Trying to Stay Afloat

The title of my post pretty much sums it all up.  I'm sure most of you reading that immediately think money.  If you did, you would be partially right.  Money is tight.  As most of you know Bob was laid off right after we moved here to KC.  So obviously money has been very tight.  I am helping out a friend who works for a moving company and doing a bit of packing.  It's nice to get out a bit and meet new people, and help earn a touch of money to help out the family.  It's not an actual job.  It's something I've done 2 days and will only do once in a while when she has a packing job and I'm able to sneak away from Eli's very demanding schedule.
HOWEVER...money isn't our big issue.  It's life and health and all of those things in between.  We are exhausted.  We are exhausted for us, for our kids, for our little man, and for all of the families out there that we support and love oh so deeply.  It's a constant battle to keep our little man going, let alone the rest of our household.  We are exhausted, all 7 of us. 
My heart breaks for us, for my tiny man, for all of the parents and fellow tubies and mito kiddos, for all of the "normal" siblings out there, and for everyone else involved in our lives.  The pain that our community faces on a minute by minute basis is overwhelming. 
At our care plan meeting while Eli was inpatient, our team discussed sooo many things with us.  They discussed that nothing was going to be a miracle cure, that we had to always remember that Eli's underlying diagnosis trumps all others and that "typical" cures for all of his side diagnosis's won't work like they normally would because of the mito.  They reminded us like always that we have to settle for less, less in everything from medical treatments to quality of life.  They talked about how they know we didn't pick this road, how hard it is to have a kiddo like Eli and how much of a daily struggle it is to keep him going.  They acknowledged how much work it was, and offered up expanded nursing and more round the clock care.  They told us how good of a job we were doing and they said they can only imagine the amount of time, work, and energy it takes to keep afloat with a kiddo like Eli.  Currently we have chosen to turn down the increased nursing hours.  We feel like we already have sooo many hours a month (345 hrs a month) and we aren't even using all of them.  The doctors don't understand how hard it is to find good nurses.  It's simply not worth it.  But none of it changes the fact that we are freaking exhausted.  No I'm not saying we are going to give up, not like that's even a choice in my opinion.  We are simply saying we are worn out.  It takes everything we have in us to get up each morning and do it all over again.
We currently have many friends struggling right now...when don't we.  One of them is my nearest and dearest "little sister" who I have known since her mother was pregnant with her, and the other is one my best friends, the person I call when I feel like Eli's world is crashing down upon me, the one who gets it with no words needed.   I feel as though I'm letting them down.  I haven't been available, I haven't been supportive, I haven't checked in like I should, I haven't physically been there by their sides.  I've been so wrapped up in simply keeping myself and my family moving in a forward going direction.  I feel as though I have nothing left in me to give.
Some days it's a minute by minute kind of day.  Today is one of those days.  I stayed afloat today...

As I know everyone wants kiddo updates...  :)
Emily~ Tonight was her final Shakespeare performance.  She did great and said all of her lines beautifully.  She had a great time over these last 3 weeks and learned alot!
Jace~ He's been a super busy man.  He went swimming today and helped a friend nail down some 2 by 4's.  He loves working with tools.  Jace's new meds seem to be slowly working.  His doctor doubled the one a few weeks ago, and they added a new one last week.  We are hoping to really be making progress within the next few weeks.
Ben~ He's been doing decent.  He's been stimming alot more lately, but hasn't had tooo many outburst.  He also went swimming today, and seems to really enjoy the water.  He's also one 1 new med, same as Jace, and will be getting his other med tweeked in the next few weeks.
Ari~ She's busy as always.  She went swimming as well and got to water flowers and help out in the garden at a friends house today.  She enjoys being outdoors and loves checking everything out.  She also fed the birds and thought that was beyond amazing!
Eli~ He's still struggling.  He is bloated and swollen to the point of uncomfortable.  He's back to bright red and splotchy and sweating constantly.  He ran low grades all day yesterday and has had a bit of a higher heart rate.  His sugars have been good so that part is a plus.  He has been alarming more at night lately, but we are thinking that's mostly due to the heat.  His sedation MRI is coming up on Tuesday so we are nervous about the sedation and the results.  The anesthesia team called today to go over his NPO orders, and I'm not fond of what this anesthesiologist has put into place.  I will be talking to his doctor on Monday to see if we can get the orders changed around a bit.
I'm exhausted so I'm going to close for now.  Going to try and watch some TV for a few and then it's off to bed to do it all again tomorrow.
I need a vacation...heck we need a vacation.  All 7 of us (and Eli's nurse) need to just disappear into the wild blue yonder for a full week.  hmmmm....now to just figure out which tree will be growing the money for this dream!  :)

