Things seemed to have settled down around here.  Avery has been sleeping better at night thanks to melatonin and night nursing.  We have not had night nursing in a few weeks and I frankly think he just wants someone in the room with him, lol.  Maybe the dog we get will sleep with him (although I think he will have to fight Janessa over it) .

We saw the GI dr. yesterday and it was a good appt.  He thought that while Avery has not gained weight since last summer that he actually looked great.  He has grown 2 inches and looks proportionate for his age.  I was happy to hear that b/c the nutritionists seem to get very hung up on the numbers on the scale and not looking at the total picture.  For a kid like Avery, excess weight would mean more respiratory issues and that is simply something we don't need.  I drew labs yesterday morning (yup me, hehe) and it seems like things have really improved overall.  Except his liver functioning.....

This was one of the things we discussed yesterday.  While he is doing great on TPN (iv nutrition), ideally we HAVE to get him to at least 15cc of j tube feeds at least 8 hrs a day to prevent liver disease and eventually liver failure.  TPN is great but your body cannot survive on it alone long term.  Of course with Avery this a huge challenge.  So we are at it again (pushing feeds) as much as I know we have to do this , it is difficult b/c I know it means he will be miserable.  I guess all we can do is try, right?  Who knows maybe his gut will start waking up.  Already his liver labs are elevated so we are seeing the stress the TPN is having on his liver. 

Otherwise the dr. was pleased with how great Avery looked and how well he has been doing.  It is going to be his FOURTH birthday on Sunday, I just cannot believe it.  I am so sad b/c he is no longer a baby :(  We will not have a big celebration this weekend b/c Janessa has opening day of softball on Sunday and it is just a crazy weekend.  Since Isaiah's 8th birthday is on June 5th (another I cannot believe it), we will celebrate them together.  Momma has a few trips planned at the end of May and early June so it may be soon. 

I am just so proud at how well my boys are doing and how far they have come given the circumstances. 

We are blessed all around. 

Hanging in there

Since Avery has been home he has been struggling both respiratory wise and with some unknown pain issues.  He gets very anxious when he has alot of secretions and yet hates to be suctioned.  He has not been sleeping well at all since coming home.  Avery is seeing the GI dr. on thurs and most definetly has to have labs done.  His color has been off at times and I am worried that the new TPN changes is increasing his lactate, especially with his change in behavior.

On the plus side, his physical therapist brought by a special needs type of walker.   I was so proud of little man b/c even though he was in pain, he managed to pull himself together to move in this new device.  Of course he is always so happy to get praise so he was all for it.

Isaiah has been much the same.  He has been playing the Wii alot lately and thoroughly enjoying it.

So we made it home yesterday afternoon by the "skin of his teeth".  I had told the night nurse to try not doing labs on Avery b/c I swear the more labs you run the more issues you find.  But the problem was that Avery has not gained weight in over 8 months so they needed to increase calories in his TPN.  This was done the night before discharge!!!! So by the morning he was becoming acidotic with his labs due to the increase in his dextrose.  So they decided to redraw labs and if they were the same or higher then we would have to stay.  Lucky for us they were slightly lower and he looked pretty good so I was able to convince them that he would get labs redrawn this wk and I was able to handle him at home. Sometimes you feel like you have to beg to go home, it is really insane. I mean I get the whole liability thing, but........

Well our first night home did not go so well.  He got up at 3 am and never went back to sleep.  BTW, my night nurse did not show which totally sucked and is a big issue.   He basically screamed until Rick and I could no longer stand it and got our butts up at 7am.  Got no idea what was going on with him but it was NOT pleasant at all.  During the day he struggled alot with his secretions and was breathing fast a good portion of the day and required alot of suctioning. 

We are hoping to have a good sleeping plan in place tonight for all.  Just hoping we can ride this rough period at home.  I forget how tough it is to be inpatient.  I have alot of work to do this wk and really need to stay home and plus it is Avery's bday on Sunday and he has spent too many of them inpatient. 
I am hoping to enjoy this one at home which is also the same day of softball opening day. 

Daddy Cures All

Guess all Avery needed was a good 24 hrs. with his daddy before declaring himself cured.  We still have NO idea what he had or what happened but he is basically back to baseline.  Of course there are many speculations but Lord only knows.  Just glad that we will go home in time to spend some time with Ness and Isaiah for the end of there school vacation.  We are actually taking up space in the "baby room" on our unit and we will be more than happy to give it up in the am.

Thanks all for reading and the good thoughts.

Funny story:  You  know how we ladies get, we are mad at the spouse for no reason and they can't win for nothing but we think it makes perfect sense right?! 

