Corbyn's Surgery Game Plan

We had our appt with Dr C our hematologist today and we will be rescheduling the needed surgery once again. Not only am I perfectly fine with this, but we also game up with a game plan that will best fit Corbyn's needs.

Once again the needed specialty teams have not been communicating as they have needed to ensure everything is done making sure his safety and health needs come first. Because Corbyn is more complex than the average child more doctors need to be involved. Unfortunately, some of these doctors have not seen the importance of their involvement and collaboration prior to surgery.

Since we have been having a difficult time getting all the needed doctors to communicate, Dr. C has recommended that I call our peds Dr first thing in the morning, make an appt with him to be seen as a "follow-up from his hospitalization" and have Dr. M make sure everyone is communicating. He is an amazing Dr and Dr C said he knows that Dr M will do this for us.

However, Dr C will not allow Corbyn to have the ENT surgery with DR S until neurology (Dr's G and F) have a better understanding why he is having dizzy spells and passing out episodes and has been cleared as safe for surgery. He also has to be cleared by Dr M, anesthesia, then Dr C will allow for the IVIg infusion scheduling. All this has to done with at least one month notice to allow for the infusion scheduling.

Once we schedule the infusions, the infusions will be done 5 days prior to surgery. 24-48 hours later Corbyn will have to return to Johns Hopkins, have his blood drawn again, and if his platelet count is not between 150,000-200,000 he will have to have another infusion.

By this point we will not know until we are already there for his surgery if we are cleared or not because on surgery day we will have to start with another blood draw. Once again if his platelets are below 150,000 then Corbyn will not be able to have the scheduled surgery.

Starting July 2nd Corbyn was admitted to Johns Hopkins Neurological/Seizure Monitoring Center to see if the neurologists could help determine his passing out episodes. I have to admit that stay has been interesting to say the least. One of rules was that Corbyn had to have a parent at all times because he is a child. Since I am the one that normally stays with the kids in the hospital, I ended up staying with him the whole time. Because I stayed with him, that meant Ava also stayed. Ava stayed because she is my service dog.

Most nights the doctors have wanted Corbyn to be sleep deprived, meaning no sleep before 2 am and then up by 6 am. This has made for some very long days. This meant that I stayed up with him.

What we know so far is that the long tern EEG are all normal. However, Corbyn's blood pressure readings are off 30 points between laying, sitting, and standing. We also know that if he gets up quickly from a laying to the standing position, then his heart rate also jumps.

The doctors have him wearing pressure stockings (forget the name) and gave IV bolus, redid the blood pressure readings. They were hoping that the readings would be drastically different, meaning there would be a simple solution. Drink more, increase sodium, watch the getting up and going down. This was not the case. 

Because his readings are still off he will have to have a tilt table test with an EEG. They are suspecting his passing out spells are vascular related. I suspect it maybe autonomic related. We already have 2 kids with autonomic dysfunction. The neurologists at this point are not willing to call it autonomic dysfunction, other things need ruling out first.

What we do know is that Corbyn's episodes are not typical cardiac issues. His heart is strong, and has a normal heart rhythm. His brainwaves are textbook, there is no sign at all of seizures even during his episodes. Yes they caught several. Brainwaves are perfect

This still leaves his syncope episodes classified as "idiopathic" though. What this really means is, doctor terms for "unknown reasons for sudden loss of consciousness". Simply put, the doctors still do not know exactly why he keeps fainting or passing out. Idiopathic is a term I have come to really dislike. 

At this point he is to keep his water, salt, and protein intake levels increased. He has to wear compression socks every day as there was a slight improvement in his blood pressure changes with the socks. He has to watch how fast he gets up from any position. He is not to jump up at all from lying or sitting as we know this raising both his blood pressure and heart rate. If we are at any even where he could jump up from excitement, then those around him have to know that sudden jumping up can and may cause him to pass out.

Right now Corbyn is scheduled for surgery on the 14th to have his adenoids removed, a PE tube (ear infection drainage tube) removed and his ear drums repaired that have been damaged, one from the tube that has been in his ear for 11+ years and other from many severe ear infections and multiple severe ear infections.

However, before he can have surgery his platelets have to be between 150,000-200,000 and his were only at 30,000 at the beginning of the week. Darn ITP...

Yes once again his ITP or Chronic Refractive Immune Thrombocytopenic Purpura is complicating things further.

If we allow the surgery to take place with the dangerously low platelet count, this seemingly minor surgery will become a life threatening. He will bleed out on the table as soon as the adenoids removed. The eardrums, they may not be life threatening, but they will be much messier than normal.

We see his hematologist tomorrow and he will either give the green light for surgery or tell us to reschedule again. I am sure we will be told to reschedule until we know more about why Corbyn is passing out. At this point I am totally fine with his surgery being rescheduled again. I have confidence that his hematology team will help us make the best decision for him. I also know they will make sure the other doctors are communicating with them, one of the issues we have been having.

End of School Updates

School has been out and lots has happened in the past couple weeks.

Zach had an awesome end of the school year. As the 5th grade award assembly was starting the principal and school secretary got up on the stage and announced that they had a very special award that was unannounced to everyone including the teachers. This of course had all the kids looking at each other with curiosity. With a huge smile the secretary removed a letter a from an envelop and began reading. The letter was from President Obama and congratulated the children on their hard work, effort, and the importance they have placed on their education. They then started calling names and had all the students keep standing until all the kids were called. As Zach's friends were called he shot them all thumbs up and was beaming for them. Then his name was called along side the Presidential Educational Academic Achievement Award, and he was no longer just beaming but trying not jump up and down.

Later he came across the stage to receive his elementary school completion award, and also received awards in music, orchestra, choir, and received the RWES Overall Musician of the Year award. Again he was beaming and beyond thrilled. Oh and he made honor roll.

Summer is off to a great start for Ellie. She ended the school year very well with a music award, honor roll, and a really GI appt. One of her friends became a big brother, one friend moved, but she has already become best friends with a new little girl who just moved into a house just down the block. (The best part about being on a military base, when a family moves another moves right in)

Her GI appt went very well. We were told to start out with letting her be off her pump for 2 hours a day during play time, and if she does not lose weight and keeps her energy up by Christmas time we may be looking at up to 4-5 hours a day off her pump. She is also able to perform without her backpack and pump! This is the most exciting thing for her right now as this means we will not have to have costumes altered to allow her backpack and pump for this musical!

Just as School was ending Corbyn and Jade attending marching band camp and both kids learned a lot and loved band camp. Once again Jade is playing her flute, and Corbyn will be playing percussion this year in marching band. He will be playing a variety of instruments within the auxiliary section, he will be supporting the main drummers. When not on the field he will be playing his bassoon.

Zach spent a week with the Cub scouts as a volunteer at the camp and had a total blast. he camp home each day totally exhausted, but excited to return the next day. This same week Celidah left for Girls Camp as a youth volunteer. She too had a blast but is saddened because her time attending Girls Camp as youth or a youth volunteer is over.

Just as Zach was finishing Cub Scout camp, Jairon left for High Adventure Scout Camp. This was totally exciting for him as this is the first time he has been able to attend this kind of camp. While Jairon was away at camp, Musical Theatre Camp for Zach and Ellie began. 

Celidah has been working with the preschool and kindergarten kids since musical theatre camp began. Jairon missed the 1st week and has been working the 2nd week. This week (2nd week of camp) Jade is helping babysit a friends little boys so she and her husband can spend time with their littlest one in the NICU. 

This week everyone has something going on. 

Yes we like keeping the kids busy, and they like being kept busy.