Home

Yesterday was supposed to be Eli's MRI.  They got the IV going, stopped his feeds, and sent us down to MRI.  We got there and they wanted to do a KUB to verify that the J feeds weren't going into his stomach.  They read the KUB and claimed that his J tube was in his stomach not J.  So we went back up to his room and they waited to go down to IR to get it changed out and replaced.  The doctor immediately said his tube isn't in his stomach.  So the idiot that read the KUB misread and we could have had the MRI after all.  I was so frustrated.
They decided to simply do the MRI outpatient.  The hospital was able to get Pfizer to donate 1 month worth of Eli's growth hormone($3000 worth of meds!).  So we were able to come home!!  We are so happy to be home. 
We will be at the hospital ALOT over these next few weeks but atleast we will have some time home!
Tonight my dear hubby has planned to take us all out to dinner.  The 7 of us rarely EVER go out so I'm excited to get to tonight!
More updates and some pictures tomorrow

Quiet Weekend / Start of Week

Day 7
It was a fairly quiet weekend.  Eli started his Growth Hormones and did pretty well with them so far.  They have raised his BS a touch and kept his BP slightly low, but nothing to concerning.  The docs have also decided to up his feeds a bit.  We did a calorie increase yesterday going from 22kcals to 24kcals.  Still mixing with the pedialyte which adds 3kcals more per ounce.  He seems to be doing pretty good with it.  They are concerned if we don't get his calories increased decently, that the growth hormone will kick in trying to push his body to grow, and if Eli doesn't have enough extra calories to support that his body will break down things it shouldn't for energy.
Eli has had alot of grouchy time these last 2 days.  He's done with this entire hospital stay.  Normally when we are here he's actually sick.  But right now we are here solely to get this shot every day.  That's causing for a bored grouchy man.  I totally get it though!  :)
Today is hopefully Eli's sedation MRI.  Since he has the growth hormone issues and the front half of the pituitary gland not working he has to have the MRI.  There is a slight chance that a tumor is what is causing all of these problems, although they don't believe that is the case.  He will also be getting his GJ tube swapped out today.
I will update more as I know more!

Another Diagnosis Means Hospital Life Continues

Yesterday was a long day.  Eli had his endocrine/adrenal testing.  It started with having to get an IV placed which is never an easy task with Eli.  Then he was given the first phase of meds.  They caused his blood sugars to go all over the place.  The second phase brought another medicine.  It messed up his blood sugar, dropped his blood pressure really low, made him sweaty, and put him to sleep.  He had to be fasting for this test and someone screwed up and didn't get fluids ordered.  By the time the test was done his body was bouncing back.  He wasn't peeing and ended up needing bladder ultrasounds and IV boluses.
Today began with lots of docs and checkins and such.  This afternoon was his team meeting.  There were 10 plus doctors there.  His endocrine tests came back showing a problem.  He has a growth hormone deficiency. The entire front half of his pituitary gland isn't working.  He will be started on growth hormone injections tonight.  Normally they do 5 a week but Eli requires them 7 days a week.  He will remain inpatient until the meds are started and going properly AND until they have all the approvals thru insurance and the meds ready to deliver.  So we have to soooo hope that there are no denials or appeals as that would mean we could be here for months.  His endocrinologist doesn't believe it is safe for him to be outside of the hospital without this medication. 
They believe that this issue is causing alot of the sweating, dehydration, fluid retention issues, inability to control his body temp, and even some of the fatigue.  The endocrinologist did caution us and all of the other doctors there to remember that Eli does have an underlying issue, Mitochondrial Disease, that is also contributing and may block the meds from being a "miracle cure".  Right now we are just hoping for some relief.
We have a long road ahead and everyone admits that.  There were alot of differing opinions and plans of care ideas at the meeting, but the difficult road ahead isn't one of them.  There was discussion about us not choosing this road we are on, but having to follow it.  How hard it is and how rough it is to see him suffer.  How there are no other options and how we simply have to do what we can.  I hate these kinds of conversations, and they are a real struggle to get thru.
We got moved to a more long term stay room with more space and a bathtub for little man tonight.  We also got moved to a new team that has residents and such available at all hours of day and night, as well as an attending available during the day.  We will see how it all goes.  Bob brought up the 4 older kids and we did pizza for dinner and now everyone is watching a movie.  Little man is exhausted but enjoying having time with his siblings.
We will update as we know more.  Right now we are as always trying to learn how to cope with all of this new information the last few days and how to continue to be as much of a family as possible while having Eli and I live inpatient.

