Good news and IVIG

On Monday we took a trip to Michigan to see Brocs vascular team. Thankfully the weather was fairly decent. It only started snowing when we were about 1/2 hour from Michigan. 

We had our mandatory pic in front of big Bird and Brocs frog as he calls it.

We then went onto to find out all the results of his testing for the morning. We got the amazing news that Brocs legs are only 1mm different. He has grown 4" in 6 months. It's wonderful to think that Broc will not need another vascular surgery unless his arteries do not grow with him. As far as we know they are doing just fine. We have moved from 6 month follow ups to 1 year follow ups.

Char has been amazing and helped us so many times over the years. 

Dr Elisaon has saved Brocs leg twice. An amazing Dr with a heart of gold.  He has stayed longer at tbe hospital after he was supposed to be home just to come and talk to us. He came in late at night when Broc became really ill in 2015. A truly loving team that really cares about their patients.

Our drive home wasn't too bad , a little snowy but not bad.  We will be heading back in October for our follow up.

The boys and I went to La Porte hospital on Tuesday for Brocs IVIG infusion. Broc became very ill during the first 30 min - 1hour. He became very nauseas and his blood pressure dropped very low. They increased his iv fluids to see if that would help and his Dr ordered a cbc just to make sure everything was ok. All his labs pointed to a viral illness and severe dehydration. It took his BP a while to come back up. Anyone that came into his room noticed how bad he was feeling.

His team have decided to give him half his IV fluids before his infusion starts and then to increase his rate every hour instead of every 30 min. If he tolerates that well then we can leave it at that otherwise we will increase his rate even slower. The tricky thing with IVIG is you never know when the kids will react to it or not.

Broc will be seeing GI on Monday and then our next big trip is Cincinnati Children's the first week of January.

Thank you for all your love,prayers and support.

Anticipation

To think 7 years ago our Buddy had his Aortic Valve repair. He was such a little munchkin. Pinchable cheeks and cute lips. Every year we hold our breathe to see if  he needs a new valve or not. The anxiety leading up to those weeks are really stressful. At the moment we know his heart is holding on. His Aortic Valve has regurgitation but its not bad enough to need a replacement at the moment. He does run out of breathe when playing and has a hard time keeping up when playing with friends. His next cardiac check up will be in April of next year.

Next week we are heading to Mott (Children's Hospital in Michigan) with daddy to visit his Vascular Team. These appointments are really stressful. The weeks leading up to them we as parents are wondering what the outcome will be. We know he has been in lots of pain lately especially after exercise and walking. Its an anxious drive up there. First we head to x-ray to measure the length of both his legs and also an x-ray of his hand to make sure his growth is appropriate for his age.

Next we head to the Cardiovascular Unit to measure the blood pressures in his arms and the brachial pressures in his legs and toes. We then move to another room and have an ultra sound done to see the blood flow of his right leg and also the graft that he had placed.

Lastly we head to the Drs appointment. The whole day we have been holding our breathe for this moment when he walks in the room and gives you the news. Except he doesn't give it to you right away he wants to know how Broc has been the last 6 months since we saw each other last, how his pain has been etc. As usual Broc has always been up to something so we have a lot to discuss. Broc had a busy Summer medical wise so we will have a lot to discuss. At this stage we are trying to hurry Dr E through the catch-up process so we can get to the numbers. Its always the numbers with me. As Dr Hoyer says I'm a numbers lady. I love my numbers. To me they let me know what is going on and how much longer till something needs to be done.

Finally we get to the much needed numbers part. First Dr E will let us know how much his legs have grown and that ever critical number of how far apart his legs are. That number has a huge impact on Brocs life. If surgery needs to be done there is a very small window of inches in which they can do surgery. If his legs grow too far apart then surgery is not an option for us anymore and we have missed our window of opportunity.

