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.

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.

Day 5 - Closer to Discharge

Elias continues to improve each day. He is behaving like himself and reacting appropriately to actions which is a reassurance that any brain damage is nonexistent or very limited. We have been very happy to see his rapid progress and the doctors have been surprised at the rate he has recovered. While the spinal fluid is still being tested preliminary results suggest that it is a viral meningitis that caused the seizure. They still have him on a broad spectrum of strong antibiotics to ensure they are covering every possible cause. It is likely we will never know the type and source of this. Elias has a MRI scheduled in the morning. We do not expect there to be anything significant to report and we are hoping with Elias improvement they will let us bring him home after the MRI clears him.

Showing us he is better!

One of the other interests of note brought about by this is a possible adrenal insufficiency. This is when the body does not produce adequate amounts of steroid hormones (chemicals produced by the body that regulate organ function), primarily cortisol. It has us thinking that possibly this could be contributing to Elias' breathing episodes as well. We are going to discuss this with his Pulmonologist. It is a long shot, but hey it is a lead right? Back to the insufficiency....They are doing a test in the morning that should clarify if this is indeed an issue. Elias' thyroid numbers have been creating some concern the past month or so and we had planned another check this week before all this occurred. It is possible they were pointing to this. Not that this was the cause, but for those who know Elias and followed us you know that he has a way of showing the doctors answers to questions they didn't even know they were looking for. It has been this way all his life. He is just so nonclinical in so many ways that events like these usually uncover underlying issues. Due to this Elias will likely be taking medication to help manage this. We are meeting with someone from endocrinology in the next day or so for training on stress dosing (recognizing the need for and evaluating). We are building quite the resume for training medical experiences. Elias will also be adding anti-seizure medication as well to his regiment even though they feel the seizure was caused by the meningitis and is not a source of a new issue. We will also be given some training on effectively managing him, but as they pointed out, we did a wonderful job of doing what we did despite not really knowing what to do in this case. It saved his life and maintained his quality of life.

Elias has been his usual come back kid self. We are so grateful for his will to fight and survive. This has been an experience that will impact us forever - in a positive way. Hopefully, it will clear up some other outstanding issues and we can move forward. We are diligently working towards identifying, resolving and stabilizing all of Elias medical complexities and challenges not only to improve these, but give him the best chance to survive his bone marrow transplant when that day finally arrives. His will and fight is already evident, but will his body be up to the test? We believe we are taking a huge step to help that and will continue to do so. Elias has some incredible doctors and they are going to provide him the best chances. They are looking out for him and that gives us confidence. Our faith has been tested time and time again, but we hold strong to it and look towards it to provide us with the solid foundation we need to be the best parents we can for this amazing little boy. Your support, thoughts and prayers have been nothing short of incredible these past few days especially. But we recognize and appreciate everyone of you everyday. It is not always easy, but somehow we always manage to find a way. You provide us the courage and confidence we need to face each day and tackle each new challenge for his sake. As they say..."it takes a village..." Thank you for being one of those villagers.

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.

Thanksgiving Blessings

Last night we were able to bring Elias home from the hospital. We were quite shocked to say the least, but were not going to argue either. We believe they realized there wasn’t much else they were going to be able to do there that couldn’t be done by us at home. At this point Elias just needs time to recover from the sheer amount of stress these two surgeries have inflicted. He is still in quite a bit of pain and this in tandem with his platelet and hemoglobin losses really has him very tired and weak. The photos are from last night after we got him settled here at home. He looks weak and you can see the weight he has lost over the past three weeks. Weight he could not afford to lose. He lost nearly a pound and a half! He has shown a few signs of life and improvement. He certainly recognizes he is at home and we hope that translates into quicker recovery. We did get positive news that his platelets had rebounded some, up to 102 from 88! That is a relief to be heading in the right direction after such concern being expressed by his bone marrow doctors. He is still on pain medicine and we need to work on getting him back to his typical feeding schedule. Right now we are doing slow continuous feeds around the clock for a few days before we attempt to modify that. All in all we are just happy to be under one roof together. It didn’t really matter where, but it is much sweeter being here at home. On this Thanksgiving Day we are thankful for many blessings. We hope that you and yours are able to appreciate your blessings. We ask that you remember other members of our FA Family. There are many who are in the hospital this day for Transplant, cancer treatment, as well as, struggles with issues related to Fanconi Anemia. Especially keep the Lytles in your prayers as their little boy Joshua is fighting for his life today. The doctors are struggling to even keep him comfortable. Let there be a miracle, please! There are also a few families that have recently loss their children to this terrible disease. We are thinking of those families as well. Thank you for all of the continued thoughts and prayers. We hope that each of you have a wonderful Thanksgiving.

