That is all I can really say, miracles really do happen. Hunter had his colonoscopy and motility study yesterday. He woke up from the anesthetic with a vengeance, but after we got him settled things went a lot better. The motility study didn't finish until 2:30 and then the GI doctor came up to take a look at the results. There was a look of amazement on his face, and he turned to me and said the results were not what he had anticipated. Dr. Sood said that it appears Hunter's small intestine is working 60% to 70%, which he was very happy about. Hunter's large intestine also appears to be working at an acceptable level. Dr. Sood was very happy that we did the motility studies and his recommendation at this time is to start J tube feeds. NO SURGERY!! Talk about a true miracle. Just a few months ago we thought for sure Hunter needed an ileostomy and now we are being told no surgery at this time. I get to feed my little boy!! I can't explain how excited I am.
So, right now we just have to continue to tolerate not being on CPap, and get to our maintenance feedings per hour of 52cc's and we can hopefully come home!! We are starting to bring up the big D word.
We are oh so blessed. I can't even explain how blessed we are. Hunter has been a true miracle since the day we had him, and he continues to beat the odds with a little help from some friends. See, miracles do happen, you just have to believe.
Thanks again for all your love and support and for keeping Hunter in your prayers. God Bless
Saturday, February 27, 2010
Friday, February 26, 2010
It's A Big Day
Well, today is the big day. As I am typing this, Hunter is down for his motility study. As we walked down the hallways I thought about the fact they should probably give parents anxiety meds. My stomach was in knots! When the doors of IR opened there waited the GI doctor and the anesthesiologist, who actually is a critical care doctor that knows Hunter well, his name, Dr. Scott. At that moment a sense of peace came over me. It was a relief knowing that he would be there for him. He also has his nurse Jonell today who is oh so wonderful to him, so I know she will be standing next to him holding his hand. This helps me wait patiently and be at peace knowing he is in good hands.
Even though this is the day we have waited so long for, I sit here wondering what the tests will bring us. I sit here and think about the last almost 8 weeks and everything that has happened. I sit here and think about how strong my little Boolicious is and how oh so proud of him I am. I sit here and think about how lucky we are to have such loving and supportive family and friends. I think about how many lives Hunter has touched, and how many more he has touched in the last 8 weeks.
So I sit here, and try to wait patiently and prepare myself for the hours to come. The tests will run until 2 or 3 this afternoon, but by tonight we should have our answers. Our answers that we have waiting oh so long for. The answers that we need to make our little man happy and comfortable again. The answers we need to get to the next step, home.
Thank you again for all your love and support. Please continue to pray for my sweet boy. God Bless
Even though this is the day we have waited so long for, I sit here wondering what the tests will bring us. I sit here and think about the last almost 8 weeks and everything that has happened. I sit here and think about how strong my little Boolicious is and how oh so proud of him I am. I sit here and think about how lucky we are to have such loving and supportive family and friends. I think about how many lives Hunter has touched, and how many more he has touched in the last 8 weeks.
So I sit here, and try to wait patiently and prepare myself for the hours to come. The tests will run until 2 or 3 this afternoon, but by tonight we should have our answers. Our answers that we have waiting oh so long for. The answers that we need to make our little man happy and comfortable again. The answers we need to get to the next step, home.
Thank you again for all your love and support. Please continue to pray for my sweet boy. God Bless
Wednesday, February 24, 2010
A Plan
Things are going well on this end of the world. Hunter has been having tremors, which after further investigation appear to be related to a decrease in his Keppra, his seizure med. They apparently had decreased his Keppra due to kidney function, which along the way I missed it somehow. We have upped his dose to the normal dose and the tremors seem to be better by over 50%.
Hunter is still growing the bacteria in his Trach that we were previously treating him for. We started him back on the antibiotics. Overall he seems to be doing well with it so all great signs. May just a little bit longer on the antibiotics.
Yesterday, this catheters for dialysis were pulled, which is huge! We were able to sit and hold him and he was able to get up in his wheelchair. This is so awesome! They also pulled his foley catheter and he is peeing like a champ. It is celebration time.
My friendly neighborhood GI doctor stopped by yesterday and it appears it is a go for Friday. Friday Hunter will go down at 7:30 in the morning to have a camera placed in hi Colon and through his GJ Tube. That procedure in itself will take around an hour or hour and a half. He will then come back up to his room to be monitored, fed, to watch how things are moving through is small and large intestines. This monitoring will go on until 2:00 to 3:00 in the afternoon and then hopefully we will have the answers to what we had originally came here for.
The light continues to shine at the end of the tunnel. We continue to pray for healthy lungs and to answers to come from our tests on Friday. Whether those answers are all looks well, or that we need to proceed with surgery, it doesn't matter.
I have been blessed with the greatest gift, my boy, and that is what matters.
Thanks again for all your love, prayers and support. God Bless
Hunter is still growing the bacteria in his Trach that we were previously treating him for. We started him back on the antibiotics. Overall he seems to be doing well with it so all great signs. May just a little bit longer on the antibiotics.
