Sunday, August 3, 2008
We will wait to see what the doctors come up with
Praise God the itching stopped around 2:00 this morning. Jacob and I got three hours of sleep before he woke at 5:00 am with some pain. I wish I could say it was good sleep, but the chair bed is not the best. Again I need to express how wonderful these nurses are because Karen (a nurse that came in to help lift Jacob) said she will bring us her twin air mattress from home tonight. She had bought it for a mom that was staying here for a long time too. Karen also got a hospital air mattress for Jacob. We are just waiting for the right time to lift him and put the mattress under him. She said anyone who is in the bed longer than three days gets this because it will help with bed sores.
Dr. S (bone dr.) came in at 6:00am and I told him Dr. Jallo (neuro) stopped by and said Jacob had a stretched nerve and the feeling would come back within a few months. I saw Dr. S's facial expression and then I said "but we can't stay like this for 3 months" and he said "no." He would have to get with Dr. Gearhart (urology) and Dr. Jallo and put their heads together to come up with something. He will get back with us and let us know what they decide.
Jacob continues to wake up often, due to the itching that is related to his pain medicine. The pain team just came by and we will be making a few changes. Jacob will receive his primary pain med orally every four hours. In addition, we will be changing the med that we use through the "pain button" to match one that he had back in the fall during his tethered cord surgery (the "pain button" is a little button by his bed that his mom and I are able to press when he needs a very small additional dose of medication to assist with pain or discomfort). We are also changing the "button" medicine to one that he was on when he had his spinal surgery. If we remember correctly, this one worked for Jacob and did not cause itching. Please pray that these changes will be effective in helping to relieve his itching. Also, please continue to pray that the Lord will restore movement and feeling to his right foot.
To God be the glory, great thing He has done.
Daddy BA and Mommy
Dr. S (bone dr.) came in at 6:00am and I told him Dr. Jallo (neuro) stopped by and said Jacob had a stretched nerve and the feeling would come back within a few months. I saw Dr. S's facial expression and then I said "but we can't stay like this for 3 months" and he said "no." He would have to get with Dr. Gearhart (urology) and Dr. Jallo and put their heads together to come up with something. He will get back with us and let us know what they decide.
Jacob continues to wake up often, due to the itching that is related to his pain medicine. The pain team just came by and we will be making a few changes. Jacob will receive his primary pain med orally every four hours. In addition, we will be changing the med that we use through the "pain button" to match one that he had back in the fall during his tethered cord surgery (the "pain button" is a little button by his bed that his mom and I are able to press when he needs a very small additional dose of medication to assist with pain or discomfort). We are also changing the "button" medicine to one that he was on when he had his spinal surgery. If we remember correctly, this one worked for Jacob and did not cause itching. Please pray that these changes will be effective in helping to relieve his itching. Also, please continue to pray that the Lord will restore movement and feeling to his right foot.
To God be the glory, great thing He has done.
Daddy BA and Mommy
To those who are up and can't sleep
Its almost 2:00 am and I'm putting out a prayer request to those of you who are up and can't sleep like Jacob. Please pray with me that this itching stops. All the nurses here are trying their hardest to get Jacob what he needs, but nothing seems to be working. He is doing the wiggle to try and scratch his back which causes his hips to move and he is not suppose to move them at all. I'm trying to type this quickly because if I take my hand off him he screams out mama. I'll let everyone know what happen.
Thank you all and thank you to the one who is up now reading Jacob's blog and praying.
Love, Courtney
Thank you all and thank you to the one who is up now reading Jacob's blog and praying.
Love, Courtney
Saturday, August 2, 2008
Evening update - an afternoon with Gran and Papa
Jacob's Gran and Papa Frere came to sit with Jacob this afternoon. He calls them Nanna and Papa and we were glad to hear him actually say these words and "talk" a little more today. He has started to eat again and managed to take down some pears and even some meat sticks (his personal favorite). He also received his first bath today, which helped tremendously. He continues to struggle with the rashes and also the itching (likely caused by the pain meds). In addition, we still have not seen much movement in his right foot, but the doctors remain optimistic that the feeling and sensation will return in due time (or as we would say, in God's time).
With Gran and Papa here with Jacob, Courtney and I were able go spend some time with our older son, James. I played hide-and-seek with he and his younger cousin, Ronnie and we just hung out with them for the afternoon. We then brought James down to the hospital to visit his brother. Jacob was very glad to see him (he points to him and calls him "Bubba").
Have a good evening and thanks for your continued prayers.
Daddy BA
With Gran and Papa here with Jacob, Courtney and I were able go spend some time with our older son, James. I played hide-and-seek with he and his younger cousin, Ronnie and we just hung out with them for the afternoon. We then brought James down to the hospital to visit his brother. Jacob was very glad to see him (he points to him and calls him "Bubba").
Have a good evening and thanks for your continued prayers.
