Home Again

After 10 long days, Avery decided it was time to get back home.  Thankfully.....I start back at work fulltime for the month of Dec. just to catch up and Basketball season starts.  We are back to the madness....... 

It was a tough admission for Avery b/c he spent the majority of his time being suctioned by so many different people. Even on the ride home today he was super anxious.  I think he was traumatized by it all.  Typically, when we suction him at home he is fine but tonight he was a mess.  I imagine it's gonna take a bit for him to start trusting people again.  He went to bed very easily tonight on his bipap. I do think he is happy to be back home and will adjust back to life before you know it.   While he is not back to his normal self, I think he will get back there soon.  So it is going to be busy for all of us around here this month. 

We had a great Thanksgiving with the family.  Although it was sad that lil man was not there it was definitely for the best.  With all the kids and some with coughs and runny noses, it would not have been good for Avery.  It was so good to hang out with my sister and the kids.  I was sad that her babies don't know their auntie.  They are soo cute.  We have to make it a point to see each other more often.

Rick was able to go see Avery after dinner and stayed the night.  I am sure Avery was happy to see his dad but he sure did miss his mom.  Avery has been struggling for the past 3 days with very high heartrates, respirations and tons and tons of secretions.  When I walked in this afternoon his hr was 186, O2 was 86% and respirations were in the 70s.  Not good at all.  The poor nurse that has had him was running ragged for the past three days with Avery.  His was in metabolic acidosis and his chest xray didn't look too hot either.  Poor kid was just soooo anxious with all his secretions and suctioning.  Because momma knows him best I suggested he get some ativan to calm him and it took a bit but it settled him down.  We needed to get him settled and on bipap and increase his settings.  What a difference it has made already.  His blood gases are back to normal and so was his lactate that was hovering around 5 all week.  I am hoping I can whip him back into shape so he can get out of here soon.  Avery just needs a very consistent plan and I think he will improve drastically.  He responds well to treatment if you know what to do with him.  This hospitalization has gone on much longer than I liked and expected.  After all it's crunch time...I go back to work tomorrow and basketball starts on Monday and off course Isaiah is in yet another retching cycle.  Aaaaahhhh.  That is another story and possibly a solution for another post. 

Hopefully Avery is up for the new plan of improvement and I am not gonna say any more dates of going home b/c I just keep jinxing myself.  So I guess I will take it one day at a time. 

Sadness....

While I have so many reasons to be thankful and not just b/c it's Thanksgiving but year round, I am still sad.  This admission has been tough in terms of alot of decisions.  After the rough summer that Avery had and losing some kids in the mito community and knowing the reality of where Avery is at, it was time.  Time to make some firm decisions of what is best for Avery and our family.  At this point, if Avery is going to the hospital it is b/c he is very sick and will likely end up in the ICU.  With that being said, Rick and I made some firm decisions about his code status.  We have decided that Avery is a limited code.  Meaning we will intubate him and ventilate but will not trach him or use any cardiac rescutation measures.  It was tough to finally verbalize it and get it in his chart but it had to be done.  We also made a Comfort Care form for the home.  This would be in case he passed in our home or anywhere outside the hospital. We would not be obligated to call the ambulance.  Avery has such a good quality life at home and we will continue to do that as much as we can. So while it was hard to final make these very grown up decisions, I feel good about them.  As it is best to make these decisions while things are good.

Also, Avery will be spending his first ever Thanksgiving in the hospital.  The plan is for us to stay home with the family for the day and it's what is best.  Nonetheless, it's still very difficult.  You just never know if it will be his last Thanksgiving.  I do have great comfort knowing that Avery is in good hands with people that love him.  It is his home away from home after all.  Plus it's best that he is not around a bunch of kids b/c he could be at risk to catch something else. 

The third reason why I am sad it b/c Avery lost his first tooth at only 4yrs. old.  :(  He is no longer a baby but a big boy.  I just wish I could stop time and have him stay a 2-3 yr old.  He is such an awesome kid. 

Hopefully, Avery will be home by Friday so that he can see the rest of the family.  Thanks all for reading and we are wishing you all a very HAPPY THANKSGIVING

Yesterday Avery had a great day.  He was back to his home settings on his bipap and when he was off which was a good portion of the day he was on room air.  So I was pretty confident he had turned a corner and was ready to go home today.  In fact, his discharge papers were all set. 

