Alex and Maddy

Alex and Maddy

Friday, April 27, 2012

Slow and Steady

That is our life right now. I haven't updated because I kept waiting for us to make some great progress and it just hasn't happened. But at least at this point I have some news to report! From the time Alex got home from the hospital until April 10th everytime we had to stop his TPN to give a med his blood sugar was dropping into the 20's. This is extremely dangerous, but we kind of just got used to it. I would watch closely and we were running the meds as quickly as possible and counting down the minutes till we could restart his TPN. On April 9th, when I ran labs (which I have to turn TPN off for) his glucose came back at 31 which set off a slew of phone calls between numerous doctors and myself. Several of the doctors wanted Alex admitted while me and the dietician scrambled to try and figure out an alternate plan. With the help of our pharmacist, we switched some things up and were able to avoid an admission by managing to keep his sugars above 40. Up until that point we had not been able to get any meds in his tube and only a teaspoon of water a day. We switched from plain water to sugar water and over the next week and a half were able to get his sugar water up to 15 cc/hr and add in some much needed medications. Alex has had a really hard time being off the majority of his medications. He was having migraines almost daily, as well as, horrible anxiety and leg pain. He also started to develop what we believe are ulcers around his Gtube based on past experience. At this point we have been able to introduce 5 of his medications back into our normal schedule through his Jtube. As of Monday, we have also been able to switch back to formula which we have running at 10 cc/hr. We are so thankful that while it is slow we are finally taking steps in the right direction!

As some of you know we applied for a service dog for Alex about a year ago. We had chosen to use a company based out of Georgia who supply the dog's free of charge to the family (a service dog normally costs about $20,000). We were told that the wait list is based on need and can range from 1-5 years. In light of the horrendous time we have had with Alex's blood sugars, I decided it was time to check in. One of the main reasons we want/need a dog is to alert us if Alex has a seizure or low blood sugars over night when he is unable to tell us himself.  However, when I called, I found the woman to be extremely rude. I could get no conversation going except a repeated, "it will be 5 more years". her attitude and how unconcerned she was to know if there was any change in Alex's health or even a simple "how is he" prompted me to look at other options. I have found a local breeder who specializes in diabetic alert dogs who I had a great feeling for. I am in the process of looking into some options for fundraising as a dog through this breeder would be about $12,000. However, he could have a dog for us in 12-18 months and Alex would be a big part of the training. We would be able to start visiting "his dog" once we sign a contract. I am really excited about this new possibility. Please be in prayer as we try and figure out the financial aspect to make this a reality for Buggy. A dog would benefit him on so many levels and would give me some much needed peace overnight!

Alex and I are once again about to hit the road. Alex is scheduled for an MRI of his entire Spine and an SSEP to assess the syrinx in his spine (fluid in his spinal cord) next Friday. This is something we have been watching for several years. Because the fluid is in his spinal cord and change could cause serious problems that would be irreversible. We repeat this testing every 6 months to a year to be sure we don't miss anything. Unfortunately, this is a long test under anesthesia. It is typically between 4-5 hours. Alex was absolutely petrified about anesthesia and had an especially hard time last month. Please pray for him to be calm and feel at ease as we head to Houston. We will stay in Houston over the weekend and then we have appointments Monday, Tuesday and Wednesday. If all goes as planned we should be home the following Thursday.

In other news, Alex and I have done great sticking to our school schedule this year and he should be on summer break after the first week of June. This will be the first year that we will get a whole summer off! That will be a nice break for us both!

I think that about catches you up on everything. Thank you for your continued love and loyalty to our family.

Saturday, April 7, 2012

The Spirit of Friendship

I have learned about friendship, the truest kind. I have learned from seven sweet kids and their incredible mom's. Mom's who swept me out after bedtime this week to let me enjoy some girl time and relieve some of my frustration over the hard few weeks we have had.

I have seen frienship as I watched Brookie lovingly move Alex's bucket closer so his tubes wouldn't pull.

I have see frienship as Walker slowed down and walked next to Alex's chair so he wouldn't be alone.

I have seen friendship in friends as they show their excitement to see each other again.

I have seen friendship as 6 friends stopped looking for their own eggs to be sure that Alex had as many as everyone else.

I have seen friendship as 7 friends traded or in some cases just gave away new prizes to make someone else happy.

 I have seen friendship that puts a smile on my baby's face that has been there far too little in the last 3 weeks. And that makes me smile!

On the way home, Alex said, "Mom I have the best friends in the world. They couldn't be any better." You are so right, my sweet boy. And for that I am so grateful!!!!

Wednesday, April 4, 2012

So Painfully Slow!

That is how I feel about this process! The good news is that Alex is feeling better overall. We are back into school. Alex is enjoying playing in his playroom. His labs are improving. Our pharmacist has been able to get IV arginine which was one of our biggest concerns. Unfortunately, we are making virtually no progress on getting Alex back to baseline. We have tried giving just 1 cc of med into his Jtube. He just cannot tolerate it. We are unsure if it is from pancreatitis, his motility being even slower then usual or most likely some combination of the two. After speaking to the GI we have given up on meds for the time being. We know that meds can be hard on his system even when he is feeling good. The plan yesterday was to try giving 2 cc/hr of water into his tube. We let it run all yesterday afternoon and last night, but the pressure in his intestines is too much. He backed bile up inot his tubing instead of the water going in. I spoke to the GI's office again this morning and we are going to try 5 cc/hr of water and see how that goes. I am praying that he can tolerate that tiny amount. In the meantime, we are still using quite a bit of nausea medication.
Alex is struggling emotionally. He is not mobile at all. He cannot carry his bag so he cannot even get into the bathroom by himself. We had a good friend send a rolling bucket to help him get around (Thanks Mariah!) so we are hopeful that will help. He is also upset that he can't lick any foods right now. We are dealing with blood sugars that are dropping into the 20's twice a day when we have to stop his TPN for his IV seizure med. We are also battling some symptoms caused by the fact that we cannot give most of Alex's meds. So many meds do not have an IV version so on top of pancreatitis,he is stuck with anxiety, neuropathy, back and leg pain and headaches. Needless to say I think we would all be a little crabby!

Sorry this is such a negative update, I did not mean for it to be. I am just trying to give a realistic update of where we are at this point. Please continue to pray for that little GI system to start to work again.