This Boy!!!

Is truely amazing!!!!

He is like a new little man. Rick and I knew with time and patience Avery would take care of business. This morning he was sleepy on the bipap and retaining CO2 again. But I told the nurse to take him off, give him nebs, chest pt and a good suction and he would perk up. Mama knows her boy because he had the best day since he has been here. He sat up for a good portion of the day without bipap and was happy as can be. He required only a couple of suctions and some O2 and had a great day. Wooohoo.

I actually had a full day at work and it was amazing to walk in to see him sitting up and doing so well. Although I was a bit shocked when the nurse showed me the back of his head that had an area that was completely bald. I almost died which is crazy to worry about some hair on a kid that already has a mop especially after all we endured in the past few wks. Although it was nice to worry about minor thing instead of these life threatening events we have been dealing with. Plus he desparately needed a haircut anyway. Lol.

Avery still has a ways to go to get out of here but we are hoping this was the worst of it. The narcotic wean will be tough but they will take their time so he won't have withdrawals. Tonight is my last night here until Monday. I like to have the weekends with Ness, zay and Milo. I am taking Isaiah to see Avery for a bit on sat. I'm sure they miss each other.

Thanks for all the prayers and good wishes, it feels wonderful to finally blog good news. I am hoping Avery doesn't have any silly tricks up his sleeve because I think we've had enough drama for awhile.

It started off with a BANG!!!!

Bright and early at 6am I was awoke by a bunch of voices in the room.  I opened the curtain to find a bunch of people hovering over Avery (never a good sign).  Apparently labs were done and they showed that Avery was very acidotic (meaning he was working too hard to breath and he was not blowing out enough CO2 making him very sleepy).  He was on his home bipap settings and apparently they were too low for him.  Basically he spent his day getting the life sucked out of him, literally.  Poor kid has so much secretions that I feel like he must have lost a couple of pounds with all that was suctioned out today.  He was able to come off the bipap for a total of 3 hrs. today which was a bit better than the last extubation. 

Rick and I are just emotionally spent.  We are trying our hardest to not rush to doing a trach.  It's not that we wont do it.  Obviously if he needs it then he needs it.  This is a huge decision and has alot of effect on our family lives.  Where he is sick with pneumonia, we don't want to jump to our decision and do something that will be permanent for him.  There are alot of opinions out there but ultimately it is ours to live with whether we do it or not.  We want to out Avery's needs before our own but it is not easy when you know it limits him even more.  We have a hard time keeping Isaiah from pulling his tubes now so I cannot even imagine adding another thing for Isaiah to get at.  It's also upsetting to think that if Avery does get a trach that I will have to separate the boys so Isaiah cannot get at him and also the dog (is that quality of life?).  Then thinking of traveling with Avery is another thing.  It is just alot on our family.  We may not have a choice if Avery decides otherwise.

We keep asking ourselves, how did we get here?  This was a preventable situation that has spiraled out of control.  I have so much anger over it all.  I am mad that we have to make these big decisions now where Avery was doing great before all this.  I am sad that now he will not be able to go to school in the fall.  I am upset that I only get to see my other kids on the weekend.  I am stressed about finances b/c no matter what, life goes on and we still have to pay the bills which means I still have to work through all of this.  I am heartbroken that I have not been able to do anything with Ness during her summer vacation.  Poor Isaiah probably forgot who I am.  It's just not fair and it sucks like crazy for our whole family.  There is no end in site and we have so much work to do to get Avery home.    It just been hard on Rick and I but at least we are getting through it together.   As you can see it's been a hard day and I cannot even imagine how hard it has been for Avery.  Smiles were very few and far between today :(

Take Two

Avery was extubated this morning.  He was put on 50% oxygen through the funnel mask you see (which is really only 30% O2) and doing well.  He has a TON of secretions due to the pneumonia and is coughing alot but also needs lots of suctioning and chest pt which you see him getting in the picture.  Avery will still need the bipap for naps and bedtime but I am confident that he will be successful this time.  There was lots of talk yesterday of traching him if he fails this extubation.   Rick and I have finally decided that if its what he needs then he will get it.  We of course hope he can do without it b/c it is just another thing added to his crazy medical care and our home care.  It will add alot to our plates and I cannot even imagine Isaiah and the dog trying to get at it.   I am sure sometime down the road we will have to revisit this but we are hoping it is not right now.  Avery has a long way to go for recovery and the next few days are important in assessing his respiratory needs.  We will also have to tackle his narcotic wean at some point which will also be very difficult.  I am so grateful that he is such a tough cookie.  This boy has been through too much over the past couple of weeks but he is still smiling.  I will keep you all posted on how he is doing but please continue to pray for him. 

