4th of july and some

Hey all.  I pray all is well with everyone, since the last time i posted on here a lot has happen  some good and  some not entirely bad, lets start with 4th of july (heads up this is a long post you've been warned) 4th of july started of slow kevin and i stayed with Hannah the nurses came in trying to get a line on Hannah, the night before her  IV line got clogged so they had to take it out and the night nurse and phlebotomist were unable to get a line in since hannah is a hard stick well neither could they day staff they poked and poked and poked some more i was getting so irritated finally they gave up and decided to give her her medication orally after she was resting peacefully it was late afternoon so we decided to start heading down Kevin's mom friend was having a BBQ she always threw good parties so we wanted to attend,  a day to just relax and try to have a good time  and Phenine's place is the place to do that she's such a  pleasant person very free spirited, kind hearted, easy to get along with.  We had a great time kids were in the pool adults sitting around having a good time couldn't of been better....well maybe if i seen some fireworks other then that 4th of july was great.

Now lets fast forward, Thursday night we were Hannah would be having her VSD repair on saturday i was kind of surprise for some reason i didn't think they did surgery on the weekends, friday kevin and i got to the hospital around 3pm the doctor wanted to speak with us, she started off by saying the surgery for saturday was cancelled i wanted to scream, i wanted to tell them enough take all this equipment off my child and send her back to Hackensack University Hospital NOW!!! instead i asked why the doctor explained that Hannah's case is a difficult case and they wanted a full team on board so we would have to wait until monday i replied "yes like she was suppose to have surgery 2 thursdays ago,then sometime last week, or better yet saturday and now monday, i have a feeling this isn't going to happen monday or any day at that" she tried to explain her reason without explaining.  Kevin and i are so much alike as she's talking we both just were silent even after she finish speaking neither one of us said anything she waited for us to say something we said nothing we were so done with her she just walked out, i was so frustrated i called my palliative care crew/ my friends sue and Dr. Beversdorf i told them what was going and i wasn't sure we were making the best decisions for Hannah and i was tired of them sticking her with needles i felt they were stringing us along etc. Sue and Jamie suggested i called a meeting with the cardiac doctor and cardiac surgeon  to find what really is there plan and does it involve doing the surgery for Hannah they made some other suggestions but that was the most important one, i got off the phone feeling so much better i wiped my tears away and got on it, i told the nurse who i needed to speak too the same doctor kevin and i wasn't feeling came back we spoke to her i explained i didn't like fact that she gives broad answers and doesn't really explain whats going on she said her little piece and left, another lady from the surgeons team came in to speak to us she explained EVERYTHING finally someone with a vocabulary she explained that the OR have been having a lot of emergencies that ends up pushing Hannah back. ok i get that totally get it Hannah is not the only sick child in here there are children who are sicker then our baby i totally understand but someone needs to explain that to us not just tell us "o the surgery was cancelled, maybe tomorrow" like really? she also explained the only reason they scheduled her for saturday was because we were waiting so long, they don't usually do surgeries on saturday but wanted to get us in but after speaking to anesthesiologist they didnt feel it was safe to do the procedure without a full team being there like during the week again we get that but why not say that after speaking to her we felt better and thanked her she said she will tell us when her surgery will be done since she does scheduling of the surgeries she said if we don't hear it from her don't believe it.

Now that was done the same doctor we don't dig to much came back in and said they needed to put a central femoral line in Hannah because they couldn't get a vein and if god forbid she needed to emergency medication they had no iv line in her, she explained how the procedure would go and the risk of course which were minimal (look who's learning to communicate) the problem was they usually sedate babies before they do it but because of Hannah's condition they didn't want to sedate her without securing a open airway so she decided intubating was the best opinion the only problem with was hannah has a very small jaw and a short tongue, they also felt something was obstructing her airway cause she sometimes snorted. The doctors said they will try if it wasn't successful they would have to put in a tracheostomy (my worst nightmare in a way) i signed off on all the papers needed to be sign and just like that she was being prepped for the O.R that was easy wish it was that easy to get her in the operating room for the VSD repair.  That was the longest wait of my life i kept wondering is she gonna come back the way i sent her in there i prayed and for the first time ever i asked god for a miracle i didn't want her to get a trach so i started confessing my daughter will not need a trach she will be intubated and thats it we waited about 45mins maybe a little longer and she was back in her room......she was easily intubated no problem i exhaled and thanked god, the next thing was doing the femoral central line they let us see her for a brief minute then kicked us out her room they had to sterilize the room and equipment. Hannah was resting well she was sedated she looked so still kinda lifeless if it wasn't for chest rise i wouldn't of been to sure i didn't like looking at her like that so i didn't stay too long we went into the waiting room.  Putting in the central line took forever we fell asleep in the waiting room it wasn't until after one in the morning we went back into our room they said the doctor finished a little earlier then that but because "we looked so peaceful sleeping" they didn't disturb us... really???? so u left us siting up on the couch lol, it was ok i'm not complaining....too much. Thats it for the past few days now im gonna go do todays post *whew* i need to keep up with blogging lol

Psalms 37:3-8(NKJV)
Trust in the lord, and do good; dwell in the land, and feed on his faithfulness.
Delight yourself also in the lord, and he shall give you the desires of your heart.
Commit your way to the lord, trust also in him, and he shall bring it to pass.
He shall bring forth your righteousness as the light, and your justice as the noonday.
Rest in the Lord, and wait patiently for him; Do not fret because of him who prospers in his way
Because of the man who brings wicked schemes to pass. Cease from anger, and forsake wrath;
do not fret---it only causes harm.