First Full Schedule Week of 2012

 It has been a typically busy week. One or two appointments each day that will continue through the week. Elias has IVIG as well as O.R. time with dental for cleaning and oral cancer screening. This is important and needs to be done early for Fanconi Anemia patients. While under general anesthesia he will also have another MRI and a discussion with his Neurologist about the readings. While everything should be routine, for Elias anytime he goes under anesthesia it is always a little nerve racking for us as well as his doctors. There is always high risk respiratory wise for him. Thoughts and prayers on Friday will be appreciated.

 

 We are anxious to see what Elias' IGG levels will be, which the results will not be available until The beginning of next week. We are hoping for a continued rise in the level versus the up, down trend that he has been showing. We have noticed some increased energy in him overall, day to day so we hope that is an indicator of positive results.

 

 

 

The photos on today's post are from this afternoon while Elias was being fed. They turned out great! He was watching 'Cloudy with a Chance of Meatballs.' It has become one of his favorites. Thanks to his great-grandparents  Nana & Papa for buying this for him. Elias has continued to be really into the chasing game. The communication intent, engagement an initiation of action is HUGE for him. It is a big step forward in his understanding how to effectively communicate. It has been very exciting.

 

As always we thank everyone for taking the time to read about our amazing little man. He continues to amazes us everyday, and we are trying to share those triumphs with you all as much as possible. We are always thankful for the prayers and support shown to him and our family. We wish everyone a healthy happy prosperous new year.

 

 

 

IVIG Denial Update

Out last update shared the news of insurance denial for Elias' IVIG infusion, a treatment he has been receiving for two years. On Thursday evening the insurance company finally contacted his bone marrow transplant doctor for the peer to peer review that had been scheduled for earlier in the afternoon. The nurse coordinator called us afterward and was a touch frustrated by the call. Essentially this call was just to screen the situation to determine if this was even worthy of a review. After the insurance company's doctor asked and received all the information he wanted he told them, "If you fax everything over to us within the next five minutes, it might be reviewed next Tuesday." That meant we had to cancel the IVIG scheduled for yesterday. If the insurance company does indeed get to review this Tuesday we might be able to have it the end of next week. On Friday morning the insurance company called again requesting even more information. They were inquiring on Elias' immunization record of Pneumococcal Conjugate, which he had received on schedule in 2008. However, his titers for this are obviously showing little to no response. This will further strengthen and support the necessity of IVIG, not that there isn't enough there already. So there is quite a bit of confusion as to why there is so much questioning about this. In fact Elias' last IGG level are well below the max level according to the Insurance company's matrix of necessary therapeutic dosing. So everyone is really having a difficult time with this resistance. We were told his doctor made it very clear that if they continued to deny this, Elias would likely be hospitalized for any number of potential causes because of this - history supports that statement as well. His levels have been too erratic and unstable recently. All we can do know is continue to pray and hope for a swift resolution. Monday morning the team will pursue some potential backup plans or next steps should the denial uphold. We will be watching Elias like a hawk and lower our threshold and comfort level if he is having "an off day." We do not want to take any chances given his past history of being nonclinical for a great many issues. Hopefully by Thursday we will have a resolution and will be able to add it to the list of things to be thankful for this Thanksgiving Holiday. As always thanks for the continued thoughts, prayers and support.

IVIG denial

Elias' IVIG has been denied by the insurance. There was to be a peer to peer review call today between 1-2 but the insurance company never contacted his doctor. We are waiting to hear if things will work out as he is scheduled for treatment in the morning. His levels have dropped drastically again so this is extremely necessary and important.

The last time a dose was skipped was in July as they were hoping to space his treatments out. Elias was hospitalized with his seizure & suspected viral meningitis. His IGG levels also tanked to the 320's. Coincidence? More than likely, but no one wants to take that chance.

Please Pray for a favorable resolution. We are confident the medical team has more than enough data to support the justification of these treatments. Hopefully this will be enough to provide the insurance the medical necessity needed for reversal of the denial. We have been fortunate to have not had this issue up until now. The treatment is too expensive to afford out of pocket -the medicine alone is $1500-$2000 a dose. Then again there isn't much we can afford these days, let alone ultra-expensive infusions. Thank you all for your thoughts and prayers for this.
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Shaken not Stirred

