out of there by 8:30pm.
We were very thankful to have a very knowledgeable Dr and willing to speak with Brocs Immuno over the phone. He was very interested in Brocs history and took everything I said seriously. Unfortunately with Broc he is so complicated that who ever takes care of him has to be very thorough.
Thank you to all our friends who supported us via the internet and texting Friday night. It felt like I had 100 of you all from all over the world right in the room with us.
We need to have both his lumens working ASAP as he is having an IV therapy treatment on Wed and still needs to have lab draws to check his eos levels. They have not gone back to normal yet but at least as staying lower than 10%.
I got a hold of Brocs Immuno before hand to let him know we were coming to the ER.We checked in and they very kindly put us in a small waiting room away from all the other ill people. Seen as Broc really isn't ill and very immune compromised and also 2 weeks out of surgery.
We only waited a couple minutes and then they took us back to take his vitals. Something I was not expecting was that Broc had a fever. 100.1F may not seem high to many but for Broc its a fever that needs at least a little investigating.
Once they saw that he had a fever and a little cold we were put in isolation and poor buddy was tested for the flu and a whole battery of tests were run on him. Its protocol when you have a PICC line and a fever you have to be tested for a line infection.
Thankfully all the tests came back negative which I suspected anyway. Buddy did not like that fact that they had to stick him as his PICC line wasn't working but he was a champ and they were very proud of him.
The thing that kept us there the longest was waiting for the PICC Team to come infuse the TPA into Brocs lines. Once that is done we have to wait 45 min to see if it works. If they can draw blood from them then it worked. Thankfully it worked. We were out of there by 8:30pm.
We were very thankful to have a very knowledgeable Dr and willing to speak with Brocs Immuno over the phone. He was very interested in Brocs history and took everything I said seriously. Unfortunately with Broc he is so complicated that who ever takes care of him has to be very thorough.
Thank you to all our friends who supported us via the internet and texting Friday night. It felt like I had 100 of you all from all over the world right in the room with us.
Waiting patiently for the Drs to come in.
TPA is infused and waiting for it to work.
Somebody was so happy not to spend the night in the hospital again and sleep in his own bed.
The little sticker on Brocs face is called a Feeding Friend. Anyway to make tube feeding a little more fun right!!!
www.KidsHopeChest.com
Tuesday, January 20, 2015
Day 13 and we are HOME
Yesterday was a long day for both of us. The team came in and said things are looking good we can go home. Then all bits and pieces had to be put in place. Thankfully there is a wonderful lady called Linda our discharge nurse who took care of everything from ordering all his new feeding supplies to setting up his nursing at home.
Around 1pm the feeding people came to deliver Brocs pump,back pack and a few supplies to get us started. Fortunately there wasn't much teaching involved cause the nurses had already let me start using the pump in the hospital.
Once teaching was done it was time to load the car. Discharge papers were so easy as once they realize this is not your just rodeo they skip all the non important things which makes things to so much faster.
We finally got on the road around 2 stopped for a short break then arrived home around 5:30. It was so nice to sleep in our own beds last night. We had to change Brocs bed around to accommodate after his feeding pump. He got up once to pee. The only way I knew was cause we left his hope beads on his pole and I heard them jingling so great idea I was able to help him. Around 3:30 his alarm went off poor guy was sleeping so soundly he was laying on his tube and it got kinked. That was geeat timing cause he was running low so I had to top up his bag anyway. I just made my first batch of formula and all went well.
Some results are in from the testing but I have to run them by our Dr before I can let you all know.
Thank you again for all the love and support. Thank you to all his great nurses. Allyssa, Rachel,Matt,Austin,Amy and many others. Thank you to Dr O for taking such an interest in our lives as parents, hope you get to visit South Africa soon. Thank you too to the Peds Gen team that took great care of Broc and to his wonderful surgeon Dr Eliason. We love you all.
Around 1pm the feeding people came to deliver Brocs pump,back pack and a few supplies to get us started. Fortunately there wasn't much teaching involved cause the nurses had already let me start using the pump in the hospital.
Once teaching was done it was time to load the car. Discharge papers were so easy as once they realize this is not your just rodeo they skip all the non important things which makes things to so much faster.
We finally got on the road around 2 stopped for a short break then arrived home around 5:30. It was so nice to sleep in our own beds last night. We had to change Brocs bed around to accommodate after his feeding pump. He got up once to pee. The only way I knew was cause we left his hope beads on his pole and I heard them jingling so great idea I was able to help him. Around 3:30 his alarm went off poor guy was sleeping so soundly he was laying on his tube and it got kinked. That was geeat timing cause he was running low so I had to top up his bag anyway. I just made my first batch of formula and all went well.
Some results are in from the testing but I have to run them by our Dr before I can let you all know.
Thank you again for all the love and support. Thank you to all his great nurses. Allyssa, Rachel,Matt,Austin,Amy and many others. Thank you to Dr O for taking such an interest in our lives as parents, hope you get to visit South Africa soon. Thank you too to the Peds Gen team that took great care of Broc and to his wonderful surgeon Dr Eliason. We love you all.
Story time with Daddy
More stories with Daddy
Marie giving Broc a bath. She took really good care of Broc while he was there.
Breathing treatments are a breeze. He slept through most of them.
This is the back pack he wears with is feeding pump and bag in it so that when we are out he is not hooked to a pole.
Sleeping in his own bed after 12 days.
