Tuesday, July 31, 2012

Fears and Quality

We are potentially facing one of our biggest GI/feeding fears.  Eli's body is struggling.  We are using the J tube to much and his body isn't handling it.  We had hints that this might be starting a few months ago and it's getting considerably worse.  He is flinching when we push meds and fluids, and having alot of diarrhea, especially after larger doses of meds/flushes/feeds.  We obviously have no choice but to use the J tube (which feeds right into his intestines), as his stomach doesn't work and hasn't since November of 2010.  Eli is having so much diarrhea that he is struggling to pee as much as needed, as well as a massive skin breakdown.  He is screaming when he has a movement and everytime we need to clean him.  The doctors are concerned.  His GI has decided that we need to move forward with an Upper and Lower Endoscopy.  Eli will be admitted next Tuesday and will have the procedures on Wednesday.  His complex doctor and I spent all day emailing back and forth yesterday and he is on our side.  He agrees that this is a major quality of life issue.  He believes we will need to accept the risks associated with a central line to allow for quality of life and pain reduction, as it's causing Eli alot of pain.  We are back to giving tylenol frequently and have greatly increased skin care and creams again.
As much as the risk of a line scare me, hearing my son wake up in the middle of the night screaming in pain scares me too.
We are also continuing to have issues with temp control, and haven't seen anything under a 100 lately.  Between the temps and the hydrations issues he's been pretty fatigued as well.
We will update more as we know more.

Friday, July 27, 2012

End of the Week

Eli had a fairly quiet week appt wise.  We had PT, OT and sign this week in home.  He got his new glasses (which didn't fit and we have had to reorder).  He also got his new ear molds in for his hearing aids.  Today we meet with his dermatologist to follow up on everything going on with his skin.  The meds worked on the tinea and it is completely cleared up.  His HFM is looking better although his toes on his left foot are really struggling and the doc gave some suggestions.  The biggest issue is the rash on Eli's face.  We've been battling it for almost a year now and nothing is helping.  It's spreading onto his jaw line as well onto the bridge of his nose.  The left cheek is horrible.  The doc is no longer sure what it is or what to do about it.  He has prescribed a stronger med and if no changes in 2 weeks then he's sending Eli to the plastic surgeon for some biopsies that will have to be done under anesthesia.  We are hoping it doesn't come to that. 
Here is the main one on the left cheek.

Here are all 5 of my kiddos a few days ago looking super cute!

The olders are all pretty good.  We have stayed pretty busy this week.  Emily has been working hard on her violin.  Jace has enjoyed these slightly cooler days and has been outside alot with his friends.  Ben has been out and about some with his respite worker.  He met with his primary med doc today and she has decided to put him back on his primary med.  The school hated it because he stims more on it they claim but his OCD and anxiety is so much better on it.  His doc is ordering a strong sensory diet while in school to help.  Ari has been pretty good.  Talking up a storm like always.  This last week she has taken to calling Bob "Daddy" and it melts his heart.  She bats her little eyes and says it and he loves it!  She's all about him, always has been. 

I've been working out every morning.  I've started going to the gym at 6am to be able to get my workout in.  It's not been as rough as I expected and I've still been able to get my 3 miles in with my run/walks and I even got my leg workout in this morning!

That's about all for now.  I will update more soon.  We are in the final drive of the summer.  Jace's 9th birthday is in 2 weeks and school starts in 3 weeks!  It gets to be a busy time around here!

Oh I almost forgot.  The final addition to our family (for now according to my children)
Eli's puppy, Ophelia, joined us yesterday.  Eli and Ophelia picked each other out a few weeks ago and she was finally able to come home yesterday.  She is a great pyrenees.  They will go thru training together for Ophelia to be trained to be Eli's helper.  They both stay close together all ready and love each other so very much!
Eli giving Ophelia kisses and love

Ophelia on her car ride home.