Over the Weekend

We know everyone has been anxious to know how Elias has been doing. He is improving, but very slowly. He was moved out of ICU yesterday, so that is a good sign. He is still in a great deal of pain and he has needed pain meds and valium every 2 hours. He will not cuddle with his teddy or blankets and does not want to be touched in any fashion, even by us. He pushes us away, literally. It is very sad to see. Thankfully the meds are keeping him asleep most of the time so that he can rest somewhat comfortably and heal. Elias hemoglobin has also been dropping since his emergency surgery on Friday night. It was 6.9 this morning, so a blood transfusion was ordered. The cultures from Friday all came back negative, which is positive. There really isn’t an explanation for the spiking and falling fevers. The surgeons say that nothing was infected inside so those types of fevers are not something they would expect. He has not spiked since yesterday morning when he hit 102 and has gone down slowly since. We have also needed to keep him on oxygen since the surgery, not too much thankfully, only 28% to help his tired healing body. He also has taken a huge hit to his platelet count. Before surgery it was 200, today it is 90. Elias FA doctor came in to see him and she is concerned by that drop in conjunction with his hemoglobin drop. It is something she is going to be watching very closely. They do not appear to want to take action unless he continues to drop down to 50. We imagine a platelet transfusion might be in order at that point.

As for when the heck we might be able to get him out of here, we have not been able to get anyone to even discuss the next step, which after stabilizing should be feeding. No idea on when that will start or how long it will take once we begin. This has certainly been a much rougher road than we could have ever expected. We are holding up as well as can be expected. There is obviously some disappointment, but as we said before the important thing is that Elias is safe. We appreciate everyone’s thoughts, prayers and support.

Emergency Surgery

Elias is now in ICU recovering from his emergency surgery. To follow up on the previous update, he was taken for the CT scan at 9 pm. Once he was done he was rushed into the operating room for emergency surgery on his bowels. The CT scan confirmed the mass that has been around the incision and stomach was indeed a hernia of the bowels. At some point they slipped up in between the muscle and was protruding and pushing up on his skin. The surgeons came and spoke with us while they prepped the operating room. They had no idea what they were going to find until they cut him open. They told us they had no idea how long it would take and what action they ultimately decide on again until the saw for themselves the inside. The surgery took several hours and it was almost 1 am before they came out to tell us they were completed. Sadly the colostomy had to be put back in place. The anastomosis, which is the area where the two portions of colon were reconnected from the colostomy is simply too narrow to allow anything, including gas to flow normally. The safest option was to put the colostomy back. The bowel had indeed receded and pushed its way up and fortunately it was caught before any perforation or damage occurred. The positive side to this is the surgeon noticed a section further down the bowel that is wider that he can in the future try again to reverse the colostomy. This can be evaluated again as an option after 3-6 months of healing. Honestly, after all that has happened the past 2 weeks now is not even the time to think about that potential, though it was nice to hear the positive feedback.

It has been a very long, emotionally draining and frightening day. This was suppose to be something to improve his quality of life and we suppose it still can be, but for him to have gone through all this to ultimately walk back out with a colostomy in place covers a wide spectrum of feelings and concerns. We are still waiting for the cultures as well, but Elias is on a much broader set of antibiotics until the source of issue is narrowed. It is possible that all this bowel issue caused the high fevers. That would be great if it was. It is still unclear how long Elias will remain in the PICU. We will have a better idea in the morning. It is also unclear how much longer we will be in the hospital in general. At least 2-3 days for post-op antibiotics and the pending culture results. Despite all the frightening moments and serious concern coupled by the fact we went backwards by redoing the colostomy, the bottom line is Elias is safer and on a path to comfort. That is the most important piece that we carry away from this. It was more the way he has suffered the past two weeks that gives us what we know is unfounded guilt, yet we have it anyway. Thank you all so very much for your thoughts and prayers today. It has provided us with much needed strength and focus.