Sunday, January 18, 2015
Day 12
We had a great day today. Sadly we had to say goodbye to Daddy. Broc and I were so happy he surprised us. It was just the boost that we both needed. He was also able to talk to the team and here there plan for Broc.
With all the gut issues Broc had yesterday he lost a pound. Today he had a similar episode where it's totally uncontrollable. Last nights episode was so bad it took Mark ,myself and the nurse to clean him all up.
I was on my own today for his episode so I had to call the nurse to help me. He had another one later this evening. We are trying to give him enough fluids as well as his tube feedings so he doesn't dehydrate. If things get any worse we will put pedialite in his formula.
There is not much more that the hospital can do for us. We can manage his fevers and gut issues at home. He is no longer neutropenic so he is safe regarding that issue. There will be lots of drs apps once we get home. Once we get home if you would like to visit please call before hand. Please do not come if you are ill or have been around people that are ill. Brocs immune system has really taken a knock with this virus on top of his already compromised immune system.
I am hoping to have my training on his pump tom and then we can arrange the discharge for the early afternoon. Everyone knows we have a long drive so they will try and get everything organized as soon as they can. They have said that if it ends up bring much later then we will leave Tuesday morning. We are so ready to come home and sleep in our own beds.
It seems that if Broc were to get extremely ill again we would most likely bring him here as they really care about how complex he is.
I will update on Instagram if we are leaving then will write a blog that evening. Thank you for all your love and support.
With all the gut issues Broc had yesterday he lost a pound. Today he had a similar episode where it's totally uncontrollable. Last nights episode was so bad it took Mark ,myself and the nurse to clean him all up.
I was on my own today for his episode so I had to call the nurse to help me. He had another one later this evening. We are trying to give him enough fluids as well as his tube feedings so he doesn't dehydrate. If things get any worse we will put pedialite in his formula.
There is not much more that the hospital can do for us. We can manage his fevers and gut issues at home. He is no longer neutropenic so he is safe regarding that issue. There will be lots of drs apps once we get home. Once we get home if you would like to visit please call before hand. Please do not come if you are ill or have been around people that are ill. Brocs immune system has really taken a knock with this virus on top of his already compromised immune system.
I am hoping to have my training on his pump tom and then we can arrange the discharge for the early afternoon. Everyone knows we have a long drive so they will try and get everything organized as soon as they can. They have said that if it ends up bring much later then we will leave Tuesday morning. We are so ready to come home and sleep in our own beds.
It seems that if Broc were to get extremely ill again we would most likely bring him here as they really care about how complex he is.
I will update on Instagram if we are leaving then will write a blog that evening. Thank you for all your love and support.
Saturday, January 17, 2015
Day 11
From now on I will be posting the day that we are still in the hospital. Broc did really well after his tube placement yesterday. He still had a sore throat so he was given Tylenol in the evening. He did spike a fever again last night. His belly started getting very distended last night around 9pm so they paged the attending and he came and looked at Broc. He said he has the start of an ileus so he kept his feeds at 30ml/hour.
He seemed to settle after we adjusted his feeds back again. We slept pretty well last night. This morning his bowel sounds were slightly diminished and then got better after a couple hours. After that Brocs belly went crazy. I literally stood at his bed and changed diaper after diaper. It was crazy. I couldnt change them fast enough.
The team rounded and were wonderful. They said that they had been researching all night about possible viruses that a person with CVID could get. Especially ones that can make them very ill. They spoke about Cytomegalovirus and EBV. Today they are testing him for that.
Broc has had a slight fever today. He is only up to 35ml/ hour. We are watching his belly to see how he handles the increase. His goal is 55ml/hour. He is still on IV fluids as well.
He sat in the chair with daddy today while he reds him stories. YES Daddy drove down to visit us. Broc and I were so surprised and happy. It is a really nice break for me. I have been with Broc 24/7 and taking care of him is a lot of work now with his feeding pump, measuring and weighing everything. We have had a wonderful team of nurses and aides taking care of Broc. It has been really helpful to have same ones then I don't have to go over his history and all his normal values and how he needs to be treated.
Broc is still having some nausea and requires some zofran on and off. We are hoping for a good night. More labs and test will be done in the morning too.Thank you in advance to all our friends who will be helping with putting Lil Mark on the bus and for getting him off the bus in the afternoon.
So for now we need his belly to settle,fevers to stay away, his strength to come back and tolerating all his feeds.
He seemed to settle after we adjusted his feeds back again. We slept pretty well last night. This morning his bowel sounds were slightly diminished and then got better after a couple hours. After that Brocs belly went crazy. I literally stood at his bed and changed diaper after diaper. It was crazy. I couldnt change them fast enough.
The team rounded and were wonderful. They said that they had been researching all night about possible viruses that a person with CVID could get. Especially ones that can make them very ill. They spoke about Cytomegalovirus and EBV. Today they are testing him for that.
Broc has had a slight fever today. He is only up to 35ml/ hour. We are watching his belly to see how he handles the increase. His goal is 55ml/hour. He is still on IV fluids as well.
He sat in the chair with daddy today while he reds him stories. YES Daddy drove down to visit us. Broc and I were so surprised and happy. It is a really nice break for me. I have been with Broc 24/7 and taking care of him is a lot of work now with his feeding pump, measuring and weighing everything. We have had a wonderful team of nurses and aides taking care of Broc. It has been really helpful to have same ones then I don't have to go over his history and all his normal values and how he needs to be treated.
