Last night was long, rough and exhausting. Mom is trying to catch up on her Zzzzs now. Between throwing up, bowel movements and Alex's anxiety, the night seemed like it would never end. At 10:00 this morning Alex was still wide awake. Mom couldn't leave her bedside for a shower or coffee. It may be that Alex's stomach was bothering her. She threw up a third time in three days. They decided to stop the feeds through her tube and keep her on the TPN through her IV. It may be a while before she is ready to start digesting again.
Today we are "puffing". This is like a mini version of dialysis. It doesn't take as long and you don't alter the chemicals within the body. A puff is strictly used to remove fluids. You still use the same dialysis machine, it just runs a little different. To be quite honest, I don't know the technicalities behind it all. All I know is that we had to give Alex some more meds to relax her and we are playing to blood pressure game again.
Alex is also very itchy. The meds cause this but her skin is so dry too. She is constantly rubbing her nose, her stomach, her hair and her face. As soon as she is asleep I am going to cover her in lotion. She's going to HATE it!!!
The ventilator settings were turned down a little bit more today. Out of 24 breaths per minute, the vent is taking 14 (Alex is breathing about 10). We need to have the vent only taking 5 or 6 breaths. There are also a few other levels that need to come down before she is off of the vent. Alex has progressed wonderfully but there is still a ways to go.
I wrote a letter to Taylor Swift for Alex requesting concert tickets. She really wants to go on September 25th. I read the letter to Alex today and she started crying...she is such a softy. She thinks Taylor Swift will give her tickets though. I know I would if I got a letter like that!
It's nice to have bits of Alex back with us. Where has she been these last 2 weeks? When I walked in today she lifted up her free hand for a hug. Having that little hand on my back with my face next to her soft body was such a joy. It's so nice to see her smile! 101 Dalmatians was on and she started dancing to Cruella de Vil. I think she really thought she was dancing crazy. It made me laugh histerically! She is such a trooper. She has been through so much but refuses to let it ruin her spirit.
We praise the Lord every day for the work He has done in her life and ours. But I am fearful of the Lord too. His power has been more real to us these past few weeks than ever before. Psalm 19:9 says, "The fear of the Lord is pure, enduring forever." And although we are making small steps each day, we still need prayer. Thank you for your continued support. It means the world to us (Alex's family) and Alex!
Today we are "puffing". This is like a mini version of dialysis. It doesn't take as long and you don't alter the chemicals within the body. A puff is strictly used to remove fluids. You still use the same dialysis machine, it just runs a little different. To be quite honest, I don't know the technicalities behind it all. All I know is that we had to give Alex some more meds to relax her and we are playing to blood pressure game again.
Alex is also very itchy. The meds cause this but her skin is so dry too. She is constantly rubbing her nose, her stomach, her hair and her face. As soon as she is asleep I am going to cover her in lotion. She's going to HATE it!!!
The ventilator settings were turned down a little bit more today. Out of 24 breaths per minute, the vent is taking 14 (Alex is breathing about 10). We need to have the vent only taking 5 or 6 breaths. There are also a few other levels that need to come down before she is off of the vent. Alex has progressed wonderfully but there is still a ways to go.
I wrote a letter to Taylor Swift for Alex requesting concert tickets. She really wants to go on September 25th. I read the letter to Alex today and she started crying...she is such a softy. She thinks Taylor Swift will give her tickets though. I know I would if I got a letter like that!
It's nice to have bits of Alex back with us. Where has she been these last 2 weeks? When I walked in today she lifted up her free hand for a hug. Having that little hand on my back with my face next to her soft body was such a joy. It's so nice to see her smile! 101 Dalmatians was on and she started dancing to Cruella de Vil. I think she really thought she was dancing crazy. It made me laugh histerically! She is such a trooper. She has been through so much but refuses to let it ruin her spirit.
We praise the Lord every day for the work He has done in her life and ours. But I am fearful of the Lord too. His power has been more real to us these past few weeks than ever before. Psalm 19:9 says, "The fear of the Lord is pure, enduring forever." And although we are making small steps each day, we still need prayer. Thank you for your continued support. It means the world to us (Alex's family) and Alex!
"Now I know that the Lord saves his anointed; he answers him from his holy heaven with the saving power of his right hand. Some trust in chariots and some in horses, but we trust in the name of the Lord our God. They are brought to their knees and fall, but we rise up and stand firm." Psalm 20:6-8
Well, Alex, you are going to have to put me down as "An Old Dog". I guess I can learn a new trick though. I found out today that the messages I send only show up on that day and then I need to send another one on another day. Yea! I want you to know that I love you so much and that we and all my friends at church are praying for you every day. I want to see that pretty smile on your face every day. Tell Phenias Hi for me. He is such a wonderful dog and he loves you so much. Prayers and kisses........Aunt Nell
ReplyDeleteIf I were Taylor Swift, I'd definitely give Alex tickets too! I can't think of anyone that deserves them more! :) Glad to hear she is dancing and making you guys laugh again! I love you guys and am continuing to pray for all of you! Give Alex hugs from us! -Rachel (and Brandon and Dixie)
ReplyDelete