Waiting…What will tomorrow bring?

Not too much to bring everyone up to speed on. The past two days have been spent sitting here waiting for the distention in Elias stomach to subside. Today his stomach looks and feels softer, a positive sign. An x-ray was taken not too long ago and after they evaluate it a decision will be made if we should start the pedialyte again. It could be this afternoon or evening, or they may wait until morning. He tolerated the pedialyte just fine last attempt, so we are expecting the same this go around. It will be when the formula is introduced that we will become nervous. We are praying that this time the transition will be clear and we can begin to see light at the end of the tunnel for this admission. Thank you for all the continued support and prayers.

Morale Buster

Well the train derailed today. Dr Levitt was pretty hopeful the pedialyte could start yesterday. Typically an X-ray is done before the decision is made but he was confident that wasn't necessary. Believing that was our first mistake. At 12:30 yesterday afternoon the nurse paged the doctor to find out when we would begin the pedialyte. She was told they wouldn't be, but no one could give us a clear reason why. We began to wonder if there was another communication flow issue because Dr Levitt apparently had no knowledge of stool being passed on Friday. Oops! Then Elias began to run a fever and have high blood pressures. This along with his sleeping so much was concerning. The surgical resident, which is separate from Colorectal, but included as part of the communication hierarchy (got it?) was paged at around 430p. As our facebook friends know they never came...still. The Colorectal fellow (a different one today) came in and he has helped get everyone back in the same page of the same book. He has been very helpful and given fantastic explanations for almost everything. Despite the confident no x-ray we were told on Fri the decision to do one today made sense, I just wanted them to realize they are mixing signals. Unfortunately, it showed that there is not gas in the lower colon yet, which is odd to them even because he is passing stool and yes audibly gas! This tells them that the reconnection area is still very tight and being small not a good idea to start anything in his stomach just yet. From here we are day to day with x-ray to determine if improvement is made. If tomorrow they can not begin clear fluid then TPN & lipids will begin according to them today. So as of now this has become another open ended hospital stay.

On the positive side from Elias, he has successfully sat up again a few times today and put his arms up for us to stand him up. He can do this for just a few minutes, but we are happy his spunk to do has returned. Even if that is all he does today it is so much better than what he has been doing. This did us both A LOT of good to see! That kid is something else, let me tell you. Thanks for the continued prayers and please remember our other FAmilies in your prayers. There are some going through some very difficult challenges and health issues as well! They are all fighters like our Elias! As one parent in our FAmily suggested last week FA stands for FIGHT ALWAYS!
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And So Goes the Weekend

We had foolishly become optimistic that we would make progress this weekend. We were hoping for clear fluids (ie pedialyte) to begin today per the attending Doctor, but somewhere along the line the decision was made not to do so and we are not quite sure why. The resident told the nurse that based on the fellow's assessment they will re-evaluate day to day. For some reason they do not round like other services, at least not with us. Maybe because we have to be on another unit because of Elias ventilator dependency? We saw the attending surgeon, Dr Levitt on Tuesday afternoon, but not again until Friday afternoon. The fellow has been coming in at 6am so there is not much discussion. We do not see anyone else unless we specifically demand it, which is absurd. Especially since the hospital prides itself on Family Centered Care.

This is day 7 of the admission and it has been 147 hours ( as of the time of this post) since Elias has had anything to eat. Our best guess on the reason to withhold the liquids still is there remains some distension in his stomach, but that is a guess. I won't tell you my other considered reason. If you want to know feel free to email me and I'll be happy to share. What little calories Elias is getting through the IV fluid is going towards the healing process. It is insane how much the child has laid still and slept, even if fitfully. He has zero energy.

Elias did show more life for a little bit this morning but it was sadly short lived. There was a tiny smile and a few fishy kisses. He also tried to sit up a few times, succeeding once and then turning pale white and literally crashing. Poor little guy. So we will just sit here again today and maybe tomorrow. If they are unable to progress on Monday then TPN and Lipids will be considered. We are hoping it doesn't come to that. While it provides needed nutrition when there is no other way it is very hard on the body. Thank you as always for your continued prayers and support. We will update as things change.
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It Works!