Yesterday, this catheters for dialysis were pulled, which is huge! We were able to sit and hold him and he was able to get up in his wheelchair. This is so awesome! They also pulled his foley catheter and he is peeing like a champ. It is celebration time.
My friendly neighborhood GI doctor stopped by yesterday and it appears it is a go for Friday. Friday Hunter will go down at 7:30 in the morning to have a camera placed in hi Colon and through his GJ Tube. That procedure in itself will take around an hour or hour and a half. He will then come back up to his room to be monitored, fed, to watch how things are moving through is small and large intestines. This monitoring will go on until 2:00 to 3:00 in the afternoon and then hopefully we will have the answers to what we had originally came here for.
The light continues to shine at the end of the tunnel. We continue to pray for healthy lungs and to answers to come from our tests on Friday. Whether those answers are all looks well, or that we need to proceed with surgery, it doesn't matter.
I have been blessed with the greatest gift, my boy, and that is what matters.
Thanks again for all your love, prayers and support. God Bless
Monday, February 22, 2010
Doing Good
Hunter continues to do well. Late last week they trialed him off the Cpap and just on trach collar. Hunter did pretty good for a day, but started to struggle. Hunter was 300 fluid positive which made his lungs a little on the wet side, which they believe caused him to have to go back on Cpap. In the big picture this is really not a big deal.
Hunter continues to pee like a champ, but the catheters are still in place as his levels are not quite where they want them yet. Hunter is still a little more aggravated than normal, edgy, elevated temp, and tremors, all believed to be related to withdrawals.
Today will be the day I will be talking with GI to confirm the plans for the colonoscopy and motility studies on Friday. They converted his mickey button to a Jtube on Friday, and he is getting pedialyte through the J at a rate of 40 cc's per hour and doing well with that. This is such a huge accomplishment.
Hopefully we continue to move in the right direction so we can bust out of here. Everyone has been so wonderful here. The nurses and the Dr's are all amazing. We are truly blessed to have such a great facility so close to home.
Please continue to pray for healthy lungs, for the withdrawals to pass, and for us to figure out our GI issues so we can go home.
We continue to be amazed by Hunter's strength and perseverance. We are so blessed.
Thanks again for all the love and support. God Bless
Hunter continues to pee like a champ, but the catheters are still in place as his levels are not quite where they want them yet. Hunter is still a little more aggravated than normal, edgy, elevated temp, and tremors, all believed to be related to withdrawals.
Today will be the day I will be talking with GI to confirm the plans for the colonoscopy and motility studies on Friday. They converted his mickey button to a Jtube on Friday, and he is getting pedialyte through the J at a rate of 40 cc's per hour and doing well with that. This is such a huge accomplishment.
Hopefully we continue to move in the right direction so we can bust out of here. Everyone has been so wonderful here. The nurses and the Dr's are all amazing. We are truly blessed to have such a great facility so close to home.
Please continue to pray for healthy lungs, for the withdrawals to pass, and for us to figure out our GI issues so we can go home.
We continue to be amazed by Hunter's strength and perseverance. We are so blessed.
Thanks again for all the love and support. God Bless
Wednesday, February 17, 2010
Light At The End Of The Tunnel
I can finally say I am seeing the light at the end of the tunnel. Hunter looks awesome. He continues to be off dialysis. Some of his blood work is still elevated, and once that hits a certain point, they will remove the catheters that are used for dialysis. I am hoping by Sunday. He continues to do well with the vent changes, and the hope is to try and take him off the vent either later today, or tomorrow to see how he does. They discontinued his daily xray since he is clinically improving so well, and we will just order as needed.
So, we are finally going to be able to start addressing the issue we were originally coming in for. Hunters tummy still is not tolerating feds. His nurse Joyce had a fabulous idea about converting his G-Tube to a J\G Tube to see if that would help him tolerate his feeds. So, we talked with GI and they thought we could give it a try. So, hopefully some time today he will be going to radiology to get that changed. Please continue to pray and keep your fingers crossed that this helps with his feedings.
So, we are seeing the light. Granted, we still have some things we need to get figured out and wrapped up before we can go home, but home is coming in to site.
Thank you again for all your love, prayers and support during this difficult road. It has been a long rough road but I knew we could make it.
God Bless
So, we are finally going to be able to start addressing the issue we were originally coming in for. Hunters tummy still is not tolerating feds. His nurse Joyce had a fabulous idea about converting his G-Tube to a J\G Tube to see if that would help him tolerate his feeds. So, we talked with GI and they thought we could give it a try. So, hopefully some time today he will be going to radiology to get that changed. Please continue to pray and keep your fingers crossed that this helps with his feedings.
So, we are seeing the light. Granted, we still have some things we need to get figured out and wrapped up before we can go home, but home is coming in to site.