Of course Avery always has other plans and you never know what they are gonna be.  He had a great night on his bipap and was sleeping on room air.  Woke up looking great.....Then just before rounds he spiked a temp. and started to get very junky and increased work of breathing.   Sooooo, here we are...He is miserable right now and back on the bipap and we are not sure what he has going on.  So back to square one of drawing blood and respiratory cultures.  Not sure if it's the original respiratory infection that was not being covered.  We actually never got the final read from the lab b/c they kept amending the results.  So he was being treated with bactrim which is what we use for his typical bugs.  But apparently it was not what he needed.  So we have to get the original read on friday's cultures so we can figure out what he needs for antibiotics.  This means that there is a good chance he may not be home for Thanksgiving.

I have always said that if Avery is inpt. on major Holidays that we will still celebrate at home and come visit him later in the day.  Afterall, he doesn't know it's a holiday but Janessa and the rest of the family does.  He will be in great hands so I don't have to worry about that.  Just hoping we can get him well and home soon.  I will keep you all posted.

Sorry for the late update. Avery has been steadily improving. He has basically been on bipap since we came into the ER yesterday morning. Since starting antibiotics, he has not spiked another fever, Yay. As suspected, his sputom cultures are growing his typical respiratory bugs. Everything else has come back negative so far. So that means the antibiotics is exactly what he needs plus his regular suctioning, bipap and chest pt. So far he has not thrown any surprises our way and I don't expect him to because he knows we want to be home before Thanksgiving :). The plan is to start weaning his bipap setting , maybe a blood transfusion, and eventually off bipap during the day. I think it's doable.... Guess we will see.

Surprise, Surpirse!!!

Avery coughed all night long and was very junky.  He woke up smiling and rocking a 103 fever.  I was trying to stay at home but we know how that usually works out for me.  I at least ran blood cultures and other labs which are probably usesless at this point b/c we are heading into the hospital.  So I am sure Children's will get much faster results than the lab.  I am suspecting a pneumonia of some type and praying it's not the flu.  That will not fair well for Avery.  Last time he got the flu it landed him in ICU for a couple of weeks.  I am so glad Avery also decided to wait just before my return of work and Thankgiving.  Hoping to be home by the time my sister arrives on Tues or at least by Thankgiving.  Avery typically doesn't care to spend the major Holiday's inpatient.  I will keep you all posted.

Still Clueless

Avery spent his entire day today gagging just about every 10 mins.  As my nurse said, he was content gagging.  Nonetheless, it's so frustrating.  It's so difficult having a child that cannot tell you what hurts.  It is all a complete guessing game.  We are currently doing a dye test to see if maybe his j tube is not in place but somehow I doubt it.  There is no fever, signs of pain or poop.  I was initially thinking he had the stomach bug but he is not showing any signs of belly pain or other symptoms.  If you move him in the slightest he will retch, gag or vomit.  Because he is gagging so much, he has now developed a dry stridorous type of cough.  The biggest concern still is the aspiration pneumonia.  The Chest PT therapist came today and said he sounded real junky.  He sounds ok now but that can always change.  With Avery, there are typically these little things that quickly lead up to something big.  So we drive ourselves crazy trying to figure out what he is trying to tell us.  Either he is going to get real sick or not.  I am hoping for "not".   I will continue to keep you posted.  I suspect he will be able to ride this out at home until I see some serious signs that we cannot handle at home. 

Something is up????

With my lil man (Avery of course).  He has been pretty much vomiting meds since Sunday.  Today was especially worse.  He basically woke up gagging, retching and vomited his 11am meds.  He did that all day long which is not good for a respiratory kid. He has been a junky monkey.  He also has been having high heart rates which is typically a sign that a fever is coming on.  So far no fever.  I have been fighting with him to take the bipap and he is finally taking it but needing 4 liters of oxygen with it.  I would be unbelievably surprised if he does not develop an aspiration pneumonia with all the vomiting he has been doing.  Especially b/c he woke up from his nap vomiting.  The only change he has had it that we added 10cc p/h (which is basically nothing) of water to overnight to help with his bowels. Well his bowels have been great (fixed that).  I just cannot imagine that his gut is THAT bad that an extra 90cc of water would cause him to vomit all day.  But then again, it could.  It's so frustrating b/c you try to fix one problem but then you end with more problems.  I am just hoping that we can keep him stable enough to stay home.  I have stopped the measly 90cc of water in hopes of settling his tummy..  Maybe it will be as simple as that and he does not aspirate.  You never know with these crazy boys, he could also be back to normal tomorrow so stay tuned...........

What's up with Sunday's

I swear these boys are trying to kill me on Sunday's.  Every other weekend I don't have a nurse from 5p on Sat. until Monday morning.  Typically I don't mind b/c it's nice to have my house and my kids to myself.  However, the past few Sunday's certainly has me questioning why I liked not having a nurse :). 