Elias had his first poopy diaper yesterday just before noon, which is a good indication that everything is working. That is not to say that he is not still in quite a bit of discomfort. His stomach is visibly distended and hard as a rock from all the gas and green bile is flowing from his stomach into a vented trap. We were able to stop giving him Valium last evening and over night. So that is a positive.

A brief way of describing what is going on is to remember that this is the first time his colon is working "as it should." There is a bit of a shock to the system and it needs to relearn its role in terms of functionality. In the meantime the bowel is rejection the natural fluids our body creates in addition to the fluid that Elias is getting via IV. The body is forced to defend itself against the rejection of the bowels until it becomes accepting. This comes by way of retching and at times vomiting in order to evacuate what is in the stomach. The reason his bile is a dark green is simply from the liver enzymes and fluid that deposit in the stomach which a normal working bowel would re absorb and push out. So while it is a hardship for Elias at the moment every aspect of what he is experiencing is validated by this adjustment. They still are not in a hurry to begin testing his stomach and bowels yet. We fear they may wait until Monday for this, but hope not. We did remind them the length of time he has been without nutrition. The nutritionist for the vent unit came in to visit Elias and noticed the low concentration he was on and wondered why. Apparently, being off the Colorectal Surgical Unit also means being neglected for little details like having the dietician (an automatic for every patient as they are part of the unit team) follow us to ensure his needs are met. Hopefully this will be addressed and adjusted.

So more sitting and waiting and wondering what the plan is. Hopefully, Elias will feel better, be more engaging and make progress today. If there are any developments we will update you then. Thanks for all the prayers and support.
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Not Much Improvement

There unfortunately is not much improvement to report. The plus side is all of Elias discomfort and issues are explainable and to some degree validated. It is just very difficult to watch him suffering like he is. Particularly, when we are so accustomed to seeing him bounce back so quickly.

The easiest way to describe the issues is that Elias has a lot of retained gas at the moment. It is filling up the empty space as shown on his x-ray, but is beginning to also put compressed pressure on his organs. This is causing additional discomfort. The incision and surgical site is not seeming to bother him. We are continuing the every 4 hour valium around the clock to keep him as relaxed as possible.

This morning has been particularly rough for Elias. He has vomited several time already. Considering he has not eaten since Sunday morning one could imagine how particularly painful that has been. He has also been crying out more than normal, needing more frequent suction, and unaccepting of any physical contact. This includes loving contact. Can't say I blame him though.

The goals for today are to keep Elias as comfortable as we can and to hope he finally passes stool and some of that gas. Thank you all for your continued thoughts and prayers. We greatly appreciate it.


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Day 2 post surgery AM update

This morning Elias was still uncomfortable and in some obvious pain or discomfort still. This is the longest we have seen him take to bounce back from a surgery, but the adjustment in his body this time around is quite monumental. We have been giving him Valium every 4 hours and the occasional morphine dose. This is the only way we can get him to relax. Poor little man!

This morning we traveled to radiology for a series of x-rays. They typically wait until stool has passed, but that usually happens by now. So they just wanted to make sure everything was fine in the bowels. Elias has not had any food or nutrition now for 72 hours. We continue to wait for stool before the slow process of working him into his feeds begin.

We will keep everyone updated as things come up. We appreciate all the continued support and prayers.
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Recovery Process

Elias is still uncomfortable and in a touch of pain from the surgery. We have not given any morphine since this morning. Valium has been the life saver today. He has napped and rested well and often through the day. The urinary catheter was removed late morning and that has helped tremendously to decrease some of his discomfort.

The surgeon came in early this afternoon to check on him. He was pleased with how his stomach looked (no swelling) and with Elias overall appearance. At this point we are just waiting for gas, stool, and/or both to pass. At that time they will evaluate when to begin his feeding. He commented again on the small and tight connection from the colostomy closure and his concern over proceeding too fast and causing damage.

