Surgery, MRI, & Good News

 

 

 

We left for the hospital this morning just before 5am amidst snowy and very cold wind chill temperatures. Elias' pre-op report time was 6am After a long day at the hospital yesterday for IVIG we were still a little groggy and not really feeling the long day ahead. Fortunately for us the snow was light and the roads were fine. A good beginning to a good day. 

 

 

Today's O.R. time was the least complicated we believe Elias has ever had. Today he would be out under general anesthesia for dental screening cleaning and oral cancer screening, quite common among Fanconi Anemia patients. While under he would also have another MRI to screen for more seizure evidence. All in all minimally invasive, but with Elias anytime he goes under anesthesia it is a risk, for several reasons and keeps his doctors and us on edge. Elias did great and woke up quickly in recovery. Which was a good thing since we had another appointment following the surgery. Yes we pack it in don't we! The dentist was please with what he saw. Elias teeth are healthy and strong despite not being able to take any food or drink by mouth. There was no cavities or decaying either. Because of his NPO status he had quite a build up on his teeth, but that was all cleaned away and Elias' pearly whites are gleaming. We were happy to hear the things the dentist did not see, no cancerous looking spots. Head and Neck cancers which include the mouth are highly prevalent. They complimented us on how well his teeth have been cared for. In fact they noted that Elias presents older based in his teeth structure. Elias ahead of the curve on something? That was a rare gem to hear.

 

The was Neurologist happy with Elias' development and activity. We spent a good portion of the appointment discussing the things he is doing. MRI showed no evidence of seizures (again). The white spot they have been monitoring looks the same. They suspect that it may just be scarring but they are continuing to watch that it may not be a tumor. Not growing in size and possibly even appearing smaller has them leaning more towards the scarring. She did tell us about a gland that was in the wrong position, and while it has nothing to do with seizures, she would like to watch as he gets bigger, how it functions. So there always has to be something new added to the mix. We also discussed his increased care needs with the potential risk of seizure increasing while asleep. We discussed the situation about the lack of overnight nursing coverage. She agreed to write letters of support for any advocacy we embark. Just to catch everyone up on the nursing, we are down to 1 night per week and every other weekend, however the nurse has shown up just half the time so she isn't reliable. We got the info we needed from Neurology and the strong advocating will commence.

All in all very good news today. Elias is home and recovering well from the grogginess of anesthesia. Our wonderful daytime nurse, who we and Elias love to death offered to work tonight for us since she was "off" today with Elias in surgery so that we can get some much needed sleep. We told her she didn't have to do that, but she insisted. We are thankful for that and will gladly take her up on the rare opportunity to sleep. Especially after the last two long days at the hospital. Thank you all for your support, thoughts and prayers. They help make a rocky road less bumpy. We are thankful for the positive news and progress today brought as we continue to watch Elias thrive and exceed doctors expectations.

 

It Has Been A While

From Halloween 2010

Halloween 2010

Elias took advantage of Halloween to give Daddy a scare. He had been having an off day yesterday. He seemed more tired than usual and a bit moody, so we were already more watchful. While napping his head began to shake and his eyebrows moved up and down rapidly. Within seconds his head was shaking faster. Initially my heart sank, another seizure. I quickly began trying to wake him, with a single toggle his eyes opened I put my hands on his shaking head and it stopped. Thank God. Had it been a seizure it would have kept going. He did seem to have a bit of a headache so we gave some Tylenol. He began to feel a little better shortly afterward. We were thankful it wasn't another seizure and feel like he was feeling a really bad headache or migraine in his sleep. The head shaking was just him trying to soothe himself some. Unfortunately, headaches and migraines have become increasingly common. They are a side effect of his IVIG as well as a new normal, as we are told with the seizure problem. Neurology told us two things in his last visit with them. First, he is more prone to have seizures when he is asleep and potentially when sick. Second, we need to lower our threshold on giving Tylenol. Since Elias is non-verbal, while his communication has improved headaches are often disguised and difficult to read. We are all getting better learning the subtle cues. It is a process that we are constantly making progress. Needless to say there was no dress-up or trick or treating for Elias. We had not planned on the trick or treating anyway. First, he can't be out that much and second he can't eat by mouth anyway. Finally, being non-verbal and not hearing he has no understanding of what the heck holidays are anyway. Last year we sat outside for about 15 minutes with him so he could see the other kids dressed up. He didn't seem to care too much, hahaha. Just FYI he still fits in his Halloween costume from last year!


