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.

Day 2 at Riley

Broc had a good night last night. He is still having pains. We thought it could be sugar related so we ordered him a drink without sugar but he is still having pain. We have ordered gas drops in the hopes that may give him some relief. I am also draining / venting him more often. We have also ordered Farrel bags to hook up at night to drain his belly. Anything to keep him as comfortable as possible.

The GI team came by and said that his xray was a typical xray for Broc with lots of gas and loops on it. No physical obstructions were seen which I kind of figured but we always have to check and make sure. His TPN will continue 24\7 and they will slowly start adding more and more calories to it until he reaches his goal of calories that he needs to survive. They draw labs twice a day to make sure he is getting the correct amount of potassium , sugars ,vit etc.

The Cardiology team came by to consult regarding Brocs low blood pressures. They have ordered an echo for tom morning before his procedures to check on his heart and make sure he is stable to have his procedures tom. If his heart has issues then obviously those will be addressed first. They are hoping that his heart is fine and his body and vessels are just having an issue with adjusting to the different fluid levels in his body. He had been on iv fluids for 4 days straight with no nutrition so that could be a factor. It maybe that he just needs a simple medication change or another one added.

We are still looking for people to put Mark on the bus in the morning from Tuesday till Friday. We are hoping to come home Friday but we do know that could change and we could be here longer. I will try and make a few phone calls to see if I can find someone.

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

This is what his TPN and iv fluids look like. The TPN is the white liquid which looks like milk.

Day 1 at Riley

Broc and I came down to Riley yesterday as he still wasn't tolerating any feeds and had been on iv fkuuds since Wed. He really needed to be on TPN and no one near to home was able to help us.
I called the on call GI and explained what we have been dealing with. She said she would let the ER know we are coming down. We arrived here and then went straight Back to a room. Blood cultures were taken from his picc line and his arm. We finally got to our room around 1:30am. We saw lots of Drs and nurses and I answered lots of questions.

We finally got to sleep around 3:30am. At rounds this morning we had a great team discussion. The Gi Drs in charge listened to Brocs entire history and were very impressed with meds and testing we have done. They all agreed that we have reached the end of the road for treatment for Broc. There is one other medication we could try but it could effect his heart adversely which Broc does not need.

The plan is to start TPN today and figure out a stood schedule for him. This could take a number of days to work out all the kinks. Brocs body is not able to digest the amount of formula that we were giving him. So we will give him a very little bit of formula through his j tube and make up the rest of his calories with the TPN.

Broc has also started ABX due to the fever ,low blood pressures and nuetropenia. This is just to cover him until they blood cultures have come back. Unfortunately having TPN hooked can increase his risk of a line infection but we know that he needs to the TPN to keep him alive. It is a very delicate situation. If Broc were to get a fever we would have to drive straight to the hospital and he will be admitted for ABX until his blood cultures have come back negative.

For now we sit tight and enjoy our stay. We have already had a few of our "Indy family" visit us. His blood pressure has stabilized since getting a bolus of iv fluids ontop of the iv fluids he has running.

Thank you for all the love ,prayers and support. If you can offer any help with Mark please let Daddy Mark know. We have someone to get Mark off the bus until Friday. We do not have anyone from Tuesday till Friday morning. If you can help please let us know.

A rough couple of days

Since the weekend Broc was having a lot of pain again in his abdomen. I hate to say belly cause its really not his belly its his intestines where the pain is. We lowered his feed rate Tuesday afternoon to see if that would help. By Wednesday morning 4am poor guy was in so much pain we had to stop his feeds altogether. I decided to wait until we spoke to his GI to find out what the next was. Unfortunately Broc took a turn for the worse really fast and his blood sugar went up so we had to hook up IV fluids.

We finally heard back from the GI and he sent us to the hospital for lab work. Brocs labs said that he was very dehydrated and had a viral infection. Lesson learned never let Broc go without any IV fluids at all. He had us all worried on Wed morning.

We tried to hook up boost on Wed late in the evening and by Thursday morning his pain was back so we had to switch off his feeds and hook up IV fluids again. We have spoken to his GI and infusion company about organizing TPN for him this weekend if he still cannot tolerate any feeds.

We are hoping he can have just a little to give him the energy he needs to get through his procedures on Monday. Broc will be having a bone marrow biopsy as well as a new GJ tube placed.
Please pray for safe procedures and minimal pain for Broc and no complications. We are hoping to come home Monday night but with Broc nothing is ever guaranteed.

