Mother's Day

Happy Mother's Day!  Gavin's liver enzymes continue to drop. He is on Lasix once a day. Other than that, today was a day of spending time with my family. 
Gavin gave us a few moments of comedy, letting us all know that he's still a ball of fun and ENERGY! I can not tell you how wonderful it is to see that beautiful smile.
We met a nice couple who attends our church, Metro South. They came to the see us today and set up a skype session for Gavin's dedication.  What a wonderful experience.  We finally dedicated our little baby boy to the Lord. We owe everything to him!  Three people also showed up at Gavin's bedside with prayer blankets, one for Gavin and one for Justin and I. They are so beautiful and soft.  I will post pictures of them soon. 

Tomorrow he is scheduled for an echo and he is to get a CT Scan, time is still to be determined. Most likely, discharge the day after these tests. So we really don't have a definite discharge date, but we are expecting early this week. I can't wait to go home so we can relax and allow our little guy time to relax before his big day in June.  There is no such thing as relaxing in the hospital.

Sat May7th.

Gavin's numbers are great.
Liver AST 1200'S  from 2100's and ALT 220 from 600
His states are great. He is off air. They did put him back on diuretic, his weight went up past his dry weight. to about 11.46, which means he wasn't ready for such an aggressive transition from the diuretic to nothing.
So he is getting it a few times today, overall his swelling has gone down.

He is getting a CTScan and since they don't do them on Sundays, Im assuming he will be here to atleast Monday, possible Tuesday. They are watching his electrolyes, they've been low as well as his phosphates.  So all and all he will be discharged in the next few days. His surgery is schedule for June, we will get a set date upon our discharge.  The surgery is sooner than we all anticipated originally (3-4 years of age) but this is happening for a reason. 

Friday May6th

We've all had a pretty busy day today.  Gavin has been move from PTCU to Moderate Care, it would have been the General floor but there wasn't a bed available. 

His liver enzymes continue to drop significantly! Stopped all diuretics.  Feeding tube is out. He continues to take the bottle.  We will know soon if he is being discharged this weekend.  The plan is to have his surgery scheduled for next month. This will allow Gavin to recover as much as possible before he has his heart surgery. 

He looks so good compared to the last week.  Taking him home is going to be scary but atleast we will all be comfortable.

We will update when we know for sure what is going on. 

May 5th PM Update

Im so sorry I forgot to inform you guys on the liver enzymes earlier.
His AST went from 2283 yesterday to 1359
His ALT went from 3179 yesterday to 2824, docs are pleased with the direction of everything.

He was extubated at 3pm this afternoon and as you can imagine, it was so wonderful to see his beautiful face again.  He is breathing beautifully on his own. They have since taken him off his BP meds and Adevan (spelling). He is receiving a steroid to help prevent his throat from swelling due to the intubation so that medicine does increase his BP but not to alarming levels. He was able to drink from the bottle tonight and he was so excited to see a bottle. He took 6 oz like a champ.

Still no date for his surgery as of yet, there is still debate.
We are very happy with the direction things are going. We should be able to hold him tomorrow.

Our church is having their baby dedication ceremony on Mother's Day. We were scheduled for the 9:30 service but due to is stay at the hospital we are going to miss that. However, we were able to work out skypeing the dedication service from his hospital bed for the 3rd service, We are so happy we aren't going to miss this years ceremony.
Hopefully we will have more good news to share with you tomorrow.

Thursday AM Update

 
He looks GREAT! His weight is down to 11.6k from his dry weight of 11.4 (25.5lb-25.1lb) so they backed of Lasix(diuretic) from every 6hrs to every 12. They never started the second diuretic. 


He is taking 1oz/hr by continueous feed. They will try PO feeding(mouth feeding) after he is extubated, waiting  4 hrs after extubation to feed him, just incase they have to reintubate.  

He's been sprinting on the vent this morning and they are going to sprint again at 1pm and if his blood gases are good they will extubate around 3pm. They have to wait 6 hours after his last feed, so they stopped his feed this morning at 9:30am while we were back there.  

Decreased his blood pressure med. Miliranone, may remove it after extubation.

White cell count down to 6.4

Abdomen ultrasound later today to check for possible clots, they are always possible after all the internal trama he has experienced. 

They will check to see how his blood clotting, he's been given plasma because his blood has been thin.

Removing his adevan after his extubation.  

All and all hie looks fantastic! His swelling is down significantly.  You can see creases in his eye lids. :)
We are going to have a good day, I can feel it :)
xoxo's

Wednesday Night Update

Our little rockstar is practically breathing on his own. He is still vented but during the whining process he has shown great progress, they have turned it down and he is doing well. The plan is to start whining in the early morning hours. Whining consists of turning it all the way down, allowing him to breath on his own for an hour, should he skip a couple of breaths or not respond very well anytime during that hour, the machine will take over or fill in the gaps for him.  All goes well, he will be extubated tomorrow, FINGERS CROSSED. 

He is moving quite a bit, which is good and scary at the same time. Man oh man we don't need him to knock out the tube. His arms are restrained a little to try to keep that from happening. He responds very well to us when we are talking and touching him, so it's best that we back off a little bit. He just moves to much.  A few times we saw him tonight it looked as though he had tears pooling in the corner of his eyes. Ofcourse they were closed but it was so sad. Sometimes he whinces an a tear look alike comes out. They are trying to reasure me that it's not tears but drainage. I sure hope its not, that simply breaks our heart to think of such a thing as him being in pain an not being able to let us know or respond. :( I guess his stats would indicates some discomfort.

Doctors rounds are between 7 and 9am each morning so we will have more updates after them.
Thank you to all of you for your concerns and your prayers!

Please continue to pray for his recovery but also please extend a prayer to all of the children an families in that ward.  There is so much hurt and sorrow walking those halls it can be so depressing and it sometimes make us feel guilty for having a happy moment while so many are hurting at that very same moment. 

Update 3

Last night was uneventful, nothing scary happened.   So as I always say, Uneventful is good! 

He still has excess water weight, about 2 lbs more than his dry weight.  His eyes are less swollen and his color is much better.  He is on Milredone for his blood pressure and to help his right ventricle rest.
Liver enzymes DROPPED! From 4500 to about 2000, int he opposite (and right) direction that the doc anticipated.  He is still intubated and will be for a couple of days. They have lowered is sedation because they want him to be a little responsive, but obviously not enough for him to mess with everything. They also want to observe his neurological responses for possible damage, which is always a possibility.   They may start weening him from the intubation and start sprinting tomorrow, which mean that for short periods, he will be breathing on his own. little by little.  My little chubba wabba may start to eat today too, however through a pump feet/ NG tube.  We are taking a teaspoon every hour and slowly increasing it. On Lasix/ diaretic every 6 hours now, they want to get the water off.  They are also adding another diuretic for help with the fluid.  His lung from yesterday looks good. I guess it has to perk up a bit.  They are going to try to clear his lungs of any fluid and keep them clear to prevent pneumonia.  White blood count is 7.6, i don't know what that means but I wrote it down so I thought I would type it out for ya. 

All and all, today is a day of rest, watching him, allowing is body to heal.