It has been so long since we have been able to update. It just seems to be getting more and more difficult. Time has been a premium and we have been in a survival mode with the loss of night nursing over the past few months. We have had to juggle staying up all night and then struggle not being able to sleep with appointments and therapy during the day. After 7 weeks we finally have some coverage, but staffing continues to be a problem and seemingly impossible for the agency. Unfortunately there is no alternative, they are still the only agency accepting vent patients. Our advocacy woes with them continue and their incompetence shows daily, but what can we do? We have caught them yet again in an outright lie about how diligently they are working on the case, but they don't care and there is nothing we can do. Unfortunately Elias care needs have intensified overnight and is much more critical with the seizure risk protocol. These are the doctors words, not ours and we are working with her to try and enlist her help in pressuring the agency over Elias safety. We have to try, but not expecting it to work. They have a mind set and it has not swayed in the almost 2 years we have been with them. The excuses are the same, yet there is no action on their part in an attempt to change and improve the issue. Instead they are content with being passive and using the same excuses repeatedly, yet contradicting themselves by telling parents 'we don't hire nurses unless they can work nights and weekends.' If this were true then we do not understand how there can be a problem staffing weekends and nights. The nurses that are working here have never been told they "HAVE" to work weekends, they were given a choice. When they said no, the agency did not push. They simply said 'okay.'  I'm going to stop there I don't want to get into a rant. Just know it is growing tiresome and it is frustrating knowing you are helpless to change the situation and at the mercy of a failing system. We are not the only family like this. We know countless families in and out of the area experiencing similar issues. While that makes us feel a little better knowing it is not just us demanding too much, it is sad that no one is raising a red flag for such a widespread issue.

Preschool - the past two months have, as expected been a learning experience. As we mentioned in the
previous paragraph and post with the look of our calendar the schedule is packed! We knew it would be busy and it hasn't disappointed. It would be more manageable if we were up 24 - 36 hours at a time. We have managed quite well all things considered. A lot of daily chores and cleaning has been sacrificed, focusing on the priorities, but that is what you have to do when you face challenges. The biggest issue has been scheduling. They all want to come at the same time or limit the days they can come. Again we are working through this and are making progress. We have definitely learned a few things that we will be asking to avoid next year and will fight to write it in his IEP next year. The biggest issue is the co-treats. While these are effective periodically between 2 disciplines, every time is over kill and ineffective. OT & PT especially. They often are competing for Elias attention when they both are here. They each have very different focuses and while they claim to do this often it is not working for Elias. He ends up running away from them and standing in a corner. It stresses him out a bit and very overwhelming to have someone work with you and then suddenly another person pops in the picture trying to make you do something different. You can see it in his face. We have addressed this and they disagree with our assessment. A few weeks ago the PT was forced to come out alone and she commented how engaging,  productive, and focused Elias was. We took that opportunity to stress our point again, but it was brushed aside it seems. The argument we are presenting now is that he is approved to have two 45 minute sessions of each, PT and OT. By co-treating he is being cheated out of time, given that each of them is battling for his attention. It is comical to watch, but the reality is it is not effective. We can't believe that no other parent has ever brought this up. He is only getting 90 minute session with both simultaneously with the focus is back and forth. Not the 180 (45 x 4) That is not giving him the time he needs, or any patient for that matter. He is likely not going to reach his goals on his IEP due to this and while it is a set back for Elias, it just may help strengthen our advocating point.

Elias development overall has been incredible. His communication is constantly improving, expanding and evolving. Gesturing and him physically taking us to an item he is requesting has become a knew favorite form of communication. Just like we use different methods to request things, he too is learning to choose from the various tools - picture exchange, gestures, signing - for what he wants. It is amazing to watch. His joint attention is also becoming more purposeful. We are beginning to work on getting him to understand that we also need to have the ability to decide when something is all done or finished. Not an easy task when you have no ability to explain why you need to stop and activity. He simply sees it as done. Impressively he has grasped the concept surprisingly well given that barrier. He reacts appropriately with mild tantrums or displays of displeasure consistent with a 'typical child'. His independent play has never been  a problem, and we are seeing continued growth in this area as well. Baby is a word he says quite often and he also says something that resembles bubbles. Bubbles of course being one of his favorite activities and one of the most motivating tools we have in teaching.  His saying these two words along with many sounds (ah, a, b, ch, du, da, eg, j ,la, lu, m) tells us that the listening therapy (Aural Rehab) is now showing dividends. We have some recordings that we are trying to put together to post. We have been doing AR for over a year and a half and the progress has been questioned more by the providers than us, but it has been reminded that this is going to be a slow long process. Once we all focus back on that point and see these things, most of which he has just started in the past few weeks it is reassuring and promising. It may take five years but if we continue to do the things we do and work fervently there is hope he will hear and even verbalize. That is truly a blessing and melts away the stress, mental and physical exhaustion. Elias continues to make us proud and thrive beyond expectations his medical limitations should have. There is a great deal more that we could share, as so much has been going on. These have been the key points. As always we keep on pushing. Thanks for your patience, your thoughts, and your prayers.