Broc is still having some nausea and requires some zofran on and off. We are hoping for a good night. More labs and test will be done in the morning too.Thank you in advance to all our friends who will be helping with putting Lil Mark on the bus and for getting him off the bus in the afternoon.
So for now we need his belly to settle,fevers to stay away, his strength to come back and tolerating all his feeds.
Friday, January 16, 2015
Tube replacement and Over load on pics.
Broc just went back to have his tube replaced. Honestly I think he was ready to go to sleep. He had OT and PT this morning and the poor boy is so tired. They didn't do much but they have to keep him moving.
As I said before I cannot post pics on the blog from my phone so will be able to do it today. Due to Broc having C-Diff the bacterial infection we are in total isolation so once we go back to his room I may not leave his room till we leave to go home. We also have to keep is exposure to a minimum as his body is fighting a bacterial and viral infection at the same time.
The pics that you will see will be from the last couple days.
As I said before I cannot post pics on the blog from my phone so will be able to do it today. Due to Broc having C-Diff the bacterial infection we are in total isolation so once we go back to his room I may not leave his room till we leave to go home. We also have to keep is exposure to a minimum as his body is fighting a bacterial and viral infection at the same time.
The pics that you will see will be from the last couple days.
Robert and Vanessa came to visit us. Such a surprise. Ashley our buddy who bought us dinner.
This is the reaction Brocs skin has to tape.
This was Sunday before our Buddy got so ill. He was enjoying his last day with his Buddy.
He was feeling so well that he wanted to lay on my bed and enjoy the sunshine
Buddy waiting in pre-op on Monday for his angiogram and tube placement
After his procedure. Not a happy chappy
Everything is all good once we explained the need for his tube. Who can expect a 7 year old to realize that food may be his enemy and all he can have is formula that wont even touch his stomach.
Some therapy play to learn about all his new pieces.
Feeling good again
Taking a rest.
Broc had some special visitors.
His feeding pump with his formula
Getting his hair washed. Definitely not a fan.
Looking so handsome after his bath and hair wash.
Our Buddy is really ill
Having ABIs to make sure that there is nothing vascular wrong.
Eating small pieces of a popsicle.
Broc with his Teddy just like him. He has a PICC line as well as an NJ Tube.
Having his PICC line changed. He is such a brave boy
Waiting this morning in pre-op for his tube to be placed. Our Buddy has a little energy but anytime he does anything it totally wipes him out.
Once Broc gets back to his room he will be resting for the rest of the day. We are waiting to hear from the team when they will start his treatment for the C-diff and what other tests they are wanting to run.
During the day I will update via Instagram and then at night I will post on the blog.
Thank you to everyone for all your help,love ,prayers and words of encouragement. Broc and I have had lots of visitors unfortunately that will come to an end as we are in isolation. Everyone back in Indian please take good care of my boys. Please give them lots of encouragement and love too. I know you are already doing this. Thank you for the meals that are being provided too.Thank you for all the sisters that are helping to put Mark on the bus in the morning and to the ones that are looking after him in the afternoon until Mark gets home from work.
I am reading all your messages but sometimes I'm busy with Broc and cannot reply. Jehovah's Organization is truly amazing. We have felt the love and support from all over the world.
A busy afternoon
After his lab work came back it looks like Broc has a viral infection as well as a possible bacterial infection. No real answers from Infectious Disease Team. Just a watch and see approach. The pediatric care team are very concerned about his numbers. A lot of his care plan will depend on his CBC in the morning. Over all he had a much better day today. Broc cannot have any visitors as he is neutropenic and is very susceptible to catching anything else that someone might unintentionally be carrying.
We are prisoners in our room due to the possible bacterial infection that he has. I may not leave his room at all. Everyone that enters has to wear mask and gown and gloves.
Another issue is that his feeding tube is blocked for some reason. They have tried everything to get it unblocked. If they cannot get it working then Broc will be going down to Interventional Rdaiology to have a another placed. He will be sedated for this procedure. He is not able to keep anything down or inside of him so he is being kept on IV fluids only. He was allowed to have a Popsicle this evening and a few teaspoons of chicken broth but unfortunately that did not stay in him very long.
Sorry again for the late update. I'm thoroughly exhausted. This afternoon was a steady stream of Drs and nurses all trying to learn about Broc and how they can best help him. I will update again as soon as we get anymore results. If his CBC stays stable then we may be able to go home on oral antibiotics but if his CBC is not stable in the morning then the team will watch him very closely as his condition could become very dangerous.
Thank you for all your love and support. I have a ton of pics to share and as soon as I am near a computer or allowed out our room again then I will share them. I may be able to share on or 2 now.
We are prisoners in our room due to the possible bacterial infection that he has. I may not leave his room at all. Everyone that enters has to wear mask and gown and gloves.
Another issue is that his feeding tube is blocked for some reason. They have tried everything to get it unblocked. If they cannot get it working then Broc will be going down to Interventional Rdaiology to have a another placed. He will be sedated for this procedure. He is not able to keep anything down or inside of him so he is being kept on IV fluids only. He was allowed to have a Popsicle this evening and a few teaspoons of chicken broth but unfortunately that did not stay in him very long.
Sorry again for the late update. I'm thoroughly exhausted. This afternoon was a steady stream of Drs and nurses all trying to learn about Broc and how they can best help him. I will update again as soon as we get anymore results. If his CBC stays stable then we may be able to go home on oral antibiotics but if his CBC is not stable in the morning then the team will watch him very closely as his condition could become very dangerous.
