2012 Year in Review

How do you recap 2012? It was quite the crazy year for our family. It has been an extraordinarily stressful year that just never let up. Many points through out the year we were dealing with multiple high stress issues simultaneously. As always we simply stayed focused, prayed and let our faith guide us. Despite the chaotic year we know how truly blessed we are to have support from friends, family and fans like you. That too has propelled us through the thick as we continue to rise above the adversity. There are so many people to be thankful for this year. Through our busy schedule we are slowly getting thank you notes written to send out. We want everyone to know just how much we truly appreciate everyone and everything. We would not have conquered this year without you.

Here are some of the events for 2012:

This year we learned that Elias has chronic kidney disease (CKD). This was quite a blow as we learned that his kidneys are only functioning about 50% according to tests. The results from various work-ups lead to a major surgery on his bladder and kidneys in September. We also began a catheterizing program for his bladder via a mitrofanoff. Unfortunately as we write this blog the program (every 2 hours) is not working as they planned and we may be discussing more major surgery. More on this issue coming in an upcoming update. Fortunately, Elias on the outside is not reflecting the turmoil on the inside, as is typical with him and we are so thankful for that.

We placed the first part of the post earlier this year for Elias' BAHA processor. He was becoming so sensory in a negative way with the softband he was refusing to wear it. There has been a healing period required and our follow-up last week with ENT on this was very positive. Everything has healed nicely and we are hoping to place the second part of the post during Elias' next round in the operating room coming up very soon. Once placed it will be capped for 2-3 weeks and then we will be set to go with him wearing the processor. We have been warned that there will be an adjustment period and he is likely to be sensitive. This also doesn't mean Elias will "hear" as we do. We will resume the listening therapy and hope to see great strides over the next several years. We are excited and anxious for this chapter to begin.

Elias' communication overall has really flourished this year. His receptive language vocabulary has grown tremendously and he is using a combination of sign language, gestures and augmentative communication via the iPad to communicate his wants and needs. He has also learned how to tell us when he is NOT happy, in other words, typical toddler. His overall development despite all the medical issues this year has been amazing. He is so determined and it is so inspiring to watch him conquer challenges. The child never gives up!

We also had to change the type of trach tube Elias was using due to hyperventilation issues when on the vent. Unfortunately this was something the ENT/Pulmonary doctors really did not want to do because of the tenuous nature of Elias' airway. It took them some time but found one that they felt comfortable with that wouldn't compromise or hurt his airway. It works beautifully and he has responded well it. Sadly we learned a week after the switch the company will no longer be in business. So back to the drawing board for the doctors and at this time we are still waiting for a solution to be decided.

Elias also got to take another big adventure. Last year we "broke the rules" and took him to the zoo. This year we had the opportunity to take Elias to Florida for Katharine's Grandparents 50th wedding anniversary.  They have been so loving and active in Elias' life. They have visited us many time from Florida to see Nana's little "Rocky." It was a complete surprise for her Nana and Papa for us to be there. It took quite a bit of coordination and unfortunately Elias had some minor medical issues, but it was totally worth being there for such a memorable event. We received cautious blessings from Elias' medical team on the condition that we had every hospital mapped out on the route, and a plan that he would be airlifted back to Children's if there were any medical emergencies. Thankfully we only had the small manageable issues. It did remind us however why we minimize outings. If ever there was an event that the rules were meant to be broken, this was certainly it though. Sadly Katharine's grandfather passed away November 30th so it made the trip in retrospect that much more meaningful. Elias had a great time, especially the drive to and from. Many family members got to meet the little man for the first time. It was a beautiful event and adventure for Elias! We are so glad we were able to make it happen.


Possibly the most heart-warming and touching story of our year was the Home for Elias Campaign. Upon moving here we had been renting a house and the owner was ready to sell. We were in no position to buy and the prospects for a new place that would provide Elias a safe and healthy home environment was surprisingly and disappointingly difficult. Family and friends stepped in to raise money for this cause. A very kind and generous soul, who wishes to remain anonymous came forward and offered us a 10 year mortgage to keep Elias in the home where he has grown up and thrived. Obviously 10 year is a brief mortgage period so there have been offers from friends, family and supporters to hold future benefit fundraisers for Elias to help offset medical expenses, and to help pay the home off. Two family friends, Stace and Jessica have set up a Facebook group called Hope for Elias that they maintain and moderate to help keep everyone informed. They also recently set up a donation link there as well. Please take a visit, like the group (if you haven't already) and join us in thanking these beautiful ladies for taking their time to help our family and maintaining the group. We certainly appreciate what they do.

