What have I been up to???

All of the above......

I have been trying to get back to the basics with the kids.  Something as simple as pumpkin carving is sooo exciting for the boys.  They laugh so hard they almost start choking on their secretions.  It is nice to be able to have the time and energy to do the little things that mean so much to them and me. 

I have also become a new daycare provider for one small cute infant.  Yup, I know crazy.  My niece's daycare fell threw and since I am not doing much of anything during the day and she meet my weight requirement, it's me.  Actually, she is a very good baby and we are a laid back household (although crazy most days).  She seems to fit right in or is it she sleeps so much b/c it's so crazy here????

Milo, oh Milo.  So I have a love/hate relationship with him.  I have never had a pet before and since I am home the most he follows me everywhere.  That does not bug me as much as him eating everything from paperclips, to his bed to Avery's bipap supplies.  Basically whatever he can get in trouble with.  He is a very very needy dog.  I know, I know, everyone told us we were crazy and you were all right.  But it did make a huge difference for Janessa over the summer when Avery was so sick.  Now it seems that he is "my dog".  Yay me!!!!

Admittedly, I am anxious to get back to work to a normal routine.  No matter how much I try,  I am just not cut out as a stay at home mom or a housewife.  I need structure and a routine and to work.  That is just the kind of person I am.  I have 4.5 wks in counting.  I swear I function better in ciaos. 

Avery has been doing really really well.  No complaints.  The same goes for Isaiah.  He has gotten out on the road with his bike since the weather has been so nice.  He is loving it.

A nice surprise

Avery went in for his CT yesterday and like Rick said "it was like going in for an oil change".  For the first time in forever, things went much better than expected.  When we arrived the anesthesiologist came in and was immediately unsure about sedating him with his respiratory history.  Of course she read through his chart which is a nightmare for any anesthesiologist.  I felt good about where Avery was at this point b/c since being discharged from the hospital he has been doing so well.  She was not so easily convinced but was persuaded by how good he sounded and once he flashed those pearlly whites of his, how could she resist?  However, her other concern was what to use with sedation given he has mito.  It is always a concern b/c generally kids with  mito cannot have gases and propofol.  But for some reason, both my boys have done very well with propofol and I was in complete agreement that it would be fine for Avery.  Low and behold, he did great with the propofol and was still enough to complete the CT.  He remained at 100% throughout the test and all without being intubated.  Yay..... She was definitely impressed with him and my foresight on how he would do. 

So this meant that once he woke up which was immediately after the CT :)  he could go home.  NO inpatient stay for us.  We were literally in/out within a 3 hr. span of time (a little longer than an oil change but still quick).  Certainly a record for us.  And the bonus in it all was there was no change from his previous CT, meaning no new clot or further stenosis.  I am rather impressed with my little man.  You never know what you are gonna get with him but it's certainly nice when things turn out better than expected. We still have no explanation of why he was so puffy and clearly retaining fluids but he seems ok now.  Sometimes there are just not going to be answers and I accept that at this point.

Also I have finally embraced my medical leave.  I have decided to take 7 wks off b/c my sister is coming to town with the kids Thanksgiving week which is when I am due back at work.  I might as well enjoy the visit with her as we haven't seen each other in over a yr and 1/2.  We are so excited to meet the new baby and the rest of the kids.  I will find ways to keep myself busy and catch up on alot of things that I have not been able to do.  I know I have to take care of myself b/c this surgery was no joke and I am still finding it hard to move around without feeling lots of pain.  I have to get myself back to 100% or I will be no good to anyone.  So I have told my work that I will not deal with anything work related until I get back.  Although it was hard for me to do it was necessary.  I get to enjoy some of the time with my great niece/goddaughter Ana Leah.  Here she is with Avery :)