Thank you for all your love and support. I have a ton of pics to share and as soon as I am near a computer or allowed out our room again then I will share them. I may be able to share on or 2 now.
Thursday, January 15, 2015
Post op Day 7
Brocs fever finally broke at 1:30am. He woke up completely soaked. We had to change everything. By 4:30 his fever was back to low grade again. At 2am an attending came to talk to me and I can only remember a few things she said to me cause I was so tired. I think I remembering falling asleep while she was talking to me. I was exhausted and wanted to nap yesterday but I was so scared to leave Brocs side. I did doze off in his bed with him a few times.
Broc is still only getting IV fluids. The team is very hesitant to start his feeds again cause they think that with the timing it possibly is the feeds causing the fevers. Honestly I do not agree nor does his immuno. Finally his cbc came back and I asked to see it. The differential is not back yet but the basic one is. And...........
DING DING DING!!!!
A light bulb went off when I saw his WBC it is 2.4
Now anyone that knows Broc knows that when his WBC is below 3 he has a virus and given how sick he has been and how lethargic he is its a severe one.
I immediately asked the nurse for the team to test for Mono,EBV,Parvovirus B19 etc. the whole family of viruses.
Still not seen or heard from the team so not sure if they will even do it. But strangely enough I feel so relieved to see his WBC so low cause I know what's wrong or at least have an idea. His respiratory panel came back negative so we are not dealing with any if those type of viruses.
Hopefully once we have figured out what he has we will know if we can restart his feeds. Once we have those going the we can plan on coming home. If he needs IV fluids or anything like that we can do that at home as well.
Our main goal is to figure out what is wrong,how to treat it if we can and then plan on getting out of here. From a vascular standpoint Broc is doing great. His new vein patch is doing wonderful and he has great pulses and blood flow. Gotta love the positives right!!
Just heard team is coming soon so as soon as I hear something I will update again.
Thank you and love too you all
Broc is still only getting IV fluids. The team is very hesitant to start his feeds again cause they think that with the timing it possibly is the feeds causing the fevers. Honestly I do not agree nor does his immuno. Finally his cbc came back and I asked to see it. The differential is not back yet but the basic one is. And...........
DING DING DING!!!!
A light bulb went off when I saw his WBC it is 2.4
Now anyone that knows Broc knows that when his WBC is below 3 he has a virus and given how sick he has been and how lethargic he is its a severe one.
I immediately asked the nurse for the team to test for Mono,EBV,Parvovirus B19 etc. the whole family of viruses.
Still not seen or heard from the team so not sure if they will even do it. But strangely enough I feel so relieved to see his WBC so low cause I know what's wrong or at least have an idea. His respiratory panel came back negative so we are not dealing with any if those type of viruses.
Hopefully once we have figured out what he has we will know if we can restart his feeds. Once we have those going the we can plan on coming home. If he needs IV fluids or anything like that we can do that at home as well.
Our main goal is to figure out what is wrong,how to treat it if we can and then plan on getting out of here. From a vascular standpoint Broc is doing great. His new vein patch is doing wonderful and he has great pulses and blood flow. Gotta love the positives right!!
Just heard team is coming soon so as soon as I hear something I will update again.
Thank you and love too you all
Post op Day 6
Yesterday was an incredibly stressful day. I had not slept since 2am Tuesday morning as Broc started spiking really his fevers. His heart rate was crazy high too and quite frankly he was scaring us all.
The Drs were paged several times and in the end they stopped coming cause they didn't know what to do for the fevers. Tylenol was not bringing them down so tried Motrin and that was not working either so we had to bath him in cold clothes. He slept most of the night but we didn't. I literally stood at his bedside and started at him and the monitor the whole night. By the time his surgeon came by to see him later in the morning he was so ill. Dr Eliason was shocked at how sick Broc was. He immediately got to work ordering all kinds of tests and then him and I started troubleshooting to see what it could be.
He ordered all the basic tests as well as urine and blood cultures and a chest X-ray. Broc slept the rest of the day. He never even woke up when they checked his sugar or when I had visitors.
We waited all day and night for the results to come back. Last night all we had was chest x ray and urine culture. Both of those were negative. I then suggested that we check him for the flu or rsv. So they did a wide respiratory panel on him.
By the time I went to bed Broc was as comfortable as we could make him.
Thank you for all the prayers ,concerning messages and love and support that was shown. I know you are all as worried about Broc as we are.
The Drs were paged several times and in the end they stopped coming cause they didn't know what to do for the fevers. Tylenol was not bringing them down so tried Motrin and that was not working either so we had to bath him in cold clothes. He slept most of the night but we didn't. I literally stood at his bedside and started at him and the monitor the whole night. By the time his surgeon came by to see him later in the morning he was so ill. Dr Eliason was shocked at how sick Broc was. He immediately got to work ordering all kinds of tests and then him and I started troubleshooting to see what it could be.
He ordered all the basic tests as well as urine and blood cultures and a chest X-ray. Broc slept the rest of the day. He never even woke up when they checked his sugar or when I had visitors.
We waited all day and night for the results to come back. Last night all we had was chest x ray and urine culture. Both of those were negative. I then suggested that we check him for the flu or rsv. So they did a wide respiratory panel on him.
By the time I went to bed Broc was as comfortable as we could make him.
Thank you for all the prayers ,concerning messages and love and support that was shown. I know you are all as worried about Broc as we are.
Tuesday, January 13, 2015
Post op Day 5.
