What Minnesota Had To Say

Well, we are home now and I am still processing all that was said and everything, but here is what the decision is from Minnesota.  I posted it on Facebook as we were on our way home.

We are on the road heading towards home and we just got the call from Minnesota. They want to wait and see how the next few months go. If he has a lot of attacks in the next 6 months, then the surgery would be something they would do for him if we decided we were ready, but if he goes another 5 months between attacks like he did last time we can wait a while to make that decision. If anything changes with having pain inbetween or if he starts to lose endocrine function(insulin) in addition to his loss of exocrine function (enzymes which he already has to take for the rest of his life), then plans might change as well. I'm ok with this. We learned some new information and got answers to questions that other doctors would just ignore or BS us about. Right now his endocrine function is great and that function of the pancreas declines much slower than the exocrine function for people with atypical CF. That being said, pancreatitis and atypical CF affect each person differently. There are no definites or guarantees. His future (other than having to take enzymes the rest of his life) is one huge question mark. That was already the case because of his Autism Spectrum Disorder, but it is even more so now. I just hope and pray for his happiness. That is all I've ever wanted for him.

I will post in more detail soon after we are back into our daily routine and I don't feel like a zombie.  Also, Shade starts 2nd grade in a couple of days, so I will have time to think then.  Thanks for reading!

Pancreatitis for the First Time in 5 Months!

In the ER on July 13, 1013 before being admitted

     Well, we had a good 5 month break from hospitals and severe pain, but Pancreatitis reared it's ugly head again on July 13, 2013.  It started out like a normal Saturday morning with Dan at work and me and Shade lazily rolling out of bed around 1:00.  haha  We are night owls and love to stay up late and get up late on the weekends and during the summer.  Anyway, I didn't realize that anything was off at first.  He was waking up and watching TV on the couch.  Then at about 1:30 he told me that his tummy hurt and he asked for an Ibuprofen.  I had that familiar sinking feeling, but I tried to stay optimistic.  I gave him the medicine with a little juice and tried to assure him and myself that he would feel better in a few minutes.  At about 1:40, he pooped and I was more hopeful that things might settle down.  Well, at 2:00 he was literally screaming in pain.  Dan had the car, so I called my Mom and Dad in tears and asked them to come take us to the ER.  I gave Shade a half of a hydrocodone (which he was prescribed just for this reason) to help him until we could get to the hospital and then I packed and got things ready to go.
     When we arrived at the ER things went as they usually do.  We waited and waited and answered a million questions and then it was time for an IV so they could draw blood and give him pain meds.  It took forever and it was very difficult to distract him from the pain.  My Mom was such a huge help and my Dad was a trouper waiting in the waiting room due to only two adults being allowed in the ER room.  Of course, his levels were elevated and he was admitted very late that night.
     Things proceeded as they normally do and he was at first allowed no food or drink and only IV hydration and pain meds.  His pain was managed much better this time as we are learning to speak up more and demand they change the dose or the time intervals between so that he is suffering the least amount possible.  We have also learned that even if it is out of the nurse's hands, we can always demand to speak with a doctor so that orders can be changed.  We have become better at utilizing the Child Life workers and all of their resources and after 7 hospitalizations we have finally settled into the rhythm of life at the hospital.  It is not easy and it is still very exhausting, but there is comfort in familiarity.
     He was allowed to drink and then eat and his pain became less and less.  He loves to tell jokes to the nurses and we've found that he likes to ride up and down in the bed and "surprise" the nurses when they walk in by having the bed as high as it will go.  He is such a trouper and so resilient.  I die a little inside every time I have to watch him suffer, but he just bounces right back as if it's nothing.  He was given an abdominal ultrasound to make sure that there were no gallstones even though Dr. Palermo said that there were.  We were relieved, albeit frustrated with human error, to find out that he does NOT have gallstones at all.  If he had, they would have wanted to do an MRCP and then probably surgery to remove it.  No surgery is good news and we were allowed to go home on July 18.  Then all we had to do was prepare for our trip to Minnesota to see what the experts had to say about everything.  Details coming up!

Some Good News and Some Bad News- Let's Get Caught Up

In the ER again in June 2013

I have not updated in a while and I want to get caught up so that I have all of Shade's journey recorded.  Back in the beginning of June, we found out some great news.  Here is how I posted it on Facebook:  "We are going to Minnesota at the end of July for Shade's evaluation!! The experts will talk with us and review Shade's records and do tests and they will determine if they think that Shade needs the TP-AIT. So happy because this is what we have been waiting for, but terrified all at the same time. Also, insurance has not been completely worked out so we may end up having to pay out of pocket for this, but it will be worth it to finally find out if he needs this surgery or not."   I was super scared about how the whole trip would play out and how Shade would behave for the 3 days of tests and doctors and talking.  He did so much better than I thought he would do and I held up better emotionally than I thought I would as well.  I went in with no expectations and a few questions.  I was fully prepared to accept whatever they thought was right for Shade.  Ultimately, how we proceed with our son's treatment is up to us, but if they won't do the surgery, it doesn't matter if we think he needs it. 

My main concern going in was the results of his fecal elastase test in June.  If you recall, I had practically begged Dr. Palermo, his GI in Cincinnati, to do a fecal elastase test in April because he was already at a 99 back in November and had more attacks of pancreatitis since then.  He assured me that it was unnecessary because "the damage would not happen that fast" and it would be pointless to do another test so soon.  Well, when we had our appointment in June, practically the first words out of his mouth were that he wanted to do a fecal elastase test.  What difference that 2 months made, I don't know, but I am glad that he did it.  The results came back as 56 and anything below 100 is considered severely pancreatic exocrine insufficient.  This means his pancreas is shutting down it's production of enzymes.  He will need to take enzymes with everything he eats for the rest of his life.  I had no idea what this meant for his endocrine function and I was concerned that if we waited too long for the surgery, that he would not have enough good islet cells left to harvest.  Luckily, these concerns were addressed and I will fill you in on our trip in one of the next posts! 

I don't want to get too ahead of myself though.  Also during that visit with Dr. Palermo he mentioned that he has seen some small gallstones on some imaging from Kosair and that if Shade has any stomach pain that we should take him to the ER to get his amylase and lipase levels checked to rule out pancreatitis.  He had actually had some mild pain in May and we almost took him to the ER, but he was eating and drinking and only slowing down every now and then.  This lasted for 4 days and then he was completely back to normal.  Upon hearing about the possible gallstones though, we decided that if it happened again, we would take him to the ER.  Well, it did happen again on June 27, just a week after our appointment in Cincy.  We took him to the ER and they tested his levels and they were normal.  We were relieved, but still concerned about the whole gallstone issue.  We figured we would just ask at his next doctor's visit if he needed another abdominal ultrasound to confirm or what.  The docs in the ER did not seem concerned when we mentioned it to them and even Dr. Palermo had not mentioned surgery or anything, so we didn't know what to do.  Well, this brings us to Shade's next attack in July which I will make a separate post for and then the one after that will be our MN trip.  Stay tuned!!