Sleep Study

Eli had his sleep study last night.  He didn't do so well.  He did great with letting them hook him up, and he fell right to sleep.  They have to have 6hrs on the monitor and 8 is a great number.  Eli slept for 10 1/2 hrs!  The tech went on and on about how perfect he was and how good he was and how absolutely adorable he was!  :)
The bad news is he failed the test.  His low O2 is set to alarm at 92%.  Eli spent most of the night in the low 80's and 70's and his low was 62%  He had central mixed apnea spells.  Central apnea is when the brain doesn't tell the body to breath.  The mixed is when his airway collapses and doesn't allow the air to move.  So not a good thing either way.  The beginning of the night he did okay but within 1-2 hrs he began to struggle.  By the mid point of the night all of his O2 reading were lower than his alarm setting, and by early  morning/morning he was in the low 70's and 60's.
The report is being sent over to his pulmonologist but mostly likely what will happen is BiPap and an apnea monitor. 
He's exhausted today. After struggling that much all night with NO oxygen he's beyond exhausted today and has spent alot of time napping.  I'm tired too.  He slept great but I definitely didn't!
So we are now back to waiting to find out what next.  Will update as we know more.
Here are 2 pictures of him from last night.

Sunday Morning Already

We have been so busy this last week.
Emily~ She's doing well.  She's been busy with school and a new math program that they are working on.  She also made a newspaper with a friend for a class assignment.  They wrote an article and did a great job.  It look very professional.  She's getting really good on the computer.  She's been listening to alot of new music lately.  From the sounds of a few of the songs we are going to have to start monitoring and making choices on some of them.  She's not super happy about that but a few of the songs don't sound like something she needs to be listening to.  She's hitting that age where it's constant attitude.  We can definitely tell the hormone changes occuring.
Jace~ He's just go go go.  Yesterday he spent most of the afternoon outside playing with his friends and riding his bike.  Outside is when he's the happiest.  He is definitely going to be an outdoors man!  :)  He's been working with speech and his additional support.  He works on his handwriting each day with a special "helper".  We have already seen some changes.  He has been getting in trouble at school lately for lying.  It's an issue we are also seeing occur at home.  Something we are going to really start hitting hard on and stressing strongly to him that this can't continue.
Benjamin~ He's going thru a rough patch at the moment.  His meds aren't quite up to the correct levels and situated yet.  We know it takes time but this is always the rough period.  His OCD/paranoia have been pretty high.  Not fun.  He's doing well with his speech at school, and his new social skills program that he is working thru.  Ben is really enjoying his gymnastics and his teacher is really impressed with his progress.
Ariana~ She's pretty good.  Unfortunately she watches alot of Ben's behaviors so we see some of them crop up, and we are never sure if she's simply mimicking him, or if she actually has some of the same "tendencies".  She will have her next evaluation at the beginning of the year so we will see how she's doing.  She's loving her Kids Day out and will continue!
All of the kids have finished their 1st round of swim lessons.  Emily is learning to swim under water.  She has 1 skill left to master to move on to the next class.  Jace has mastered about 50% of his skills and has a little bit before moving on, but he's made great strides this month.  Ben did amazing.  He went underwater in the deep end to collect pennies off the bottom of the pool.  His teacher was super impressed.  Ari also did really well.  She put her face under to get pennies from the bottom and even did a back float all by herself.  All the kids will go right into the next round of swim lessons right after thanksgiving.

Eli~ He's pretty good.  He's getting so darned big.  He's made alot of really big developmental strides.  He's rolling all over the place and getting up on his hands and knees.  He's not crawling, but he is rocking back and forth a bit.  I am betting by January he will be crawling.  Not sure what we will do with all of his tubes.  He's already getting so tangled in them when he rolls.  His birthday is in 9 days and I'm not ready.  My tiny man is going to be 1 already.  His lungs sound pretty good.  They decided to put him on a full dose of antibiotics to treat another round of pertussis.  He meets with his cardiologist this week and I'm really nervous about that.  He also has his sleep study coming up this week and I'm looking forward to getting some answers.

Bob and I are pretty good.  Bob's working some hours, still not full time, but more than he was.  The 1st shift scheduale is definitely working out better.  He meets with his GI surgeon this coming week, and they will get all the testing started.  He will also be meeting with his rheumatologist soon.  He has his good days and his bad days.
I'm pretty good all in all.  They are still resituating my meds.  Some things seem to have improved some.  Most days it's just whatever we can do to make it thru each day.
Looking forward to thanksgiving this next week and spending some time with family.

