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.

 

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.

Wednesday’s MRI Scan Results

While we had planned on an update today anyway, it was suppose to be all positive updates. Apparently Elias found out, must have overheard while wearing his BAHA (kidding of course). Last night shortly before midnight Elias decided to stop breathing again. He has been due for a series of episodes as we have been on a pattern of roughly every 4-6 weeks for quite awhile. He made it through the night with his oxygen saturations staying at safe levels, but lower than normal –even for these episodes but he let the ventilator do 98% of his breathing for him. No oxygen had to be used so that is another positive. We have already contacted pulmonary this morning to see if they want to do anything. Waiting on a return phone call. The stress of it, while high & intense is manageable –from experience maybe, but the frustration level increases every time. We just wish we could figure this out so we can prevent them.

Observing His Play

All is well here. We have been bogged down by snow and now the bombardment of rescheduled appointments. We are working on another MRI for Neurology. We had one in September and the doctor wants a follow-up. The exceptional nurse coordinators at the FA clinic are working their magic again with Our ENT – focused on his hearing – in coordinating to do the FMRI we mentioned last October with this upcoming MRI. Especially with the breakthrough we seem to be having with his hearing, it will be very interesting to see just what is happening inside that little boys brain.

Apnea, MRI Results, & A New Concern

It has been a long rough day. Elias has stopped breathing 11 times in the past 26 hours. 10 of those have been since 2:30 this afternoon. He has needed to have supplemental oxygen to recover each time. Ironically, the neurologist called this afternoon to discuss the results of the MRI last week. There is no evidence of seizure activity or issues anatomically that would suggest a Central Apnea. That does not mean this still is not the case though. Of course, a cut and dry answer for Elias!? Never!!!!!!! The neurologist did ask a series of question about today's episodes to get some other information. She is pretty confident that this is not seizure related based on his interaction response during each episode. We also ironically just saw Pulmonary on Tuesday which I will update on that visit this weekend. Everyone agrees that this is not going to be an easy mystery and that handling this the way we have is still the best. It is just stressful, worrisome, and exhausting.
The only other finding to the MRI is a mass in the white matter of the left frontal lobe. While this type of thing could show up for a number of reasons, most of which are inconsequential, there is a need to treat it with respect. There is a small chance it could be a tumor of some sort. We will repeat the MRI in about 4 months. Even if this shows up again that doesn't always mean anything, but might prompt further testing. Even though she was downplaying this finding, it is a little unsettling. Just one more thing to be concerned about. It just never ends. We will keep everyone posted on this, but it will be a few months before we know anything more. Tonight we have other, more pressing concerns with Elias breathing.
At the time of this posting Elias is sleeping and on the ventilator. It is doing all the work though. We think he is so exhausted his body is allowing the vent to breathe for him. We had to raise the rate to 15 bpm to keep his Sats up but hopefully he will relax, breathe on his own when he can and be better tomorrow. Thank you all for you concerns, thoughts & prayers, especially for the newest issue.
By the way if you haven't seen it already, check out the Videos in the side bar to the right. There is a short new video of Elias walking and kinda babbling! It's adorable!
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Related articles

• MRI Scan (mycarouselofprogress.blogspot.com)
• Another Round of Apnea Episodes (mycarouselofprogress.blogspot.com)

MRI Scan

Elias had an MRI of the brain and cervical spine yesterday. Neurology ordered the scan to repeat a seizure protocol and rule out Chiari malformation. This was another attempt to discover the cause of Elias apnea episodes. The doctors want to compare it to the last MRI which was done in September of 2009 two days after the first appearance of Elias episodes. Elias did well through the scan and recovered quickly from the anesthesia. There was, as always, concerns that Elias would have to be admitted due to the risk associated with his sedation. His risk is much greater than most because of his airway issues. We have not received a report on the reading of this MRI yet and not certain when we will. If we have not heard anything by Monday we will call. No news is probably good news in this case though.

We had hoped to get the Functional-MRI as well yesterday, but it was not in the orders. We are not sure if it was because of scheduling or the neurologist that the red light was put on for this. The FMRI is the research scan we mentioned in Elias’ last ENT update. It was disappointing, but as we said before it was all for curiosity and not diagnostic. Another opportunity may present itself in the future.