The Virginia trip brought information to us that we needed, whether it was information we wanted to hear or not. Damn it anyway when you have to be the bearer, a job I emphatically hate. I would make a terrible town crier. It takes me way too long to digest unexpected things. This is a wealth of information and putting it in simplest form was by no means easy.
Our family was anticipating Virginia's trip to be the beginning of the journey for Jake that would plan out a path of corrective surgery and ultimately leave him healthy and out of danger from infection. I expected much more. I expected to come home and be able to say "this is what is going to fix things" We instead are left to move to acceptance and just say this is what we're going to do.
Here are the facts:
The ear canal that Jake has is by no means sufficient for normal hearing or normal function. It is in fact this partially formed narrow ear canal that has been the root of the many health problems that Jake has had. Since it is not wide enough to perform and shed like a normally formed ear canal, the build up of shedding skin that would leave the body through the ear canal just collected in the narrow canal and formed this mass called a cholesteatoma. When it was removed it was larger than 14mm. It eroded his ear canal bone, but thankfully left his cochlea intact. The other grim information from the surgery report leaves us very thankful to have a healthy boy now.
We came home needing to make a definitive choice on what we hope will be the lesser of two evils.
The surgery uncovered that this ear canal did indeed have an eardrum and both the ear canal and eardrum were left intact. Leaving this poorly formed and insufficient ear canal there ultimately means that the cholesteatoma that formed is likely to grow again. The next fact that affects the decision making is that Jake has chronic ear infections due to eustation tube dysfunction. This simply stated means that if he had a normally formed ear canal, like his brothers, he too would have tubes in his ears to help him outgrow this chronic ear infection problem. Since he has no ear canal and no way to place a tube to help with the drainage of infected fluid, it just collects nicely in his head.
Jake’s surgeon had to decide the lesser of two evils when he performed the surgery. Should he remove this insufficient canal and eardrum that caused these problems and just close off the ear cavity, or leave it there and address only the infection. He did what was best for Jake at the time and removed the infection, and the mass in hopes of a canalplasty surgery in the near future.
All of these facts brought us to seek a second opinion by a man who specializes in ear canal reconstruction. His opinion is that Jake has many factors that make him a complex patient:
1. He needs to recover from the surgery.
2. He needs to remain infection free to allow the infected area to heal completely before any other surgery is considered.
3. He needs to outgrow the eustation tube dysfunction problem. This middle ear infection problem leaves his middle ear packed with fluid which will make any surgery attempt unsuccessful.
4. Jake’s fear of doctors is a huge factor. We are dedicated to making doctors the “good guys” in his eyes and he has already come a long way. After care for this type of surgery is extremely vital to it’s success and he needs to be tolerable of the doctors that need to give this care. Right now he runs screaming in the opposite direction of anyone with a white coat or stethoscope.
Until these issues are resolved Jake is not a candidate for a canalplasty (ear canal reconstruction) on his left side where he had to have the emergency mastoidectomy surgery.
This was devastating news to us, because in order for him to stay healthy that ear canal needs to be open for proper drainage. Since the initial surgery that we thought would solve the health problems is not an option now we still are brought back to choosing the lesser of 2 evils to get him healthfully through until he is a good candidate for the surgery.
1. Initiate a second surgery to remove the ear canal tissue and eardrum to prevent a cholesteatoma from coming back. Doing this will also leave an even larger empty pocket in the area where a normal ear canal would be, where fluid can collect and store from a middle ear infection. This will also mean reopening a recent surgery site and forcing him to heal yet again.
2. Wait and do nothing for 6 months, then get a CT scan in the hopes that we see that the inner ear area is fluid free and healing without complications. This means that we take things 6 months at a time and pray that the cholesteatoma doesn’t grow back before he outgrows the ear infection problem and is ready for the canalplasty surgery. This may be in a year, or in two or three years, we just won’t know until we get there.
What would you do? We have cried, and prayed, and cried some more. Here ya go folks! Two ticking time bombs for you. Which one do you think you have more time with. Choose that one.
We are choosing #2. Jake has been in God’s hands since he was given to us and that’s where he will stay. We will wait out the 6 months from the date of surgery. That will bring us to just about the end of May. We pray that the CT results will show us nice healing and a healthy middle and inner ear with no infection.
When we get this CT scan completed, we will also be seeking the third opinion of a specialist in the same field. The two opinions that we received thus far contrasted so greatly in so many ways that we would really like to see 2 specialists agree on what they think is best for Jake or at least not be so grossly different that we are left up in arms. One surgeon aggressively told us that Jake should have his canal reconstructed this April, the other told us to put the brakes on, allow time for healing and be cautious as our son is a complicated patient and time is our best ally.