Wednesday Night Already

Another week flying by. 
Eli~ He's stable.  :)  Always nice to say.  The hospital tests came back showing that his pertussis was still positive.  After lots of people talking, and a chat with Eli's infectious disease doc from his 1st round of pertussis, they believe that it's positive still because he had it a bit ago, not because he got it a 2nd time.  BUT he's already on the antibiotic to treat it for his motility so we are doubly covered just in case this is a new round of pertussis.  He is also back on his acid blockers.  Hoping that will help a bit more.  Eli met with his pediatrician on Tuesday.  She got the paperwork sent out for his full OT and speech eval and feeding therapy.  We are super excited to get to be doing this locally!  He will get to work with the same speech pathologist that he worked with way back when he 1st tried a bottle.  We really liked her.  He had PT this morning and did really well.  He met his goal of learning to sit.  We wrote a new goal to work on going from sitting to laying, and from laying to sitting.  He's a bit fussy this evening as his antibiotics are causing some GI issues which is making for some painful diaper rash.  He goes to his cardiologist next week to discuss the possibilities of heart surgery.  I'm probably more nervous about this appointment than any we have been to in the last 11 months.

Benjamin had his appt with the psychologist this Tuesday as well.  I was really impressed with her.  She agreed with his diagnosis of Autism and OCD and added 3 or 4 more to his list.  She really listened and talked and did some things with him.  Pulled his past records and all of those things.  I think she's going to be a great fit for Ben.  She 100% agrees that meds are needed.  She sent over a script and he will start that tonight.  She's starting him on 1/2 of the lowest dose 1 time a day and we will work up from there.   Hoping we are on the right track with this one.  Ben's new respite worker also started this morning.  Hoping he will be a good fit for Ben as well.

The older 2 are busy with school.  Jace is getting ready for his Christmas music program.  He's super excited about having a part in it, and singing his duet.  Emily has been pushing hard with her reading.  Everytime I see her she has a new book.  She's also been spending alot of time in itunes, she's got so many gift cards she's been having fun.  Books and music are her passion. 

Ari is well.  She is excited that she has Kids Day Out tomorrow and then because of the holiday she gets to go back on tuesday.  She loves it!  Such a good choice for her.

Well tiny man is crying so I'm off.  More soon.

Pulmonologist and Basic Updates

Eli had his appt with the pulmonologist this morning.  She thinks that he is aspirating stomach acid when he is coughing.  She is putting him back on his prilosec to help control the stomach acid a bit more, and a VERY small flush.  Trying to keep everything out of his stomach as much as possible.  So we can't seem to figure out how to keep his darn lungs protected.  They are going to push some more with OT and speech, doing an evaluation here in Wichita, so he can hopefully receive more consistent local therapy.
We tried some time off the G drain this morning and by this afternoon he was super fussy.  Hooked his drain up and got over 50cc of bile in 1 hr.  So clearly we can't go without a drain.  Luckily they got his new drains and adaptors in today.
His pulmonologist also wants the RSV vaccines.  She is doing all of the paperwork thru the insurance to get that done.  He would get 1 shot a month from November until April, so 6 months total.  The doc told us the cost of EACH of these shots and HOLY CRAP.  I had no idea they could even make a shot that expensive.  But if that's what we need to help protect his lungs then I guess that's what we need.  I will however be researching the vaccine tonight!
Tomorrow Eli has his appt with the pediatrician, and next week with the cardiologist.  Nervous about that one.

Everyone else is doing pretty good.  Ben has a new respite worker that will be starting this week.  We will see how that goes.  He seems like he will be a good fit for Ben, so fingers crossed.  His Tuesday/Thursday night worker will continue with him on those 2 nights as they do really well together.  Jace finally found his missing library book, so finally got it returned.  He's super excited that he gets to keep his money and actually go shopping instead of paying off a library fine.  Ari is good.  She did well with swim lessons this last saturday and even tried to float on her back all by herself.  Emily is good.  She's reading alot and listening to music alot.  She's constantly finding new groups and new songs that she likes.  She did great at swim last week and was able to swim underwater part way across the pool.  She was super excited.

