mortiz007

Mother's Day-2014 Well since it's mother's day, why start with a lot of sleep? Moms are not suppose to sleep.  We had a rough night last night.  New nurse learning the ropes of "our system", Huahua was already crabby and sleep deprived, and stats on that funny machine kept beeping all night long!  Between meds, labs, x-rays, diaper changes, blood pressures, checking the tubes, weights, and that machine that would not stop beeping we might as well stayed up all night! So we are hoping for more sleep tonight.  Best News of the day....The chest tubes came out.  The worst news....The chest tubes were pulled out!  OUCH!  I had to watch, of course be with her, but I could see the excruciating pain in the mother's face (the Dr) who had to pull them out.   I held it together, but by the third tube, my heart was just aching for her little soul and it showed.  As mothers it is our responsibility to do what is best for our children and we know at times ...

Not happy during our first walk of the day, but got progressively better as the day went on.  We walked further and further and at one point I think she forgot she was attached to so much and tried to take off quickly!  She gives high fives to the other nurses around the floor. Notice the elevated heart rate after a short walk.  It's like a marathon for her at this point. Sat in a chair for awhile today, enjoying the upright position more now. This is a nurse for previous day...stopping for high five along the walk.  Apparently there has been a little jealous talk about who gets to have Huahua for a patient.  Supposedly if you had her first, you're her primary, but we seem to have many claiming to be the primary nurse!  It's great to be loved Huahua.  And she's even been grumpy, wait till she turns on the sparkle and charm :) Pet pals visited the peds floors today.  She liked to visit, but not pet the dogs.  She rubbed them with her feet a li...

 We took about a 30 ft walk today. This was on the way back to the room.  Not a fan of walking yet with the chest tubes and her entourage of medical things hanging from her body and following her around.  She does like sporting her blue glue which she wore for about 5 hours today.  She's practicing being a Dr.  Tonight she even replaced her lead stickers on her body!  Love to see the spunky self returning. Made the corner and straight into her room!  Her surgeon is very pleased with her progress and said at this point she is ahead of the curve.  We always knew she was a high achiever ;)   Two of her chest tubes are drying up, while the third is continuing to drain.  She needs to start eating and have a bowel movement to start feeling better.  Pray for her to regain her appetite and get things moving internally.  All the narcotics are tough on the body, but necessary for pain control.  She has been managed well and we've be...

She made it.  The goal was to get out of bed and walk and she did.  Can you tell how she felt about it?  The reward....a long nap with mommy in the rocking chair.  She is doing very well today.  A bit low on some of her labs, because of not eating and trying to keep her on the dehydrated side to allow for her lungs to dry out.  She is still draining quite a bit of fluid out of her lungs and at best the chest tubes will start to come out Saturday, but more likely on Monday.  She has been a real trooper so far and is not complaining, except if we make her walk.  She has not begun to eat and was not wanting much for fluids until this afternoon was enticed by some chocolate milk.  Her siblings are coming tonight so hopefully that will raise her little spirit and get the belly going.  This afternoon the monitors were going off and she said "Quiet, I can't hear Frozen"  We've watched "Frozen" and "Nemo" a lot!  She's still got her fe...

Yesterday (surgery day) I actually woke up with a peace about the day.  The first thing I read was the prayer from an adoptive father the day he was going to meet and become a father to four children....."Lord I confess my mind is racing with imaginations of what lies ahead.  This is a little scary.  Grant me the grace and peace today I pray as we go forth.  What an incredible journey of adoption parenting.  Help me, Lord, today to focus to be still, to hear Your voice.  I know you are ever present....You have prepared us for this day, this season.  As I look to You in Your word, show me Your Glory...."   From Orphanology by Tony Merida & Rick Morton He has prepared us for yesterday, this season.  Not that yesterday didn't still stink,  Handing her over was still scary, but I was at peace.  We know God's will WILL BE done and the more we submit the easier it becomes the handle the ups and downs, that are out of our control anyw...

The surgery in and of itself was very successful and now we are in the difficult period of recovery. The surgeon was able to place the fontan shunt in the optimal place with essentially a small hole in it for pressure relief.  During the surgery her sinus node was giving intermittent impulses and eventually they were not able to get it to give consistent activity, so she was places on a external pace maker.  Hopefully over the next few days that issue will resolve itself when the swelling goes down. She came straight to her ICU room about 6:30.  She has been terribly irritated and in a lot of pain. Her oxygen stats have continued to drop to low levels because she continues to hold her breath and refuses to breathe.  We assume it is due to the pain.  She is strong willed as we know and has a fighting spirit.  Pray for her recovery at this point and healing both physically and emotionally.  Even though she was extremely excited to come to the hospital, I...

Just received word Huahua is off by pass and doing well. Also reported that they were able to connect her with an external shunt from the interior vena cava to the pulmonary aorta.  Awaiting to hear if Dr. A was able to put a drain hole in the shunt to allow for pressure changes.  This is great news as things seems to be progressing as Dr. A had hoped.  Pray for her to continue to be strong in surgery and her pressures match what is needed for her passive blood flow to work. Ryan and I are moving our things up to the ICU room now in anticipation of her coming out of surgery in the next few hours.