I am not sure if you can tell but Avery was full of smiles when Grammy and his sister came for a visit.  He was so happy!!!!

The vent has been a good break for him and they have actually been able to wean his settings a bit.  My personal opinion and I know it to be the truth is that he was so claustrophobic with the bipap on that he got himself so worked up and that is why he crashed.  He does have pneumonia but it seems to be resolving.  I definitely feel he will be able to come off the vent without us needing to make the decision to trach him.  This is not something that Rick and I want to do but if we have to we will.  I just think we need a better plan for him coming off the vent and whether that involves no bipap or a nose mask instead of a full face mask or just O2 then that is just what is going to be done.  Avery still have a long road ahead but this boy is tough as nail I tell ya.  He also seems happier on the vent b/c he can see you and he is not cut off from the world.  We have also been able to put his cochlear implant on him which opens up the world even more for him.  We will continue to take things one day at a time.  I just want my little boy back to the way he was before all of this.  I wanted to thank everyone you has helped us with food, taking care of Ness and Milo, listening to Rick and I  and also for the nurses taking good care of Isaiah at home. 

Sorry for the lack of updates but it has been a really rough few days.  Unfortunately, Avery had not made any progress with the bipap.  The team termed it "failing extubation".  We were basically chasing our tails and it caught up to us.  Avery has been fighting the bipap since Wed. requiring meds that should knock out 2 horses but had no effect on him.  He respirations were on average in the 80b/p, heartrate up to 210 and high blood pressures and constantly crying.  It was unbearable to sit by and watch him constantly doing this with no relief in sight.  By this morning I told the team that what we are doing in not working and we need a new plan.  Avery decided the new plan needed to take place immediately after rounds which required him to be reintubated.  His poor body was so exhausted and he was so angry about having the bipap (which is a full face mask and equivalent to sticking your head out the window of a car going 60m/h).  Add to the fact that he cannot hear or see well with the mask just completely put him over the edge.  I am actually relieved to see him breathing better b/c I don't know how long I could continue to see him working like that.  He also now has pneumonia which also complicates things now.  Thankfully he started antibiotics yesterday so hopefully they can get a handle on it soon. 

Rick and I have literally been through the ringer in the past 2 wks.  We now have to start making decisions that we did not want to have to make.  Also we have to prepare ourselves for the hospital life for god knows how long.   We are going to sit down with Janessa this weekend and make a schedule on the days mom and day will be in the hospital.  She is going to visit Avery tomorrow and we have officially decorated his room with family pictures.  I don't know how we are going to juggle work, kids, and Avery's recovery but we will get through it.  I guess just one day at a time!!!!!!!!!

Minor setbacks

The two things that Avery needs to get out of here is be on his home bipap settings and wean off the fentanol and versed that he has been on since he was intubated last Monday.  It sounds pretty easy right? Well not for Avery :(   He has not even started sprinting off bipap for even an hr.  Heck he cannot even go 5 mins before he drops to the 70-60% and turns blue.  He is requiring alot of suctioning and chest pt.  He is having even greater difficulty with the meds.  They have only reduced him by 20% and have had to give him boluses of the meds b/c he is already showing signs of withdrawing.  This poor kid.  I just cannot believe that after having such a good year, he has to endure all of this and who knows with what long term effects.  It just totally sucks.  I am coming to the fact that we will be here for at least another week or more.  I am now at the point that I HAVE to go back to work.  Handling all the stuff that I have not done at work, the kids at home and seeing Rick is just alot.  Thankfully I had a post op with my surgeon and had no restrictions b/c there was no hernia and more adhesions.  I cannot even imagine adding a long recovery to this situation.  In all other respects, Avery's labs continue to be negative for any infections and his platelets have recovered.  We just have to give his body time to heal as long as its gonna take him. 

Avery was finally able to be extubated successfully today. YAY!!!!