So here I am just 6 days post op and I am already at a loss of what to do with myself.  I know, I know, I should be resting, relaxing, reading etc.  Buuutt for anyone who really "knows" me then you know that the RRRs are totally impossible for me.  I am just not your relaxing kinda girl.  Heck I was already driving into work on Monday (yes, I was cleared by the dr.) to dispense some hearing aids.... When my work called me to say "hold up, we are waiting on the big boss to give you clearance"   Ugh.... So I decided to drive to my workplace and they were all shocked to see that I looked like nothing ever happened, exceptt my belly was a little bigger lol.  Now I only planned on dispensing aids until the 6wks. which requires no lifting whatsoever. So I thought I was ready to roll...Well I was totally disappointed to find out that I cannot even step foot into any of the nursing homes until I am cleared from my surgeon with NO RESTRICTIONS.  Ugh...Wow..

Hmmm, so it's a forced 6 wk vacation and I have no idea what to do!!!  Honestly, I only know my life to be in complete ciaos so this will be really really weird for me to have "me" time during the day.  The thing is "me" time usually entails shopping.  But since I am not making much money I am gonna have to find other ways to fill my day.  Maybe I should start by training this dog who is currently eating the legs off Janessa's barbie dolls as I type.  Guess I could come up with a whole list of things to do.  I mean I have already watched the two seasons of Jersey Shore :)  and got the new Ken Follet book that's 1000 pages.  There is always the Christmas cards (we know mine are always the first ones out).  I guess I will take full advantage of the chill time. 

On thurs I will fill my time with Avery, spending the night at Children's for his CTscan.  This will be or should be his quickest stay yet. The crazy thing is this is when I have the most time to be with him.  Go figure.  On the bright side it also means that he is feeling and looking great these days.  Hopefully the CT will be negative.  Isaiah has been doing great as well. We have tried the new meds for his migraines and they seem to help for now.  He is getting some good training on riding his bike which is so fun to see.

So I am going to try to enjoy my little hiatus b/c I know that although I am used to the "crazy", it's nice to get a break from it every once in awhile.  Don't worry, I am not taking it too fast and am taking care of myself.  I have the boys nurses asking me how many pounds my pocketbook is.  I even weighed it this morning, lol.  If I could only stop coughing, laughing and sneezing then I would be fine.

Wow!!!

Surgery went well but man, the recovery is going to be much worse than the three c-sections I have had.  I actually had two hernias (one ventral and one umbillical).  The ventral hernia which is actually from the incision that I had over the summer is the most painful.  It is so painful that I have a fanny pack with a pain pump that is filled with a numbing med.  I have to keep this on for 72 hrs.  It looks horrible.  I look like I am 7 months pregnant walking around with a fanny pack.  Nice!!!!

There is no lifting anything over 20lbs for 6 wks.  This is going to be so tough for me but I have to stick to it b/c I will not go through this again.  I have alot of people saying that I got these hernia b/c I did too much after the last procedure.  These hernia has nothing to do with my activities as I had NO restrictions following the last procedure.  They were due to the fact that I had 3 c-sections and tons of scar tissues, then adding the last procedure just made my abdominal wall really weak.  There is no way of getting around lifting the boys.  For this reason the surgeon put mesh to hold the abdominal wall in place.  There is a low risk of infections so hopefully that does not happen.

I am not able to go back to full duty work for 6wks, although I can dispense hearing aids.  Ugh,  I surely am going to go out of my mind being home for 6wks.  Its gonna be hard not to spend money especially since I will not be making any.  Guess I will be doing alot of reading.  Oh, I have applied to the Nate Berkus show for a room makeover (LOL), so far that is good use of my time off.

 I am praying that Avery will be well until his Angio next wk.  I cannot even imagine sleeping on a window sill when I cannot even roll over on my own, lol.  As you can see, I am NOT liking being laid up at all.  I am a go- getter so it's hard for me.  But I promise I won't be lifting over 20lbs.   unless is it clothes shopping, :)

It's Time!!!

