Extibation results in big struggles......

At 11:45am the docs decided that it was as good a time as any to try for extibation. Little Bug did amazingly well and coughed very quickly after the tube was pulled. We got him all cleaned up and mama held him for 2 straight hours. At 1:45pm it was quite evident that Connor was having a tough time getting breath and he was getting aggitated. I put him back up in bed and the docs and respitory therapists tried everything to help him calm down and breathe. We were, however, not successful. He ended up getting a bunch more drugs, morphine, adovan, versett (sp??), chloralhydrate and the like!!!!!!!! He is on an oxygen canula at the moment with 100% oxygen and the drugs are kicking in for him to fall asleep. Who knows how this will filter down in the whole grand scheme of things, but he is definately riding the fence on getting the breathing tube back in. Please continue to pray!!!!!!!!!!!

Lovebug Hugs,
Lori

Glitch in the path.....

This morning at 6:42 the phone rang in my sleeping room and the nurse proceeded to tell me that Little Bug had been having some major episodes of aggitation for the past 2 hours. Before I went to sleep I firmly instructed the nursing staff that if he were to get aggitated they were to call me to come help get him calmed down before giving extra drugs.....THIS DID NOT HAPPEN!!!! With great frustration I report that he had 2 extra doses each of morphine and adivan and 1 dose of the paralyzing drug, vecuronium. Needless to say there has been no attempt at this moment in the day to even think about trying to extibate. I don't know what the rest of the day will hold, but I will keep you posted.

Lori

This is the moment for prayer...

It is Friday night and we are about 12 hours away from the moment of truth for Little Bug. Tomorrow morning between 8-10am they are planning on pulling the vent tube out of Connor. We are praying for an absolute miracle to occur in his airway and for him to find the strength to breathe on his own without the support of machines. They have been weaning him throughout the day off of his morphine and he is down to minimal sedation. This should bode well for tomorrow if he can make it through the night without needing extra doses because of aggitation. The plan for tomorrow is for me to be holding Little Bug during the extibation process. We hope that the comforting feel of mama's arms will bring him comfort and peace to settle down and not need extra medicine.

Tomorrow will prove to be a defining moment for Connor and the course that his care will take. Our desparte prayer is that Connor will receive a miracle and he will be spared from future respitory difficulty. We remain positive and hopeful for a wonderful day tomorrow and I am off to get a good night of sleep to prepare for the extibation in the morning.

Pray for peace, pray for miracles, pray for healing to overtake Connor's body!!!!

Lovebug Hugs,
Lori

PS ~ I will update as early as I can tomorrow morning with the results of the extibation!!!!!!

Care Conference.....

I know you have all been waiting for an update on Little Bug. How we had hoped that when we posted again we would be able to say great things of how he is doing. With a deep sigh of frustration we report that there is really no change at all and in fact things seem to be looking in a grim direction for Connor. On Tuesday of this week the pulmonologist did a bronchoscopy on Little Bug and discovered a moderate floppy lower trachea. This is called Tracheal Malasia (sp???) Basically this is when Connor's ariway collapses and he is not able to move air through his trachea to his lungs the way that it is supposed to. When he is on the ventulator it is automatically forced open so it doesn't seem to be as big of a problem. Unfortunately, there is nothing they can do for this condition at the moment. They say that growth and good nutrition are the keys to help Connor gain strength and fortitude, but we aren't even at a place where he is getting either of those two things. The most drastic and invasive treatment is for them to do a tracheostomy on Connor's airway. As they have told us, "We're not there yet, but be prepared. We may have to have that conversation."

Today we had a care conference with the main components of Connor's care and they decided to give Connor another chance to come off the ventulator, hopefully this weekend, and see how he does. If he does great, then they want to see how he will do with the help of c-pap and extra oxygen to get him by, but they are worried that these episodes of respitory failure will continue. If he fails again, like he did last week coming off the vent, then it will be the conversation that we dread!!!! All the doctors admit that we aren't doing Connor any favors by keeping him so sedated and in fact, it may be doing him a lot of harm and it may be having the opposite effect on his drive to breathe. It is a delicate balance, as we already know and Connor needs to somehow find the strength to fight to breathe without being sedated because of agitation.

As you can probably imagine, we are discouraged, confused, worried and hopeful all at the same time. If ever we have banded together to pray for Connor, it is NOW!!!!! He needs a miracle in his airways and lungs. God will have to step in at this point for Connor to escape another dreaded procedure. Please join with us, hold our hands up and pray for a miracle for Little Bug. He's counting on us to fight for him and we are not giving up. "We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.......Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." (2 Corinthians 4:8,9,16,17,18)

Lovebug Hugs,
Randy, Lori & Little Bug

Daddy's Home!!!!

Daddy arrived home last night around 5pm. Yippeee!!!!!!!!!!!!!!!! We were so glad to see him walk in our room and give us hugs and kissess. The first order of business was for daddy to hold Little Bug. We proped up pillows for the ventulator to sit on and daddy got to snuggle away for awhile (that is until daddy just about fell asleep from jet lag!!!) We stayed together in the sleeping room and we hoped that they were going to do the bronchoscopy today, but it was pushed off until possibly tomorrow. Connor did pretty well over night and this morning they even changed some of the settings on his ventulator so that he would get more of a drive to breathe on his own. They are weaning off of some of his sedation meds, but it's a fine balancing act to get and keep him at the right place where he is comfortable and not aggitated. His fever began rising again around noon today and at about 3:30 it topped out at 104.5!!!!!!!!!!!! He is now getting cooled off with ice packs and cool wash cloths!!! Poor little guy just needs a break. They sent more blood off to the lab, but no results as of yet. Randy and I also met with the neurologist this afternoon to discuss last weeks episodes with seizures. They are going to be keeping a close eye on things to see if they can determine if the seizures may be related to his fevers or to his narcotic wean. We will hopefully know more in the next few days.

Our plan is to go home this evening and get a good nights sleep in our own bed. It is so hard to leave Connor behind, but it is becoming essential for our own mental status to get out of here. Randy and I feel a significant urgency to make a plan of attack on how we are going to handle the coming days, weeks and months of caring for our sick little boy. We pray that the Lord would give us clarity and creativity as we try to devise a plan. If I know Randy, and I think I do, he'll have the dry white marker board out with many colors of dry earse markers to put our plan into action!!!!! HA HA

At the moment we are waiting to see if Connor's fever will come down before we leave. Tomorrow should be the day that they choose to do the bronchoscopy. We will keep posted as to the details when they are available.

Lovebug Hugs,
Lori, Randy and Little Bug