They had to bag him for a bit and he immediately needed to convert to bipap. I am told this is going to be a long process to wean him to his home settings. If he is taken off for a few mins. To be suctioned then he drops to 60%. They do what is called sprinting which he is started with one hr. Off a day then 2hrs..so on ( you get the point). They have to go slow because he was on the ventilator for a week and that's a long time to have a machine breathing for you. The other problem is the meds. He was on while on the vent need to be weaned. For Avery, this is also going to be a slow process. We don't want him to withdraw. Basicallly we are gonna be here for awhile :(. But I want him to be back to baseline before taking him home. I am also worried he may be chronically sick then before this hospitalization bc of the vent and all he has been through this wk. We have worked long and hard to keep Avery healthy and happy and I hope & pray we get that little boy back.

He certainly had come a very long way from last week and for that Rick and I are so very grateful. Avery is one tough cookie for sure. I am also thankful for all the great care he has gotten at Children's. Thanks for all the good wishes. It's all uphill from here folks :)

We were hoping to extubate Avery yesterday but an xray showed his lung were filled with fluid. They worked really hard overnight with chest pt and lots of suctioning. He is full of smiles and looking great this am so we are hoping the tube will come out today.

Infectious Disease spent ALOT of time on Avery's fungal cultures. It took over 5 Drs./scientists to come to the conclusion that the one positive cultures was a contaminate. Phewww, thank you lord. This means his line gets to stay and he will get off of two iv antibiotics. Yay. His spinal tap was clear of meningitis and every other test he had was normal. So that only leads us back to my oringinal diagnosis which is the ivig.

Turns out that the product Gammagard had 2 lot # that were recalled in May of this yr. We had the notes from the homecare company and Avery has definetly gotten that batch in April which was his first reaction. Where he reacted every month after that one can only assume that he got that same lot #. I am so angry bc I have been arguing with immunololgy all week about the ivig and even got flack for refuses future ivig. After what Avery has been through and nearly died over it I am certain he will not be getting it anymore. I just don't understand how this product was sent to us for two months after the recall. I hope other families don't have go through what we have this week.

Thankfully for Avery he had the will to fight through this. I should be extubated this morning and hopefully we can get out of here soon. Again,thank you all for you continued prayers. My man is something else isn't he :)

Frustrating Day

Avery was heavily sedated most of the day because he was getting so many diagnostic tests such as CTscan of his belly, echo of the heart, spinal tap, and an eye exam.  These were all ordered to rule out fungal balls that can hide in many places in the body and cause great harm.  Thankfully, all the test looked great.  However it leads us down a dead end.  The fungus that grew on his line on Sunday was Paecilomyces.  This is almost never seen in humans and only those severely immunocomprimized.  Avery does not fall into the severely comprimized category.   So the question is "Was it a contaminate?"  The Infectious Disease (ID)drs. said that is a highly unusual contaminate.  Since he only grew out Sunday's cultures and not any day after it seems it could be a contaminate.  So then we are still left with the question of what made him septic if it is not a line infection.  And if we drop the antifungals IV antibiotics and it actually was an active infection then he could get just as sick again as he is now.  ID want to dig for more reasons as to why he could be septic which is why they did the spinal tap.  Unfortunately we could not do it early in the week b/c he was bleeding out so it could be a little late to get accurate info. from the spinal tap (another dead end).  Or is it just a severe reaction from IVIG. 

These are all questions that we need answers in order to give him the proper antibiotic coverage or to know if it was the IVIG (although I have no intentions of ever doing it again).  So as you can see it has been a frustrating day. 

But on a great note, Avery is being extubated tomorrow (coming off the vent).  This is huge and I think he will be successful because his vent setting have been weaned to the minimal settings.  I cannot wait to see his face and a smile without a tube down his throat.  The boy is truely meant to be here and I am soooo happy as I really cannot imagine life without him.  He puts the CRAZY in our normal life but that is just fine with us.  We could use some prayers that things go smoothly tomorrow and for some answers as well. 

My heart is smiling!!!!