My surgery is 9am.  I know I have totally dramatized this surgery but it is a big deal.  The family will not realize "how much" I do until I cannot do for them for a few wks.  They are in for a rude awakening.  The last surgery was simple b/c I had no lifting restrictions but this time around I will not be able to lift more than 15lbs for at least 3-4wks.  A bit unrealistic but I am gonna try to stick to it.  That means no trash bags, lifting the boys, work equipment and the many other responsibilities I have at home.  I don't have full nursing coverage b/c the state would not provide it.  Total BS!!!  Seriously, how am I expected to care for the boys even the first wk.  But I have no choice b/c we are our on own.  Gotta love Obama care.

Thankfully Avery has been doing great.  He has been tolerating his bipap nightly for over 12 hrs. and has had pretty good days.  It is going to be more difficult not to lift Isaiah.  He needs to get bathed, dressed and in his wheelchair by 8am during the week.  Plus the bending to feed him every hr. is alot. Not to mention getting him out of places he is not supposed to be in. The weekend it going to be tough but I think Rick can handle it :)

Janessa is already asking what is for dinner tomorrow night. LOL.  All good times.  Guess it is pizza again tomorrow. 

Next week Avery goes inpatient for his CT angio so I should be good by then but still cannot lift the big boy.  Rick and going to have to go and we will figure out the rest.

This all spells "New appreciation for momma"................

Oh forgot to mention that I got a majority of my work done by today but then my van decided it was done with all the driving.  Thank God I ordered AAA last wk.  Got a jump start after my last hearing aid was done and was able to drive it to get fixed.   See, it's our Crazy Normal Life :)

Sorry for not updating but it has been CRAZY since we got home on thurs. (yes, that includes Avery).  I think I am still in complete confusion about things and we have little to no answers.  But there was no need for Avery to hang out at the hospital when they were not doing anything that we could not do at home.  So if there is ANY opportunity for us to be home, then we are taking it.  It was a very last minute decision but the ICP attending dr. and Nurse Practioner (who is awesome) pulled it off within an hr.  Thank you ICP.

Basically there are a couple of issues:

1. The question of SVC syndrome-which is clotting or narrowing in the Superior Ven Cava (a main vein the drains the head).  This would give the appearance of a swollen face which Avery clearly has.  So the second echo was initially read as having a large gradient than the previous one.  They reported it in the SVC.  But just before we were leaving, Cardiology came by and said that the SVC was wide open and his heart looked great.  While it was good news it was confusing for us all (me and the attendings and NP).  We just all shook our heads and since the CT angio was already scheduled then we will still do it.  According to some xrays and the echo there is a clot somewhere???? Cardiology did say that there may be some blockage coming from the left side where he had his previous clots.  So we still need to do this study.  If it is a clot then he will start blood thinners (which will be tricky with lower platelets) or just do diuretics to keep the swelling down in his face, neck and lungs as needed.  But either way, we need so answers.

2. Is his decrease in urine output.  I am glad it did it in the hospital so they were able to see what we were talking about at home.  There is no clear cut reason for him not producing urine.  All his kidney labs looks fine.  The problem is that when he is not producing urine he starts to swell more and the fluid basically backs up in his lungs.  So a diuretic is needed to reduce his respiratory distress.  The problem is that it can be tricky to do this at home b/c his eletrolytes have to be monitored closely.  If you give him too much then his tissues will be dehydrated which could be just as dangerous. 

you can see how chubby Avery's face and neck is especially on the left side

For now we have a CT scheduled for the 21st.  We are monitoring his input/output real closely.  He is certainly happy to be home as always.  It worked out for me b/c I was able to do ALOT of work in the past few days and not have to feel bad about leaving him in the hospital.  My surgery is this Wed. and I am just trying to make sure I have enough nursing coverage for the boys.  I wanted to be able to get through the week and I did that including Janessa's sleepover.  There were 5 girls sleeping over and they did not fall asleep until 2am and were up at 6:30am.  Yikes.  They were very cute b/c the girls raided my closet and did a fashion show.  So grown up already.  Isaiah was getting a kick at watching the girls too. 