Along with this huge cloud of uncertainty we were also greeted with irony in it’s most pure form. Jake does have a good ear and is an excellent candidate for canalplasty. What’s the irony you may ask? The good ear is the right ear where there is, in fact, no outer ear. If your belly did a flutter of excitement, be excited! We are very excited but first things first. We need this little guy to stay healthy and that means the “bad” side has to be addressed first.
We brought home a very vibrant and happy little boy from the hospital last November and he has proven to us what a deficit his constant infection and pain was in the past. He has gained 4 pounds since he is home. That’s more than he has gained in almost 2 years and we are thrilled to have an infection and pain free little terrible 3 running around, instigating all three of his older brothers on a daily basis.
Jake is on his third set of antibiotics since his surgery in November and continues to constantly battle sinus infection, which just complicates the ear infection factor. We look forward to May when we can have his CT scan completed and hope to keep his ears dry on the inside until then for some nice healing.
I thank all of you in our family whether it be the friend family or the family family for your patience with us in trying to find the best way to explain all of this complicated news. This newest fork in the road just shows me that we can’t anticipate the next move. This is very difficult as I do best in a well informed world.
In closing, this is what we’re going to do! We will see you all on the path of our journey just a little farther up the road! Thanks for the prayers, love and all of the positive reinforcement. We could never survive without those key factors. Peace.
Friday, February 19, 2010
Jake's Update December 31, 2009 8:57pm
Hi to all and my apologies to those of you who have been waiting for an update for such a long time. I sometimes get a bit on over load, and I've been there since we came home from the hospital.
I will first start by saying that Jake is doing awesome! Since we came home from the hospital, his surgery site has healed, and it's like we have a new little boy running around here! This is what we have seen in a little over a month:
Jake has chubby cheeks! He's bulking up :0) and had put on over 2 pounds in a little over a month since he has been home. That's more than he has gained in over a year and a half. His cheeks are pink, he has energy like we have never seen before, and we always thought he was a big talker before, but we were mistaken. He is an utter and complete motor mouth. He never shuts up. His speech clarity has improved dramatically and he is still only wearing one hearing aid. He is a big mouth and the biggest instigator in the house and we love it. (Seems he may have a bit of his Momma in him?)
Jake has been very excited to tell everyone who asks that his big ear is better and the hurt is gone. When he returned to preschool, he greeted every single teacher with a hug and each student-friend the same, one by one. He had his first play in snow EVER! It's nice to have a healthy and pain free Jake.
"The Plan" so to speak has been on the move since we returned home. The only goal we have right now is making sure that Jake stays healthy and infection free until he can get his next surgery. He is on a strong antibiotic again right now to clear up a new sinus infection and we need to keep his head and ears clear so we keep praying so that he can heal on the inside and not have to rush into another operation too quickly.
After Jake's one week follow up with his ENT team at Childrens Hospital of Philadelphia we are consulting with expert surgeons in the field of Atresia Repair, as we were before his emergency surgery. There are two that we are considering, one in California that we were quite sure that we would have perform Jake's surgery. The second is in Virginia. I was always under the impression that this doctor was never a clear option for us because I was under the assumption that he only dealt with children older.
I thankfully have had much help and guidance from an angel of a woman who I call friend out in California. She has been a savior to me in making sure that my head stays clear and filled with facts and this has helped me stay on a clear course in getting many questions answered.
The doctor in California has given us some information and would like to have a copy of a new CT scan sent to him which we are scheduling
We are consulting with the doctor in Virginia soon. We leave on the 7th of January and return on the 9th or 10th. Hopefully we will have more clarity to the plan and I will post right away with any new news. What we know now is that Jake's inner ear needs to stay healthy and the only way that can happen is to get that ear canal opened and that needs to be done by a genius in this field. We have to just choose between the two we know. We already love the doctor in California and our "people" out there. Being East Coast dwellers, we have to explore the possibility of surgery in Virginia also. Being a family of 6, six hours by car is more do-able than 2 by car, then 6 by plane but not at all a reason to choose a surgeon. We will get our consultations and get rolling with the plan.
I will be taking this trip to "Virginny" with our beloved Captain Nanny. For those of you not in the loop, Captain Nanny is Paul's Grandmother on the Whitenight side of the family. When she originally found out that I would be traveling solo with Jake, she offered to come along. Now we will take to the road Thelma and Louise style. Not being alone is huge. Getting special time with the Captain is even bigger.
I will end by saying that I am a show me the facts kind of girl. That IS fact, but there is something about the way I was told "you need to bring him to me" that is gnawing at my gut feeling. Virginny, here we come.
