Slight change in plans

Broc and I saw Dr Rouse Friday.What a lovely,kind older man. Like a Grandpa type. Broc loved him and so did I. Anyway he said he would look over all the notes we gave him and give us a call Monday. So we heard from Dr Rouse today.Him and Dr Boaz feel that it would be best to do the Chiari surgery first and then see if it makes any difference in his reflux and Gastroparesis issues. There is a possibility that it can help and it may not. The impedance probe study that Broc had in Cincy was really sad. It showed that he has many episodes of reflux all day and night and many of his episodes are lasting longer than 15 min. The acid is also pushing way up into his esophagus.The only good thing is that Broc clears the acid very quickly too once its over with so its not causing any damage to his esophagus yet. We are going to give it a chance cause then just maybe Broc wont need the other 2 surgeries. We have been told to give Broc a 4 week recovery period and if his reflux and gastroparesis symptoms have not improved then we will go ahead and do a gastric emptying study solid phase. Broc has only done a liquid phase as he was a baby and only drinking milk. If the gastric emptying study is positive then we will go ahead with the Nissen and Pyloroplasty surgery in 4 weeks.

Still waiting on a call from Dr Boaz or his nurse. Otherwise we will just speak with him day of surgery. He is a very highly respected Neurosurgeon and excellent in what he does.He also has wonderful bedside manner.Everyone has nothing but great things to say about him. If anyone would like to visit us the day of surgery it will be at Riley Childrens Hospital on Aug 13. Please feel free to message or email me and I will give you any extra details.

We also saw Neurology for Mark last week. Another great Dr. She really cares about his quality of life and how much he has missed out this Summer due to all his migraines. She has given him the same med I take for my heart but it helps in migraine patients too. So far it really seems to be helping. We are also focusing on what his triggers are and trying to avoid them at all costs.

We have our Regional Convention this weekend. We are really looking forward to all the encouragement and new faces that we will meet. The boys love the Dramas too. This year there will be an extra one so that is very exciting. We will also be tied in with other Regional Conventions as well as an International Convention. It will be the boys first International Convention experience. I always loved them as a child. Loved meeting all the foreign delegates. Although they wont personally get to meet any of them they will be able to see them via video screens. We will be posting many pics after the weekend so look out for those.

We thank you all for your continued love and support.

The next Step....

As many of you have read from the last post Broc will be having Chiari Decompression surgery. We have scheduled this for Aug 13. We have also found out that Broc has a syrnx (a cyst filled with spinal fluid) in his spinal cord and its putting pressure on his cord. It is located between T6-T10. So who knows what issues its causing. If we don't do the surgery this cyst will keep getting bigger and cause more complications for him.

We have since spoken to Cincinnati and gathered some more information from them.They had there final meeting about Broc on Wednesday and since his sleep study was perfect they found no reason to intervene with anything in that dept. right now. We did get the results from his ENT and he does have a Grade 1 Laryngeal cleft. They feel that that is not causing his reflux to be any worse. We didn't get the report yet on the impedance probe study but they did say that he refluxed all night and they think this is the reason for him waking up all night. That would explain why he is waking up tired in the morning and also has less energy on some days too.
They recommended for him to have a Nissen Fudoplication. This has been suggested to us for the last couple years and we have always said no. We wanted the Drs to use that as a last resort for him. It finally seems that we have come to that now.

We are waiting for Cincinnati to sign the referral papers so that Broc can have the Nissen surgery at Riley. We are really trying to get him in quickly so that he could do the Nissen on the same day as the Chiari surgery.With Broc being a cardiac patient the less anesthesia he has the better. We figured that he will already be recovering from one surgery so it will just mean a little longer recovery and he will be in pain in more than one place on his body.

It really stinks that he has to have a major surgery this year but we feel that these 2 surgeries will really be of benefit to him.He has suffered his whole life with reflux and its becoming really bothersome for him. We have tried all kinds of medications,natural remedies,diet changes etc and nothing seems to be helping him.

Thank you again for all your love and support. If anyone has any questions please feel free to email me or leave a comment. I made new pages above on the 2 new surgeries. Click on those 2 pages and you will be able to read about the surgeries.

Brocs Spinal MRI

Broc had an MRI of his spine. Dr Boaz said that its much better than a brain MRI as it can show different things. The brain MRI is still beneficial as it can show different things too. After looking at Brocs images Dr B came in and told us that Broc does have a significant Chiari 1 Malformation. He also noted that he has fluid in the bottom of his spinal cord which could be another marker or it could mean that he has a tethered spinal cord. He has not looked at all the images fully so this is just a preliminary dx. He did say that Broc would need to have decompression surgery. Really not the answer we were looking for but we know that the Drs and us are trying to give Broc the best quality of life possible. Dr Boaz will be calling us in the next couple of days to let us know if he found any more issues with is images and what the surgery plan will include. Brocs chiari also impacts his swallowing issues too.

On another note Lil Mark has been dx with aura migraines. He has been really miserable the last week or so. Wearing sunglasses most of the time and asking us to switch lights off. Dr Boaz is going to see if we can move Marks spinal MRI up too to see if he sees anything else on his images. Its possible that Lil Mark will need decompression surgery too.

Unfortunately Chiari goes along with Ehlers Danlos Syndrome and possibly 16p too. The sooner we can have them repaired the sooner they will get relief. Dr B said its better to dx them when they are little so that they can be repaired and there brain will have a better chance of growing properly and not getting squished.

As soon as we have a plan for both the boys we will let you know.
Thank you again for all your love and support.

ADSC Clinic Trip Day 4 & 5

Once again another early morning. I woke up extra early so I could run to the nurses kitchen to grab some coffee before Buddy woke up. I also gave him a quick drink before his time was up for drinking too.

We left the floor and went down to radiology to start the next round of tests. The barium swallow and video swallow study. Daddy and Mark decided to stay at the house and play and eat a yummy breakfast of pancakes and sausages.

Broc did very well during all his testing and go to eat Oreos as one of his tests. He was thrilled about that. Of course when you haven't eaten and they give you Oreos, he thought he was KING.

We learnt form this study that Broc has a small issue with swallowing and food and drink stays behind once he swallows. Again this could be a reason for his reflux but not sure. They suggested that he drink something with every meal to help his food go down smoother. He does this anyway I think its his way of protecting his airway.

After he was done we headed down to the resource center to ask where is another great place to take the kids. They mentioned a museum so we headed back to the RMD House to get the car and off we went. It was so interesting. They had a huge DINO exhibit which was of course a huge hit for the boys. There were also lots of interesting facts and places about the old Cincinnati. There was a childrens museum too where the boys could let loose and run around. A great place for mom and dad to rest weary bones and regroup. Also to discuss some of the new dxs Broc had been given without talking in front of the boys.

Once we were done at the museum we headed back to the house as Broc and I had to check back into the hospital at 6pm for his sleep study. Once we got settled in our room we ordered dinner and watched a movie. After that Broc was ready to be all hooked up and sleep for the night.

We were discharged and headed back to the house. Daddy and Mark were still sleeping when we got there. We took our time getting everything packed up and cleaning the room. The RMD House very kindly gave us tickets to the Newport Aquarium. What an amazing place. Full of tunnels of water of sharks,rays,fish etc for us to walk through.

After the boys were all tired out, we grabbed some lunch and headed home. We decided to drive straight through. Before we hit home we stopped at DQ for a much needed ice cream.

We learnt a lot of new info and some old info on our trip. We are hoping to get some new answers and a new plan on Wednesday. We will be sure to share things with you as soon as we have had a chance to discuss things as a family.
Thank you for always supporting us and for your continued love and support.