Thursday, September 30, 2010

3 Appointments done...updates on all

Update from the day.
Eli~ Tiny had his upper GI. They did some goofy testing and nobody is really trusting the results. Sooo Eli is on continuous feeds, instead of his regular feed scheduale. So hopefully keeping the smaller amounts in his stomach we can make it till his surgery on Monday.

Ben~ Had Ben's meeting today. Finally seems as though we are going to get somewhere. They suggested putting Benjamin in an in-home respite from Friday to Monday, but we chose not to have him leave the home yet. So instead he will be going to a day respite program on Saturdays and then he will have in home supports after school and during bedtime each week. Everyone is in agreement that it's the new medication that is causing alot of these new problems, so the rush is on to find a specialist to get the meds figured out correctly. We are also going to be having an emergency meeting with everyone next week, hopefully wednesday to get long term plans in effect. Hopefully this will all end up making everything safer for Ben and for the rest of the kids.

Me~ I had my check in with the doc after all of my labs. She says all of the problems with my ovaries and PCOS have caused a metabolic disorder and the PCOS is really flaring up. She's putting me on some meds to try to help get everything resituated and hopefully get me feeling better.

so that pretty much covers the day. Tonight if all goes well I'm heading to SnB. Eli has his nurse, the older 4 go to my parents for dinner on Thursday nights, and Bob will actually get to work tonight. Fingers crossed!

Eli's rough morning

Eli's been having some issues for the last few days, since friday. this morning i went to get him a new 2x2 and came out to the living room and he was silently choking. I immediately sat him up and leaned him forward and milk poured out. He had refluxed up a ton of milk and couldn't get it all the way up and was choking. Called the doc. All feeds cancelled and he checks in at 1pm for testing. Depending on what it shows he may need surgery now to fix it, or we may be able to change his feeds around and hold until the schedualed surgery on monday. the surgeon is waiting for the page with the results and will immediately make a decision. oh and he's obviously back on his O2 sat/pulse ox continuously.
will update when we know more.

Wednesday, September 29, 2010

Quick Wednesday Check In

CMH called today to get Eli schedualed for his testing. He goes Oct 13th. He will meet with OT, PT, and the feeding clinic. I'm not sure exactly what they will do. I just know this is the next step before his motility testing. Hoping he does well with his surgery so he can go. Eli also had PT today and did pretty well. He's still working on rolling although it's still alot of work for him and makes him super tired. Eli's doing well with his new nurse. She's been with him for a few days and all is going well so far. Fingers crossed that it all goes well as it's been quite a while since we've had a full nursing staff. We've been able to completely phase out the night nurses so we are back to just our normal regular hrs of day nurses.

Ben and Ari are completely out of control. Last night was definitely the breaking point. We are all having an emergency meeting tomorrow to decide what next with Ben. His meds aren't working and he's struggling at home and school. The choices are going to come down to some sort of inpatient program are full inhome support when he's home to work with him and keep an eye 100% of the time. We will know more tomorrow after the meeting. Once Ben's issues are resolved, we have confidence in Ari situating back down to normal very quickly.

Jace and Emily are doing well. They do everything they can to stay as far away from Ben as possible. The good news is they are getting along with each other so much better as they are spending all of their time together away from the younger too! Hidden bonus. lol.

Bob and I are same as always. Busy and rushed and hectic. We've been trying to get out every day to atleast go on a walk around the neighborhood. I feel so much better if we get a fresh air walk. Tomorrow is my doc appt to go over all of my lab work and find out what next.

Not much else knew I can think of. Like always it's just doing what we can to make it thru each day. More updates soon.

Tuesday, September 28, 2010

Emotional Day

Wow it's been quite the emotional day. I got my lab results in the mail. This is just all of the numbers and the information, and she will be meeting with me thursday to discuss it. My hormone levels were bad. Some were very high and some were virtually non-existent. I don't understand exactly what it all means but I know it's not good. I'm nervous and anxious for thursday to get here to find out what happens next.