Then how to handle the news. Its never good news in my books. Some may think that I'm being negative and not grateful. Don't get me wrong anytime you child doesn't need surgery is great news but from a parents perspective it's a little different well for me anyways. We know Brocs had increased pain with any activity. We would love to make that pain go away. If they come back and tell us his numbers have stayed the same and there is no need to have surgery then you are sad as you cannot take his pain away but supposed to be happy because he doesn't need surgery. On the other hand if his numbers have changed and one leg is much shorter than the other then you are happy because yay we can do something about his pain and help him but NO that's terrible news because now I have to explain to my child once again that he will need to have surgery and will have yet another scar and be in immense pain for a while, have restrictions, which we all know Broc hates being restricted and possibly have complex issues afterwards too. 

I know its human nature for people to tell us to think positively and while we know people mean well, we have been on this journey too long to know that things are never easy for our Buddy. We do think positively but are also realistic. We know how complex he is and appreciate all the prayers.If we don't take your comment like you would expect us to, of "think positively" "everything will be fine", please don't be offended.

Next week Broc will be having an IVIG infusion at the hospital too. If anyone would like to come and say hi please message me and I can give you the room number.

Thank you again for all the love, prayers and support for our family. 

Update on Broc, homeschool trip and my recovery

Broc is still dealing with sensory overload which is making life very interesting and requiring a lot of patience from everyone. He has had some increase in heart rate and decrease in oxygen when doing any littke activity.  We contacted all his team's and it was decided to increase his IV fluids during the day. So far his heart rate is still increased with any activity but hoping it maybe a virus too.

On another note Broc has started choking again. We are very sad about that because it means his laryngeal cleft is weakening agsin. We have contacted Cincy and they will discuss Brocs case in the Aero meeting on Wed and let us know what there thoughts are. Surgery is not a good option for Broc but they can inject a filler to help close the cleft. It is likely Broc will go to the OR sometime to be scoped to see what is going on.

His iron infusions every 8 weeks really seem to be helping with keeping his red blood counts in a stable range. IVIG every 4 weeks is still helping with keeping his continuous high fevers at bay. He is only having them now when he is ill and not when he is having an auto immune response.

Homeschool is going well for us. We attended our first homeschool trip for he school year on Friday.  It has been very difficult for me to get out with the boys but we made it. Unfortunately I did fall going up some stairs. My coordination skills are not very good. We get to see some amazing animals and amphibians.

My recovery, well it's going slow. I'm still not able to bear weight on my foot. My foot/ankle continues to swell even though I am wearing a compression stocking and still taking strong anti inflammatory medication. I am seeing my Dr on Wednesday so really hoping for some answers. 

Thank you again for all the help we have received during my ever long recovery. Thank you too for the friends that came to visit us at the hospital. It makes the long days much shorter. 

Thank you for everyone's continued love,prayers and support. 

My recovery

I cannot believe it's been over a month since I have posted on here. Life has just been crazy.  I'm trying to do as much as I can without hurting myself as well as resting as much as I can. I had this same surgery 17 years ago and boy have things changed.  It's true when they say as you get older you take longer to recover.  Granted I didn't have children to take care of then let a lone one with special needs.
This was cast number 2.

This was cast number 3.

I now have a walking boot on but still am not allowed to bear any weight on it. Talk about frustrating but I'm being as patient as I can. My boys have been amazing and really stepping up to help me especially Lil Mark. He is helping me as well as helping me take care of Broc.

My hubby has been amazing. Working extremely long hours and sometimes weekends too he still comes home to cook dinner, help with laundry, help with Brocs nighttime care and take care of me too.

Thank you to all the wonderful friends who have helped with taking us to Drs and therapy appointments,  helped with house cleaning , cooking meals,  taking care of me or the boys. All the many texts , phone calls , visits and cards are truly appreciated.

It's not so much my surgery that is extending my recovery but the other diseases that I deal with on a daily basis. I know that soon I will be back on 2 feet again and I cannot wait, but until then I will be patient.

Thank you again for all the love,support and prayers from around the world.

Immunology app and catch up

Broc is still having his eye tics and head movements. We don't have any reasons as to why he has them.
His ankle is sprained. We saw his new Ortho on Wednesday and he now has to wear an ankle brace for 3 weeks to help it heal properly.
We have managed to stay out of the hospital which is wonderful.