Elias has given some smiles but generally just wants to be left alone right now. We can't blame him. He is on 3 different antibiotics too on top of not having eaten anything since 1030am Sunday morning. All in all though recovery is progressing nicely albeit slow going. Thank you all for your continued thoughts and prayers of support.
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No More Colostomy

Surgical update #2. Elias is in some pain and discomfort. He is getting morphine every 2 hours. The colostomy reversal went well, said the surgeon, but his bowel is very tiny. What does that mean? It means they are going to be more conservative with how quickly they resume feeds after he begins passing gas and stool through the rectum. The concern is that the point where the colostomy was attached to the rest of the bowel could open or not heal correctly if they try to press getting feeds flowing. This will keep us inpatient about another week possibly more. We are hoping that Elias will do as he always does and recovers quickly. Tonight there is also a urinary catheter in place which is causing him just as much discomfort. He has been asleep most of the evening only waking long enough to grimace in pain, cry a little and the morphine knocks him back out. Rest well and long little man you deserve it. The hourly bowel cleansings pre-op last night ended up literally going until 5 am, do 10 consecutive hours, so Elias got very little sleep last night. So he has even more reason to be exhausted. We are not positive but it seems like the catheter will come out tomorrow, that is our hope too. For now it is just sit wait for gas and stool and heal. That is the plan and being stuck in that crib is going to drive Elias NUTS! We will update tomorrow on the developments and improvements. Thank you all again for your continued thoughts and prayers. Everyone’s support is greatly appreciated. 

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Surgery update #1

Elias has been in surgery since about 1130am. The colostomy reversal portion. Which is the longest segment is last and being done now. Pulmonary and ENT did bronchoscopies and urology did a cystostogram with urethreal dilation.

Those three are complete now. The airway team said that not much has changed and they had hoped to see some improvement, but haven't. Elias airway is still very flat, small, tenuous, and at risk. They are still scratching their heads trying to figure out how this child is breathing as well as he is. We will accept the gift that he is giving and continue with caution as we have been. So that is positive despite no physical change. What we really need, and the emphasized this again today is for Elias to grow! Damn FA and its growth issues! It will make our GI appointment next week interesting.

We will update again when Elias is out of surgery and we know more about his colostomy reversal.
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The Term “Planned” Admission Used Loosely

Well this day pretty much went as expected, a crazy chaotic mess. We were told to admit Elias this morning at 10 am for pre-surgical prep. It took until six this evening for any orders to be put in the system for the nurses to do anything, so we sat there and no one could do anything or tell us anything. Why were we there so early if they were not going to start anything or even put orders in? The sad part is we had spoken with the colorectal nurse coordinator just a few weeks ago and rehashed the insanity and unprofessionalism that surrounded our surgery by the same team in June. She assured us that would not happen this time. Well she was wrong. Sadly the events in June were so bad and unorganized that the patient advocates office became involved. They sent us a letter outlining their review of the situation and that they would take action to improve this area. They too were wrong. Anyway, enough about that and we hope it truly ends with just today being a cluster…..

Elias is in good spirits tonight despite going through hourly bowel cleansings since seven this evening. This consists of placing a Foley catheter in the colostomy stoma and flushing saline in and drawing it out once an hour until the return is clear. Hopefully it will only take 3 or 4 times. He also has not had any food since 10:30 this morning and will likely not be fed again for another 24 hours or so. Still he is being an amazing little man, laughing and smiling.

An update on the Central line issue we informed everyone about last night….The CVC team examined the line and determined there was a weak area that needed to be repaired. This was a relatively simple procedure and done at the bedside. They cut the line beyond the weak point and fed another wire through and glued it together. That was a sigh of relief for them to be able to fix it. Though it was simple it is not without risk and much be watched closely to ensure nothing made its way into the line to contaminate it during the repair. We did have some issues and it took 3 repair kits with us literally covering his open line with a sterile gauze pad for close to 10 minutes while we waited for another kit to arrive. He appears fine and it has been used for labs and seems to be functioning well. We are very relieved that stress is removed.

We will post updates through the day tomorrow to update on Elias progress and recovery with his surgery. We are not certain as of now exactly what time he will be going in the Operating Room. Please keep him in your prayers the next few days, we greatly appreciate it.