Thank you for all the love, prayers and support. Thank you too for the friends that are helping us with Lil Mark.



 

A week of Specialists.

Tuesday we took a trip down to Riley to see Dr Nalepa. Him and I had been talking all weekend and deciding what was the main focus of our visit on Tuesday. It really makes parents so much more relaxed when the Dr is as invested in your child's health and well being as you are.

We spoke about how Broc has been since he came out the hospital. How he is still having fevers and chronic viral illnesses. Unfortunately until we get some answers there is nothing that we can do about the viral illnesses. We discussed Whole Exome Sequencing and what that entails. We carefully went though all the paperwork and signed it. He said that since we have come to the point where there is no more testing for Broc to figure out why things are not working properly then this will be our last shot. W.E.S. looks at Brocs entire DNA. I also did blood work myself and dad too. This will take about 6 months to come back so now we sit and wait. He does think that there is an issue with the way his immune system functions and not necessarily what it looks like on paper. Broc will be having his bone marrow biopsy on 31 August. Those results will take a couple days to come back. We have been told that it may look totally normal and that is also fine. We have also been told that we may not find out too many things with the WES either but at least then we know we have done everything we can to figure out what is going on. As a parent (mommy and daddy) we are supposed to make things better. It breaks our heart that we know that there is nothing we can do to help Broc but love him and take care of him the best we can.

Thursday we saw Dr Zaidi in South Bend. Thankfully the drive was not 7 hours roundtrip. We have to be thankful for small things right?
Dr Zaidi had a lot to discuss about how Broc has been since his hospital stay too. It seems as though his bacterial overgrowth keeps coming back once its been treated. Broc is so much better once he has been treated for it so we will treat him once a month for it. We are all concerned about Brocs weight. He cannot tolerate any more volume than we are giving him although we are trying to increase his rate by 1ml every week. I know that sounds like nothing to us but for Brocs digestive system its huge. We are trying a fortifier for him to add calories to his formula. If Broc were to get really ill with a high fever, flu etc he has nothing to help him. He has no fat stores to help him fight. That is why we have to protect him wherever he goes. Thankfully the new masks that we got him he can breathe through and loves wearing them. He loves it when people say "cool mask". He would like Broc to be monitored monthly by a dietician as Broc is lacking in 100 calories or more a day. We need to make sure he is getting enough fat, protein, vit and minerals etc everyday to build his body and make him stronger. He has sent a RX to our infusion company for TPN. If Broc has an episode where he is not able to tolerate his boost or formula after 48 hours then he will start TPN so that he doesn't end up loosing so much weight.

Friday we drove back down to Riley. It was so lovely to have a friend go with us. We love that your circumstances allow you to ride with us. I love the company and the way you keep Broc busy while I'm trying to talk to the Drs and listen to all the info. Our trip down was much better than Tuesday with all the rain and storms. It was lovely and sunny. Seeing Dr Boaz is such a treat too. He too is loving and compassionate like all the other Drs on Brocs team. We are truly blessed with a wonderful team for him that is invested in his health and loves him too. We caught Dr Boaz up on everything that has happened since we saw him last which was Dec last year. As many of you know a LOT has happened to Broc since then. He is concerned about his balance or lack there of and his continual pain in his legs and feet. He is also concerned about the blockage that was found with his saphenous vein in Jan of this year and wants to rule out any that may be hiding in his brain. Lets hope not. Broc loves to keep things like that a secret and then reveal them as a total surprise!! Dr Boaz has ordered a slew of brain and spinal imaging for Broc. Unfortunately we don't think it can be combined with his procedure in 2 weeks so it will have to be done on another day. We are hoping that there will be nothing serious with his brain but as always if there is we will do our best to deal with it.

We are seeing another specialist at the end of Oct. We hope that he will be able to put some of the pieces of the puzzle together for us. We are also hoping that he will start to formulate a really good plan when Brocs body goes into a crisis mode. We think he will be the Dr to coordinate all of Brocs care. He will be in touch with all Brocs specialists. He has a dietician as well and we are hoping that she will be following Broc too. All Brocs specialists are so eager for this app, maybe more eager than we are. They all think mito is a probability for Broc but he will be the one to makes that determination.