Bob and I are ok.  Exhausted.  Hospital stays and eli being sick just wear us out.  It's beyond exhausting.  Hoping for life to get back to normal, not that we know anymore what normal is.

On the child support update...Brian has now decided that he thinks the judges signature looks alot like mine, which mine you it doesn't.  So he wants proof.  Clearly the judges signature, the judges stamp, the court clerks, stamp, the court issued case number, AND the emailed court papers directly from the court clerk weren't proof enough.  Nor the fact that he can call the courthouse and verify the case number AND he can call Kansas Payment Center to verify the case number by using the social security number or case number.  So he is 3 payments behind (hasn't paid anything) and he hasn't called the kids, acknowledged a birthday, or anything.  I don't know how else to get him to understand it's about the kids not about him.  I have my last children of divorce class this coming Thursday and then the papers will be finalized.  Not that he will believe that either.  When he gets that 1st TINY paycheck and notices the garnishment, wonder if he will finally believe it.

Home...for now

We came home last night.  We pushed to get released.  We tried out a new hospital and it was a mess.  We won't be going back.
Eli's only official diagnosis from this hospital stay was aspiration pneumonia and acidosis.  His heartrate is still a bit elevated and we aren't quite sure why.  Temp down which is good.  This morning he woke up coughing and gagging so we got the lovely suction machine all hooked back up with clean tubing and ready to use.  I hate suctioning.  He's obviously breathing a bit faster since he's coughing and gagging.
This week we have to go to the pediatrician, surgeon, pulmonologist, and cardiologist.  Fun times.
The hospital is a bit concerned that the hole in his heart hasn't yet been closed and they think we should really discuss that with cardio.  We will see what his thoughts are.  Of course everyone admits that heart surgery with pulmonary hypertension isn't a good choice.  So not sure.  Hospital docs discussed an option not to do open heart surgery but to go in with a cath thru his thigh.  We don't know the best choice obviously and will discuss with his doc this upcoming week.
There is also going to be a big push on all ends to figure out the aspiration.  We are only feeding foods and all meds into his J, so his stomach is empty.  I am unsure how he continues to aspirate.  We have got to figure it out.  He doesn't need anymore long term lung damage.
More updates as we know them!

Hospital Stay # heck who knows anymore

Eli has had his cough for a few days, and as the week went on it got alot worse.  Friday overnight he started running a fever and hardly slept at all.  He was not feeling well.  By Saturday morning  he had 101.2 fever, his lungs sounded yucky, and he was miserable.  Doc said go to the ER for a chest xray.  So off we went.  he does in fact have pneumonia.  Go figure.  They admitted him and got an IV started.  He is on IV antibiotics.  They ran fluids last night thinking he might be dehyrdrated.  Turns out he isn't. 
His heartrate was super high, 180's even up slightly over 200.  He's been breathing pretty quickly, which isn't normal for him either.  His fever is down this morning.  His heartrate is higher than normal, but down from yesterday.
Everyone questioned us alot on why they haven't done heart surgery to close the hole in his heart.  HMMM.  We don't know.  We have always assumed our cardiologist has made the correct choice.  Everyone here has commented that he's one of the oldest kids they've ever heard this type of heart murmor in.  Go darned figure.
We are waiting on the doc to do rounds this morning.  I hate waiting.  More info when we have it!

Upper GI and Sonogram Results

This morning Eli had his modified upper GI.  They put the barium straight into his G and then took pics, waited a bit, and took more pics.  No refluxing, although everyone agreed this study didn't tell us anything and nobody knew why the doctor ordered it.  Soooo.  Anyways.  We talked to Dallas and they are all confused and trying to get things sorted out.  Then we called Denver and talked to IR(interventional radiology), and it was a great conversation.  He was super informative and you could tell he knew what he was talking about. They even carry every size.  WOW.  Super exciting.  They also have FOUR IR's on their team.  HOLY COW.  We have 1.  He said they do 3 to 5 J's a week, and have 300ish patients total that they do J's for.  I was super impressed.  We chatted for a while and he told me to feel free to call back if we had anymore questions.  Our local GI is calling Dallas to try to get us in there, but we are leaning towards Denver even though it is alot farther away.  We are just constantly trying to make the right decisions for Eli but it's so hard sometimes to know what the right decision is.  It's also so rough needing such a specialty area of medicine.  Most doctors around here have no clue what a Jtube is, what to do with it nothing.  It's rough and frustrating.  As of right this minute my tiny man is sound asleep hooked up to his feed and drain, content as could be. 