Exhibit A (the crime scene)



Isaiah woke up first thing in the morning retching.  I assumed at first it was b/c he had not had a bm on sat.  Often times he will do a bit  of retching prior to a bm but then it will resolve once he does go.  Not the case on Sunday.  I had given him miralax and a suppository in hopes of resolving the retching but that would have been too easy right??? I forgot to mention that I had come home last the night before b/c I went to a friend's house warming party.  So needless to say I was NOT on my game on Sunday.  Not that I expected the boys would be angels but I guess I hoped.

Meanwhile, Avery had gotten his morning meds which is a very slow and long process.  He has the tendency to vomit right after his meds regardless of them going into his j tube.  He "should not" be able to vomit according to most drs.  Somehow Avery has defied that theory and will vomit within seconds of getting the water flush.  This Sunday morning was certainly no exception.  Once I finished the flush, within seconds he starts vomitting (very large amounts).  As you can see from Exhibit A, Milo felt the need to clean it up.  Ugh.  You can also see that Isaiah looks miserable b/c of course he continued to retch horribly. 

So that was pretty much the pattern until about 12p.  Avery started to get very junky from all the vomitting which then creates its own respiratory madness.  Thank God for naps, put them both down and was able to pour meds for the afternoon, evening and the next morning as well as prepare Avery's TPN, Isaiah's insulin and make formula.  So much for relaxing while they sleep, baaah. 

Once they got of from the naps Avery looked much better and I guess decided he had put me through enough.  Isaiah however had other plans.  He continued to get worse and worse as the afternoon progressed.  His blood sugars were over 340 which is really high for him.  I feel like he is barely a diabetic on most days so when he gets high numbers like that it does make me nervous.  He has parameters to add another insulin but I decided to wait a bit and recheck.  His numbers did come down to 250 which was much better so I did not give him the humalog.  Isaiah continued to look real bad.  I had him on the pulse ox and he actually desatted to the 70s which also scared the crap out of me.  I am so used to doing all the running around and being scared to death with Avery so when it comes to Isaiah I feel a bit lost.  Now mind you, prior to Avery coming into this world I used to call the ambulance on Isaiah on a pretty regular basis.  He has just been stable over the past 4 yrs that I forget about how "unstable and scary" he can be.  I also have to say that I am NOT liking his cycles AT ALL lately.  He is just getting sicker and sicker with them.  We have totally run out of options for treating them.  The last one was depakote and our genetic and GI dr. are dead set against it for Isaiah.  It can cause permanent and quick liver damage on a kid with Isaiah's mutation so it's not worth it. But it is hard knowing that there is not much we can do about it during these cycles.  It's heartbreaking actually. 

By the next morning, it was as if nothing ever happpened.  Isaiah was back to his crazy, crazy self and Avery had only vomitted once yesterday.  Hmmm, and my nurse was worried about that.  If she would have only seen them the day before.....I did manage somehow to give Avery his first low low haircut.  That boy's hair grows like a weed.  I actually call him "Juan Epstein from Welcome back Carter", lol.  But now he looks like a grown up handsome guy :)

Hopefully the next Sunday I have no nurse these boys will have some mercy on their momma. 

It's actually been a week of good news!!!!!!

First off, my nursing case manager called to let me know that they have changed their decision and Isaiah will be approved for the 70 hrs. for the next year.  YAY!!!!! I am glad that they were being reasonable b/c I would have not had a problem appealing it if things went the other way. 

I did Avery's labs this week and they looked the best they have ever looked.  His blood counts look better than mine, lol.  His H/H were 13.6/37.5. wow.  This means he is not anemic in the slightest.  Also, we checked his Igg levels since increasing his sub q immunoglobins at home and they are back up to 700 which is within range and hopefully enough to keep infections at bay for sometime.  He has also lost a couple of pounds which was much needed b/c he had put on too much weight much too fast.  It was really affecting him respiratory wise.  Now he is doing great in that area since losing a bit a weight.  He is able to cough easily on his own without drowning in his own secretions. 

However, we are still seriously battling Avery's constipation issues.  I am just really frustrated with it b/c I refuse to do anything surgical for him.  We are changing around things again to see if we can get him to go on his own and not be dependent on suppositories b/c eventually they will stop working.  It may be a long shot but we are going to try giving him water overnight through his feeding tube.  He has not been on anything through his gut overnight b/c he was having so many pain issues.  But it seems that he is not getting enough water to work with the stimulants we are giving.  He is very gaggy and uncomfortable if he even goes a day without a bm.  So I am really hoping we can find a good solution for him.  I mean he is doing well in so many other areas.  It would be nice to have him doing well with everything.  But I know I am fooling myself b/c that does not happen with mito kids especially as complex with Avery.  There is nothing wrong with hoping, right!!!!!