Today was another rough today. His eos level had gone up to 11% today and his temp climed all day. Not extremely high but enough to make him feel lousy and sleep most of the day. Broc was very nauseous and was having dry heaves throughout the day on and off. The order for his feeds finally came through around noon. Once the formula was made and be out up to the room his feeds started at 1:40pm. We started his feeds very slowly and have slowly increased every 2 hours. Once he reached 40ml per hour he started to dry heave again and get very nauseous so we have him some zofran and switched off his feeds for an hour or so to rest his belly a bit.
Once he had the zofran in him for a while he got his meds again and we re started his feeds. He seemed to tolerate them well again. Soon after that he seemed to settle down and go to sleep for the night until about an hour later he woke up crying in pain. We called the nurse and she took a look at his leg. We rubbed it ,moved it did all we could to make him happy. Nothing worked. Due it being his right leg (the one they just repaired) we were very concerned. She paged the Vascular team and Brittany came out to look at him. She assessed his leg and looked over all his history again. She also looked at some of the labs that came back from Mayo Clinic. We found out today that his Factor 8 assay came back elevated so he is at risks now for deep vein thrombosis. Brittany told us to elevate his leg and just keep any eye on him. No sooner had she left the room when he started crying in pain again and grabbing his leg. Once again the nurse paged Brittany and she came over. She could see that he was in a lot of pain so she ordered oxy for him.
He is settled now with the oxy and resting well. We are hoping that he will get an ultra sound tom to look and see if he has any blood clots. We know that the revision is doing well and all his vessels are open from the angiogram. Broc is known to do weird things so there is a worry that something could be wrong.
Vascular will be back in at 2am to look at him again. They will be paged again if he is to wake up out of his sleep in pain. Praying I can get some rest tonight.
The feeding company will be coming to the hospital tom to teach me how to feed him with the feeding pump. I will also be learning how to give all his meds through his tube as well. I did do some of them by myself today.
Wow my brain will be fried by the end of tom again. We were hoping to go home tom but if the feeding and pain is not sorted then we will go home Thursaday.
Thank you for all the kind messages and prayers. We love you all and don't know what we would do without everyone's love and support. Thank you too to all the friends that are helping taking care of Lil Mark. We really appreciate all the help.
Once he had the zofran in him for a while he got his meds again and we re started his feeds. He seemed to tolerate them well again. Soon after that he seemed to settle down and go to sleep for the night until about an hour later he woke up crying in pain. We called the nurse and she took a look at his leg. We rubbed it ,moved it did all we could to make him happy. Nothing worked. Due it being his right leg (the one they just repaired) we were very concerned. She paged the Vascular team and Brittany came out to look at him. She assessed his leg and looked over all his history again. She also looked at some of the labs that came back from Mayo Clinic. We found out today that his Factor 8 assay came back elevated so he is at risks now for deep vein thrombosis. Brittany told us to elevate his leg and just keep any eye on him. No sooner had she left the room when he started crying in pain again and grabbing his leg. Once again the nurse paged Brittany and she came over. She could see that he was in a lot of pain so she ordered oxy for him.
He is settled now with the oxy and resting well. We are hoping that he will get an ultra sound tom to look and see if he has any blood clots. We know that the revision is doing well and all his vessels are open from the angiogram. Broc is known to do weird things so there is a worry that something could be wrong.
Vascular will be back in at 2am to look at him again. They will be paged again if he is to wake up out of his sleep in pain. Praying I can get some rest tonight.
The feeding company will be coming to the hospital tom to teach me how to feed him with the feeding pump. I will also be learning how to give all his meds through his tube as well. I did do some of them by myself today.
Wow my brain will be fried by the end of tom again. We were hoping to go home tom but if the feeding and pain is not sorted then we will go home Thursaday.
Thank you for all the kind messages and prayers. We love you all and don't know what we would do without everyone's love and support. Thank you too to all the friends that are helping taking care of Lil Mark. We really appreciate all the help.
Monday, January 12, 2015
Angiogram and NG tube
Today was a crazy rough day to say the least. While we were in pre op it was decided that Broc would get his NG tube placed today. They decided that it would be best to place it while he was under as opposed to being wide awake and having a ton of people holding him down. All they needed was an order and Dr Eliason was very kindly willing to write it for us.
I was very surprised with the way Broc reacted once he was done with the procedure. His angiogram went very well. They were very happy with the repair that was done. I have not spoken to the dr yet about it but that is the report that the attending on the Vascular team gave me.
Now the tube on the other hand was a little more complicated. Broc was very good once he came out of recovery. I was expecting him to be screaming his lungs out and kicking and screaming like he was in Cincinnati but he wasn't. He was quietly whimpering. My heart totally broke when I saw him. I explained again why he needed to have the tube and how it was going to make him feel so much better as it seemed as though food is his enemy now. Once we got back to his room he had to lie still for 6 hours to ensure that his puncture sight from his angiogram did not bleed. I layer with him all afternoon holding his hand and spending time with him. He dozed on and off the whole day. His temp spiked a little again and you could just see he was not feeling well at all.
While Broc was dozing on and off I watched a few videos about how to do tube feedings. He was able to see lots of pictures of kids of all ages wearing feeding tubes in everyday settings like grocery shipping and going to school.
Broc got all his meds via the tube tonight and I learnt a few more things. I will learn how to start his feeds and learn all the details about his feeding pump too. We are not sure for how long he will need the feeding tube.
We did get CBC results from this morning. They were as I expected his eos levels have gone from 1.6% to 9.9% today. I am really scared to see what his numbers will be tomorrow. I had a feeling they would be higher today as he spiked a small temp last night and the same thing happened this wvening as well.