Daddy BA
Morning Update - visit from the doctors
Jacob had a fairly peaceful night and slept really well for about four hours. There was a large thunderstorm that rolled through downtown Baltimore at about 4 am. We are on the 7th floor of the hospital and it was pretty amazing to see the lightning, rain and wind flash and blow over the tops and in between the downtown buildings. God's creation is truly a beautiful thing to behold.
This morning Dr. Sponseller came by to check on Jacob's right foot as well as the rashes he's developed. He, like Dr. Jallo, feels that the lack of movement in his foot is only temporary and was encouraged to see some improvement. He will continue to monitor this and perhaps begin to make some adjustments to the fixator in a few days.
About an hour later, two members of the Urology team, who will be performing his next surgery, stopped by to see Jacob. They checked out his rashes and advised that we should continue to treat them with the Nystatin cream, but that they will continue to follow his progress closely as we move toward the next surgery. So, far, we still don't know when the bladder surgery will occur, but most likely it will be the week of the 18th. We understand from talking to several of the nurses that we will truly be amazed at how Jacob will look after this next surgery. We also found out that he will be spending a fair bit of time in the IMC (Intermediate Care) facility after this next surgery so that his pain meds can be closely monitored.
Please continue to pray for Jacob's right foot, a slight cough he has developed, his rashes and that he will be able to begin eating more regular foods soon. He has been drinking plenty of fluids, but has not wanted much of his Pediasure. We will be trying some more solid foods as well.
Also, please pray that a spot may open for us to stay in the Children's House. We are currently staying in a nice townhouse that is very close to the hospital, but it is significantly more expensive.
We thank the Lord for the amazing skills and talents He has given to these surgeons, doctors, nurses and caregivers here at Johns Hopkins.
For His glory,
Daddy BA
This morning Dr. Sponseller came by to check on Jacob's right foot as well as the rashes he's developed. He, like Dr. Jallo, feels that the lack of movement in his foot is only temporary and was encouraged to see some improvement. He will continue to monitor this and perhaps begin to make some adjustments to the fixator in a few days.
About an hour later, two members of the Urology team, who will be performing his next surgery, stopped by to see Jacob. They checked out his rashes and advised that we should continue to treat them with the Nystatin cream, but that they will continue to follow his progress closely as we move toward the next surgery. So, far, we still don't know when the bladder surgery will occur, but most likely it will be the week of the 18th. We understand from talking to several of the nurses that we will truly be amazed at how Jacob will look after this next surgery. We also found out that he will be spending a fair bit of time in the IMC (Intermediate Care) facility after this next surgery so that his pain meds can be closely monitored.
Please continue to pray for Jacob's right foot, a slight cough he has developed, his rashes and that he will be able to begin eating more regular foods soon. He has been drinking plenty of fluids, but has not wanted much of his Pediasure. We will be trying some more solid foods as well.
Also, please pray that a spot may open for us to stay in the Children's House. We are currently staying in a nice townhouse that is very close to the hospital, but it is significantly more expensive.
We thank the Lord for the amazing skills and talents He has given to these surgeons, doctors, nurses and caregivers here at Johns Hopkins.
For His glory,
Daddy BA
Friday, August 1, 2008
Evening Update - visit from Dr. Jallo
Dr. Jallo, the neurosurgeon who performed Jacob's tethered cord surgery last year, came by to chat with us about the lack of movement in Jacob's right foot. After checking it out, he basically set our minds at ease and indicated that this has likely been caused by stretching of the nerves and muscles as a result of the traction (fixator) that is on his legs and that it is not likely to be permanent. He did note, though, that this can last for several months, and that we should continue to monitor it throughout the duration of his stay. Please continue to pray for this concern and also some "rashes" that have sprung up in several places and have caused him some discomfort (itching/scratching). Please pray for his mommy, too, as she tries to catch up on some much needed sleep this evening. Also, please rejoice that the PICC line has remained in place and seems to be working as expected. Jacob has also started to drink his Pediasure again (this has been a primary source of nutrition for him for almost a year, even though he does like to eat a few other solid foods.)
In Him,
Daddy BA
In Him,
Daddy BA
Afternoon update - post PICC line procedure
We rejoice that Jacob's PICC line was successfully inserted this morning. The procedure took a little over an hour and he is now resting back in his room. His mommy is also attempting to get a little rest, too, which is much needed. While waiting for the procedure this morning, we ran into Dr. Jallo, the neurosurgeon who performed Jacob's tethered cord surgery last fall. We mentioned our concern with Jacob's right foot, so he has agreed to stop by and check it out this afternoon. Also, it appears that Jacob's next surgery, the bladder closure, will take place in about three weeks instead of two, to allow time for any necessary adjustments to the fixator that is on his pelvis and to see if anything changes with his right foot.
Please continue to uphold Jacob in prayer, especially our concern over the lack of movement in his right foot.
In Christ, and Him Alone,
Daddy BA
Please continue to uphold Jacob in prayer, especially our concern over the lack of movement in his right foot.
In Christ, and Him Alone,
Daddy BA
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