Updates

It is hard to say that an infection of c. diff is a good thing, but in Chase's case I would have to call it a blessing. The treatment that he took to get rid of the infection helped him tremendously. While on the medication he ate well and had an amazing appetite. While his good appetite has diminished a bit now, the benefits from the medication to his intestines are still apparent. He seems to be very comfortable and we have hardly seen any blood in the last several weeks. He is also sleeping better, awake only every 3 hours at night and taking a good 3 to 4 hour nap every day.

Thankfully we were able to get some answers as to why he has so much trouble swallowing and why the act of eating is so uncomfortable for him. His OT has worked diligently with him since last summer to teach him that eating is ok. It took us months to get teach him to sit in the high chair and he has shown great progress in his willingness to eat, but his ability to swallow without gagging and to be comfortable while eating somewhat stalled.

The OT ordered a swallow study for Chase and the results showed why. His tongue only moves in the up and down motion which only allows him to pack foods flat in his mouth. He doesn't seem to know how to use his back teeth to grind food and only uses his teeth to bite down without any rotary motions. During the study, he aspirated the liquid and it is presumed with the way he swallows he aspirates the solids too. The doctor did say that Chase has learned to re-clear his airway for the most part, which is why he has not ended up with recurring respiratory infections. His diet has been regressed back to only mashed or aerated foods and liquids can only be through a straw.

It was very hard for me to see this study as I watched on x-ray image how difficult it is for his little body to try and do something that is so easy for most people. At the same time it was such a wonderful blessing.  It allowed me to completely understand what was happening...it all finally made sense! When we left after the procedure, I felt a great sense of empowerment to help Chase. Finally, we had a good solid answer to what was happening and ways to teach him to do better. I can easily compare this experience to my walk as a Christian. Before accepting Christ as my Lord, I had a hard time understanding this life on earth. But since accepting him everything makes sense. I am empowered as a Christian to follow the teachings of God's Holy Word and tell others about Jesus. God leaves no questions unanswered for this journey. His timing is perfect and His love is forever!

A couple of weeks ago, Chase had a speech evaluation and qualified for speech therapy. He has great understanding of what we are saying to him, he just has trouble vocalizing it back to us. They did do another hearing test which he passed - such a blessing! So, we are going to be doing some more signing with him and work on his overall oral motor skills. I am sure he is going to start talking soon and not stop. Then we will be wondering why we ever though we had to "teach" him to talk :).

He has continued to have his spells of dizziness, visual disturbances and watering eyes. His blood pressure has remained elevated as well. I mentioned in previous posts the need for him to start systemic steroid treatment for his colitis. We just didn't feel this was the best treatment plan without first treating his other symptoms as his colitis seems to be in some sort of remission for now. We contacted one of his doctors who agreed. This week he had a visit with his nephrologist, another kidney ultrasound and some more blood work. They really have no answers for us at this point, but we feel they are being very thorough and if there are answers, they will find them. We should know a little more at our follow-up appointment in 4 to 6 weeks.

Our Angel Chase

Finding time to post updates is a little tough with two kiddos, a hubby with two jobs and all the many things that fill our days, but I just wanted to make a quick post as things have been a bit rough lately for Chase.

He has had good days in between, but for the most part he has been sick since Thanksgiving. A series of viral illnesses, RSV and a stomach virus have been hard on him. He is now almost back to the weight he was a year ago. He was hospitalized last week for a stomach virus. He received IV fluids to help correct his electrolytes and was discharged on day 5 of the virus. He continued to have vomiting and diarrhea after we got home, up to 18 stools per day. We done our best to keep him hydrated, but on Sunday he started passing solid pasty stuff in his urine. He went in for a urine culture and stool cultures. His urine is just highly concentrated from the dehydration so we have been pushing even more fluids. We learned last night that one of the cultures came back positive for a C. diff infection in his intestines. His GI doc and PCP believe it is just a testament as to how bad his colon and intestines are, as he does not fit the normal criteria to have this infection. They believe the severity of his eosinophilc colitis and having the virus on top of it lead to the infection.

His immune system is lacking the ability to fight things off right now, but we hope he will soon become stronger. He began a 10 day treatment for the C. diff today. His first dose made him sick, but the pharmacy was so sweet to mix up another compound for us to try and he had no trouble taking it. Because of all of his acute illnesses lately, he has yet to take the high doses of steroids for his EC. The plan was to start them the last week of February, but the new infection will have to be treated first.

Through everything, he continues to smile constantly. Chase doesn't yet talk except for a few words, but he prays all day. He prays when he eats, when I change his diaper and just out of the blue. He doesn't speak...he just looks at us, puts his hands together and closes his eyes. He sits silent while we pray with him and after we pray, he claps his hands. His devotion to Jesus is a lesson for us all. I know he is the child and we are the parents, but this child has taught his parents more than we could ever teach him.

Ready for research!

As I mentioned in the last post, we have been so blessed to have been accepted for a research study conducted by the top doctors and researchers in the USA for metabolic disorders.  We were accepted in early December, but it has taken a while to get all of the information together to send to them.  Chase had to endure a large blood draw yesterday for the research, but he done really well.  They also collected blood from Ryan and myself to look for mutations. It will be about 2 months before we hear any news and it could be many months to years before the research is complete.  We are so thankful to have this resource and know that God's timing is always perfect!

Research Study!

We are excited about the opportunity to be involved in a research study for Pseudohypoaldosteronism!  The study will involve Ryan, myself and Chase.  It is being conducted by the leading researchers in the USA on the disorder and we feel so blessed to have been accepted.  We hope to get blood draws done within the next week and all the information they need returned to them.  We felt like some doors were closed with some news we got last week, but God has opened another one!

The biopsies from Monday's endoscopy were clear of eosionophils! What a wonderful blessing! This further confirms Chase is not reacting allergically to food which is awesome to completely rule out. However, it does mean that his eosinophilic colitis is an immune response and we don't know why. In a sense, his body is attacking his colon and is causing the severe colitis. The GI doctor told us Chase's body is fighting around the clock just to try to function normally; this explains why he is tired a lot. The colitis has to be treated aggressively and they told us the topical steroids were no longer going to be an option. They found he has mild gastritis in his stomach and he is going to start a new antacid type medication to treat it. After a few weeks of treatment for his stomach and after some immunizations he is lacking, he will start high doses of systemic steroids. The hope is a high dose treatment will put the colitis into remission. They will suppress his immune system, so we will have to try to keep him away from germs as much a possible. He will take them over the course of a month. His GI doctor is going to monitor him weekly while he is treated. He currently has a viral illness with a high fever and rash so we have get him better before we begin all of this. We are being referred to a cardiologist to take a closer look at his high blood pressure. It seems to be creeping up again, but the dizziness, blurred vision and falling spells have gotten a lot better. His strength and smiles continue to amaze us daily.

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.