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• Elias' Central Line

Stairs

Apologies for not updating sooner. but Elias is at home. We actually came home Tuesday evening. We were fortunate though. Lucky for us Dr. Wood, Elias pulmonologist was on service. He was concerned about Elias being there and getting a respiratory infection on top of the MRSA blood infection. So again Katharine and I went through more training to learn how to administer IV antibiotics via his central line. It really is not difficult especially compared to everything else we have had to learn to care for Elias! After the antibiotic course is over we will be waiting anxiously as another culture is drawn to decide the fate of his only real access. Praying it stays clear, he really needs that. We will be on the antibiotics for 10 more days every 8 hours with each infusion of meds taking an hour. Totally worth it to bring him home! Elias is doing well, probably the best he has felt in months given the C-diff issues and various other issues. He has been doing wonderfully and has been very playful and full of spunk.

Our week was not over though as we still have several appointments to go that we are thankful he is not in the hospital missing. The big one was the developmental pediatrician yesterday. The appointment went wonderfully and her evaluation is that while Elias is technically scored at a 9-12 month developmental level she strongly believes that cognitively he is age appropriate. However, when you do not eat by mouth, talk, or hear it is difficult to quantify this. This was important because our purpose for bringing her on board his medical team was to help with the BAHA situation or the lack there of with response. Her opinion is that of his therapist and what we have been saying all along. While Elias is scored at that 9-12 month age level simply using those parameters suggest to her that his lack of response is not a cognitive issue. So as we like to say, the cheese stands alone. The audiologist is the only person who feels opposite this. So we are back to trying to figure out what is wrong. In the meantime She is referring us to the assistive technology center attached to the hospital for a communication evaluation. This will help identify what technologies are available to help Elias communicate effectively until such time he can do it on his own. It is a very high tech an reputable center with many cutting edge technologies. This should provide great benefit to Elias!

We got our colorectal surgery (Imperforate Anus Repair) and next ABR date, Mid June. Then if all goes well sometime in August we would return for another surgery to reverse Elias colostomy. That will be a joyous day. We will NOT miss the colostomy at all. As for growth, he is just now back and forth with breaking 17 lbs depending on clinic or hospital scale. Elias is growing lengthwise though. Developmentally, Elias is wanting to stand, BADLY! He can stand leaning on furniture on his own now and is even beginning to do some wobbly step or two cruising along it. Today Elias had PT and his therapist decided it would be a good idea to see what Elias did at the stairs. We have been working on bench sitting to standing and he is doing well with that, so for kicks she challenged him. I’m sure those that know Elias will not be surprised when I tell you that kid crawled/climbed 3 stairs with assistance. His PT was very impressed and we were very proud. He was smiling the whole time too as he climbed towards Mommy who was several steps above. It was too precious to see him doing that. He has learned to use those arms and hands so well despite the differences and it is awesome! Yet again Elias! continues to amazing things over and over.

Precious Moments at the Hospital!

 

Si Pap Overnight

Elias did well with the continued Si Pap overnight. They also began lowering his oxygen level which is down to 26% (21% = room air). His blood gas looked very good at 3pm yesterday which prompted the decision to let Elias continue with Si Pap. While we are all very pleased with the terrific success and amazingly quick progression Elias is making, the doctor warned us not to be too content just yet. He explained that it is possible for them to move down too quick and then suffer a set back. Hopefully this will not happen and it is for this reason they are considering slowing down a little with changes. They are going to discuss things this morning and consider what more if anything they want to do today. One thought is to just allow Elias to continue with this for another 24-36 hours before making the next adjustment. That next step is to lower the amount of pressure control to help hold his airway open. One possibility that does exist is the Elias may only need the Si Pap or other intervention at small intervals of time and not full-time. That would be a great scenario as well and is a goal we’d like to work for.

We are still awaiting a decision on the potential for a NJ tube for feeds. We probably will not hear anything on that until rounds this morning. The other key thing we are watching is Elias temperature. His normal hospital temperature is 35.3 C. They have had several now that have been over 36 C, and his white blood count from a CBC yesterday was 18, just slightly elevated. We are hoping this is not the early signs of an infection or illness brewing. We will keep you updated on any developments regarding that. Finally, this morning Elias will be heading back to the O.R. on the 14th for another bronchoscopy. They will be assessing the airway and making decisions on what trach tube the want. Hopefully, we will be switching back to the uncuffed trach tube.