Lots of Info

HOLY COW.  It's been a heck of a day. 
Eli's day started off with a meeting with his inpatient lead.  She has some plans and is also coordinating a meeting with ALL of Eli's doctors.
Pulmonologist ~ Wants to do some basic sleep study type things.  Wants more O2 monitoring and wants to figure out why on CPAP Eli seems to do worse, not better.  Also wants to get the carseat issues figured out.
GI/Nutrition ~ Going to be working on changing his feeds.  Trialing no pedialyte, as they are concerned it's causing alot of the swelling from all the extra sodium. 
Endocrine ~ They have quite a few ideas as to what they think is going on but are going to be running over 16 tests tomorrow to try and figure it out for sure.  They have also changed his sugars from every 6 hrs to every 2 hrs.  The doctor is pretty aggressive and pretty thorough so we will see how it goes.
Eli met with Speech, OT, and speech/audiology.  They got all of his therapies immediately regoing so that we don't lose any of the things we've been working towards.
Eli also got his AFO's today.  They were able to get us in a few days early since we were already inpatient and they had a cancel today.  He wore them for about 1 1/2 hrs.  Hoping to get a bit more time with them on tomorrow.
I've left our biggest visit for last.  Hematology came by.  They have all of his lab results finally in.  His genetic chromosomal testing came back abnormal.  He has a condition called Factor V Leiden.  This causing his body to struggle with controlling when it stops clotting.  It increase his chances of having more blood clots, along with his risks of already having a clot and his other issues.  We weren't expecting this at all.  We all assumed that all of the testing would come back clear. 
Eli is exhausted this evening and so are we.  There were alot of meetings today and alot of information.  Tomorrow we begin testing at 8am and it will apparently go most of the day.  I will update when I'm able.

Rough Night

Tiny mans blood sugars dropped around 4am.  Doc paged.  Wanted a ton of labs plus an IV to run some d10.  1 1/2 hrs later we still couldn't get labs or an IV.  sugars at this point fly up the opposite direction.  Doc says hold on IV and labs and give him a break.  They will recheck his sugars at 7am.  Nurses want to have a serious talk with the doctors about needing a PICC line at minimum.  I'm not looking forward to the talk but my poor little man is miserable and it's a major risk.
Will update more this morning as I know more.

Admitted

My little man was admitted this afternoon.
We met with his medically complex doc and talked for quite a bit.  He's concerned about the swelling.  He wants to figure out if it's caused by the adrenal system, his kidneys, or his heart.  He also wants to get his feeds and fluids situated as Eli is struggling with these still.
We got here to the hospital and found out that the NP who had read his CDiff test was wrong.  Eli does NOT have Cdiff.  So now there is alot of confusion as to why he has pieces of his intestinal wall in his diapers.  Something wacky is clearly going on with his GI system and they aren't sure what and why.
Eli is beyond exhausted at this point and it's just crying and crying and crying.  He's swollen and grumpy and tired.  Will update tomorrow when we know more.

Quick Saturday Updates

Dr KT called late Friday afternoon.  He doesn't want to admit on Monday as he is finishing up a nursery rotation and he wants to be in charge of a direct admit, not a voluntary admit.  So he is having us come into the office on Tuesday right before lunch and he will do a direct admit from there.  He is admitting Eli to the chronic care team at CMH.  This team handles the long term resident patients.  He feels that they will be best suited to help Eli with what is going on.
Right now we are just working to keep up with his hydration.  He's had alot of diapers today and his nurse has really had to work to keep up with replacing the fluids, without losing calories.  He's still been running his low grade fever.  We are hoping the docs can get it all figured out.

In other news...Emily has finished her first week of Shakespeare and has enjoyed it.  They are working to make costumes and she's learning her parts.  All of the children have been in rare form lately.  They aren't looking forward to this upcoming admit for Eli and are struggling to deal.

Bob and I went out last night.  An incredibly dear friend of ours kept all 5 of our kiddos.  Their little girl is just like Eli so she's super familiar!  Bob and I went out with friends to dinner and dancing.  We had a fabulous time.  We didn't get to bed until 2am and got to sleep in until 8:30....which for us is incredibly late.  We went out for breakfast together and then collected our children!  :)  It was our first time in almost 20 months to not have any children for an entire night.  We are so blessed! 

