Having so many doctors involved in Chase's care makes things really complicated sometimes, although we are truly thankful for them.  The communication is not great and the course of care from each of them seems to change with the wind.  We had cancelled the endoscopy, but in doing so we caused a firestorm of phone calls.  By the end of the calls and our meeting with the doctors last week, we decided to put it back on.  The procedure was performed yesterday.  Chase done a great job with the fasting and seems to be feeling a lot better today as the anesthesia has worn off.  They were able to take biopsies from his esophagus, stomach and the top of his small intestine.  This completes getting biopsies from his entire GI track.  The doctor said his esophagus looked really good and we should have the biopsy results back by Thursday.  The treatment plan all depends on the biopsy results.  If the eosinophils are in his esophagus he will have to take systemic steroids and if they are not, they plan to use a topical steroids over a course of 4 months.  The topical steroid would be much safer and without side effects.  Even though the treatment is longer, we pray this is the treatment we can go with. 

Lots of progress

The allergy testing on Monday showed no food allergies!  As you know from previous posts, the term "allergies" has somewhat followed us on this entire journey and even though we have ruled them out through elimination diets in the past, it is such a relief to get testing done and rule them out for sure.  Our frustrations around them saying he has allergies is just that they were stopping at that diagnosis and didn't seem to want to dig deeper for answers. By talking to our GI doctor before the testing came back negative, they were really close to putting Chase on an elemental (predigested and allergen free) formula with no other foods by mouth. I was terrified as the previous elimination diets have been so hard, but this would have been almost impossible. I have learned so much in this part of our journey...mainly patience and just understanding how perfect God's timing is! 

Chase's nephrologist called on Saturday and is having us monitor his BP several times a day.  It is still elevated and the medicine is still making him a little sleepy, but he seems to feel a lot better and he is having less spikes.  We talked about genetic testing for Pseudohypoaldosteronism Type 2 and plan to proceed with the testing.  The lab in Germany already has Chase's DNA and we hope to get authorization for the test (this is something you have to do to get testing done outside of the United States) soon.

Today is a special day...all of Chase's doctors are going to meet together in the same room and brainstorm.  They called yesterday and said it would be a discussion involving genetics, hematology, neurology, nephrology, endocrine, infectious disease, GI and his specialized care doctor.  We are hoping to hear back sometime this week with information from this meeting.

Ryan and I have decided to cancel the endoscopy scheduled for Monday.  We have been very compliant and trusted the doctors on most everything, but we feel this is a procedure that the risks certainly outweigh the benefits.  Chase had a lot of trouble with his anesthesia a couple of weeks ago and had to be intubated.  The endoscopy is a procedure that would further compromise his airway and it is just unsettling to think about.  I prayed a lot about it as I put my faith in God for making these decisions.  Our answer came Monday when the allergy testing came back negative. 

The upcoming MRI is another thing we are praying about.  It too involves anesthesia.  I trust God will guide us on this decision as well.

A busy week!

The biopsies from last weeks colonoscopy came back on Monday of this week.  His doctor called and told us they revealed he has severe eosinophilic colitis (EC).  She presented his condition to the other doctors on Monday morning and they agreed that an upper endoscopy was necessary to check for the lymphonodular hyperplasia there too.  There is no cure for the colitis and the only treatment is rounds of steroids that would hopefully put it in remission.  Steroids are scary, especially since we do not have an answer for the hypertension and other issues.  I pray there is another treatment plan they come up with.  I have asked they hold off on the steroids until they do the endoscopy.  In the meantime, we can hopefully find out why he has developed this disease and treat the underlying cause.  EC has two forms, a primary form and a secondary form.  They believe he has the primary form and that it is stemming from allergies, so we are going Monday to see the allergist for testing.  The secondary form is caused by and underlying condition (potentially an autoimmune response) and by treating the condition, we could clear up the EC.  I do not know if this is linked to PHA, but I do know PHA has caused damage to the lining of his colon.  I believe this damage could have lead to the development of EC, but no cases of this are written in literature and the doctors have decided the two conditions are not linked.  The upper endoscopy is scheduled for November 21st.  We should have a better understanding then.

Chase's visit with neurology this week was a great one!  They do not think he is having seizures! They did diagnose him with benign paroxysmal positional vertigo, but we were so happy to rule out a more serious neurological condition.  God is so good and we are so thankful for this blessing!  The vertigo does help explain his dizziness, falling, visual disturbances and headaches.  They are going to do another MRI just to confirm their diagnosis, but feel certain it will be normal.  There is a medicine to treat this, but we want to hold off on it for now as we feel he is taking enough and there are always side effects to deal with.  We are trying to get the endoscopy and MRI scheduled on the same day to minimize the times he is under anesthesia.  It felt so amazing on the drive home to have heard such good news!  It was almost sunset and the sky was absolutely beautiful.  It seems that God shows us these beautiful images as a way of encouragement and to give us a glimpse of how beautiful Heaven will be!

Chase's blood pressure has continued to stay elevated, but he has responded well to his medication and
they moved forward with scheduling his colonoscopy for yesterday.  It was a rough day for him.  His bowel prep left him dehydrated and the anesthesiologist had a hard time getting his IV started.  They blew several veins and ended up doing an arterial stick for his bloodwork.  We were able to stay with him until he was asleep, but it was hard to watch.  An hour and a half after they began, the doctor told us she found lymphonodular hyperplasia lining his colon.  She said they didn't really know the cause of it, but she believes it is the source of his blood loss.  She did do biopsies, but we will not get the results until next Friday.   The good news is she did not see any more ulcers!  He did have some difficulties with his anesthesia and a lot of bleeding after the procedure, but he seems to be doing better today.  She told us to keep him on Miralax until we see her again next week.  She is planning an inpatient stay for him in a couple of weeks to calculate all of his caloric ins and outs.  Chase has always been on the small side (below 0% on his growth charts), but he has been unable to gain weight and grow properly over the last several months and this would help narrow down the reasons why.

The EEG he had done last week came back normal.  What a wonderful blessing!  He has an appt to see the neurologist next Wednesday.  With therapy on Tuesday and Thursday and appts on Wednesday and Friday, Monday will be his only day off next week.  He sure is a hard little worker!