So Rick had called me yesterday morning from his trip and I had a bit of an "attitude" but I just could not help it.  I was frustrated b/c I was doing everything alone and yet I didn't want him to miss out on his trip.  KWIM?  So while Avery was getting his nebs. by the respiratory therapist (male) Rick had called and I said outloud, "I am not going to answer that b/c I know I will be bitchy and I don't want to be".  Then he texted me, "can you answer your phone" which I continued to ignore.  Then he called again and I still didn't answer, well my big mistake b/c he was walking through the door of Avery's hospital room while the phone is sitting on my bed.  EEEeekkk.  Can you say "Stone Cold BUSTED".  LOL

Poor guy caught a 3am flight home to be with his family, Awww...  While I was being a total B*&^%.   So there you have it.  I am not perfect, lol.   I actually felt horrible that he came back early and that I had not even taken his calls but certainly relieved b/c I REALLY needed to be with Avery that night b/c he did NOT look good.  I have such a good guy :)

Avery's color continued to look awful yesterday.  Then he became hypothermic, his body temps dropped to 93.  This has NEVER happened before.  He just looked horrible and I was nervous as heck.  We have no idea what is going on but just have to assume it is a viral infection that is kicking his butt that has no name to it.  By the am his color looked better and his temp normalized.  The team felt he was presenting like he is septic so they ran more cultures.  Who knows at this point.  I think all Avery needed was his daddy.

Rick is there now and of course he has no idea what we were talking about b/c Avery looks great.  This boy just loves to keep everyone on there toes.  He just amazes me how in one minute he can look like death warned over and the next he is flashing those pearly whites.  Just glad he is on the upswing and hoping he stays there. 

I posted yesterday before I had seen Avery and let's just say he did not look so good.  He was really needing a transfusion.  He had a good night after his transfusion and labs were done this am.  Typically 12 hrs. after getting blood his H/H are usual way up (norm for him 12/35).  This mornings labs had him at 10.6/31, now that is not bad but not where I would expect him to be.  His platelets are still dropping although his white count is up to 3 which is better.  It seems that he may have pseudomonas which a bacterial bug that he is colonized with.  This is the only thing that is showing up.   But with all his numbers being so low it would be indicative of a viral infection.  So he could still have a viral infection on top if the pseudomonas. They switched his antibiotic on Sat. to one that is sensitive to the pseudomonas so he is not having fevers anymore but I am still concerned as to why his blood levels are lower. 

When I came in today I was expecting him to be all pinked up but instead I saw a gray/yellowish smiley kid.  Have know idea why his color is weird but he does seem better than yesterday.  I guess it will take some time for him to go back to baseline.  I just hope he doesn't go downward again and require another transfusion. 

I have to say this back and forth to the hospital and taking care of the other kids and working is certainly taking it's toll on me.  Thankfully Rick is back tomorrow evening and am sure he will be the one discharging Avery on wed. (how nice).  I cannot imagine being a single mom with my kids and keeping up work and all.  I would truely be in committed to the nuthouse.  On my car rides I have also been thinking about how a single infection or illness could take our little man away from us.  Not this one specifically but just how this nasty disease takes the lives of so many of our children at the blink of an eye.  With seeing the recent video "faces of mito" it really gets you thinking and worrying when you kiddo goes in the hospital.  I honestly cannot imagine my life without this little guy or Isaiah. 

But for now, we go home soon and enjoy our lives......

Here is a before and after of Avery's transfusion.  Blood sure does a body good.

Thanks for the notes guys, it is good to know I have readers :)

I felt good about leaving Avery last night b/c I knew he was in good hands.  His favorite nurse is on the overnights.  YAY!!! I sort of think Avery planned it that way.  She knows him just a good as a home nurses so I felt real comfortable going to sleep last night. 

He had a good night but still had a fever.  His blood counts have continued to drop and he will get transfused today.  So far his blood and yeast cultures are negative, PHEWWWW.  That is a HUGE relief.  As you know Avery has just about no more line access and if he were to get a yeast in his line it would have to be pulled.  And the rest is just not good.  So I am so so grateful to not be dealing with that right now.

So instead this boy has some type of virus that is eating the heck out of his red and white blood cells.  Yet he looks totally fine.  I mean if you looked at his labs alone you would think he is really sick, then you look at him and he is just smiling away.  He just never follows the norm.  Silly boy.  Hopefully this virus "whatever it is" will kindly leave his system and this transfusion will be the only one he needs this admission.  Although I am sure getting blood.  THANK YOU DONORS, will be just what he needs.

I think he will be home by the time Rick comes home, as if nothing ever happened will daddy was gone.