This Weeks Recap

It has been another busy week here. Tons of appointments in 3 days at Children's Hospital. On Monday we had to head into the FA Clinic for an unplanned visit because of Elias' central line. We noticed on Sunday night while changing the cap and dressing that there was some blood buildup (the beginning of a clot) just below the cap. This is very dangerous as a clot or air bubble in the line would travel directly into Elias' heart. Fortunately it was a  "simple fix." All things considered that is. We pushed some "super heparin" in the line to break the clot up. It sat in the line overnight and was withdrawn the next morning. The clot cleared and everyone was happy, breathing a sigh of relief. We need to ensure when we are inpatient and receiving medications through his line that the flushing is done in a pulsing fashion, rather than conservatively. Plus per protocol anytime they flush the line they draw back and pull "waste" blood to ensure the line integrity is functioning properly. Not a big deal, lesson learned and we will know to address this next time to prevent a repeat issue.

Tuesday morning we had a follow-up with Neurology. She was very pleased with the way Elias looked and acted in addition to the way he responded to her reflex tests. All positive signs that there was no lingering effects or damage to the brain from the latest seizure. We discussed the raising of dosage on the Keppra (seizure medication) and the rescue drugs. We also set a new threshold for when to call 911 for transport and admission. The goal is to obviously not be admitted every time he has a seizure. Hopefully the increased Keppra will prevent them, but should he have one the Versed (rescue med) should stop the seizure within a few minutes. Any seizure over 5 minutes will warrant a 911 call. The real question still remains, why? As with the breathing episodes, we may never know the answer. We are going to be seeing neurology much more frequently going forward, even without seizure activity to monitor him.

One bit of- we call it bad news but it really is what it is- in clinic they weighed Elias and he has lost weight :-( He was down to 8.1 kg from 8.4 kg which for those of us in America means he dropped under 18 pounds again. We are thinking it is from increased activity and mobility. He simply burning calories like mad. We are working on trying to get GI back on track with managing his feeds so that he can GROW! This is something that all his doctors keep saying will hopefully improve some of the ongoing problems, especially the airway. This is one of the issues associated with Fanconi Anemia, small stature, but Elias is even small by those standards. Our little joke has always been, Elias is not small he is fun size!

This week Elias also dove into his full preschool schedule here at home. As suspected things are going to be intensely active and busy. With the newest issue in the seizures that is only increasing the appointment load. After this week and finally meeting with all his teachers and therapist we are beginning to wonder if we should not have waited as we originally intended. We are having some issues with scheduling. Everyone seems to want to come on Tuesdays. We have 12 therapist between school and outside services to try and work in around appointments. It took some serious negotiating and rational arguments to attempt to gain some flexibility from everyone, but we are hoping things will begin to work out and settle in. The preschool teacher was wondering why she was part of the team this year. Not that she doesn't want to work with him, but where he is developmentally is making it challenging for her. Fortunately we do not have any specific IEP goals with her, but we agreed if we needed to cut back in anyway due to overload she would be a first to go this year. We are still positive but are really going to have to watch for contradicting methods and strategies between the services. We do not think many of the school therapist realized the intensity of the duplicating services. Which typically would have separate goals due to limitations on the school therapies focus to education based only. This year much of that has been removed to get him caught up, which was why we had the outside services and had planned on waiting a year. We will need those outside services in future years though to cover all Elias' needs. To cut them now would put him at risk of not being able to regain them later. It is a vicious circle that we knew from the beginning was going to be hectic and maybe even a bit frustrating. We have faced similar problems before and have always worked through them and this will be no different.