Man does it ever seem to be more difficult to find time to update lately. It seems like the longer we go between updates the more difficult it is to put it all together. More on that later. Yesterday there was an earthquake in Virginia, you all undoubtedly know this. We have a great deal of friends in family in that area that were thankfully unaffected and safe. We also had tremors here in our area as a result, but nothing too bad. Crazy stuff! Shortly after the "earthquake" we had to make our way to the hospital for a Pulmonary appointment. This was a routine follow-up because of Elias' hospital stay a few weeks ago. Pretty much status-quot, which is always welcomed. Dr Wood did comment on the new adrenal insufficiency. Again he is so amazed that Elias has yet another affecting diagnosis, that there isn't a system or organ in this boy's body that isn't impacted in some way from Fanconi Anemia, yet he thrives and out performs expectations. No one is complaining of course, but it is amazing. He is interested in watching how Elias does over the next 4-6 months with the recurrence or absence of  his spontaneous breathing stoppages. Will the Keppra (anti-seizure medication) have any impact on that or not? He will be working along with neurology to evaluate. Katharine took the opportunity to ask him about the possibility of letting Elias have anything by mouth, knowing what the answer would be but you have to ask you know. He chuckled a bit and hung his head and said, "I don't want to answer that." He still feels it is too dangerous a risk, especially since there has only been marginal improvement in the airway compression along with the lack of growth to assist that. It is fair and we expected that as we said, but again if you don't ask....

Speaking of the Keppra - we have started to see a diminished amount of side-effects with the adding of the Vitamin B-6 along with the natural adjustment. So that is a positive sign. The daily steroid that endocrinology has ordered also seems to be having a positive impact. He has been on that 3 times a day for just under a week and we can already tell a difference. On a not so positive note, Elias' IGG level has plummeted. These levels correspond with immune system function. He dropped close to 200 points to the low 600's. He was around 890. Normal ranges for this is 400 as an accepted low and 1200. He has been steadily declining since May from 920 to 890 and now the huge sudden drop has the doctors a little concerned. We already have gone back to extra precaution mode with him and will continue that for awhile. He will be getting IVIG much more frequently it seems. We got a call yesterday from the FA clinic saying they wanted him in for an infusion this week, but were okay with waiting until next week if need be just no later than that. I think the bigger concern at the moment is we are getting ready to head into cold/flu season and with him being more compromised than his normal is a touch concerning. So they want to figure this out and get his IGG numbers back up as quickly as they can. There will be more on this in the near future we are sure. One final item to quickly note is we are moving forward to see the Infectious Disease (ID) team in order to try and get a better grasp on the c-diff situation. GI is just not doing much to follow-up on this, and he has been put on the same course of vancomycin for the dozenthish (is that even a word?) time. A few of his doctors were NOT happy to hear he was being treated again, because the symptoms were not there 100%. We agreed.  So we are looking for another opinion, especially after the conversation we had with ID when he was being evaluated during his admission.

Overall Elias continues to improve and recover. We are settling into his new routine, which has become a bit more intense as we have increased from 5 daily meds to 9 (most 2-3 times per day around the clock) and 16 overall with the "as needed" and emergency medicines. Kind of reminds us of our first months home. We switched pharmacies 3 weeks ago, they already know my name and face we have been in so many times. We continue to be thankful for how well he is doing all things considered. Especially after being reminded so much lately how unlikely it should be and how incredibly complicated, medically he continues to become. Thank you all for the continued support and prayers. They are obviously being answered.  

A Full Week

It is the end of another busy week, exhausting week. We had appointments everyday this week (some days multiple), except for Friday. Most of them

were various therapy appointments, with IVIG and some research lab work thrown in the mix. Health-wise Elias is doing well for the most part. We just finished another 3 week course of vancomycin (second course in 6-1/2 weeks) on Monday for C-diff and already we are seeing the beginning symptoms of a flare up emerging. I imagine Monday morning we will be calling GI for the next plan to try and beat out this very chronic issue. There has been some conversation between Elias GI doctor, His BMT doctor and the chief doctor of infectious disease on alternative treatments. Probiotics have been mentioned in the past, but BMT would rather try other options first. We do not fully understand the reason behind the reluctance, but she is a VERY good FA doctor that we trust explicitly. She is not 100% opposed, but would rather not jump right in if there is an alternative, which apparently does exist. So we will place this in their very capable hands and see what comes next.

Walking, Snow, & Counts

Elias had a decent week. He is really getting his walking feet back. That has been all he has wanted to do though. He has ignored all his toys and just walked and walked and walked some more. He is absolutely determined to get it back. We posted a video from last Sunday night while he showed off for Grandma O.

How Much Can I Cram in One Week?

Fire the idiot that does our scheduling! Oh wait, that’s me! What was I thinking? How much can we cram in on one week? I have no idea how I managed our schedule to get so out of control this week. Well this week has been a very hectic one. Elias had Speech, Occupational, Physical and Aural Rehab Therapies through the week. We also had IVIG Friday and of course, what is a week without a new problem or issue to contend with? Not to mention Katharine having to work an overnight shift at work, and having some doctor appointments of he own and I had a meeting with our nursing agency case manager. We are very glad this week is behind us, but the schedule doesn’t seem to be getting less chaotic anytime soon.