Results In

The same doctor that thought we were all nuts and that Eli couldn't possibly have Cdiff...the same doctor that called me yesterday morning saying that since 1 result showed positive and 1 result showed negative and she was just certain that it wasn't positive, called me and said it's negative and he doesn't have CDiff.  So this morning this same doc calls and says oooops.  The 24 hr culture came back and sure enough he does have Cdiff.  Humph.  So Eli does in fact have Cdiff and we have wasted days that we could have already started the medicine. 
Meds ordered and being delivered.  We will update as we know more.

Admission Scheduled

Today we met with Eli's GI doc.  There was alot of conversation and we were there for over 3 hrs.  He is concerned about Eli's bowel issues.  Eli's test don't appear to show CDiff.  Which is good.  The bad news is he apparently is still passing pieces of his intestinal walls because his GI system is so stressed out.  He's also having alot of diarrhea still and his bottom is so swollen and red.  He has a yeast infection on his bottom from all of it.  His urine is showing problems with clearing out his system.  With the amount of fluids he's getting he should be passing more waste and he isn't.   Which means his body is holding waste.  His kidney functions look ok though.  He's still struggling with hydration and the more fluids we push the more his GI system freaks out.  He's still sweating and his body temp is struggling even more to keep control.  When we got to the doc he was as red as a lobster from head to toe, with heat rash all over, and over 100 degree temp.  His docs talked while we were there and have decided that all signs and symptoms point to an adrenal crisis.  They don't believe that his adrenal system is properly regulating hormones and levels and such, which is making it impossible for his body to figure out what to hold, what to dump, and when to do it all.
They have decided to begin a long term admission on Monday.  They don't want to start one mid week as it's hard to get everyone organized.   So the rest of this week they organize and make plans and we admit monday.  Tons of phone calls, tons of paperwork.  His goals for discharge are HUGE.
He has to be able to gain steady real weight.  They've given him his FTT back.  (failure to thrive) as he isn't gaining anything but bloat weight that he loses the next day.  He has to be able to maintain his hydration without upsetting his GI system.   We have to have the excessive sweating and adrenal issues under control. 
To some these may sound like easy goals but for a kiddo like Eli who is already so fragile, these goals are massive. 
Eli's not thrilled and isn't feeling well at all.  His body is bucking everything right now and not handling much. 
We will update as we know more.

Another threat of admission

Hemoc~ We've gotten Eli's 1st repeat round of testing back.  The test that shows if he has a 15% chance of a blood clot in the next year came back negative this time.  His hematologist thinks that it was so high because of the trauma getting the blood.  We were all excited that we didn't need blood thinners and his doc said don't get excited...we just don't need them yet.  So we keep waiting for the rest of the tests but his doc isn't optimistic.
Eli met with his complex kids clinic today.  He met with a nurse practioner.  It was a mess.  First she wanted to admit him.  She is concerned about his bowels and hydration.  We voiced our concern about admitting him simply to force his docs to talk and make a choice.  We were just inpatient last week and they were going to get all the docs on the same page and that it didn't happen.  We explained that we can't admit each week to try and make his docs communicate and get a good care plan.  So she ultimately agreed.  She has added 2 new meds and again wanting to change around some of his feeds/fluids.  She scheduled a 2 plus hour with his main medical complex doctor next week, and is also working to arrainge a care team meeting where all of his main docs meet in 1 room at the exact same time. Also some discussions need to happen on the fact that there were 2 pages of orders from Dr Shoffner and nobody is following them or letting me know what they are.  hmmm.   So we will see how that goes.
In the mean time they are running lab work as she's wondering if he has CDiff.  If that's the case he's a guaranteed admit.  We are hoping to still get those results tonight.  He's running a low grade again today and we are struggling to keep him cool and hydrated with this massive heat.  Our AC just isn't keeping up.
We will update as we know more.

Hemoc Called

Eli's hemoc called.  The test that was to check his possibility of having another blood clot in 1 year came back.  We were told if his was higher than 15% then he was back on blood thinners.  Well his is so high that they are rushing him in for am emergency ECHO and ultrasound.  They are concerned that his blood clot in his heart, that was supposedly turned into a calcified leason that was growing is possibly a blood clot, potentially more.  The risk for him throwing clots right now, if not already is super high. His hematologist is concerned and has called the cardiologist.  We are scared, and his hemoc PA said rightfully so.  We go in at 1:30 for echos and ultrasounds and tons more lab work.  We will update more as we know more.  please keep our little man in your thoughts and prayers and please keep our family as well...we are exhausted and feel like we are nearing the end of what we can emotionally, mentally and physically handle.

