Sunday, June 24, 2012

Surgery and Recovery Overview

Monday morning we called up to CMH to get our surgery and admission orders.  Eli was admitted at 4pm Monday afternoon.  The goal was to get an IV running and get him switched over to fluids to be ready for a 7:30am surgery start time.  It took 9 hrs to get the IV.  We finally got access around 1:30am.  It wasn't for lack of trying.  We had multiple failed attempts, blown IV's, etc.  It was a mess.  They screwed up his formula orders and med orders as well, so it was all in all a disaster.  He did end up making it to surgery on time.  He was back for around 2 hrs.  They weren't able to do the surgery laprosopically, and ended up having ot cut him open.  He was pretty sore and groggy for the rest of the day.  He had alot of problems this time with nausea, and kept choking and retching and dry heaving to the point of turning purple.  It wasn't a fun recovery.  He came home on Wednesday afternoon with his cath.  By Thursday afternoon he had blood in his cath, by early evening it was bleeding ALOT.  Called surgery and they had me bring him in.  By the time we got there he was no longer peeing and it was just blood.  He passed a blood clot and then alot more blood and then it stopped.  They sent him home to lay low and rest.  Yesterday morning all looked good.  By yesterday afternoon there was blood again.  Called surgery and they decided to pull the cath.  So we did that yesterday evening.  He did pee last night, still blood in the urine.  One pee this morning so far.  We are hoping if he rests and lays low that the bleeding will stop today. 
His pain does well as long as he gets 4 doses of tylenol a day.  He's still really tired, which is to be expected.  Like always Eli is my fighter.  He has pulled thru this like a champ!
Our family on the other hand is exhausted.  Bob and I have hardly slept this week.  My headaches are thru the roof, and my blood pressure has been elevated.  Life is really catching up with my physically. 
I will get more updates up soon, but I wanted to get a basic surgery overview up.

Wednesday, June 13, 2012

Quick Eli updates

Pancreas labs are back and they all look good.  The biggest immediate concern is that that Eli is again constipated which is requiring another full clean out.  This for Eli can be torturous and we have to be careful to avoid diarrhea.  The problem being we just tried to stop the miralax as it was causing alot of diarrhea, but without it he's constipated.  We can't seem to get to a happy medium.  We are wondering if we are simply pushing to much into the intestines in a 24 hr time frame. 
We are going to lay low this week and hope to keep everything smooth as we have surgery coming up on Tuesday.  He will be admitted Monday and switched over to IV fluids and meds.  His geneticist has also sent over a detailed list of surgery precautions and anesthesia instructions as well as detailed instructions on what to do with his meds for his adrenal insufficiency.  Hopefully this will help keep his cortisol levels a bit more stable.  He is obviously at a greater risk for hypoglycemia and seizures with the anesthesia and the stress to the body from the surgery BUT hopefully we can help give his body some supports. 
At his PAT (preadmissions testing appt) they were detailed and organized. They know Eli so well at this point. The head of the anesthesia dept has been notified and will again be notified on Monday. He will be running everything on Tuesday.
I'm not ready for surgery.  I'm just not.  Not that I'm EVER really READY but I feel even less ready this time, nervous.  I'm not exactly sure why, I just am. 
As of right now it will just be me at the hospital during Eli's surgery.  We are hoping to figure something out for the kids but unsure yet.  Maybe that's why I'm more nervous than normal. 

Anyways.  The older 4 are busy this week with VBS, and next week Emily has strings camp each evening.  They are enjoying their summer and staying super busy.
I will update more soon.

Friday, June 8, 2012

More Info still not equaling answers

I got a call right before Bob and I headed out of town that a few more of his lab results were in, although we are still waiting on alot.
Eli's protein was low, although we aren't sure why.
His creatinine was really low.  She thought he only had 1 kidney and that it could explain some of that, but nope he still has both.  We do know that 1 doesn't work well BUT his creatinine has still always been quite a bit higher.
The biggest shocker was in his liver enzymes.  His AFT (normally is 7 to 40) Eli's was 255.  His ALT (normally 7 to 50) Eli's was 430.  They don't completely freak out until these numbers are 1000 that being said alot of the early symptoms we would be watching for with liver failure would be masked by Eli's other symptoms.  So they have us watching for yellowing of skin and eyes and copper colored urine.  They GI and geneticist are talking together along with Eli's medically complex doctor and trying to figure out what next and what's going on.
From a parents perspective we are concerned.  We've been told not to freak out yet, and we aren't, but we have been told concern is fine.  That's concerning. 
So as of right now it looks like something is going on with Eli's intestines, pancreas, and liver but nobody knows what. 
We will update as we know more but obviously it's Friday so it will be early next week before we have any more information.

On a side note Bob and I got back this evening from our vacation.  It was amazing.  We were gone for 3 days and 2 nights.  The bed and breakfast was amazing, and we packed our time with tons of outings and museums and different foods.  We are so thankful to have had our time away and are so thankful to the amazing people in our life who helped this happen! 

Tuesday, June 5, 2012

What's simple?

Life can never be simple.

Emily ~ She finished out the school year strong, with all A's and did incredibly well on her state assessments!  She's doing ok so far this summer.  She's taking violin lessons this summer.  She goes once a week and is enjoying it.  It is something that she is really good at and really enjoys and we are hoping that by getting her involved in private lessons, it will help her excel even more!  During her extra time she's been doing some reading, craft projects, and making some new friends in the neighborhood.

Jace ~ He finished out the school year well and did AMAZING on his state assessments!  We are so glad that the changes were made on his IEP to allow him to do that testing verbally.  The differences really showed!  He has been busy as always outside with his friends.  This last Saturday he ended up in the emergency room.  He is doing better slowly but surely now but still a bit sore.  He's on 3 new meds to help cure it all.  He's getting all of his boy activities back so he's definitely doing better.

