Today we spent the better part of our day at Children's Hospital doing a routine trache scope. This is done every 6 months, just to make sure everything looks good for the trache internally. The neat thing is that our ENT specialist actually goes to our church and is willing to pray with patients prior to any procedure. That said, Abigail looks good, maybe just a small amount of irritation at the bottom of her trache . This could be from people sticking the suction catheter too far down (we will need to revisiting using the measuring increments to avoid this). This could also be a result of the reflux of her tube feeds (acidic juices don't belong in the trachea!). But it does not look too alarming at this point, just something to make note of.
After doing some thinking, and considering the above information, we have decided to back off of the boluses a little bit. We are going to do 5 a day at a only 150 mls and the rest on tube feed overnight. This will hopefully decrease the agitation, increased secretions, and reflux we have been seeing more and more following a bolus. I think her tummy just needs a little more time to adjust to the increased volume, so we are going to back off and take it a little slower. Also, she is so agitated that we are unable to use the passi-mier following a bolus, and this sets her back in vocalization and removing the trache. I think that is more important at this time than bolusing! But I know we will get there!
Thank you to good friends who were willing to spend time with my boys today while I cared for Abigail. They had a great time. Until next time...
Friday, January 16, 2009
Thursday, January 15, 2009
Adonay, Abigail's Deliverer
I have now worked 2 CNA shifts, and the second was much easier than the first! I actually had some sit down time which I used to do some well needed bible study. I am working through a book about the names of God, and this particular night I studied Yahweh/Adonay. This name literally refers to God as our Deliver. This is the name that the Israelites came to know God by when he delivered them from slavery in the book of Exodus. And how appropriate, since he literally delivered Abigail from death in that ER. Abigail is a miracle, there is no other explanation. She was under water for 30 minutes. Then clinically dead for 2 hours (no breathing or heart rate). Pastor Jeff and my husband began to pray OUT LOUD in the emergency room, Lord, you raised Lazarus from the dead. We believe that you still do miracles today, please, give us our daughter back. Within 30 seconds of that prayer, the nurse said, I have a pulse. Adonay, Abigail's deliverer.
This brings me to my second point: Why did God choose to act in Exodus, or in that hospital room? The Israelites were crying out. Richard and I and our Pastor cried out. God's power is released when we pray and ask. What do you need to ask for today?
Praise God, the infection that seemed to linger several weeks in this house in finally gone! I think a few of my nurses may have brought it home, please keep them in your prayers. Abigail is now not using the pump at all, she gets 6 boluses a day, and that covers all of her formula. The only negative is that at least half of the time when we give a bolus she gets agitated and has a lot more secretions, so as a result it is difficult to use her passi-mier. So we may have some setbacks in vocalization and ultimately removing her trache. Just pray for us to know the right thing to do. We visit the rehab doctor next Thursday and will know more about the hip situation at that time.
Thanks for reading. Talk to you soon.
This brings me to my second point: Why did God choose to act in Exodus, or in that hospital room? The Israelites were crying out. Richard and I and our Pastor cried out. God's power is released when we pray and ask. What do you need to ask for today?
Praise God, the infection that seemed to linger several weeks in this house in finally gone! I think a few of my nurses may have brought it home, please keep them in your prayers. Abigail is now not using the pump at all, she gets 6 boluses a day, and that covers all of her formula. The only negative is that at least half of the time when we give a bolus she gets agitated and has a lot more secretions, so as a result it is difficult to use her passi-mier. So we may have some setbacks in vocalization and ultimately removing her trache. Just pray for us to know the right thing to do. We visit the rehab doctor next Thursday and will know more about the hip situation at that time.
Thanks for reading. Talk to you soon.
Wednesday, January 7, 2009
Hide and Seek
Hello everyone. I hope you all had a wonderful Christmas season, celebrating the birth of our Lord and Saviour. We had a nice trip home to Minnesota. Abigail did well in the car (a total of 12 hours one way). She was a little bit more agitated and required oxygen and bi-pap on the way to Minnesota, but our time there and the trip home was for the most part uneventful. The grandparents loved spending time with the children, and vice verse. I was a little tired, not having a nurse on the trip with us and doing all of her care (overnights, in particular). It reminds me of how much I appreciate my overnight nurses, and all of the work that they do!! My mother in law and sister in law were both very helpful with the boys, keeping them out of the way every morning so that I could give Abigail her bath and therapy. We will look forward to our next visit.
