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.