I also had my sono this morning.  My left ovary no longer has the large cyst, it just has lots of small fibroids, and my right ovary still has a cyst but it's alot smaller.  But my ovaries still aren't working correctly.  My OB made the decision to go ahead and start me on some new meds and see if that helps with some of the symptoms.  Right now we will keep checking in every 3 weeks to see how it's all going.

Ben is in quite the mood today.  Multiple tantrums, and he's on the move tonight, refusing to stop and sit.  His respite worker tonight is shocked at how much he's on the move.
Jace is pretty good.  He's working hard on his spelling words this week, and his handwriting.  We are definitely slowly seeing some improvement.  This is his 1st week back on IEP, so he's getting resituated with speech and such.
Emily did a newspaper project for school and had alot of fun with it.  She did a great job.  She went down the street this afternoon and spent some time playing with some new kids she met on the bus.
Ari is same as always.  Busy busy.  She's always trying to keep up with the big kids.  She spent some time outside playing with the little neighbor girl.  They both get along well.

Bob is loving 1st shift and enjoying being home every afternoon and evening.  It's really helped out alot.  His new meds seem to be working a bit, with a few unwanted side effects.   We know it will take time for it all to get situated.

Quick monday check in

Today Eli had an appt with his GI doc.  She's a mess.  She couldn't figure out his meds or his feeds, and she kept telling me over and over that everything is motility and she doesn't know what to do.  She says "He has full GI motility, esophagus, stomach, and intestines".  NO KIDDING.  We've already figured that out.  She is referring him to Dallas or Denver.  Our choice.  We are going to have to do some major travelling to get this all figured out.  Calls into everyone.  Records being faxed all over the place.  As of right now Eli is on 20hrs of feeds, with 4hrs off, that we are doing 1hr at a time.  Still have the continual drainage. We had hoped to maybe get rid of that, but then the other day he had alot of bile, so not so sure we are ready to try without.  We don't know anything on the new med yet, but that's to be expected.  Tomorrow his GI is having him go to the hospital for a modified upper GI.  They are going to put barium into his GTube this time and see if they can get a good look at the fundo area and how well it's holding up.  Unfortunately for Eli he has to have his feeds turned off 4hrs before the test.  So he won't get any additional play time off the pump tomorrow.  Eli is starting to roll alot.  He can get himself around a bit.  He's also getting onto his hands and slightly onto his knees for a few seconds and I'm just waiting for the moment he figures out he can move like this.  Not sure how that will work with the drain and tubes and pumps and such but we'll see how it goes.

Emily is currently frustrated with school as they've started a new math program, and it's going way slower than she would like.  It's slow because they are required to work thru it as a class, so she isn't allowed to work ahead.  This is causing her not to have time to get her accelerated work done apparently.  She's quite annoyed.  We told her we would contact her teacher and find out what the options are.

Jace is doing ok.  We had his IEP meeting at the end of last week and got alot accomplished.  He will have speech twice a week, and they are having someone come in and work on his handwriting daily.  Also he is having the tests read to him, instead of him having to read it and struggle thru.  He's able to do alot of the answering of the questions outloud as well.  Obviously this isn't how they do his reading comprehension tests, but for everything else. 

Ben is ben.  He was in quite the mood today when he got home from school.  Respite took him outside and that seemed to help calm him, although he wasn't interested in dinner.  He had his bath and hopefully will settle for bed quickly.  He was able to show his teacher the child that was abusing him, and apparently Ben wasn't the only child this was happening to, although it seems he was the only one to come home with bruises.  The teachers are keeping a close eye, and so far all seems good.

Ari is good.  She's busy as always.  She's the social butterfly of the house and is always moving and always talking.  Eli finds her fairly entertaining but he tires of her quickly.  Sadly for him, he's the only kid around all the time, so she showers him with attention.  She loves when everyone gets home from school and they can all head outside to play with the neighbors.

Bob is back to work.  He started 1st shift as of sunday.  They were FINALLY able to get his scheduale accomodation done.  It's definitely been a change having him gone, and especially during the day, but it's been so much better in the evening to have 2 adults to get things done with Eli and the other 4.

