[cclngthr]

Nice. You beat me to it.

[GrayC]

The Little Americans episode was on today. That episode was the highlight of the season.

[cclngthr]

Originally Posted by GrayC

The Little Americans episode was on today. That episode was the highlight of the season.

Probably the best of the whole season.

[scagjockey]

Latest update from Russell:

Saja had a good night. Jenise Jarrett, from here in Utah, volunteered to stay with Saja last night. Today Kristy has been here to help Abdul and I. Kristy is a great help. She and her husband are the local chapter presidents of LPA Utah.

The dr. just came and gave us an update on Saja. I know that all of you, as I am, are hungry for good news. There are problems, but nothing that is not so daunting that it can't be overcome.

The dr. said that Saja's left lung is conjested, and is not working to full capacity. The respiratory therapist is working aggressively to open up that lung. The dr. also said that the trach will most likely be permanent. They said that we will have to wait and see.

We still need all of your to prayers for Saja. Please ask God to help Saja's left lung to open up.

May God Bless each and everyone of you.

[cclngthr]

Originally Posted by scagjockey

Latest update from Russell:

Saja had a good night. Jenise Jarrett, from here in Utah, volunteered to stay with Saja last night. Today Kristy has been here to help Abdul and I. Kristy is a great help. She and her husband are the local chapter presidents of LPA Utah.

The dr. just came and gave us an update on Saja. I know that all of you, as I am, are hungry for good news. There are problems, but nothing that is not so daunting that it can't be overcome.

The dr. said that Saja's left lung is conjested, and is not working to full capacity. The respiratory therapist is working aggressively to open up that lung. The dr. also said that the trach will most likely be permanent. They said that we will have to wait and see.

We still need all of your to prayers for Saja. Please ask God to help Saja's left lung to open up.

May God Bless each and everyone of you.

That left lung may (or may not) fully recover to 100% capacity. Many times with spinal curvature issues, the lung is crushed or stretched (depending on the curve angles) and it takes a while to recover.

I know for me (I had a 45 degree angle in my spine before I had the corrective surgeries) my right lung never fully recovered because it was so long before the surgeries took place. That may not happen with Saja.

[GrayC]

Well at least she seems more stable. Hopefully her lungs will recover enough to lose the trach. She does have youth on her side so I think she'll be okay.

[cclngthr]

Originally Posted by GrayC

Well at least she seems more stable. Hopefully her lungs will recover enough to lose the trach. She does have youth on her side so I think she'll be okay.

Having the trach is a concern though. I was thinking that it was used due to her unstable airway, which Tammy had mentioned when Saja had an MRI done before the surgery. She said that Saja's airway was closing when she was on her back. I also noticed that when Saja had X-rays done on the very first show that they were profiled (she wanted to have someone hold her upright). Having the trach will keep the airway open, but at the same time, her lung capacity might not be as good without the trach. Russ did mention that as well. He feels that its use will be more help to her due to the unstable airway she does have.

I don't know where her paralysis begins, but that also has to be considered as well. That may be reducing her ability to breathe right.

[GrayC]

I just finished reading the book about Mattie Stepanek and he had a trach for years. It is a lot more care needed for a child with one than without. Saja may need to have a full time nurse. Mattie's mother needed to suction out the mucus from the trach every two hours. Every night she had to get up and do that. He also needed oxygen tanks and back ups, an electrical source and extra batteries in case of a black out. The trach area needs to be cleaned or changed like once a week and Mattie hated that process. I sure hope Saja's lungs recover.

[cclngthr]

Originally Posted by GrayC

I just finished reading the book about Mattie Stepanek and he had a trach for years. It is a lot more care needed for a child with one than without. Saja may need to have a full time nurse. Mattie's mother needed to suction out the mucus from the trach every two hours. Every night she had to get up and do that. He also needed oxygen tanks and back ups, an electrical source and extra batteries in case of a black out. The trach area needs to be cleaned or changed like once a week and Mattie hated that process. I sure hope Saja's lungs recover.

It can be a chore, but I think parents and family members can care for one who has a trach. Mattie had Muscular Dystrophy, which is different than Morquio that Saja has. MD is a progressive weakening of the muscular system, which is different than the skeletal deformity Saja has. It may be possible for Saja to be off the trach, but if the spine continues to be compressed, her need for the trach may have to be permanent.

Here is a website that has a lot of info on morquio.
http://morquio.org/

[seebert]

Tammy writes this morning:
"We have Hope!
Today the doctor sat us all down and had a "CARE" meeting. We had a translator with us and the doctor gave a breakdown of everything happening with Saja and answered any questions Abdul had. Abdul's major concern "will she end up like his nephew, Ibrahim". The doctor reassured Abdul that Saja is holding her own. Her tongue is definitely improving each day. The swelling in her body will decrease with time. Two major obstacles at the moment are her lungs and the skin around her trach is breaking down. Infection is his main concern. He stated Saja is a very sick young lady and will be here in the ICU at least another two weeks, if not more. Recovery will be slow but the doctor reassured Abdul while Saja is seriously ill he doesn't think she will be leaving us anytime soon. Abdul cried upon hearing that news. Thank you My God, thank you My God."