Abigail, Josiah, and Levi received many wonderful gifts. I wanted to say thank you to those who sent gifts for Abigail, she now has a handful of toys that she can play with too. The boys received a museum membership from a friend, which we will use often. Really, thank you, you are all too kind. We are very grateful.
Abigail is almost done with her feeding pump, and everyone cheered! One less thing to charge at night and carry around with us. We are now bolusing 190 mls four times a day, so in 3 more days we will have reached our goal of 20o mls. At that time we need to add in 2 more boluses a day, and should be done. We should also be able to eliminate the J-tube, and go to strictly a G-tube. I just need to to talk to the doctor about our final plan. After that, I think we can continue to work on some med weans, namely the Valium and Labetolol. These will both probably be slow, but that is okay.
Please pray for this infection that seems to be lingering in my house. Abigail seemed fine for a handful of days, but now it is flaring up again. She is very agitated (high heart rate) and is having low grade fevers off and on. This would not be a big deal, but we have been trying to get her to kick this for about 3 weeks now. This is the stuff that tends to slow us down on boluses and med weans, since we don't like to make changes when she is already upset. If we do and there is a problem, it is difficult to know whether the agitation should be attributed to the changes we are making or the illness.
Also, please pray for guidance in some big decisions we have coming up. We just did x-rays and learned that Abigail's left hip is 50% dislocated and her right hip is 100% dislocated. I am in the process of having discussions with my physical therapist and rehabilitation doctors to make a plan. I will keep you all posted so that you can pray accordingly. She does not seem to be in any pain. We think that they have been this way for quite some time, as a result of the storming and tone. It may affect our plans for getting her in a stander, though. Hard to stand if your hips are dislocated.
And now for the title of the blog, Hide and Seek. Abigail is really doing a lot with her speech these days. We are working a lot on sucking with her pacifier, and she has started to move her tongue and move towards this reflex. She is also doing a lot more of turning her eyes and head toward voices, especially mom and dad. This is a huge step for her.
Lastly, I am doing my first overnight CNA shift tonite from 7 to 7. I am a little nervous being that it is my first time and all, but I am sure all will go well. Wish me luck!
Abigail, Josiah, and Levi received many wonderful gifts. I wanted to say thank you to those who sent gifts for Abigail, she now has a handful of toys that she can play with too. The boys received a museum membership from a friend, which we will use often. Really, thank you, you are all too kind. We are very grateful.
Abigail is almost done with her feeding pump, and everyone cheered! One less thing to charge at night and carry around with us. We are now bolusing 190 mls four times a day, so in 3 more days we will have reached our goal of 20o mls. At that time we need to add in 2 more boluses a day, and should be done. We should also be able to eliminate the J-tube, and go to strictly a G-tube. I just need to to talk to the doctor about our final plan. After that, I think we can continue to work on some med weans, namely the Valium and Labetolol. These will both probably be slow, but that is okay.
Please pray for this infection that seems to be lingering in my house. Abigail seemed fine for a handful of days, but now it is flaring up again. She is very agitated (high heart rate) and is having low grade fevers off and on. This would not be a big deal, but we have been trying to get her to kick this for about 3 weeks now. This is the stuff that tends to slow us down on boluses and med weans, since we don't like to make changes when she is already upset. If we do and there is a problem, it is difficult to know whether the agitation should be attributed to the changes we are making or the illness.
Also, please pray for guidance in some big decisions we have coming up. We just did x-rays and learned that Abigail's left hip is 50% dislocated and her right hip is 100% dislocated. I am in the process of having discussions with my physical therapist and rehabilitation doctors to make a plan. I will keep you all posted so that you can pray accordingly. She does not seem to be in any pain. We think that they have been this way for quite some time, as a result of the storming and tone. It may affect our plans for getting her in a stander, though. Hard to stand if your hips are dislocated.
And now for the title of the blog, Hide and Seek. Abigail is really doing a lot with her speech these days. We are working a lot on sucking with her pacifier, and she has started to move her tongue and move towards this reflex. She is also doing a lot more of turning her eyes and head toward voices, especially mom and dad. This is a huge step for her.
Lastly, I am doing my first overnight CNA shift tonite from 7 to 7. I am a little nervous being that it is my first time and all, but I am sure all will go well. Wish me luck!
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