He may never eat like a "normal" person again. We don't know why he cannot digest food and the Drs cannot give us those answers either. Sometimes Drs just don't know all the answers like we want them to. They are all trying to give Broc the best quality of life they can. We know that soon Jehovah will make him well and healthy again. Broc knows that too and he looks forward to that time everyday.

Thank you for all your love and support and prayers.

Lots going on......

Broc has been having continued belly issues. We tried many types of food,many types of consistencies and nothing is agreeing with him. Last Sat was his last bit of food. He got so ill towards the evening then we ended up in the ER on Sunday. They really couldn't help us anymore as I had already hooked him up to IV fluids Sat evening once he stopped tolerating any type of feeds. His pain was so bad but nothing we gave him really helped.

We couldn't get a hold of his GI so we only heard from his Tuesday morning. He decided to admit Broc as he still was not tolerating any feeds and still having pain. Once we got ourselves settled he had another belly x-ray to see if there was any change since Sunday. Thankfully there was less air and fluid in his belly. We were able to start boost around midnight that night and slowly increase his rate. By the next evening we were able to start formula back up also very slowly. Thankfully we avoided going to the ICU for a new medication and tpn. The new medication would have woken up his belly if he wasn't able to tolerate the boost and the tpn is IV nutrition.

Unfortunately Broc lost close to 2 pounds since last Saturday when we switched him to IV fluids. It may not seem like a lot of weight to loose but on someone that is already pretty skinny and needs all the calories they can get just to function its pretty crucial. We are going to set some protocols in place for when this happens again. If Broc cannot tolerate feeds after 2 days of IV fluids then he will go into the hospital to start tpn or we will have his nurse come to the house to start it.

We had a long talk with his GI and he has come to the realization that there is no reason that he can find why Broc cannot digest or tolerate any solid food. We have done all the biopsies and looked all through his belly and small bowel and nothing was found. We have consulted another GI who has also followed Broc and he feels the same way.

For now we are trying to go up on his feed rate very slowly as his belly does not like change at all. We are hoping to get him to a rate that he will start to gain weight at. It seems that he is only taking in enough calories to survive. We have tried to increase his rate in the past but it just leads to lots of pain,nausea and a very unhappy boy.

The last time we visited Dr Smith she said that it looked like Broc had a form of Mitochondrial Dysfunction from looking at his past history and how he is currently doing. Unfortunately it could explain the fact why last year he was able to eat food with lots of pain and nausea, but he was able to digest at least some and now he cannot digest any food at all.

We had Brocs eyes tested this week and unfortunately he will need glasses as his eye muscles have weakened again. His glasses will be made with prisms into the lenses to magnify everything for him. He doesn't have an issue with distance but his eye muscles do not work properly and he doesn't have any binocular vision either.

We are still in the process of trying to figure out the source of Brocs Neutropenia and Leukopenia. We will see Dr Nalepa next week to discuss our next steps.We will also have more info once the bone marrow biopsy is done.

We are also seeing his Neuro Surgeon next week as he is having lots of balance issues again and some other weird brain things going on. We are hoping that it has nothing to do with the surgery he had a year ago. Unfortunately Broc does have a big issue with scar tissue so we are hoping that this is not the case.

Brocs G port has started leaking on his GJ tube so that will be scheduled for next month sometime. While he is sedated for his GJ tube change he will be having his bone marrow biopsy and possibly a brain MRI too.

We are hoping to hear about Brocs wheel chair soon too. It does take quite a while to get the Drs to sign and fax paperwork.

I have started homeschooling Broc and its going really well. He has already completed some of his lessons for next week as we will be super busy with Dr apps. It really gives us the flexibility we need with him. It allows him to rest when he needs too as well.

Lil Mark had his first day of 4th Grade. He loves his teacher and came home and said " That was the best day of my life". A mom loves to hear those words. It gonna be a great year!! He has to deal with so much besides going to 4th Grade. He needs a teacher that is very understanding and flexible. So far his teacher seems just that. We have been very happy with all Marks teachers in the past. They have really understood our family and have been very helpful when we are dealing with medical issues with Broc. They really take Marks feelings into account and help him whenever they can. I'm hoping that with homeschooling Broc I will be able to give Mark all my attention when he gets home to help him with his homework.

I think that is all the news for now. I will update next week once we have seen his specialists. We really appreciate all the friends that help out with Lil Mark in the mornings and afternoons.

Thank you for all your love,prayers and support.