On the home front, Elias has been having fun. His infatuation with bubbles has become an obsession. He LOVES bubbles and wants them constantly. One really awesome effect is that he is trying to say bubble. Further proof the listening therapies are slowly but surely working. He says "buba" when he looks at them in the container we keep them in or when he grabs the bubble card to communicate. He has really been focused on gestural communication. He is getting quite effective with this method as well. He is really proving to everyone how bright he is, but his stubbornness is making progress a little slow building his "vocabulary" or repertoire of words with pictures, signs, and actions. Looking back on the last nine months Elias truly has come quite a long way though. We are proud of his progress and hard work.

Many of you have been asking about us and how we are doing? The past several months have been among the most stressful we have encountered so far in our journey. It has been physically exhausting and mentally draining. We manage as always, but sometimes we look back and ask ourselves, how did we do that? It is amazing how driven we can be when it comes to him. Sometimes we feel his smiles and laughter are an alternative energy source in itself and that is okay by us. It is completely amazing what you can do when necessary. As always we appreciate all the thoughts and prayers for our family and especially for Elias! He is a special little man and continues to capture hearts. We are very thankful for all of you and for everyday with him.

Settling In (again)

I am quite tired as I write this, so I apologize in advance if it is less than coherent. We have been settling in (again) and adjusting to some new routines. Elias' Neurologist felt that raising the doses on his seizure med - Keppra and his rescue drugs might help the prolonged seizures from happening. That will also keep us out of the hospital each time one occurs. There are still no obvious answers as to why these are happening and even more interestingly, why now? What is really frightening and frustrating about these are the fact that this second seizure started in the middle of the night, while Elias was asleep. None of his monitors for various vitals were ever triggered, so it is something that has to be watched for closely. It adds a new dynamic to his awake and alert care needs at night. So basically, this past week has proven that seizures are now an addition to the already long list of diagnosis and issues. It is frustrating and stressful to say the least.

Elias has been happy to be home and doing well. It always amazes us how far behind we get when he is hospitalized. We were just getting caught up from the admission a month ago. Katharine and I have been pretty tired and even borderline ill, mostly allergies we think/hope. Sleep deprivation is also among the issues we are battling, but we are working on getting that under control. Surely that is also contributing to the way we feel.

We will hit the ground running next week beginning with a neurology follow up from this hospitalization. We also have several other appointments on deck this week, including Elias' pre-school activities here are home. There is rarely a break in the action. Once again we can not convey enough our appreciation for the support, thoughts and prayers from each of you.

Neurology & Endocrine Follow Ups

We had been holding off on an update to get results from a few things, but it appears they are taking longer than expected to complete. So we will update on what we have from the follow-up visits last week. We conveyed our observations and concerns over the possible side-effects Elias has been exhibiting from the Keppra, his anti-seizure medication. Neurology agreed that these were likely linked and have added vitamin B-6 twice a day to his medication regiment. There has been some success with counter-balancing the Keppra with this vitamin. It is something we have to crush to be able to give via G-tube, so there is a small process to prepare it. So far it hasn't been too bad and our biggest worry was clogging, but it seems we are crushing it fine enough. We also changed the emergency medication and protocol for if he actually has a seizure again. We will be giving Midazolam. After we draw it up from the vial we will remove the needle and actually push the medicine into the buckle of his mouth - pocket between the gum and cheek. This will allow for quicker absorption into the blood stream. We are also going to give this the next time Elias spontaneously stops breathing to test if the clusters continue or we isolate the behavior. This will help to figure out is that issue is seizure related as pulmonary suspects. The biggest surprise from the appointment was to hear that his neurologist still feels strongly that Elias had meningitis despite the very well reasoned logic from Infectious Disease (ID). To recap, ID felt that Elias recovery time alone was too brief, there were no signs or symptoms prior to the seizure, and a seizure is not the initial presentation of meningitis. Furthermore looking more in depth at his blood work, there were not any of the other tells you typically see. Impressively his Neurologist brought up the point that Elias is far from normal when it comes to lab work, symptoms, and recovery. This makes for a very strong argument against ID's thoughts. Flashback to July 2008 when the tracheostomy and G-tube was placed. Elias was just a bit off, and it was a Mother's intuition nothing physical that made Katharine press the doctors to run tests the night before the surgery. His blood work showed no signals and his physical exams were fine as well. We found out that Elias had full blown pneumonia that went undetected because there were not any "typical symptoms." Elias had to battle for his life after crashing on the operating table. So what does all that mean....well medically, nothing. It means we don't truly have an answer and must proceed as seizures are a new problem that will strike randomly. It also reminds us and deepens the vigilance we use becoming concerned at the smallest of changes. In you or I it would present much stronger, in Elias it may appear business as usual. All-in-All we will simply keep doing what we have been doing, successfully. Before this we had kept Elias out of the hospital for an illness since April 2010, when he had a MRSA blood infection. That includes 2 winter seasons unhospitalized (ie; cold/flu/rsv hell) for a trached child that is amazing, as the doctors reminded us.
We are still awaiting the endocrinology results in reference to the possible adrenal insufficiency or dissolved regulatory response. This may mean another medication daily, a steroid instead of the stress dosing we are set-up with now. We are also going to be checking his blood sugars a few times a week for 4-6 weeks just to make sure things are working as they should. They do not feel this is an issue, but this will make them more comfortable in evaluating the big picture from an endocrine stand point.