Sorry for the very late update but Broc needed me the whole day.
I will post pictures as soon as I can get to a computer again. When I do post the pictures please share them with your family and children so they can see what Broc will look like before they see him. I know he will look different to you when you see him next time but please don't make him feel uncomfortable. Please treat him like the old Broc. The only thing that will be different is that he will eat a different way to you and I. He will most likely be fed continuously so he will be hooked to a feeding bag most of the time.
Life will be very different for our family but we will just make a new normal for us. Going out anywhere will require a lot of planning on our part. I'm sure it will be a lot easier as we get used to all Brocs new equipment that he will be needing. So please bare with us.
We thank you for all your love ,prayers and support.
I was very surprised with the way Broc reacted once he was done with the procedure. His angiogram went very well. They were very happy with the repair that was done. I have not spoken to the dr yet about it but that is the report that the attending on the Vascular team gave me.
Now the tube on the other hand was a little more complicated. Broc was very good once he came out of recovery. I was expecting him to be screaming his lungs out and kicking and screaming like he was in Cincinnati but he wasn't. He was quietly whimpering. My heart totally broke when I saw him. I explained again why he needed to have the tube and how it was going to make him feel so much better as it seemed as though food is his enemy now. Once we got back to his room he had to lie still for 6 hours to ensure that his puncture sight from his angiogram did not bleed. I layer with him all afternoon holding his hand and spending time with him. He dozed on and off the whole day. His temp spiked a little again and you could just see he was not feeling well at all.
While Broc was dozing on and off I watched a few videos about how to do tube feedings. He was able to see lots of pictures of kids of all ages wearing feeding tubes in everyday settings like grocery shipping and going to school.
Broc got all his meds via the tube tonight and I learnt a few more things. I will learn how to start his feeds and learn all the details about his feeding pump too. We are not sure for how long he will need the feeding tube.
We did get CBC results from this morning. They were as I expected his eos levels have gone from 1.6% to 9.9% today. I am really scared to see what his numbers will be tomorrow. I had a feeling they would be higher today as he spiked a small temp last night and the same thing happened this wvening as well.
Sorry for the very late update but Broc needed me the whole day.
I will post pictures as soon as I can get to a computer again. When I do post the pictures please share them with your family and children so they can see what Broc will look like before they see him. I know he will look different to you when you see him next time but please don't make him feel uncomfortable. Please treat him like the old Broc. The only thing that will be different is that he will eat a different way to you and I. He will most likely be fed continuously so he will be hooked to a feeding bag most of the time.
Life will be very different for our family but we will just make a new normal for us. Going out anywhere will require a lot of planning on our part. I'm sure it will be a lot easier as we get used to all Brocs new equipment that he will be needing. So please bare with us.
We thank you for all your love ,prayers and support.
Post op Day 4
Broc had a good day yesterday. We had some visitors in the afternoon and I got another mocha. Thank you and yum!!! The small things really make or break your day in the hospital. It was a little lonely once daddy and Markie left so Broc and I snuggled on his bed and we watched some HGTV and the Food Network. Two of Brocs favorite channels when he is in the hospital. We do t have cable so we cannot watch them at home.
Broc went back onto IV fluids last night as he was NPO from midnight due to him having anesthesia today for his angiogram. The vascular fam rounded and they are very happy with his progress so far. I guess the fact that they were able to harvest that small section of his saphenous vein was amazing givin the extent of the blockage. It is so imperative that we figure out what is going on with his vessels.
The plan for today is to do he angiogram and make sure the repair is looking good. His vessels are open and nothing new has popped up. Once he has the angiogram he will have to lay flat for 4-6 hours to make sure the sight stops bleeding properly.
Once he has recovered we will come back to his room to rest. PT will evaluate his walking tom and let us know if we need to do any exercises. Due to his incision in his groin he is walking on his toes with this right leg and they are concerned about a stricture or causing pain to his hips and back from walking crooked.
We also need to get his belly moving so he will be getting more meds for that too. I will update again after his angiogram today.
Our Buddy is still sleeping so we will leave him like that till they come to get him.
Thank you for all your love ,prayers and support.
Broc went back onto IV fluids last night as he was NPO from midnight due to him having anesthesia today for his angiogram. The vascular fam rounded and they are very happy with his progress so far. I guess the fact that they were able to harvest that small section of his saphenous vein was amazing givin the extent of the blockage. It is so imperative that we figure out what is going on with his vessels.
The plan for today is to do he angiogram and make sure the repair is looking good. His vessels are open and nothing new has popped up. Once he has the angiogram he will have to lay flat for 4-6 hours to make sure the sight stops bleeding properly.
Once he has recovered we will come back to his room to rest. PT will evaluate his walking tom and let us know if we need to do any exercises. Due to his incision in his groin he is walking on his toes with this right leg and they are concerned about a stricture or causing pain to his hips and back from walking crooked.
We also need to get his belly moving so he will be getting more meds for that too. I will update again after his angiogram today.
Our Buddy is still sleeping so we will leave him like that till they come to get him.
Thank you for all your love ,prayers and support.
Sunday, January 11, 2015
Post op Day 3
Today the plan is to eat and drink like normal. Broc has only eaten 2 sausage links for breakfast. He is really not in the mood for much today. He is not in pain unless he walks sound. At the moment we are battling allergies. His body has reacted to the tape used as well as the anti bacterial solution the used for surgery and his picc line dressing change. We have given him benedryl and are hoping for it to kick in soon. Poor guy is so itchy.