Gi for Jace and Hemoc for Eli

Today was a long day.
This morning Jace had his 1st establish visit with his new GI doc.  We decided to have him see the same GI doc that Eli sees for ease of purpose and he's a damn good doctor!  We discussed Jace's GERD and CVS, and he believes that Jace most definitely has IBS as well.  Which really isn't a shocker at all.  He wants to continue with the same meds as they seem to be working pretty well.  He wants deeper monitor on the GERD episodes and this will help him determine when he wants the next scopes and biopsies.  Will recheck in 1 month.
This afternoon my little man had his appt with Hemoc.  They had set this up for approximately 1 month after ending blood thinners.  It was supposed to be an open and shut case appt with basic lab work.  Not so.  They discussed multiple things, including the confirmed Mito.  In light of how fragile Eli's body system is he is completely changing his plans.  When we get our next line he wants 1/2 strength blood thinners.  He's also running a special test to check the probability of having another blood clot in the next year.  If this comes back above 15% we are back on blood thinners.  Lastly if Eli has 1 single blood clot then he's on blood thinners guaranteed for life.  He will continue to follow Eli closely and wants us to make sure that ALL docs talk with him when there is any discussion on a new line.  We weren't expecting this at all.  He ran a TON of lab work.  They needed more blood than Eli's body will allow, so we hit his body max at 20ml.  It took over an hr, 2 sticks, and 4 nurses to get all of it.  He's beyond exhausted and pretty dehydrated from the sweating, shaking, crying and blood loss.  Hoping for a quiet evening at home to let him rest a bit.
More coming this week, but for now that's all.  i'm exhausted.

Home from the hospital

We are home.  Eli got discharged this afternoon.  We really loved his inpatient doc this time and were very lucky to have gotten onto the silver team with him!  Eli's blood sugars are low enough to earn him the title of hypoglycemic, but not danger level.  His mito doc, Dr Shoffner, does however say that they are going to make him feel way crappier than a normal kiddo.  Eli now owns his own glucometer and all the supplies that go with it.  He will test 6 times a day, and any others PRN.  There is a base plan in place for when his sugars drop, and a more detailed plan will be made over the next few days.  Dr Shoffner also wants his fluids increased by a lot.  He wants 120ml/ per kilo, and currently Eli is getting 96.8ml/per kilo.  So we are way short.  The likelihood that Eli's body can handle that kind of increase is pretty slim.  There are going to be meetings and talks tomorrow to try and figure out what next.  They are also pushing endocrine to get him in quickly. 
Tomorrow Eli has his hematologist and we are looking forward to what they have to say about his clotting and anemia. 
As of this morning Eli is running a super low grade, and is really sleepy.  We are hoping he didn't pick up anything inpatient.  Only time will tell.
We will update more as we know more over these next few days.

Quick Admit Update

Docs rounded, and so did nutrition.  They did blood sugars every 1 hr this morning and around 2pm switched over to every 2 hrs.  Now that he's off his feed for his evening break they are doing every hour again.  His sugars are dropping now. 
Doc is simply monitoring all day.  Tomorrow we will have long chats with his pediatrician, nutrition and endocrine to figure out what is going on and what we need to do next.  He's still got a rash on his face and arms and a touch on his legs.  He's still red and a bit sweaty, not as clammy.  He's incredibly sleepy and has been asleep or sleepy fussing most all day. 
We just got back from the playroom where he spent almost an hr playing.  Now he's laying back on his dad in the rocking chair watching a baby einstein video.  Hoping he is able to get some decent sleep tonight.  As of right now bob and i are at 38 hrs awake with MAYBE 3 hrs of cat naps.  So we are dragging. 
A dear friend of ours is sending us dinner tonight and a few extra meals to help cover food for the next day or two!  We are so thankful to have amazing friends in our lives!
We will update tomorrow as we know more.

Eli's admitted

Eli's blood sugars have been running low since Friday evening.  He has had alot of episodes of sweaty clammy to go along with it.  We called the doc yesterday when his sugars had consistently stayed low.  She had us bring him up to CMH.  We packed him up and made the drive from Wichita into KC.  We got to the ER around 12:30am and were admitted around 430am.  Waiting on the doctors to round this morning to figure out what next.  We will update more when we know more.