Long 2 days

Boys GI appts., First of all I thought the new dr. was very sweet and compassionate. Just a nice bedside manner. I warned him as soon as he walked it that this would be a long visit and it surely was. Two hrs. to get through both boys. He had gotten alot of the boys hx from our mito dr. and already seemed overwhelmed. Of course I got the typical "these boys are soo complicated" I hate that line. Basically means to me that there is not much I can do for you.

Anyway, starting with Avery. Ugh.....

*He agreed with me that he was on way too many meds and got rid of his levsin which was no help, decreased his carafate and his gas drops.
*Kept him on the formula
*Will try to communicate more with the team when we are inhouse more
* does not want him to have a port anytime soon b/c the chronic c-diff could really cause a major yeast infection in a line. News to me.
*He did talk alot about working with Pallative Care for a DNR in place for him. I did not expect that one and so heartbreaking b/c even though I know it, to hear it said basically tells me that there is not much I can do for him.
*Also with all of Avery's retching/vomitting, don't be surprised he ends up with CVS.

Isaiah
*Confirmed CVS (cyclic vomiting syndrome)
*he agreed with what we were doing at home but wanted to tweaks some things.
*he is adding Keppra back with a 6 mos trial out of the list of preventives that we tried but has to be cleared by our mito dr.
*he also wanted to add Imitrex nasal but it was not cleared by our neuro b/c not used in kids under 12 and certainly not in mito kids
*He also said we could try IV fluids in the hospital but knows quality of life is a big issue for us.

Low and behold, Isaiah started a spell 3 hrs after appt. and the Diastat is not even working.. No imitrex. So looks like we may be ending up in hospitals for our spells. Not what I wanted to hear. We are seeing neuro tomorrow and hoping to come up with a workable plan for Isaiah.


NEURO appt
Can I just say that I really love my neuro dr. she has been with us since Isaiah was first identified and with everything with Avery. She is just great and we are very lucky. However, it was a really long day today b/c of all the snow so needless to say the boys were totally exhausted. Isaiah was coming off of his cycle and was completely lethargic and drooling all day long. Avery vomitted quite a bit today. I did not have a nurse today so Janessa and Rick came. Quite the family event. Janessa was such a trooper today. What a good girl. I swear by the second day of drs. appts w/ both boys I was so tense especially adding driving home in horrible weather while the boys looked like complete crap. They really can only take being out and about for so long. They are much more content at home. Anyway.......

Avery
*He will be starting the experimental drug soon for his high lactate so they will schedule a hospitalization for that. Praying that he responds well to it.
*No med changes or additions which is always great.
*Scheduled a full skeletal x-ray to check for any more broken bones. Way too much of a long day for them to get it done today.
*Bloodwork of course

Isaiah
*We discussed at length medications for CVS. There are two types of meds. Preventive (daily meds hoping to stop the CVS eventually) and abortive (when he is in a cycle, something that stops it immediately) Currently that is diastat but the longer you use it, the less effect it has. We will try something other then the keppra that will seem more effective hopefully and there are a number of abortive meds. we can try, THANKFULLY. I really just do not want to be in the hospital everytime he is in a cycle. I swear, every hospitalization ages me a few months or even yrs. I have turned into a homebody and that was not the me before 3 kids and hospitalizations.
*We are also increasing some of his vitamin doses to see if this helps. So little changes but I at least feel like we are trying.
*Isaiah had ALOT of bloodwork b/c he has not been seen in so long b/c Mr. Avery keeps stealing his spotlight so we had alot of catching up to do. So many vials of blood that the labs did not get everything they needed b/c they were concerned b/c he already looked lethargic.

Wow...... I swear this is my longest post to date. Just lots of information in a couple of days. Then my work calls me while I am at the appt. saying that there is a hearing aid that they had payment for and the home it waiting on and some obvious loss of communication on their part and how soon can I get that aid out. Like ASAP. Are you *&^%&%%^&% kidding me.

Avery is having a REAL hard time settling down tonight so looks like a loooong night and poor Isaiah looks like death. So let's hope things get better over the weekend. We still need that break, just have no idea when it is coming.