Silly girls

Possible discharge from the penthouse

Tomorrow is supposed to be the day.  I kinda gave up rallying for the "go home" day and am just going with the flow.  Totally new for me but we will see how it works out.  The CT scan was a no go for this week.  Anesthesia had the final decision and they felt better waiting another wk for his lungs to heal.  I totally get their stance b/c if he is intubated when he is still unwell then it will be more difficult to extubate him.  It's not worth putting him through that.  I am obviously not going to come back next week to do it b/c my surgery is next Wed.   Apparently the first echo was a bit fuzzy so they decided to repeat it today.  I still have not heard the results of it but the tech did say that the quality of the scans were much better than the other day. 

His sputom cultures came back growing a nasty bug that he has had before (stenotrophomonas).  It is unclear if he is currently infected with it b/c the culture pre-antibiotics were never sent.  These results are from 3days after antibiotics.  It seems that he is colonized with it and it's currently not making him sick so we will hold off treatment of it.  I don't want him constantly on antibiotics and risking him becoming immuned to them if the bug is not causing any issues.  As soon as he spikes a fever then we will start treatment.  Avery will only spike if he is sick with something so we will know. 

Also he is going to need another round of lasix tonight b/c his weight is up from 17.6 kilos to 18.2.  He is looking puffy again and a bit more junky.  So I don't feel like we have changed much for him in the week he has been here.  I have to see what the overall plan is tomorrow in rounds.  We are certainly not going to hang here from much longer if they are not doing much for him. 

I was happy to be able to be with the rest of the family to celebrate Janessa's birthday.  A big thanks to Diane and those awesome cupcakes.  I hope there is still some when I get home, although I doubt it b/c the looked delicious.  I am sure Janessa and Rick took care of them.  Oh and did I mention that Janessa is having a sleepover on Friday night and it is homecoming for Rick so lucky me gets to chaperon the sleepover.  Yay me or is it crazy me :)

Happy 10th Birthday Janessa!!!!!!!

Can't believe you are 10 yrs old.  Such a grown girl in so many ways.  We are so blessed to have you as our daughter.  Definetly the normal in our lives even if you convinced us to get this crazy dog that is now mommies responsibility :)  We love you baby girl. 

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So Mr. Avery is going be to hanging out here solo tomorrow so we can celebrate Janessa and grammy birthday.  He is looking much better thankfully.  Today was his first break off bipap since yesterday afternoon.  So it was apparent that his body needed the break.   All of his cultures are negative so far but a sputom cultures (secretions in his lungs) were not sent until today.  His secretions look a little off color so I suspect that this is where the infection is coming from.should be getting the CT scan hopefully wed. or thurs which should answer alot of questions.  So we are still in a holding pattern until he gets this done.  I hope whatever comes out of it is fixable with little consequences.  Again, wishful thinking.  But who knows maybe this time it will be an easy fix. 

This kid is giving me a heart attack.  Yesterday afternoon is was having some desats which is not unusual for him lately.  He sounded very wet and he had only put out 20cc of urine the whole day.  The nurse ended up putting him on bipap to see if it would help with the desats.  Typically, Avery will not tolerate the bipap when he is awake.  This time he did not fight which we now know is a bad sign.  Honestly within a 15min. timeframe he went from looking decent to gray and having major desats on the bipap.  Even at 100% O2 he was still satting at 83-84% for a good 2 mins.  I think my heart stopped just looking at the monitor and praying that he would come up.  Thank God he finally did but he needed alot of support to do it.  It is really really scary.

He was given lasix to take some of the fluids off him and hopefully dry up some of the fluid in his lungs.  Blood cultures, urine cultures and a slew of labs were done.  He was started on IV vanco and meropenum while ruling out sepsis.  He remained on bipap on higher setting.  Overnight they kept trying to wean his settings but then his blood gases kept tanking so he is back to higher than his normal settings.  He also spiked a temp during the night which is obviously a sign that some infectious process in going on. 