We also had Eli's cardiologist appt this morning. His doc did the ECHO again. This time Eli's number was 35. Last time it as 45. It's supposed to be 15, and 50 is huge danger zone. As of right now there is still no damage to the right side of his heart. But we obviously need that number to go down alot more. His doc is releasing him for surgery since this is something that needs done BUT he warned that anesthesia is going to be a struggle and he is unsure how well Eli will do. He will be on call and available immediately if he's needed. Eli will be retested again in 3 months and by then we HAVE to have his number down or we'll have to move on to more ideas. I hate pulmonary hypertension. humph.

Then the roughest part of the day. Finding out the Eli's motility GI office MAJORLY dropped the ball. Eli had his testing at CMH in KC the very beginning of July. They said they would call in 2 days with the results, and to get the full motility testing schedualed. 3 months later we've been calling and calling and leaving message after message and haven't heard a word from anyone. So Eli remained NPO without testing or an official diagnosis or anything. I finally called AGAIN today and before the receptionist could just rudely transfer me to another damn voicemail system I gave her an earfull. She went and personally found the nurse and transferred me straight to her. The nurses was rude as shit at 1st, and after 20 minutes on the phone of explaining she was at a loss. We hung up and she went and spent 1 1/2 hrs doing some research. She called me back letting me know that she found the problem but that the manager in charge of the hospital would have to call me back This afternoon the manager called me back and WOW. Apparently the doctor gave detailed instructions of what needed to be done next and gave him to one of the nurses. She was supposed to set up tons of testing and such and call us with it all schedualed with detailed instructions. She put the orders who knows where, got busy and forgot to do it, EVER. So now my son hasn't had a drop of anything in his mouth for months during a hugely important bit of time. As of his last swallow study his swallow is getting worse and worse from no "practice". So now Eli can't be cleared for the full motility testing until he goes thru tons more testig to make sure he's safe to have the testing. The are scrambling to cover their ass and get these tests schedualed as soon as possible. I've never been apologized to so many times. I just kept telling her over and over this is my sons life and I have to be able to trust them with my son's life. This isn't having your pants hemmed 2 inches to short, this is my son. I have never been so angry in my life. I don't know what to do. We are now sooo much farther behind and nobody is sure yet the repercussions of this major fuck up on the nurses part. It's an emotional rollercoaster right now. Sadly this is a major sub-speciality of a specialty so that means there aren't many of these doctors around. So it's not like we can just pick and choose who Eli sees.
So now we wait. They are rushing to get all of his testing schedualed.

Monday, September 27, 2010

Monday Quick Check In

Today was my testing. I had a mammogram and then a breast ultrasound. They took a TON of pictures and I met with the doctor immediately following both tests. She said everything looks great and we will do it all over again next year. She said in a few years as long as I don't have a new lump they will start adding in MRI's as well. So it's definitely a relief to know all is good so far!

Mr Eli had his appt with his pediatrician today. We combined his out of hospital recheck with his pre-surgery check. She said his ears and everything look great. She has decided not to release him for Parents as Teachers as she doesn't want him around that many kids and exposed to that much. He is refluxing some again today and choked this evening. So I get to hang out and watch him for signs of aspiration like always. I hate having to watch him go thru all this.

The older 4 are ok. Emily and Jace are busy with school. Jace lost another tooth yesterday. Ben is still very excited about having lost his 1st tooth. Ari is a disaster same as Ben.

Sorry for this update being so short. Tons I'm hoping to get done tonight.

Saturday, September 25, 2010

Botanica Picture *Updated*

more pictures to come later, but here is 1 for now! :)

Here is the link to the rest of the Botanica Pictures

Saturday Morning Check-In

It's been a busy few days. Mr Eli has been pretty busy these last few days. He's been working on learning to roll and sit. Up until today he's done pretty well. Today has been rough. He's been choking and gagging and retching this morning. He actually threw up a bit this morning which he hasn't done in 8 months since his fundo. He does have a nurse on this morning so she is watching him for signs of aspiration. Will see how his next feed goes and if any changes will be calling the doc.

Emily is doing well. Had her conferences this week. The teacher said she's doing great and that the additional work is really going well. The re-eval date is coming up the beginning of October so then we will have more information. There will be some additional testing as well.

Jace is doing pretty good in school. They have started his speech and he enjoys it. He has had some issues remembering to take his meds, so we are really have to monitor that.