We saw his immunologist on Tuesday. It was a great appointment.  Dr N spent a full hour talking to us and answering all our questions. They drew a slew of labs too. Hoping to get the results soon.
He still doesn't have any answers as to why his counts are always low. When whole genome testing is available he would like Broc to get that to see if we can get any more clues.

We are still waiting on a plan from his team.  We have a verbal one but nothing in writing yet.

We had a great time at the Aquarium on Saturday with a lovely family. As you can see Lil Mark is not into taking pics.


I had my surgery yesterday. Everything went well but recovery will be a long one. Thank you to all our friends for helping.

This is the new member of our family. His name is Jack. He is a leopard gecko.

Home

Since we have been home from our last hospital stay Broc has been dealing with a couple things. A pain on the right side of his abdomen that we have yet to figure out. Gallbladder has been ruled out thankfully. Right ankle injury that he will be seeing an ortho for in a couple weeks and some new tics/ movements which we are still trying to figure out what caused them. We are thinking it could be due to all the stress his body has been through the last month and hopefully it will go away or it could be something more. I'm guessing he thinks I need another challenge to figure out.

We have also started school for this year. We are using books, lots of experiments and lots of hands on learning and documentaries about animals. The boys will also be doing lots of animal projects and learning about the world around us.Computer classes were not working out for us especially when you need to be on wifi for schooling. At least books can be taken anywhere with you.

We wanted to get a jump start on school as I'm not sure how much schooling I will be doing once I have my surgery. That is scheduled for Sep 14th. My recovery will be about a month but hoping that I will be able to drive after a couple weeks. Thank you to all the friends who have offered to help with watching Lil Mark, bringing us meals,giving us rides and of course all the support and prayers.  

The boys also received a wonderful gift from our dear friends in Las Vegas. They were so tickled once they opened their paintings. It truly is wonderful to see all the extended family the boys have all over the world. They have already found a space in their rooms for them.

Thank you for all the love and support for our family.

Day 6 & 7 at Riley

Broc was starting to feel better with lower fevers. With feeling better came lots of lego building, crafts and playing basketball with one of his favorite nurses.

Of course everyone has to have a bath and get your hair washed to get clean. 

Thank you to everyone that helped with looking after Lil Mark and provided meals for my boys. We are really hoping that Broc will stay healthy now so we can stay home and I can start preparing for my surgery. His team is also working on a plan so that the local hospital can take care of Broc if things are not too serious, so we can be closer to home.

Day 1-5 at Riley

On Monday Broc and I came down to Riley for a new central line. Everything went we!l and we were home Monday evening. He had a sore throat but we thought it was from the anesthesia. Tuesday we had routine labs done as we normally do. To our surprise his WBC was extremely high. I called his ped and he had us bring him to the ER. At the ER he had a fever. Blood cultures were drawn and a call was made to his team. We

Thank you to the friends that came to visit us in the ER. We waited for the ambulance. Broc was still pretty stable once we got here but the following day took a turn. He started spiking fevers and really not feeling well.

His team have been watching him closely here. He has developed lots of congestion and feels yucky overall. All his blood cultures are still negative but we have new ones growing since he spiked fevers after being here for 24hours.

The plan for now is to watch his counts. Too high and we know there's a problem. Too low and there's a problem. Broc has a very small window where his counts are good and won't effect him negatively. It has taken years to teach his team but they know the still now which helps immensely.

We had a visit from Quiggley yesterday. Broc loves the therapy dogs.

Thank you to everyone for all the prayers,love and support.

Day 7 & 8 at Riley

Broc is doing so much better. Yesterday was all about making sand bottles and building legos. I was a little hesitant to post yesterday because his labs were a little high and everyone was concerned but today they are trending down which is great.

Our Buddy is truly a miracle. He has come so close, twice in a matter of weeks but he defies all the odds and teaches all these med students what it's like to take care of a medically complex kiddo and how unpredictable they can be. Everyone is learning how fast our Buddy can go from being well to extremely ill in a matter of hours.

On Saturday Mark and Lil Mark drove down so we could attend a friends wedding. Our team assured us that Broc will be fine and that we need to go have some fun. We did have a couple come to the hospital to sit with Broc until he fell asleep.

We are hoping to stay home for a while now so that I can focus on the house before my surgery. Thank you for all the cards, love and prayers for our family.