This morning I woke up totally out of fuel and just plain exhausted.  I have not even had an opportunity to recover from my surgery before being thrown into a major crisis.  But Avery turned it all around for me today.  Around 10am the nurse was changing his diaper (he of course gave her a shower) and his eyes opened wide.  I sprung from the chair and he looked at me and gave momma a big smile.  I had tears of joy.   He is offically all personalilty today.  Crying when mommy leaves and eying drs who approach him.   That's my boy.  One of my biggest worries through all of this is that he would recover but lose all of his personality.  That is the only thing that this horrible disease has not taken from him and I cannot imagine him without it.  So today I am sooo thankful and blessed to have my little man back.

WARNING INTENSE MEDICAL JARGON BELOW!!!!!!
Of course we are not out of the woods yet.  He has alot of obstacles to overcome.  The first is he is growing a highly unusual fungus that is hard to treat (true to Avery fashion).  Surgery and Infectious Disease want the line pulled as soon as possible but both myself and the ICU team know it is not realistic.  Avery literrally needs about 10 lines right now and he has only 2 peripheral IV (one is on its last leg) and his double lumen broviac they want to pull.  Problem being is he is currently getting 4 IV antibiotics, 2 IV sedation meds, TPN and IV potassium plus blood products.  So the math does not add up, right?  Where he is medically stable right now we don't feel the need to rush pulling it until they know he has the bug in both lumen of his central line and his blood stream (which would have caused him to be so sick due to being septic).  Unfortunately, fungus is a very slow growing bug and this is not good for us.  We basically need to find the species of the bug (for proper antibiotic coverage) and have negative results before they can put a new central line back in.  As it stands we only have the first round of postive fungus from Sund. night.  Nothing is back from Mond, or Tues.  so you see we need these to show us what is going on before a decision to pull his line is made. 

Second big issue is when to extubate him from the vent.  A few things affect this as well.  The main issue is the poor kid is so fluid overloaded and bloated beyond belief.  This poses a huge problem b/c if he is bloated on the outside, then what must his airway look like.  His vent setting have been weaned significantly which is great news.  But if we extubate too early  and he is not ready then he will have to be reintubated.  His stomach is huge right now which is a problem b/c he needs his stomach muscles to help him breath effectively.  Also they will not extubate until a decision is made about a new central line b/c he will still need to the vent for the procedure.

On a good note, Avery's bleeding from his g tube has slowed enough that the platelets they are giving him are keeping his number in a reasonable area.  He has gotten a total of 3 platelet transfusions and one red blood transf. and so far has not needed another one today.

Your head is probably spinning with medical overload.  So I will end it here.  Slow and steady wins the race.  I will be going home tonight to finally sleep in my own bed.  Avery's favorite nurse is on tomorrow and the nurses he has had have been great so I feel it is time to take care of me now.  Thanks again for all the love, prayers and good thoughts. 

Just wanted to thank everyone for your continued prayers, they are certainly working.

We finally have an answer as to why Avery is so sick. He came back positve for yeast in his line. Of course this is not good. But it does explain alot. I still believe that this was all triggered from his IViG. He had a reaction which suppressed his immune system thus causing the yeast he is colonized with to become active. The timing is just too much of a coincidence to think otherwise. However the immunologist are the only who don't believe it. I had it out with the attending bc she told me I was putting my child's life in jeopardy by not doing ivig (are you kidding me , he is on a vent from ivig). We will deal with that later though bc right now I need to get through this crisis.

Avery us holding his own though , he is responsive to touch and kisses which is so reassuring. He got a second platelet this morning. They weaned down his vent setting during the night but then his chest xray looked hazy so they had to up his setting and he was becoming acidoitic. Another issue is his belly is very hard and distended. But with low platelets he cannot get and type of enemas or supps. At the risk of bleeding which is the same as why he can't get chest pt to help move secretions. Another major issue is whether they are going to pull the line or not. My choice is to treat through for now bc we are still waiting on more cultures. I don't want to rush into anything.

We are just taking day by day. Avery is a strong little boy. I will update as much as I can.

This will be quick bc I am completely exhausted. Avery got real weak and tired this afternoon. They called a code bc he desatted as low as 35% while on bipap. They ended up intubating him and he has settled in on the ventilator. It is the break his body really needs right now. He has some active bleeding and is not clotting, requiring a platelet transfusion which he got. He will also get another blood transfusion and some meds to help Jim clot bc this is our biggest concern right now. They have him well sedated so he doesn't fight the tube. Thankfully he seems comfortable which is so important right now. The next 48 hrs are gonna be big for him. Rick and I are so overwhelmed by everyones thoughts and prayers, thank you. I am certain that Avery will pull through this. I will keep you all posted.