Ben and Ari are a disaster. I'm not sure what to do with them as nothing is working. Ari watches Ben and is now picking up all of his bad habits. It may come to the point where we will have to look for a residental facility for Benjamin for a bit of time until we can get everything under control. I can't continually have my home flooded, fires, set, furniture and clothing destroyed, and everything else. I don't know what more to do. We have our next meeting coming up with his autism specialist and team so hoping to get a better plan in place.

Bob is back at work for a few. Obviously he'll be back less than 2 weeks, before he's off again for Eli's next surgery. Thank heavens for FMLA, but the loss of money is really hurting.

I'm here, as always. Trying to keep up with the house and kids and Eli. I'm exhausted. My health issues have come to the point where I ended up at the doc this last week. She ran every lab test under the sun and we will meet back up with week for some answers. I also have my mammogram and ultrasound on monday, so nervous about that.

Today we are taking the 4 older kids to Botanica for Free Museum Day. They are pretty excited. Pictures coming when we get home.

Tuesday, September 21, 2010

Pulmonologist and Pediatric Surgeon

Today was 2 big appts in 1 day. First was the pulmonologist. She said his lungs are sounding good and she's a bit unhappy with how high his heartrate has been running. 1 of his meds is changing to just PRN, and then keeping the other twice a day. Hoping that will maybe help his heartrate lower back down. She says she will release him lung wise for surgery/anesthesia. Also she switched his O2 sat monitor to just nights and spot checks. So that's 1 less piece of equipment we have to haul everywhere and 1 less cord permanently attached to Eli!
Then we had his pediatric surgeon. She's changing up his feeds as he's being gaining 5oz a day. Will check in Friday to see how that's going. Then she's going to go ahead and scheduale surgery. The goal is to do 1 big anesthesia with multiple things going on. A PH probe placed, flexible and rigid bronchoscopy, Orchiopexy (undescended testicle/hernia repair), and possibly a central line, depending on what they can get for a line. She is also talking with the new GI in town and seeing if he can do the motility testing at the same time. Eli would be admitted, obviously, for a minimum of 24hrs but with Eli's history everyone assumes it will be longer.
Not looking forward to another surgery but looking forward to be taking our next step in the direction that we ultimately need to go.
Eli is exhausted after being out at appts most of the day. He's finally crashed out on the floor. The older 4 are playing outside and downstairs, Bob's at work, and I'm getting ready to make homemade pizzas for dinner! hoping for a quiet evening as I'm exhausted.

Monday, September 20, 2010

Time Keeps Flying

Time keeps flying by. I keep saying I'll update more often, and then next thing I know its been a week. I get tons of emails, texts, and calls when I don't update so I figured it would be quicker to just get on and update! :)

Eli is doing well. He rolled to his tummy from his back, not once but twice!!! He did this a few days ago. He hasn't done it since but I'll take it! He's got a double ear infection at the moment, so that's not been super fun. His coughing is getting better and better. He has his overnight nurses until the end of the month and then they end. We have been super thankful for their help during his recovery, but we are looking forward to getting back to our normal day nurse scheduale!

Ari is doing good. She's going to start going to a Mom's Day Out at the Y, and hopefully getting started in a gymnastics class. She's missing being around kids her age so she's excited to get to go. She thinks its school! :)

Ben is doing pretty good in school. We had his conferences last week. Academically he's doing well. She's starting to have a bit of a problem with him roaming the classroom and has to call him back to his seat multiple times. His 1 on 1 stays back alot and waits to see how he does before she steps in and helps. Encouraging him to use his words and ask for help. He got to use the computer at school today so he was super excited about that!

Jace is doing ok. His language and writing is really struggling. They are having the child life team come in and do some deeper testing to find out for sure why he might be struggling. In other areas he's doing super well. They got his speech restarted as well.

Emily is doing well. She's enjoying being in school, as long as the work can be kept challenging enough. We will be meeting with her teacher this next week for conferences.

This last weekend we spent this last Saturday afternoon at a local park for Family Fun day. All of the activities were free, and they had TONS of activities. They got to go kayaking, paddle boating, played tons of games, and had a great time. Once I get the pictures all sorted out I will get them up!