Day 5 at Riley

Broc is still doing the same today. Still battling some pain. He went for an ultra sound on his gallbladder this morning to rule that out.
If you would like to send him an e-card here is the link.

https://www.rileychildrens.org/form/patient-postcard/

We have stuck some on his doors in his room. He loves reading them and seeing all the cool pics on them. We are still being patient and waiting for him to recover.

He also had a school lesson today and learnt about the life cycle of butterflies.

Thank you again for all the prayers.

Day 4 at Riley

Today was a rough pain day. We tried ice chips yesterday and he was only able to have 2 before he had severe pain. Today he was begging for sherbet. He tried 3 small spoons and the pain hit again. He has really regretted trying anything. He was very quiet today. No lego building like he did yesterday. He actually slept for 2.5 hours. Anyone that knows Broc, he never takes a nap during the day. He still has a lot of healing snd recovering to do.

His counts are still dropping slowly. We are hoping that they stabilize eventually. His team is so scared to send him home and he's not ready then falls ill again a week later. We have an awesome team with us. They are looking at all avenues and making the best decisions for Broc. Our biggest concern is that when he does get this ill it happens extremely fast and our local hospital doesn't have transport for us. Last Saturday we waited for 7 hours for an ambulance. We have a lot of decisions to make with the help of his team.

Thank you for the help with Lil Mark and meals for my boys. I know it's really difficult for Daddy to work a full day and then come home and take care of Mark, make meals and laundry etc. We really appreciate the extra meals and help.

Thank you for all the prayers and loves.

Day 2 at Riley

Broc had a good night with stable fevers. They are still there but not spiking. I was able to rest as well too. We had the GI team and ID team this morning. With giving him zofran every 4 hours his vomiting and dry heaving have slowed down. He did test positive for c diff so treatment for that was started this afternoon. We are not able to give him his regular pain meds when his pain is extreme so we are doing hot packs to help ease his pain.

The ID came in and confirmed that he did test positive for 2 types of yeast. The cultures for that could take up to 2 weeks to come back. We are hoping that the treatment he is on for that will help. They will only make the decision to pull his line once the yeast cultures come back. We are still waiting to see if he is growing anything else besides the yeast.

He was sitting up in bed today and Child Life brought him a small Lego figure to build. He was wiped out after that and is back lying down watching a movie. His body is very sick and he is very pale.

His counts continue to drop too so both his teams are watching those too.
Thank you again for all the love and prayers

Back at Riley Hospital

Broc fell ill again on Saturday. He had extreme body pain, high fever and chills. Before things got crazy we packed our bags and headed for our local ER. Broc was stabilized there and transported to Riley.

On the way in the ambulance he started vomiting severely. The driver put his foot down because they could tell things were looking worse. Broc was not awake for most of the time. He was extremely hard to arouse.

Once we arrived in the ER everyone was in high alert because of how he was 2 weeks ago with his extremely high fevers. He was moved to a room in front of the nurses station.

More labs and blood cultures were drawn and we started packing him with ice packs to keep his temp down which was very unsuccessful.

In the ER his vomiting and diarrhea continued. Once we got to the floor the decided to change his antibiotics due to the infections he had last time and due to the fact that he was already on antibiotics.

We continued to fight his fevers. Only if we packed him with ice packs did his fever stay below 103F. He started to become very scary at one point. We couldn't wake him up and his breathing was very laboured. His nurse decided to call a CART in him. CART is a specialized team that comes in to evaluate the child and see what else they can do to help or if he needs to be transferred to ICU. They decide to draw some extra labs for Broc and a fungal panel was drawn. The results from that said that 2 fungal were detected but they need to wait for the fungal cultures to come back. It is very possible that Broc has a fungal blood infection.

He stabilize and wake up some more once they started the anti fungal medicine. We are hoping for a much less calmer day today and more results.

Our Buddy is really sick so please continue to pray for him. We are not sure how long we will be here for. Thank you for those friends who have offered to help with Lil Mark. Please text Mark if you are available for next week. Hopefully by the end of the week we will have a better idea.

Thank you for all the love,prayers and support.