The genetic labs that were drawn yesterday will be sent to Mayo Clinic so they will take a couple weeks to get those results. They are starting to wean his prednisone today.
He seems pretty wiped out today. Think he was far too active yesterday or his bodies immune response is starting to kick in. Tonight he will go back on IV fluids and be NPO for his angiogram tom.
Thank you to a wonderful family who drove down to come and visit us yesterday. What a surprise. We enjoyed a lovely dinner provided by Ashley. Thank you so much for making sure we are well fed and for my mocha. Sometimes it's the little things that can give you that extra boost you need.
If anything else changes or we get more results I will post again.
He seems pretty wiped out today. Think he was far too active yesterday or his bodies immune response is starting to kick in. Tonight he will go back on IV fluids and be NPO for his angiogram tom.
Thank you to a wonderful family who drove down to come and visit us yesterday. What a surprise. We enjoyed a lovely dinner provided by Ashley. Thank you so much for making sure we are well fed and for my mocha. Sometimes it's the little things that can give you that extra boost you need.
If anything else changes or we get more results I will post again.
Saturday, January 10, 2015
We moved to the regular floor.
We finally got moved to the regular floor today. They also came and drew all the genetic labs. Dr Eliason ordered them STAT so we should be able to have the results before we leave. We are really hoping that we are not looking at yet another diagnosis, but if we are then at least we will know what it is and we will have the tools to deal with it.
If Broc does have an underlying condition regarding clotting factors and we don't figure it out then it could be very dangerous going into his next OHS in a couple years or any other surgery that he may have in the future.
Here are some pics from last night and today. I am only able to post pics when I am using a computer. I took Mark down to the indoor playground for a bit and they have computers there for the parents to use.
If Broc does have an underlying condition regarding clotting factors and we don't figure it out then it could be very dangerous going into his next OHS in a couple years or any other surgery that he may have in the future.
Here are some pics from last night and today. I am only able to post pics when I am using a computer. I took Mark down to the indoor playground for a bit and they have computers there for the parents to use.
This was the view we had from our room in the PICU. We actually had the exact same PICU room as we had in 2012.
His name sign that Child Life makes for every child.
Resting in PICU
The gorgeous sunrise this morning.
Doing his breathing treatment so that his lungs can stay open
The boys playing different games but in the same bed.
Hanging out together.
Daddy taking Broc for his first walk this morning.
He is doing so well.
Visiting the playroom on the 12th floor.
Post op Day 2
Last night Broc had more issues with pain. A whole big miscommunication with everyone. We weren't aware that his PCA pump was locked out after 4 hours. It caused lots of tension between everyone in the room . We kept trying to console Broc but nothing was working. Finally after we had the vascular team paged we all figured out what the problem was. It took a long time to get his pain unde control and they added Valium too.
Once daddy was sure everything was settled and Broc was happy him and Mark left for the night. The Vascular and PICU team are very happy with Brocs progress. We as still in PICU as there are no beds on the regular floor.
Today we will start all his oral meds and maybe go for a walk. His angiogram is scheduled for Monday and he will be having anesthesia for that as well. He is having some very low blood pressures still so they are holding off on his heart med.
Goals for today is to not use PCA for pain.
Go for a walk.
Eat as much of his meals as possible.
Thank you for all your continued support and love.
Once daddy was sure everything was settled and Broc was happy him and Mark left for the night. The Vascular and PICU team are very happy with Brocs progress. We as still in PICU as there are no beds on the regular floor.
Today we will start all his oral meds and maybe go for a walk. His angiogram is scheduled for Monday and he will be having anesthesia for that as well. He is having some very low blood pressures still so they are holding off on his heart med.
Goals for today is to not use PCA for pain.
Go for a walk.
Eat as much of his meals as possible.
Thank you for all your continued support and love.
Friday, January 9, 2015
Post op Day 1
Sorry this is so late in the day. I know many of you have been wondering what's going on. Broc slept fairly well last night and so did I. The vascular and PICU team came to see him this morning. They were very happy with how he is doing. He has had low grade fevers and some pain.
They took out his epidural,his arterial line and his Foley catheter. He is getting a bath today so hopeful he will feel better after that.
We are trying to transition him to oral pain meds but he still has his PCA pump which he can push for pain.
We are hoping to leave PICU today too and go to the regular floor later on. He will have his genetic labs drawn to check for any clotting disorders later today or tom.
Thank you for all the friends that have come to visit us. We also appreciate all the food the meals that have been provided.
If you have any questions please feel free to call or text.
They took out his epidural,his arterial line and his Foley catheter. He is getting a bath today so hopeful he will feel better after that.
We are trying to transition him to oral pain meds but he still has his PCA pump which he can push for pain.
We are hoping to leave PICU today too and go to the regular floor later on. He will have his genetic labs drawn to check for any clotting disorders later today or tom.
Thank you for all the friends that have come to visit us. We also appreciate all the food the meals that have been provided.
If you have any questions please feel free to call or text.
Thursday, January 8, 2015
Final Update
Surgery is done. It was a little quicker than we expected which is a good thing. We have spoken to Dr Eliason so we have a small update on how surgery went before we go back to see Broc in recovery and then PICU.
The top picture on the left is what they did in his previous surgery in 2012. The top right is the new patch that they put in today over the blockage. The bottom picture is where they split the blocked area and what it looked like once they opened him up. There was not really scar tissue as you would expect scar tissue to look like it was more that the artery just closed for some reason and never grew with his artery as his body grew and that is where the blockage came from.