 
We are pleased to have survived the pressures and challenges that 2012 threw at us. We are anxious to put this year behind us and are hoping for a much simpler and calmer 2013. There will be issues and challenges to overcome, don't underestimate that, but hopefully not with the magnitude and speed as they appeared in 2012. Thank you all again for all of the thoughtful words, prayers and support. Have a safe, happy and prosperous new year!

Urology and Kidney Follow-up

FINALLY got a plan from Urology after family relations lit another fire today. It has been 3 weeks with no communication of a plan a one week without a call after involving family relations. That is good news. The plan itself however is not good news. Elias bladder will need to be re-evaluated, but it can not be done until a few days before Christmas. There are several fears (their words) from their prospective on why the cathing is not working as it should. We prefer to call them theories. Essentially because Elias is unable to eat by mouth and his diet consist of so much liquid it is possible his bladder is just not able to control the pressures and amount of urine produced and we can not keep up no matter how frequently we catheterize him. The other is that his kidneys are unable to concentrate fluids effectively (due to the damage) effectively causing more urine to be made unnecessarily. This leads to fluid loss naturally that makes it difficult to maintain proper hydration. We do have challenges with that and have for years. Two medications are being prescribed in the hopes that they provide either relief to get us to the end of December or assists in making things function in a more expected fashion. One concern with using 1 of the medicines is that it can create issues with his trach and secretion management, cause it to plug off where he wouldn't be able to breathe (it would never get to that point, but ignored it could). So we will be using very low dosing that may not even be effective. Prayers that the medicine does the job, even if only temporarily reducing the amount of potential damage to the kidneys. Also that the further testing just before Christmas yields enough for a clear and positive plan and outcome. Thank you all for your continued support, thoughts and prayers.

Video: playing with Mater

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Elias was having fun playing with his Mater balloon he got while in the hospital.sorry it ended up sideways. Not sure why the camera didn't rotate the picture?

Phase 2: Urology & Kidney Surgery

Elias had phase 2 of the urology and kidney surgery Wednesday. We now have a functioning mitrofanoff which we are having to catheterize every two hours to drain his bladder. Over the next few months we will be able to stretch the intervals progressively up to 4 hours. The process is fairly simple overall, just mentally adverse, especially to Dad. We are actually finding that due to the small size of everything Elias has we are doing the catheterizing at times every hour and a half instead. This frequency is pretty demanding, but we hope as we get more comfortable with the process it will seem less daunting. That has been the case with many of the medical skills we have had to learn for his care.

Elias himself is doing well, very well. He is happy not to have the leg bags for the drainage tubes anymore. We are down to one drainage tube left in, but during the daytime it is capped off and only used overnight. So with less tape, no straps and bags, and fewer tubes he feels more free and loving it! Our biggest stress at the moment has been having enough supplies to last until our initial supply order arrives. The Urology team seemed very unorganized with this and it will be mid- next week before the initial delivery will arrive. While we received some supplies to come home with they did a poor job evaluating what we would need. Overall our experience with the Urology team has been less than stellar. Not even Mediocre. Outside of his primary Urologist, who has always done us well treating Elias, but the overall team has left a lot to be desired. Very poor communication has been the stem of many issues, some of which is caused by Elias being ventilator dependent and restrictions on where he must be bedded inpatient, but those should be accounted for and understood it will take more effort to handle being outside the normal unit. We believe we have the supply issue sorted somewhat, but it has created a lot of stress unnecessarily. It is stressful enough today trying to create a comfort level with the new procedures and schedule. We also had to spend time training Elias' day shift nurse how to cath him. She was suppose to be allowed to come up to the hospital to receive training as we did because no one in the agency education area was able to teach her. They were simply going to "Google it" and give her papers. His Urology doctor said that was unacceptable and we agreed. The agency told our nurse to contact them the day prior to the training, which our nurse did. The agency did not return her phone call. The nurse called a second time and was told the person she needed to speak with was on the other line and to leave a voicemail to be called back when she was done. The nurse did as instructed, still no return call. We were not surprised by this sadly. To us it only shows that they will say anything to placate you, which is a major pet peeve to us, then ignore you hoping the request or issue will go away. It also shows that the agency, or this franchise of it I should say, has no regard for overall patient care by not being proactive in ensuring there was proper training for a skill nurses caring for Elias would need. Then again they have done such a fine job finding nurses to work at all (sarcasm).