We are beginning to see Elias level out a bit and regain some of his energy that has been difficult to watch. He has had a good week overall with the amount of time he will play and how he has felt. Part of it is adjusting and let's face it Elias was very sick so recovery will take time. The doctors did a wonderful job disguising the seriousness of things while he was admitted - giving it due attention mind you, but keeping our stress down and concern level low. However, now that he has improved they have not been shy telling us how very concerned they were and sick he was. Dr. Mehta, his bone marrow/FA specialist commented to us in clinic she has no idea how we handle it, but she is glad that we manage somehow for Elias sake. That is just it, it is for Elias' sake. She also reinforced how challenging and unique he is medically on all fronts. We appreciated the compliment and vote of confidence, which several of his doctors have made over the years. We told her that it helps to have great doctors caring for him and talented enough to handle his challenges and be pragmatic with his plans. They have provided us with the tools and we have embraced them. Without them, along with supportive family and friends we would not be half as strong as we are. It serves as yet another reassurance that we made the best decision coming here for his care and reminds us that he has some of the top doctors in the world - for their fields - working with him. We couldn't ask for more. Thank you for the continued prayers, support, and uplifting motivation. As I posted on Facebook this morning, "Tomorrow will be a better day because we are privileged to be granted the opportunity."

Stretch to Home

Elias playing with his Kermit shortly after we arrived home

Thankfully Elias is home! We came home yesterday evening, but it almost did not happen. The IV antibiotics which Elias had been on to treat him is high in toxicity. Trough levels drawn on Monday morning were above his peak. The plan had been to send us home on the IV drugs as Elias has the central line and we have been trained to administer via this route. The problem with the high levels meant the would need to check them prior to each dose, which essentially would mean that we would have to sit in the hospital for 7-10 days while the course continued. Fortunately for us Elias primary care physician - which is a paper pusher for him essentially - refused to manage the follow-up care for home IV antibiotics. After all he has only seen Elias twice ever and the last time was April 2010. This brought the infectious disease team into the picture. They would be the ones to manage his home IV therapy, which is odd because we never had that problem or need before, but it actually proved to our benefit so we are not complaining. They came in and did a very intensive interview and review of Elias' medical history (it took awhile as you can imagine). There recommendations were rather eye-opening and opens up a whole new set of issues. They felt that Elias was recovered enough to no longer need the IV antibiotics. With that in mind, while meningitis was the only revealing result of the tests, the fact that he had recovered so quickly and there were no other symptoms prior to the seizure leads them to doubt that this was a true meningitis. They can not say for certain, but the factors are not consistent enough. That opened the door to come home since Elias was at his baseline. Should Elias present any symptoms then it should be treated as a new case and start over. This justified medically his discharge. Why this opens up new issues is now we have to continue to treat and be concerned about future seizures. With a confirmed undeniable meningitis that would be enough to cause the seizure and make the doctors feel confident it was isolated. Now that is not so clear. So we come home with new concerns, new worries, more medicine and new protocols along with more emergency procedures. It is just another phase that we can hopefully rule out with some follow-up. We have dealt with new worries and concerns many times before and have always overcome the fears and Elias has always been amazing with recovering.

One thing we have learned about Elias is that he has this ability to bring out the best in people, particularly us. We are constantly amazed at how much we can handle, but simply looking into his eyes and witnessing that smile provides incredible strength. It may not be an easy road and often we wonder can we continue or how we can continue, but his strength and determination is brilliant and motivates us. We have several follow-up appointments coming up very soon so we should have some more updates on this scenario soon. Right now we are trying to get back into the swing of things here at home and enjoying time as a family. Thank you all again for the support and prayers, they certainly were answered.

