Avery Post- op---


Mom and her boy....he's a trooper!!!

24 hours post- op......

It has been a little more than 24 hours since Avery's surgery's have been completed....

I have a hard time writing updates in the current situation we are in...ALL day it has been so touch and go...



Avery ...while still intubeated....

• His night was not much different from my last post(Fri-Sat)
• He had High Heart rates during the night... about 1 - 1/2 hours when they were a little lower...but we have not seen that since(the little bit lower part)
  
• Expressing irritability at times(over night ...early morning)
• His temp was still elevated(he has a fever)
  
• He still had a few apnea episodes and remained on the ventilation machine
• Pain and sedation meds were still given
• Blood levels still low...they are still not ready to give a transfusion
  
• He has fluid in his lung(s)...they will monitor
• No more seizures over night(Fri-Sat)
  

Today....(Saturday)

• Thank You God....We were able to take him off the ventilation machine....but it has been touch and go ALL day

Taken during the day yesterday ...after extubeation...HE remains very pale and PUFFY!!

• He continues to get breathing supports of O2
  
• He has been having a hard time keeping his SAT'S UP ...ALL day....since extubeation
• Well.....I thought his heart rate was high last night....it was nothing last night and early this morning compared to the rest of today...his average HR was 168-190 today....
• No big clustering of seizures during the day
• He has clearly been in a lot of pain...we have been trying to balance pain meds and his respiratory status...if you give a large amount of pain meds,it can cause him to be a little more sedated,which then can cause him to not breath very well on his own...trying to find that balance
  
• Tonight his blood levels remain very low....

Avery's eyes open for the first time since surgery...about 8:00PM ish
Saturday night!


OUR first smile since surgery...he only had a couple,but we were glad to have them!!

• Seizures in the late evening had increased again....added seizure meds were given
• Avery needed suctioning several times through out the day
• Avery did not really rest very well at all today
• Blood pressures have been from one extreme to another ....very high to very lower....numerous reasons why this could be,they have been watching it
• Avery's new Port Catheter had started to be used Fri into Sat
• Avery got his catheter removed, and continues to put out a lot of fluid
  

40-42 hours post -op
Saturday /Sunday

FYI----

• Avery's baseline Heart rate is----90-120

• Avery's baseline Respiratory rate is ----20-36
  

• Avery rested slightly better over night(Sat-Sun)...better being he actually slept more than an hour.....
  
• Avery had another large seizure clustering that required added dose of seizure medication
• Avery stills is very junky and has been suctioned today
• Avery's temp is still increased...they have increased meds to address the fevers
• His Heart Rate remains high....Not in the 190's but still hanging in the 160's
• Respiratory rate is very high and has been through the night
• He has awoken several times with pain...and while awake has showed many signs of pain
  
• I have requested the pain team to come by
• He remains pale in coloring and in sill PUFFY from all the fluid
• Still having de-sats.....and breathing hard at .....this 10:00 hour on Sunday...SO I gotta go...time to suction!
  

This was actually taken this morning(Sunday)...moments ago!!

NOT much else to say at his point we will continue to address all the above things mentioned...

***Thanks for the continued prayers/support***

"The Lord Bless you and keep you,the Lord make his face to shine upon you and be gracious to you"