Tomorrow is my next sono.  Hoping for some answers, but not holding my breath for good news.  I'm assuming that the cysts haven't gone away.  I'm just trying not to worry about it and wait and see what the doc says.  They changed around some of my meds, but so far no change.

Will update more soon.  I try to keep up with the updates but time just slips away!

Wednesday Evening Check In

Eli ended up back at the hospital on Tuesday to have tube placement rechecked.  The tube was in a good spot.  They decided that the gastric motility is probably what is causing all of the excess bile and such because the stomach is simply not moving everything down.  They were able to get him hooked up to 1 drain bag, and that should last us a few while we attempted to find them and get them covered by insurance.  His doctor is starting him on eryped to try and help with gastric motility.  Right now we are only putting it thru the J port though so I'm not sure if it will be quite as helpful.  His motility GI also called and said Eli has to be able to swallow 10 swallows for the motility testing.  He can't swallow 1 anymore.  Humph.  His pulmonologist also called and thinks that this horrible cough is because of everything still being inflamed and upset from the pertussis and reactive airway disorder and pulmonary hypertension.  I don't really understand why it would have all just started again, but I'm clearly not the specialist either.  She is starting him on a steroid and restarting xopenex treatments.  Not sure what the cardiologist will think of the xopenex as it increases Eli's heartrate so we'll need to keep him on his monitor during and after treatments.  We are going to try to keep raising his night feeds a bit over the next few days to see if we can get our full intake in each 24hrs.  Right now we are 150cc short, which is 5oz, so quite a bit.  It looks like we will end up around 19hrs a day on the pump.  Not ideal, but as good as it's going to get right now.  He's resting comfortably and even did a bit of tummy time today and some sitting!  He's my happy little dude!  I'm so glad he's as relaxed as he is!  He handles all of this so well!

The older 4 are pretty good.  Ben had his meeting with comcare this week and has been referred to a psychiatrist to get some meds resituated.  They are also hoping to start some play therapy.  He began working on his social interventions program yesterday and that will run the course of the school year.  His speech teacher will also incorporate some of that into their time as well.  Hopefully we can teach Ben some of the skills needing for handling some of the tougher situations with his peers.  Ben starts gymnastics tomorrow, and swim on saturday.
Ari is good.  Busy as always.  She has school tomorrow and starts swim on Saturday.  She will get atleast 2 days a week in the pool and she is super happy about that.  She really enjoys the water!
Emily and Jace are both busy with school.  They are at school all day, do homework when they get home, and then head outside until dinner.  As soon as they are done eating they are back outside until it's dark.  They enjoy being outside with the neighbor kids and having some freedom.  Emily loves being older and staying up late.  She plays on her computer and listens to music.  She's pretty good about turning everything off at a reasonable time, and gets her self up without any fuss each morning so we give her the freedom.
Bob and I both had our med rechecks today.  They are going to again adjust my meds and send me to another doc for a 2nd opinion.  It is definitely looking like my ovaries will ultimately have to go as well.  My next sonogram is next week, to see if the cysts have shrunk but from the discomfort we are assuming they haven't.  They are starting Bob on a new med for the IBS, doing additional lab work for the rheumatologist, and waiting for his genetic testing and GI surgeon appt at the end of the month.
Other than ALL of those things not much new around here.  lol.
more updates soon.

Update from Eli's procedure

Eli checked in this morning at 9:30.  It was a bit harder to get the GJ placed than expected.  His stomach apparently has poor gastric motility and a very narrow pyloris valve.  It made placing the J a bit more complicated.  There was a lot of confusion after we left.  Nobody knew what to do for feeds, meds, nothing.
Got home and Eli started gagging and choking.  Called doc, they paged the surgeon stat.  Decided to start his feeds slowly and to vent his G continually.  The G has had a ton of stomach acid and bile.  The J feeds have been going slowly.  He's had alot of coughing and gagging and choking episodes.  His heartrate has been running high, and his lungs sound wet and raspy.  We had to page his doc and we were on the phone for over 20 minutes trying to figure out what to do next.  Right now we changed some things and we are trying to kep him on his right side. 
I'm just not sure what we are going to do next.  We just can't seem to figure this out.
more updates tomorrow.