A New Problem or One Solved?

We are trained to handle many emergency scenarios with Elias. We have had to save his life repeatedly over the past 2 years as he stopped breathing, but nothing had prepared us for today. We experienced a fear and sense of helplessness that words just can not adequately express. This was the scene outside our door at 1:18pm yesterday afternoon. One we never thought we would need and hope to never again. Elias had to be rushed to the hospital via ambulance.
As we updated earlier this week he has been having another round of breathing issues. Overnight we had to put him on oxygen and the vent was breathing for him. Through the morning he had periodic spells and we dealt with them as we always do. Shortly before 1pm he stopped breathing again. Katharine was bagging him and we had oxygen on. After nearly 2 min he still wasn't breathing on his own. We decided to move him back upstairs to place him back on the ventilator. We placed him in the bed and had the oxygen and ventilator in place when we noticed that Elias was looking off with his eyes to the right. He was unresponsive to touch or hands in front of eyes. Then he began to shake and shiver all over his body, eyes still not moving. The shivering became worse and we knew what was happen, even though it had never happened before. Elias was have a full blown seizure. We called 911 and requested a squad. Elias worsened as we waited for the ambulance to arrive. Our concern grew into a bit of panic. We were watching him slip away. We were frightened beyond belief. Once Elias was moved downstairs and loaded on the ambulance they raced him to Children's Hospital. As the driver told me, don't worry we will get him there loud and fast. Katharine rode with them while I finished gathering his equipment.

Once in the ED he was taken to the trauma bay. He was continuing to seize and had not stopped. It is estimated that the seizure lasted roughly 45 minutes. While the doctors can not be certain about possible brain damage, the trach and our ability to keep him oxygenated may have saved him, not only his life, but the brain damage or at least minimize it. Sadly it is too early to tell for certain. Only time will tell us what if any is there. One positive is his reactions when they touch and pull on key points of his body. Within 50 minutes he was having a brain CT and we were rolling into the Intensive Care Unit. Initially his glucose levels were 300+ in the ambulance and had risen to over 500 in the ED. The glucose in the PICU was trending down to about 300. Seizures will cause glucose to rise, but not like that. So endocrinology moved up the ranks of priority. It was so nice to see Dr Rose walk in who is one of the most active researchers and knowledgeable endocrinologist when it comes to Fanconi Anemia. She assured us that given known FA patients glucose and insulin regulatory issues it was indeed possible that the 500 reading was all caused by the seizure. They would follow up on this, but in a day or two when he was less medicated and more stable. It is another example of the unique and pragmatic tendencies little known and understood issues within FA create problems for medical professionals who do not know about this rare disease. At least for now we can focus and worry less about that problem. The PICU team has been great and immediately sprang into action with contacting and consulting many of Elias primary specialist. Several of which personally came into evaluate him. Often times the politics and egos of the hospital interfere with that, but given the circumstances and the mystery it has been extremely reassuring thus far that all the folks that know Elias the best are on this. It makes us feel so much more confident about his chances. Right now Elias has every culture and blood test known to medicine that could remotely apply being done, including cultures. A lumbar puncture was done to test for meningitis which he is already receiving proactive antibiotics to treat should that come up positive. He is also receiving a wide spectrum of antibiotics to treat any potential infection that may have gone undetected and cause this issue. They also have an EEG hooked up that will run for sometimes. He is of course on the ventilator and it has been back and forth on the vent breathing totally for him. His settings are higher than normal and he is struggling a bit with CO2 issues. For the lumbar puncture they had to sedate him so as of now at least Elias is out. There still is a lot of uncertainty mainly is this a new problem and concern to add to the list or is this the result of the breathing issues that have evaded us? Too early to tell and Elias certainly has an uphill battle the next 24 hours and not out of the woods yet.

We are exhausted and emotionally drained. Thank you to everyone on facebook for your absolutely amazing outpouring of support and prayers. It is so amazing how many peoples lives Elias has touched. We are humbled and grateful to have such amazing family and friends. You all are the greatest and you all have helped us stay strong through this. We may put up a good front, but believe us the tears of fear have been flowing today more than ever. We will keep you updated as we can. We have no idea what is going to happen tomorrow, but we will continue to pray that Elias will pull through yet another tough battle.