The sad news is that his left saphinous vein is almost completely blocked.They are not sure why as it was not like that in 2011. There was only a small segment of 4cm that they could use from his saphinous vein and that was from the calf so he has an incision on his calf on the left leg as well now as the new incision in his right leg.
The issue now with the left vein being blocked for no reason causes for concern so they will start genetic testing to see if Broc has some underlying clotting disorder. They are willing to do that testing while we are here because if he needs another revision of this surgery later on down the road they will know if they are dealing with another clotting issue. The other problem now with having no viable saphinous vein left is that if he needs another revision down the road they will have to look for veins in his arms. Those can only be used when he is a teenager or much much bigger.
He did notice that his blood pressure is very different from the last time he had surgery in 2012. He said that there is a big difference between the 2 numbers. The good news is that his pulse in his right leg is now stronger than the pulse in his left leg.
That is all the information we have for now. We will know more as the days go on and also after they do his angiogram in a couple days to see his blood flow.
We are hoping that he will be extubated by the time we see him in PICU. They will be monitoring his blood pressure very closely as well as his eosinaphil levels.
Thank you for all your support and love today. If anything new comes up I will be sure to write an update.
Update 1 & 2.
We are so sorry the updates have been not been very informative so I never said anything, but as a person not sitting with us I can totally understand how you are looking for any info.
So the first update was at 10:40 to say that they had made the first incision. It took them over an hour to place his epidural, arterial line, couple IV's and his foley.
The second update was to say that Broc is doing well and everything is going as planned.
I guess they are not coming every hour as we thought they would.
We are reading all your texts and messages and replying as best we can. We thank you for all the support we are getting from literally all over the world.
I was so blown away by the number of people that have the read the post I wrote about my mom. The comments that you have all left are truly heartfelt and loving.
As soon as we get another post I will be sure to let you all know.
Lil Mark is keeping himself busy with homework and watching movies. He is having a playdate this afternoon so I'm sure that will be fun.
As we get closer to the late afternoon, I will post when he is done and when we go back to see him. We will not have any info at that time and would like time to be with Broc in PICU. Later on this evening I will be able to update you all on what they did during surgery and how he is doing.
So the first update was at 10:40 to say that they had made the first incision. It took them over an hour to place his epidural, arterial line, couple IV's and his foley.
The second update was to say that Broc is doing well and everything is going as planned.
I guess they are not coming every hour as we thought they would.
We are reading all your texts and messages and replying as best we can. We thank you for all the support we are getting from literally all over the world.
I was so blown away by the number of people that have the read the post I wrote about my mom. The comments that you have all left are truly heartfelt and loving.
As soon as we get another post I will be sure to let you all know.
Lil Mark is keeping himself busy with homework and watching movies. He is having a playdate this afternoon so I'm sure that will be fun.
As we get closer to the late afternoon, I will post when he is done and when we go back to see him. We will not have any info at that time and would like time to be with Broc in PICU. Later on this evening I will be able to update you all on what they did during surgery and how he is doing.
Vascular Surgery - Day of surgery
This morning we woke up pretty early to get Broc ready. Dr Eliason came by to answer any last minute questions we had. We spent some family time together watching a movie before they came to take Broc back.
Dr Eliason also explained a bit about what they are going to do. He said that if the scar tissue is really hard ad rubbery then they would have to cut it all away and that would take a long time but if it was squishy and they could work around it or with it then things would go alot smoother.
Surgery is expected to be about 6 hours but could be longer. A lot is still up in the air as they will make many decisions once they are actually inside his leg and will be able to see the extent of the damage the scar tissue has done.
He went back at 9am. It is now 10:12am and we have not had an update as of yet. As soon as we get our first update I will let you all know what is happening.
Thank you everyone for all your love,prayers,comfort and support.
Dr Eliason also explained a bit about what they are going to do. He said that if the scar tissue is really hard ad rubbery then they would have to cut it all away and that would take a long time but if it was squishy and they could work around it or with it then things would go alot smoother.
Surgery is expected to be about 6 hours but could be longer. A lot is still up in the air as they will make many decisions once they are actually inside his leg and will be able to see the extent of the damage the scar tissue has done.
He went back at 9am. It is now 10:12am and we have not had an update as of yet. As soon as we get our first update I will let you all know what is happening.
Thank you everyone for all your love,prayers,comfort and support.
Night before surgery
Yesterday we made the 3 hour drive to Mott. It took a lot longer due to the weather. Some times there were white out conditions and all we could do was pray we made it through. Thankfully it was not like that the whole way. After we went past Kalamazoo the weather and roads were much better.
We arrived at the hospital to get labs and an EKG to make sure he was all good to go before surgery.
We arrived at the hospital to get labs and an EKG to make sure he was all good to go before surgery.
We had some time to kill before being admitted to Brocs room so daddy read some stories in the family room,then we went and found the indoor playground on the 8th floor.
What an amazing place. They had basketball hoops where all the boys could shoot balls as well as a playground and a light up game. That is what the boys are playing in the picture.
We were called around 3pm to get settled into his room. We had some visitors yesterday too which was lovely. Later on in the evening the Child Life came by and the boys did some painting. The girls learnt all about sharks and dinosaurs. We saved all the paintings and we will put them up in Brocs room once he is all settled.
After dinner Daddy and Mark left to go to the house to get a good nights rest.
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