He is one sick little boy

Avery's fevers finally broke last night and was was placed on bipap and had an uneventful night. This morning he wad still sleeping on bipap which is unusual bc he is typically crying to come off. At first I just thought he was tired from his day yesterday. But he was not rousable at all. They residents were nervous and ran labs. His blood gases were showing he is retaining CO2 and his platelets dropped to 25. That is critically low and not in the direction it should be heading toward.

His pallative dr. Was very concerned and thought he needed much more ventilation support. The other concern is he is in DIC which can be fatal bc you basically bleed out. He is showing signs of being septic yet all of his cultures are negative. The only thing he is not being covered for is yeast in his line. He will be covered with yeast antibiotics. So all in I am very scared and need prayers.

It's been a long day

Avery has continued to spike fevers continuosly since last night. The highest today was 105(I about had a heart attack). He has had numerous infections and been septic twice and has never been that high. Adding to the fact that he has slept the entire day away. I still believe it's from the IVIG and finally have the drs. Convinced of the same bc his labs are reflecting it. Also bc his blood cultures are negative. At this point, if I don't have a plan in place for the infusions I will not do them anymore. He is clearly getting sicker rather than better with them. I have honestly not seen Avery this sick in a long time (it's scares me). There are just too many mito kids losing their lives lately and you have it constantly looming over you especially at times like this.

I am sure my little man will turn the corner in no time. He sure knows how to keep us on our toes though.

As predicted!!!!

Like clockwork, Avery spiked fevers a few days after his IVIG infusion. But this time his fevers are higher and more persistant. He actually looks sicker than the prior three reactions. Adding to the fact that his central line site still looks irritated almost 2 weeks later, has me nervous.

Of course I was kicking and screaming heading into the ER this time as I am still recovering myself from surgery. The last thing I wanted to do was sit in an ER for hrs & sleep on a windowsill while still being sore. Ultimately, it's not about me and as a mom you have to put your kids first. I am glad I took him in when we did because he started to go downhill a few hrs into the ER. His temp kept coming back even with motrin & tylenol and he was laboring to breath. He has been in bipap since last night with 40% O2 which he hasn't needed that much O2 in awhile. He just looks sicker overall.

I am just praying this is not a line infection. I kinda have a bad feeling about this one. I should know later today. Please keep Avery in your prayers. Thank you.

All went well

There was a little change in plans. The surgeon called me yesterday to let me know that the CT scan did not show any hernia but a mass with restricted blood flow to my uterus. So I was certainly freaking out. But by the morning with Milo and Janessa in our bed I felt good about things(a calmness), my instinct is usually right :). The surgeon and hospital was great. She found the mass to be lots of scar tissue and endometriosis presses against my uterus which may having been causing the pain & limited blood flow. I'm in some pain but will bounce back pretty quickly. My only restriction is not lifting over 20lbs for a wk. I can definitely manage that.

Milo continues to be the cutest pup ever. Other than nibbling on everything, he has only had a couple of accidents in the house. He is also playing more with the boys but he is another one I have to watch with Avery's tubes. Ugh!!

The boys are feeling great. Avery had his IVIG infusion so we will see if he has another reaction this weekend. If he does than I am 100% certain it is due to the infusion. Janessa of course is sooo thrilled with Mili and is his primary care taker just as we thought.

Thanks for all the good thoughts.

Happy 4th of July!!!!!!

It has been a great holiday weekend for us. We picked up our dog Milo on Friday and instantly fell in love with him.  He is so sweet, cute and in love with Ness.  What a great little pup he is.  The boys love him but he is so into Ness that he will only sniff the boys for a minute then he is off following her.  What a cutie pie.  On the first night I fully expected him to be up whining all night but he slept beside Ness all night without even a peep.  So far he has only had a couple of accident but for the most part he goes outside pretty easily.  Overall, it was the best thing we have done for our family.  It's great to have a new little guy around.

For me, I am having my surgery on Wed.  I am definitely nervous and would love to back out but I know it needs to get done.  I am sure all will go well just hate being restricted.  Avery's central line looked a little icky this weekend so I hope and pray he does not get a line infection.  That would not be good this week with me being out of commission.  I will keep you all posted.