Monday, July 23, 2012

Quick Early Week check In

It's been a fairly quiet few days, which is incredibly unusual.
Eli's neuro appt went well.  He's happy with the advancements Eli has made with walking and with signing.  His last EEG didn't show any seizure activity, but did still show "overall reduced background waves".  Which we already knew. 
We went out of town on Saturday and had a great time seeing friends that we haven't seen for awhile.  It's always nice to reconnect with people and feel at home!  Sunday was church and we spent some time getting some basics done around the house.
This morning was back to the gym and we got 3 miles in this morning.  We again ran every other lap and the kids did great with it.  Then it was off to Emily's violin lessons.
The rest of the day was spent relaxing.  I actually got to watch 2 whole TV shows today.  I'm not even close to caught up but it was nice to get to lay low for an afternoon.  I even got some housework done and a bit of rearrainging of furniture.  Tonight was some super yummy pumkin waffles with apple cider syrup.  Always a popular meal! 
The rest of the week is fairly light appointment wise.  Eli has therapy, we have a meeting with the nursing agency, Ben has a med recheck, Eli has the glasses fitting and the audiologist, and we have our movie of the week and an exotic animal event at the library.  Not counting our 4 days of running at the gym.  I know to most that doesn't sound very light, but for us it is!  :)
I will update on Wednesday after our exotic animals event with some pictures!

Thursday, July 19, 2012

A Few Pics

Below are a few pictures from this evening.  At the end is a link to pictures from our vacation to Wichita.
Ariana hanging out in Eli's playroom enjoying some Ipad time while he's off playing.

Eli in his favorite chair watching a signing times movie.

My oldest 3 hanging out in the living room all playing their kindles.  They weren't thrilled that I made them stop long enough to smile.  lol.

Tebow exhausted from a busy day but atleast somewhat willing to look at the camera.

Tibby worn out from her busy day as well.

On the left is Stripes and on the right is Speckles.


What a few weeks it's been. I will work backwards from how I normally update!  :)

Emily ~ She's doing pretty good.  She's busy with violin.  She has lessons each week and she practices daily.  You can really hear the improvements when she plays and her teacher has commented on them as well.  She is still going to counseling and had an evaluation yesterday.  They are going to begin some basic testing as well as started her on a small dose of a med to see if that helps a touch.  She has been getting together with a friend in the neighborhood often lately and has had alot of fun getting to know her.  She is looking forward to starting 6th grade soon and continuing her time in strings.

Jace ~ He has been on his new meds for about 2 weeks now.  They have made him incredibly tired during the day and he's struggling to sleep some during the night.  He's had 1 upset stomach day, but so far doesn't seem as though he's had alot of GI changes.  He's definitely been calmer and hasn't had as many extreme moods, or violent behaviors.  He's been inside alot over these last few weeks as his body adjusts.  He's still been out some playing with friends and is still enjoying his electronics and such.

Benjamin ~ He's a month into his new meds and the doc is leaving him on this dose until we meet with her next week to figure out if there are any changes she wants to make.  It's helped a bit, but he's still struggling with some issues.  He's enjoying spending time with his new respite worker and they've been out exploring some new activities in the area.  He's also continued swimming alot, as he says he's a fish and it's his favorite thing to do.  He's also been learning how to make paper airplanes and has really enjoyed that as well.

Ariana ~ She's been busy playing with her neighbor friends and learning to ride her bike.  She's doing well with the training wheels and can get back and forth on our street.  She's super excited for the start of kindergarten and asks every day when it's time for school.  We are considering cutting her hair a little bit before school, but she's not so sure.  Currently her hair is at her lower back, close to her waistband on her pants. 

