Same "Resort " different summer...
Not really my idea of a summers vacation....but who's ideas and plans ever go as expected??....

An over view of the last week....

Avery went to the ICU for about 3 days.....
He still had been continuing to work real hard with his breathing and so they decide to try a method of respiratory ventilation called CPAP..... see below!

Continuous Positive airway pressure (CPAP) is a method of respiratory ventilation used primarily in the treatment of sleep apnea, for which it was first developed.

PAP ventilation is also commonly used for critically ill patients in hospital with respiratory failure.

However he did not respond well to this method of respiratory treatment... and was back on regular o2....with continuous suctioning and chest pt...along with many different Nebulizer treatments....He also was on 2 IV antibiotics and steroids.....

As mnay of you know Avery has very little IV access and is an extremely hard stick....So I was a little upset to find out that Avery's IV had been infiltrated on Thursday night after I told the nurse I thought this IV was likely done/gone/NO good...(you get the idea)....We needed to get another line which took several failed attempts....I am thrilled that the IV is still working as of this morning....woo hooo....5 days....Amazing!

Infiltration is the diffusion or accumulation (in a tissue or cells) of substances not normal to it or in amounts in excess of the normal. The material collected in those tissues or cells is also called infiltrate.

Since intubation has been something we were able to avoid thus far, Avery was moved to a step down ICU ...called the ICP.....and has been here since Friday....

We have had discussion about Central lines...which his Hematologist does not want to do right now as there are many other things we needs to consider when placing another Central line....

Avery continues on O2 .....and his respiratory status is not baseline he still needs the things mentioned above chest pt/suctioning..ect....however ....Since he has not received anything of real nutrition since last Tuesday and Central Line access is not an option at this time ...and might be dehydrated; we had to start him back on his formula...very slowly of course; and see how it goes.....Unfortunately I don't think it's going so hot as he cried for 2 hours last night...and I am going to talk to the pain management doctor today(I hope)

Vitals still not at baseline...and he is getting antibiotics and many other meds...

He has been having this intermittent rash...not sure if he's allergic to the antibiotic or what....

On another note....I am thinking about firing our epilepsy doctor...I'm a little sick of his lack of attentiveness to his patient(aka....my son)....a story for another time!

I have also decided that just attendings & senior residents will be caring for my son....NO more other residents....I'm all done!

I was excited to hear that Avery's seating system is finally in and ready to be delivered...however...I was told that since he's in the hospital it won't be ....which makes NO sense to me...I am looking to deal with that today..He needs his seat being in the bed is NOT going to help him improve...being up and out will ....even f it is for a little while at a time!

So this is our summer vacation so far....not the "resort" of my choice....last year we came home on Joe's Birthday ...I guess we'll see what this year will bring.....PS...Joe will be 40 in a little over a week!!!

Thanks to all who have helped with meals,kids,prayers, support...and my mom who has had the kids most of the summer!

Continued prayers.....Please!

Trusting in the ONE who is in Control!