I am getting really excited b/c my sister will be here in less than 2wks.  I miss her and the kids so much, it's been too long.  Janessa and my nieces are so close in age and never get to see each other so it will be really cute to see them all together.  They are all like little woman.  It's gonna be a busy couple of wks and then work for me and basketball season for Rick.  Crazy, Crazy........

Please make sure you check on some of our friends on the side bar.  There are alot of kids that continue to need your prayers, especially Eithene, Cooper and Kyle.  Thanks

I had sooo much to say and it was going to be this deep blog about reflection.  It was actually really good, could have been the start to my book :)  Unfortunately, I lost the entire post.  So in my book, it wasn't meant to be, right!!!!!  I will save it for another post.  Darn, and you would have learned sooo much about me.  Oh well...

Alot of people have been asking how I am feeling and thank you for all the good wishes.  I actually feel GREAT.  I saw the surgeon a couple of weeks ago and she basically asked me when I was ready to go back to work.  I figured I might as well take the time b/c I am never going to get it otherwise. She said to listen to my body and go at my own pace.  I even asked about the gym and she was fine with that. Of course I took that as a green light to head back.  Don't worry, I have been taking it slow and feel good.  I know my body and it's limits.  Apparently, I had so much scar tissue from all my c sections and last surgery that my uterus was literally stuck to my abdominal wall (eek) and add two hernias to that and it all = one HOT MESS.  So considering all that, I am doing great. 

Avery has been doing really well.  Aside from being up at the crack of dawn due to the time change :)  I am just really really happy where he is at with his health.  We continue to take things day by day but he gets such good nursing care which  s the main reason why he is doing so well.  When I say "well" it is definitely a relative term in this household.  It just means that we don't have the phone in hand, ready to call 911. 

Isaiah is so handsome and doing really well when he is not in a cycle.  I have been thinking about him alot and making sure not to take him for granted.  He is such an awesome kid.  That laugh of his just brings an automatic smile to your face.  He just kills me how he is no longer into Sesame St. butr just loves himself some Spongebob.  He has the biggest belly laugh on the most random scene, lol.  Such a big boy.  Although Avery is not too happy about it b/c he loves himself some Sesame St.  They are too cute.

Janessa is such a grown girl.  I am so proud of her b/c she is nothing like me, she is very shy.  So I am so happy that she is in the Drama club and got the part of Charlie's mother in Wily Wonka and the Chocolate Factory.  I think this is going to be really good for her.   Can't wait to see the play in Feb.  :)

Just enjoying the next three wks off.  :)  Lots to be thankful for.

Random Pictures

As you can see, everyone it happy.  I couldn't resist getting the shirt for Analeah :)

So as you can see I have made some good use to my time off.  I hope you all like the new blog.  At the top is a new guestbook which should make it easier to leave a comment.  Also feel free to check out some of my friends and all their beautiful children (most of whom have mitochondrial disease).

On the home front, things have settled back down.  Isaiah finally started feeling good yesterday afternoon.  It was a "true migraine" b/c it lasted for 3 full days.  Once he is out of it, he has a huge burst of energy and ya better watch out b/c the true wild man comes out.  It is so good to see him back to himself.  I am so used to Isaiah doing well and when you see him suffering like that it is disheartening.  I woke up in the middle of the night the other night in a panic b/c I must of had a dream that he died.  I could not shake it.  I am used to deal with crisis with Avery and how sick he is and trying to prepare for losing him first.  So it hit me the other night that I could lose either one or both at ANY point.  Nothing is for certain.  Okay that was totally depressing but you know I speak what's on my mind.