We continue to hope that catheterizing him will ultimately be proven to only be a temporary necessity. In about three months we may repeat the uro-dynamics study via the mitrofanoff to determine if bladder pressures are contributing to his kidney damage. This has been by far the most intense and overwhelming chapter for us in his journey. That says a lot considering all the various things Elias has been through. We know we will get there with comfort as with everything else we have learned, but in retrospect we felt like things would get less complicated. It has been quite the opposite. Despite all of this Elias has continued to fight and thrive and we have fed off that energy to overcome our fears and inhibitions too. We are happy to be moving forward and hope to getting on with the next phase. Thank you all for your continued showing of support through thoughts, prayers and comments. We appreciate everyone and their role in our lives and all that each of you do.

We will keep you updated as we can with Elias! Thanks for reading and checking in on our little man.

Look who is walking

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First day in over a month since the surgery. Finally felt strong enough today and didn't do half bad with all the tubes and leg bags. Way to go Elias! Mommy and Daddy are proud of you and your courage.

Home again, finally

Elias is finally home from the hospital. We actually came home Wednesday night after being told several times yes and no to discharge. Elias had a very low heart rate that the doctors feel was caused by the medication he was on. Ultimately they decided it was safe to go home with a follow up EKG next week. They are trying to decipher if this is medication related or yet another new issue. The consensus is medication related so we will hope they are right.

Since the last update Elias became septic with a serious infection in his urinary tract. Those who follow us on Facebook know about this but for the benefit of our readers we will recap. He became septic very quickly, in the span of just 2 hours. The doctors were very concerned and a great many teams were involved in the process. As we mentioned above the cultures tested positive for a serious infection in the urinary tract. Having indwelling catheters for drainage are the likely contributors and cause. The big concern was that this did not find its way in his blood. That would have made things critical. Thankfully we have a hold on it treating him with IV antibiotics around the clock here at home.

The recovery time is going to be much slower than we had hoped. Elias is unable to stand at all as well. Until yesterday he wasn't able to sit up for long periods. He ia doing better with that now so we suspect standing will come soon. The post surgical care is more intense than we were led to believe as well. It is the most difficult times of the day. He is in obvious discomfort and becomes extremely agitated. Nights are pretty bad as well. He just can not get comfortable enough to sleep. We continue this regiment caring for the drainage tubes until the end of October. We then return where 1 will be removed but the other stays in place for 2-4 more weeks while we begin the catheterizing and work it towards a specified goal. So it looks like he will have a drain tube until around Thanksgiving. UGH! We were told that initially we will be catheterizing his mitroffanoff every 2 hours around the clock until they feel things are clearing based on volume. We then move to increments of every 3 then 4 hours. Hopefully after the new year we can evaluate effectively if this is something we will have to continue permanently or of it will be temporary.

Overall this has been a very difficult and trying chapter. The outpatient urology team failed to paint a realist picture on what to expect both during the hospital recovery as well as at home. The intensity of care was also a shock. Adding the sepsis on top has really made the days very full. Elias is still very weak which is unlike him and at times it frustrated him. Not having any real way to explain and communicate to him what and why this is happening is difficult. It adds an extra layer of frustration and stress on us all. Just going near the drain tube causes him to anticipate pain and begin to cry. Another out of character response for him. So you know that it must be very uncomfortable to him. We are happy to be moving forward with this now and hope he finds comfort soon.

Thank you all for your thoughts prayers and concerns. We are so appreciative of your support. We have some comments and emails still to answer and as soon as we are able those of you who have done so will be getting our response. We also have a great deal of thank you notes to write for the efforts with our home. This is a very informal thank you and we hope to have the time to get the proper thank you out soon. We just wanted everyone to know how grateful and blessed we feel with all of that. This surgery coming right on the heels of that was difficult but seeing Elias smile when we walked through the front door was priceless. This is the home he knows and loves. It will be very helpful in his recovery process too. So from the bottom of our hearts thanks you all for what we have accomplished with this so far.

Day 7 video

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We are still in ICU but hope to move later today or tomorrow. Yesterday was rough for Elias with discomfort but today seems better as the video shows. There is still some pain and discomfort mostly from bladder spasms which are random. He is still on a good bit of pain medication but off the sedation. We still have about 2 weeks before we can even think about going home but the smiles today have helped end this long and at times frustrating first week.