Elias ~ He's like alwasy my incredibly busy man.  We got past surgery recovery and he finally leveled out on his weight.  We left on July 5th to head to Wichita for vacation.  It was me, the 5 kids, and Eli's nurse.  We had been there for 15 minutes when my dad came home from work.  The kids and I were all standing at the garage door and Eli was waving to grandpa.  Between his balance issues and his problems with seeing he lost balance and stepped right out of the house and fell down the concrete garage step.  He wouldn't stand on his leg so we finally made the choice to go into the local ER there.  He wasn't crying and they stated that kids cry if they break something.  So they took an xray of his foot while he was in his wheelchair and sent us home.  The next day he still refused to toe touch and was in pain if we touched his foot or leg.  I called his old pediatrician and she got us right in.  They xrayed his leg from hip to toe.  Sure enough his tibia was broken.  They casted him there and told us to see his orthopedic surgeon the next week.  By Saturday Eli had a high fever and napped for over 4 hrs.  We ended up coming home early.  We met with his medically complex doc on Monday and discussed quality of life.  Eli's struggling to keep his body temp and hydration under control.  The more fluids the more his GI system is struggling, which makes him even more dehydrated.  We discussed moving forward with placing permanent access.  His doc is talking with his cardiologist and hematologist for permission to move forward with this process.  He scheduled us with Eli's orthopedic surgeon for that Wednesday.  On Tuesday Eli woke up covered in blisters and rash and his cast leg was so swollen that his toe was gray.  Called the orthopedic clinic and they had us come right in.  They cut the cast and placed a walking boot.  The PA thought it was a staph infection so she sent us to the ER.  The ER said it was Hand, Foot and mouth disease and sent us home.  We met with the orthopedic surgeon the next day.  She said that not only did Eli fracture his tibia but also his foot.  She left him in the walking cast until the blisters went away.  He will re-check in with her on the 10th of august.  So since then he did get his cast put back on.  It's a waterproof cast that allows him to swim and bathe.  He is able to weight bear now and is slowly walking thru the house.  The rash is almost all gone.  We are still waiting for everyone's decisions on the access for Eli.  He also got fitted for his new glasses and they will be in next week.  We met with the audiologist this week as well and they fit him for new ear molds.  We may need to make some hearing aid changes as well depending on how it goes.  Today we meet with the neurologist.  I'm always a bit leary about this appointment.  We will see how it goes.

General ~ Our household has again grown.  Tebow now has a playmate.  Her name is Tibby.  She's a purebred mini aussie, just like Tebow.  She's only 9 months old, so a bit younger.  We also got a bird.  He's a zebra finch, the kids named him Hopkins.  Lastly Mr Eli will be getting his puppy in 3 1/2 more weeks.  She is currently only 4 1/2 wks old.  Her name will be Ophelia and she is a great pyrenees.  She will go thru training with Eli to be his "helper puppy".  Ophelia and Eli picked each other out!  Our household is busy and the kids are loving having their animals.  We don't regret it at all!

I will get more updates up soon.  This weekend we are going out of town but will update next week.

Sunday, July 1, 2012

Sunday Check In

Eli did in fact continue to struggle with pee.  We ended up at the surgeons office first thing Monday morning with a sore, swollen boy.  He of course peed at the office.  He remained swollen and struggled to pee alot over the next two days but by wednesday it was back to normal...mostlly.
Now we are left struggling with the diarrhea, lack of pee, bordering on dehydration, temp control issues, and the heat rash is back in full force.  He is also really off balance and struggling to keep himself up and steady.  He has lost 1 1/2 lbs this week with all of his heat and hydration issues.  This isn't something that we can let go until the 9th when we meet with his medically complex doctor.  So I will be calling Monday so we can get a plan in place.  Bob and I have discussed our thoughts, and we know what our home nurses think, so we will just have to see what the doctors thoughts are.
Eli also met with the new eye doctor this last week.  She says that his lenses and glasses need changed and she also wants him patched for 4 hrs a day/7 days a week.  We will begin working on the new glasses this next week and then will begin patching.

The olders are good.  Busy as ever.  Emily has been working hard on her violin lessons and we are really hearing the improvements.  Her teacher was really happy.  Jace has been busy outside most of the time.  Benjamin has been busy with his respite worker, mostly swimming every day, although he has gone to the jumpy place, zoo, and arcade a few times.  Ariana has been playing with all of her new barbies as well as snagging the IPad every chance she gets. 

This next week Eli has an appt with the orthopedic surgeon.  We haven't seen her in 6 months and i'm looking forward to her thougths now that Eli is walking and that he has his new braces. 

I will update more soon.