Bob is back to work today. It's been nice having him home. I'm just trying to get back into the routine of being home with the little people and getting the house reorganized. We are completely caught up in 2 out of 3 classes, and are working to get caught up in the 3rd. Our teachers have been amazing so that's definitely helped! The last big news is I filed for divorce and child support about 2 weeks ago. Child support is already in affect and signed by the judge, now if he'll just pay the full amount. Luckily back child support will start to build up and I can garnish if needed.

More updates soon! I promise!

Tuesday, September 14, 2010

Tuesday Morning Updates

Tiny man is slowly getting better. He's doing pretty good keeping his O2 up, but it's been a bit more of a balancing act at times to keep his HR down. We've had to put him back on his O2 or bump it up a bit, to get his HR to settle back into a slightly lower rhythm. Looking forward to the cardiologist in a few weeks to retest on where his Pulmonary Hypertension levels are and how the right side of his heart is looking. He's still waking up about 5 times a night with coughing fits, although last night was the 1st night that his O2 sat didn't drop any. He's exhausted and already snoozing on the living room floor while his feed runs in.

Ari and Ben are a disaster right now. They spent yesterday getting into everything under the sun in the basement and absolutely destroying multiple things. Ben is stealing things from his teachers desk at school, and we are trying to figure out how to correct this behavior. We have to watch him like a hawk, or he will steal all of Eli's medical supplies as well. They have spent most of their afternoons outside with the older 2 and the neighbor kids, and definitely enjoy that. Ben's new therapy swing came in and we got it set up earlier this week. He absolutely loves it. He's been on his meds for a few weeks, and so far no change. We will all be meeting back up soon to discuss what next.

Jace is busy with school. He's got homework a few times a week, and spelling words tha the has to work on. Like Ben he's been on his meds for a fews weeks as well. Sometimes we think we notice some change, and then sometimes not at all. He's super excited right now because there is finally an almond milk "ice cream" available and he got some for the 1st time. For Jace this is super big news!

Emily is doing pretty good. She loves school, and is doing well there. The work is very easy for her. They've bumped up her work to more challenging work, but it doesn't seem to be enough of a challenge. She's been reading alot, and enjoying that her teacher is allowing her to pick harder books. The attitude has been immense. There is a larger gap right now between her and her siblings, and that's made some things really rough. Emily enjoys spending time talking and playing with Eli. He absolutely loves her, and she is the only one who gets his big laughs. He would have Emily hang out with him all day if she could. They definitely have a special bond, and they both love it!

The kids are off school the end of this week for parent/teacher conferences. Hoping to get some major thinning down and cleaning of their rooms while they are off. The weather looks like it should be pretty good as well, so hopefully they can spend a big chunk of time outside.

Bob and I are really pushing to get caught back up on our schoolwork. Yesterday we got 1 of our classes done, 2 weeks worth of work in 1 day! Today hoping to get the 2nd class caught up, and hoping for the 3rd by the end of the week. Bob will go back to work in the next day or two.
Other than that we are ok. It's alot of auto-pilot right now. We are exhausted, and this time it's taking us alot longer to get resituated and organized back into life. Eli is not recovering as fast as normal, and that makes a big difference as well.
More updates soon!

Saturday, September 11, 2010

FINALLY...the promised updates AND photos :)