Remember I said "something" was bothering Avery.  Well we know momma knows him best.  Apparently he was so miserable b/c he was backed up with poop.  Despite having daily bm's, it was not enough.  So he was fussy, retchy and his j tube came out again.  This is exactly what he did last month.  Rather than rush  to the ER just to be admitted (which I had zero interest in doing), I had the nurse put a mickey in (a g tube button).  So we had to stop the unnecessary meds and only give the essentials. He had an appt. the next day for a new tube.  I wanted to give him a good clean out before putting a new tube in.  I am sure if I called any dr. they would have him go in and be admitted but there was no need in my opinion.  He was not sick and was fine with the meds we were able to give him.  So things worked out.  The long term issue is what bothers me more.  I spoke with his GI dr. and he felt that his motility in his colon is quickly progressing and if we are not able to have a regular bm regime (whether its stimulants or enimas) then surgery is our next option.  I am NOT at all interested in an ileostomy or colostomy or any surgery for that matter.  We will just deal with things day by day and cross that bridge if we ever have to get to it.  I am not about to due any surgery for Avery unless it is absolutely necessary and can make a positive difference for him.  As you all know, I am in the camp of less is more and it has worked thus far :)

I am already going back to work in THREE WKS. so I plan on enjoying my time off and getting alot of things done.  Also counting down until my sister and aunt comes.  As much as I love having my great niece and she is an awesome baby, its time for me to enjoy my time off.  You know I will be back to the crazy life once work starts.  So I have got to get alot of things done such as 30 online CEUS, christmas cards, and Christmas shopping before then.

I was initially planning on posting about feeling so blessed that things have been so good around here.  And they have been but when the boys have a rough day, it slaps you back into reality.  Isaiah has been in a bad migraine cycle since yesterday and "something" is bugging Avery. 

The thing about Isaiah is b/c of all the state cutbacks they wanted to cut his nursing hrs.  I'm just really upset about it.  Isaiah care is often overshadowed by Avery's illnesses.  Therefore, many healthcare professionals do not see him as being "complicated".  This is totally off base.  The reason why Isaiah has only had one inpatient stay in almost 4yrs is b/c of all the nursing care he gets.  The reality is that his migraines have become so much more severe along with his diabetes and many other issues that come about during his cycles.  It is awful to see how much he suffers.  So I let the caseworker know that I am appealing it and I have a pretty good argument.  I think the state just wants them to cutback nursing hrs. as much as they can without the parents fighting.  Well they obviously barked up the wrong tree.  My kids do not get alot of extras simply for being disabled but nursing is something that they deserve and will get what they are due.  Isaiah's quality of life is greatly affected by his migraines so it is easy to get down when you see him suffering so much.  He should be perking up by tomorrow, hopefully.

Avery was been fabulous for the most part.  I have been reluctant to celebrate but will quietly say that it has been a yr. since his last central line infection.  He has only had two line infections of the three yrs of having a central line and last two yrs. of them being with TPN 7days a week.  I am hesitant b/c I certainly don't want to jinx myself but it IS something to celebrate.  He has gained 15lbs in the two yrs. he has been on TPN which is awesome.  He is like a football player :)  Although he had a rough summer his infections have been significantly reduced since starting IVG.  His pain is being managed so much better although he is on enough methadone and valium to kill any one of us, but hey it's working for him.  He loves, loves, loves school.  In fact we finally applied for his Make a Wish and are going to apply for a computer with a switch for him.  Buuutttt, over the last couple of days he has been super fussy.  It is very difficult b/c he cannot tell us what is wrong with him.  It is a complete guessing game.  There really is no other drugs we can give him to alleviate his pain b/c he is on huge doses already.  I know something is bugging him when he whines unless you are right near him and he is up fussing during the night.  It's probably his belly but know real way of knowing. 

So the boys have not had a good couple of days but this too shall pass.  Isaiah will be back to his crazy self by Wed.  and so will Avery.  I am grateful for anytime I get with my boys feeling good.  Just sad that it was Halloween yesterday and the boys did not feel good so it was not worth dressing them.  It brought back the reality that Janessa is our only child that we get enjoyment out of the Holidays.  I'm sure it sounds harsh but it is our reality.  Even if the boys felt good, they would be in bed before trick or treating starts. They are just too tired to stay up that late.  I am grateful that we have her to share the normal with. 

This was supposed to be a positive posting and I think I have some happy stuff in there???Once I start typing it just flows however its going to.  I never review what I post (thus the grammatical errors!!!).  

I will end it on a huge positive, I totally forgot........

So I am a huge Starbucks lover.  I don't even have to put in my order b/c they know what I want already.  Anyway, I was there last wk and the Manager wanted to speak to me????They do a toy drive every yr. and usually give to the same organization but wanted to change it up this yr.  She said the first person she thought of was me and my family. They know Avery spends alot of time at Children's so she wanted to give the toys  to his unit.  I felt so honored and happy.  Avery's home away from home (ICP/MICU) is in need of alot of toys for their child life department.  I immediately contacted them and they were thrilled and it felt good that through Avery in some way other kids will have toys, videos, and games to occupy themselves when they are so sick.  What a great jesture and a great way to end this posting.