Benjamin ~ He finished out the school year pretty well.  He's having a rough summer, as we've weaned off one med and will soon be starting the next.  His respite worker is here each day and tries to keep Ben as busy as possible.  They have been to the Zoo, Monkey Bizness, pool, parks and the movies.  He will be turning 7 on Thursday and is looking forward to his party this coming Saturday.  This last weekend my parents came in town and we all went to the new Sea Life aquarium here in KC and the kids loved it! 

Ariana ~ She finished out the school year strong and had alot of fun at her pre-k graduation!  She's doing pretty good so far this summer.  She plays outside with her friends alot and really enjoys that.  She went to a garage sale last week and got a bag full of barbies and that has kept her busy for days! 

Elias ~ Oh my little Eli.  Life is a mixed bag for him.  On the positives his walking is doing great!  He is all over the house and can now stand himself back up from a sitting position.  He can get up and down the 1 step by himself and that allows him more freedom.  He's still not able to carry his feeding pump as it just throws off his center of gravity to much.  The negative is all the walking and the summer coming on is causing alot of havoc with his temp regulation, which in turn causes hydration issues.  He's still having alot of intestinal issues (diarrhea) which obviously makes the hydration even worse.  His temps have ranged from high 99's all the way to 103.  We are already pushing sooo much fluids.  His GI doc chose to run some stool samples and we just met with him yesterday.  One of the tests came back showing high leukocytes, which is a problem.  Eli's belly is also very tympanic.   Upon further testing and checking and looking thru Eli's meds lists we realized there was a major issue.  First of all one of his tummy meds had to be stopped immediately.  It is listed as causing life threatening interactions with 3 of his new meds.  So we immediately DC'd that med.  He also feels like Eli's intestines are struggling.  He either has an infection in them, the bad bacteria is taking over the good bacteria, or they are simply overworked and overstressed.  So Eli is going to go on a new regimin of rotating antibiotics every 2 weeks.  Normally the doc would rotate 3 different antibiotics but Eli to small and young for the side effects of one of them.  So we will only be able to rotate 2 meds for now.  Also he is concerned that there is something that we are missing so has decided to do further testing.  He ran 5 tubes of blood, and did another stool sample.  He is concerned about Eli's pancreas and his intestines.  He is wonering if Eli has celiac disease as well, so he tested for that.  Eli is on a predigested, elemental formula BUT many of his meds contain gluten.  This will be a HUGE problem if he is, as some meds don't have good alternatives.  The next step after all these new labs come back is an EGD, colonscopy, and biopsies.  We are changing alot of things involving his constipation prevention care as well.   I'm nervous as we make our way thru all of these changes as Eli's GI system is VERY sensitive.  We have also constantly had the feeding concerns.  We started by mouth, then lost that.  Then we fed his stomach, then we lost that.  Now we feed his intestines.  If we lose that we have 1 option left, TPN.  And for Eli that's VERY dangerous.  With his blood clotting disorder and lowered immune system it's not a good/safe option.  We love his GI doc and do wholeheartedly trust him to come up with the best plan, but it's still scary.
The next issue we are currently dealing with head on is Eli's eyes.  They are struggling.  He is having trouble seeing down and to the sides.  So he doesn't realize when things are on the floor or even see low tables or such.  Last night he missed the fact that his 5 year old sister was on the floor and fell over her.  He runs into tables at the docs office, and cuts corners short all the time.  We are constantly running in front of him to move things out of the way so he doesn't fall.  We have already put red duct tape over all the uneven surfaces to help him better see them approaching, but since looking down is a struggle it doesn't always help.  He did get his new lens put into his glasses but they don't help with the looking down or to the sides.  We are hoping to get some better plans in place to help him be more independent with moving around. 
We are waiting on his new leg braces and hoping they will be in soon.  His new ear molds are in, so he's back in his hearing aids full time as well now. 
He is on 3 new meds from his dermatologist.   His charcoal cultures of his head and eye came back showing something basically like ringworm.  So he has to go on antibiotics for 8 weeks, and these can have some not so great side affects, like hearing loss.  The other 2 new meds are creams.  It seems to be slowly working and he doesn't seem to be as uncomfortable anymore.
Lastly he was transitioned into a pediatric hospital bed.  We needed to be able to keep him safe and we aren't able to do that any more in a crib.  We were able to put his speciality mattress in the hospital bed and my dad and Bob had to make some adjustments to make sure he's safe but it works.  I HATE it.  It is one more medical item in his room.  I loved the wood crib.  It looked so "normal."  Not that we really know what normal is.  Heck yesterday at the GI doc I got all excited because she restocked my sterile containers and biohazard bags.  My supply was getting really low (just had a few U-bags left). 
As of right now Eli has surgery coming up on the 19th of June.  This will be the last surgery for his testicles as well as the final hernia repair.  The last one was a rough recovery so we are hoping now that he's a bit bigger and stronger he will get thru it easier.  Time will tell. 

Bob and I are ok.  We are exhausted.  Life with Eli alone is exhausting, and then add on the other 4 kids and some days it's near unbearable.  I have my random times where I just start crying and there isn't a damn thing I can do about it.  Bob and I are leaving town tomorrow morning.  We will be gone for 3 days and 2 nights.  We are going about 40 miles away to a bed and breakfast.  It will be our first time going away even for an evening since Eli was born.  We NEED this time.  As much as we will miss the kids, we are beyond excited. 

I will get more updates up soon, hopefully.