Sorry I didn't get on yesterday and blog. It was a very long day.
Where to start. Since I last blogged about the hospital stay...
Eli was rushed to the PICU, super sick. Never able to get an IV. He struggled alot. Kept his O2 super high, had to switch between mask and nasal canules. Bagged a few times. Lots of suctioning. Labs galore. 12 lead EKG, ECHO, tons of medications. It was an exhausting scary time for all of us.
Lots of doctors and meetings and heart to heart talks.
Official diagnosis was....pulmonary hypertension, reactive airway disorder, pertusis, pneumonia, and rhinovirus.
It was decided to send Eli home with 16 out of 24 hrs a day of nursing. He's less exposed to things here at home, than in the hospital. So Bob and I were taught full infant CPR and resucitation and how to use the Ambu bag. We were given a huge list of things we had to get done to be able to bring Eli home. We were finally able to leave the PICU and come home late Tuesday the 7th.
Since then we've slowly weaned down a bit on the O2. Watching his heartrate constantly to make sure it's not struggling. With the pulmonary hypertension we can't just watch his O2 sat, we also have to keep a close eye on his heartrate.
He has tons of doc appts over the next 3 weeks to determine the damage and what to do next. He will have his 12 lead EKG and his ECHO redone in 3 more weeks to determine how much damage to the right side of the heart. All of his upcoming surgeries and procedures have been cancelled, indefinately. He simply isn't stable enough to deal with anesthesia.
The kids are happy to have us home, and we are definitely happy to see them. The 8 or 9 days we were in the hospital, were the longest we've gone without seeing them. Bob is still on leave from work, he will most likely be going back this coming week.
The outpouring of love and prayers and thoughts from friends and family and even strangers these last 2 or 3 weeks has been amazing. We were getting over 200 emails a day, many from people we didn't even know. We received prayers from all over the world. We are amazed at how quickly everyone got the word out and the responses from everyone. The food, the help, the visits, the phone calls, the shoulders to cry on, the support, the ears to listen, all of it... We can't begin to describe how we felt. We felt the infinite power of the human spirit and we saw it work in Eli. Just can't explain how we felt. And a thank you isn't enough but we have nothing more to offer right now.
Here are some pictures of Eli in the hospital

Here are some pics of Eli since he's been home and his room.
The link is to Eli's room pictures
Eli's Room Pictures

Here are a few pictures of the oldest 4.
The 1st pic is the 4 kids at EP

The last are of the kids at Riverside Park today. They had a great time. Jace enjoyed climbing repeatedly to the top of the space ropes. Ben had fun, but didn't go as high. Emily was scared to go up at all. Ari refused to go near the ropes and had a great time on the balance beam!

I promise to TRY and keep up better with updates over the next few weeks. Our pulmonologist told us on discharge day "I think we are pretty close to past the point of having to worry about going on a vent at this time." Interesting words to hear when they are sending you home. Which basically tells you we are still busy and stressed and worried alot, and tired and all of that good stuff. But I will try and do better on updating. Sometimes I forget that not everyone is on my facebook page! :)
Much love to all!

Thursday, September 9, 2010


I'm sooo sorry I haven't gotten back here to update. I promise to get a full update up tomorrow.
We are home. We got home late Tuesdays night, and we are just trying to get Eli resituated and such.
Soooo that's the incredibly short update. promise I will get a huge long book type update up tomorrow! :)
love to all.

Wednesday, September 1, 2010

Turn for the worse

At 4am Eli had a coughing fit and it took the nurses 10 minutes to get his O2 levels someone back to acceptable. So Bob packed up quickly and Eli was rushed down to PICU with portable everything for this move. I received a call from the doc at 4:30am telling me I needed to get up to the hospital because they were thinking they were going to need to intubate at any minute and that Eli had a 50/50 chance at the point of making it. I FLEW up here.
The rush was to get an IV going. couldn't get one. couldn't get a PICC line, couldn't get a central line. Anesthesia from these was fun. He went into the 40's and had to be bagged during the attempts. His oxygen did well for a bit after and then took a bit of a nose dive this afternoon Messing with machines and setting constantly. Surgeon here to do a central line cut down in the OR but everything else needs to be stable first.
Eli has pulmonary hypertension which apparenty can be life threatening. He had his 12lead and now is getting his ECHO and then his cardiologist will come in and assess the damage/danger. They are concerned about a blood infection/septic. He has a sinus infection. So right now his surgeon is here, 2 pediatricians, pulmonology, cardiology, and the PICU medical director/intensivist is here.
So right now that's the only updates we have that I can quickly type while they finish the echo. for full updates go to facebook as it's the easiest to keep updated because i can do it from my cell phone.
to find me on facebook my email is
also we want everyone to know that just because we can't respond to each one we are amazed by everyones love and support!!! We have received over 150 emails and I can't even count the text messages and phone calls! I can't wait until Eli is past this and he's older for us to tell them the story about how many people surrounded him and lifted him up during this time. love to all.