In light of all this, the CTscan is going to be posponed until we can get a handle on his respiratory status and fluids. It is just not safe to have him intubated for a procedure when his lungs are already sick.  It would make his chances of extubating him much more difficult.   He is still on bipap and not fighting it at all   So he is definitely sick with something but we just have not found it.   So we are in a holding pattern right now.  I just hate this disease so much.  I can feel him slipping away from us little by little and I am helpless.  There are no more simple hospitalizations. Instead they are complicated stays with possible ICU transfers.  It is going to be a busy week b/c I need to work and it's Janessa's 10th birthday but we will work it out somehow.  We always do.

Not so fast

I had a good plan to get Avery home on friday but he had other plans......

I was feeling pretty good about what came out of the morning rounds.  The attending agreed with giving Avery an enema for the constipation, a new gj tube and IV lasix to bring down the swelling.  We we on track with everything by 11am.  Which is pretty good for hospital time,so I thought!!!!! So when the attending came into my room asking to speak to me for a minute, I knew the whole plan was bust.  They did a chest x ray which showed pulmoray edema (fluid in the lungs) but would explain why he has been so respiratory the past few weeks.  When you have pulmonary edema then it is suspected that there is an issue with his heart.  Avery had an echo of the heart during the last admission which apparently showed a bright spot on his right atrium of the heart.  So the attending wanted to do a full cardiac workup to figure out what was going on.  The echo they did yesterday showed a gradient in the Superior Vena Cava.  What is could explain is the swelling in his face and neck area.  Which could indicate either a blood clot or some restriction in the vessel.  UGH.

So the plan is to do a Angio CTscan to look at the vessels.  Because it is a longer test and Avery is so hard to sedate, they will do the test under anesthesia in the next couple of days.  Depending on what they find or don't find will decide the course of treatment.  If it is a blood clot then blood thinners and if its a restriction then a stint could be placed.  Hopefully it is just nothing. 

This problem is not related to the pulmonary edema which is another issue.  His continues to put out low urine amounts and is needing lasix so that is also something that needs to be addressed.  He continues to be respiratory b/c of the fluid in his lungs. 

Guess the only good thing he got is he got a new gj tube and it went smoothly.  We will see what the next couple of days bring.  At point, I will no longer believe that Avery can come in for just an overnight stay.  He just much too complicated at this point.  Like my friend Susanna said, I just have to take it day by day. 

I was really trying to have a more positive outlook on things but perhaps not this week.  I have been overwhelmed by stress of work, kids, the dogs, ants, a broken wheelchair lift.  And last night was certainly the straw that broke the camel's back for me.  I am under alot of pressure with work right now b/c I have about 22 hearing aids to dispense just about all over the state of Mass and it has to get done asap.  Add to the fact that I am having surgery in 2 weeks and need to get it all done by then is totally stressing me out.  I have been stressed about Avery being on the edge and heading into the hospital which would make it real difficult for me to get my work done. 

Well here I sit in the hospital with Avery.  UGH

His j tube came out and we absolutely need it for meds.  He has to go inpatient to have it replaced and they only do it during the day and not on weekends.  I just broke down.  It was all too much for me to handle at once.  I know we should only need to be here for a night but it never happens that easily.  Of course on arrival Avery was satting at 87% and sooo junky.  Everyone who knows him could see that he is so fluid filled and adding to his respiratory problems.  Also he is filled with poop.  So my hopes of getting out of here today could be slim.  While I am glad that this is a minor hospital stay, at this point there is no time for it. 

I just really need to get through the next two weeks for work and my surgery and I think things will be better.  It is so incredibly difficult to have to work and care for two special needs kids, my daughter and dog (that follows me everywhere) my husband and a home(that has ants in the kitchen).  I am NOT superman and there is only so much I can take.  What I really need is a personal assistant.  Since I don't see that in the near future it is just me.