Thank you again for all your love, prayers and support during this difficult road. It has been a long rough road but I knew we could make it.
God Bless
Sunday, February 14, 2010
True Blessings
This weekend continued to bring us true blessings. Hunter remains off of dialysis. He is making a ton of pee, and some of his blood work has gone down which are great signs that his kidney function is improving. We are oh so so blessed. We have also been able to start decreasing the vent settings little by little this weekend which is another huge milestone for us. Hunter's xray looks a tad bit bigger which reminds us that we are moving in the right direction.
So, we are taking steps in the right direction. Tomorrow we will see what the kidney Dr's have to say about pulling his mahooker (no idea how to spell). This is the catheter used for dialysis. If that gets pulled tomorrow that is huge!! We will also be talking to GI tomorrow about starting some slow feeds, maybe just some pedialyte to start. I am very very nervous about this and curious what they are going to have to say.
Please continue to keep Hunter in your thoughts and prayers. Continue to pray for healthy lungs, good filtered pee, and a healed tummy.
God Bless
So, we are taking steps in the right direction. Tomorrow we will see what the kidney Dr's have to say about pulling his mahooker (no idea how to spell). This is the catheter used for dialysis. If that gets pulled tomorrow that is huge!! We will also be talking to GI tomorrow about starting some slow feeds, maybe just some pedialyte to start. I am very very nervous about this and curious what they are going to have to say.
Please continue to keep Hunter in your thoughts and prayers. Continue to pray for healthy lungs, good filtered pee, and a healed tummy.
God Bless
Friday, February 12, 2010
Tummy Issues
Well, we hit a little bump in the road yesterday. Hunter's stomach was becoming distended and we pulled almost 300 cc's of blood and undigested food from his stomach. After much debate, GI scoped him and found that he had a GI bleed, the inside of his stomach appears "scratched", my term, due to all the stress and him going septic 6 weeks ago. So, we have added some meds to help coat and heal his tummy. The critical care Dr's will be consulting with GI to determine what the plan is feeding wise.
Next in line is our Kidneys. We are still off CVVH (Dialysis) for the time being. Of course one of the meds they put him on to stop the GI bleed decreases urine production. Seriously I feel like we can't win!! So, we added a few diuretics and we continue to make urine. Hunter ended the day at about 400 cc's positive. So, a few adjustments will be made today. We will decrease how much fluid he is getting in to hopefully help him get more fluid balanced and we will attempt to use a few diuretics if needed. We are hoping that his kidney's start filtering the urine better, as some of his numbers are high. If his numbers remain high, which means his kidneys are not doing a good job filtering, we may need to put him back on CVVH temporarily at least to help him out. So, please continue to pray for lots of good filtered pee.
As far as respiratory, we are not making too many changes there. We are keeping the vent settings as is, to help him try and rest. His X-ray appeared a little bit better this morning, so we continue to give that time. We have to get a few of the other things in line and under control first.
Last but not least, Hunter was having some weird behaviors. Twitching, startling easy, elevated temp, and a heart rate that was a little higher than normal. It appears Hunter is going through withdrawals. Yes, that is what I said. Never in my life did I think I would need to watch one of my children go through withdrawals, especially at 8 years old. Talk about heart retching. He is finally sleeping really good, the first time in 4 days.
So, we continue to pray for healing and guidance. Please continue to pray for lots of good filtered pee, healthy lungs, a healed tummy, and an overall good recovery.
Thank you again for all your prayers, love and support during these hard times.
God Bless
Next in line is our Kidneys. We are still off CVVH (Dialysis) for the time being. Of course one of the meds they put him on to stop the GI bleed decreases urine production. Seriously I feel like we can't win!! So, we added a few diuretics and we continue to make urine. Hunter ended the day at about 400 cc's positive. So, a few adjustments will be made today. We will decrease how much fluid he is getting in to hopefully help him get more fluid balanced and we will attempt to use a few diuretics if needed. We are hoping that his kidney's start filtering the urine better, as some of his numbers are high. If his numbers remain high, which means his kidneys are not doing a good job filtering, we may need to put him back on CVVH temporarily at least to help him out. So, please continue to pray for lots of good filtered pee.
As far as respiratory, we are not making too many changes there. We are keeping the vent settings as is, to help him try and rest. His X-ray appeared a little bit better this morning, so we continue to give that time. We have to get a few of the other things in line and under control first.
Last but not least, Hunter was having some weird behaviors. Twitching, startling easy, elevated temp, and a heart rate that was a little higher than normal. It appears Hunter is going through withdrawals. Yes, that is what I said. Never in my life did I think I would need to watch one of my children go through withdrawals, especially at 8 years old. Talk about heart retching. He is finally sleeping really good, the first time in 4 days.
So, we continue to pray for healing and guidance. Please continue to pray for lots of good filtered pee, healthy lungs, a healed tummy, and an overall good recovery.
Thank you again for all your prayers, love and support during these hard times.
God Bless
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