I will first start by saying that Jake is doing awesome! Since we came home from the hospital, his surgery site has healed, and it's like we have a new little boy running around here! This is what we have seen in a little over a month:
Jake has chubby cheeks! He's bulking up :0) and had put on over 2 pounds in a little over a month since he has been home. That's more than he has gained in over a year and a half. His cheeks are pink, he has energy like we have never seen before, and we always thought he was a big talker before, but we were mistaken. He is an utter and complete motor mouth. He never shuts up. His speech clarity has improved dramatically and he is still only wearing one hearing aid. He is a big mouth and the biggest instigator in the house and we love it. (Seems he may have a bit of his Momma in him?)
Jake has been very excited to tell everyone who asks that his big ear is better and the hurt is gone. When he returned to preschool, he greeted every single teacher with a hug and each student-friend the same, one by one. He had his first play in snow EVER! It's nice to have a healthy and pain free Jake.
"The Plan" so to speak has been on the move since we returned home. The only goal we have right now is making sure that Jake stays healthy and infection free until he can get his next surgery. He is on a strong antibiotic again right now to clear up a new sinus infection and we need to keep his head and ears clear so we keep praying so that he can heal on the inside and not have to rush into another operation too quickly.
After Jake's one week follow up with his ENT team at Childrens Hospital of Philadelphia we are consulting with expert surgeons in the field of Atresia Repair, as we were before his emergency surgery. There are two that we are considering, one in California that we were quite sure that we would have perform Jake's surgery. The second is in Virginia. I was always under the impression that this doctor was never a clear option for us because I was under the assumption that he only dealt with children older.
I thankfully have had much help and guidance from an angel of a woman who I call friend out in California. She has been a savior to me in making sure that my head stays clear and filled with facts and this has helped me stay on a clear course in getting many questions answered.
The doctor in California has given us some information and would like to have a copy of a new CT scan sent to him which we are scheduling
We are consulting with the doctor in Virginia soon. We leave on the 7th of January and return on the 9th or 10th. Hopefully we will have more clarity to the plan and I will post right away with any new news. What we know now is that Jake's inner ear needs to stay healthy and the only way that can happen is to get that ear canal opened and that needs to be done by a genius in this field. We have to just choose between the two we know. We already love the doctor in California and our "people" out there. Being East Coast dwellers, we have to explore the possibility of surgery in Virginia also. Being a family of 6, six hours by car is more do-able than 2 by car, then 6 by plane but not at all a reason to choose a surgeon. We will get our consultations and get rolling with the plan.
I will be taking this trip to "Virginny" with our beloved Captain Nanny. For those of you not in the loop, Captain Nanny is Paul's Grandmother on the Whitenight side of the family. When she originally found out that I would be traveling solo with Jake, she offered to come along. Now we will take to the road Thelma and Louise style. Not being alone is huge. Getting special time with the Captain is even bigger.
I will end by saying that I am a show me the facts kind of girl. That IS fact, but there is something about the way I was told "you need to bring him to me" that is gnawing at my gut feeling. Virginny, here we come.
Jake's update after surgery. Sunday November 22, 2009 8:26pm
I am very HAPPY THAT JAKE IS FINALLY SLEEPING for the first time today since 7am this morning so that I could tell everyone his great news. For everyone who has followed us since we have been in Philadelphia, here is the after surgery update.
I am very happy to write to everyone and let you all know that Jake's surgery was a success. We tried to keep everyone updated as the events unfolded Friday night into Saturday morning that lead to his emergency surgery.
We have spoken to the doctors and we were given this great news following the surgery:
*A large cholesteatoma was removed from within Jakes middle ear along with a great deal of infected material that had nowhere to drain because he doesn't have an opening to his ear canal. Jake has the opening of an ear canal that quickly comes to an end. This cholesteatoma lived in the middle of where a normally formed ear canal should be. Picture a tunnel that comes to an end. Immediately following the end of the tunnel, there is a huge boulder. On the opposite of the boulder there is more tunnel. This area referred to as more tunnel is the other side of Jake's ear canal that we didn't know existed. YAY! At the end of that little ear canal that we didn't know existed lies (thank you Jesus) an eardrum. He has an eardrum, I could do back flips. This is something we were told was at best unlikely and never happens. It's great news BECAUSE when his surgery is done in the near future to connect those two pieces of NATURALLY formed ear canal in the middle with very little skin grafting needed, he also won't need an artifical or constructed ear drum. He has his own. Less grafting means less possibility of rejection, means better result of a very successful canalplasty surgery with very little transplanted skin from other areas of his body, and ultimately, yes better hearing ability.
My apologies for this lump of an update that I am staring at. I am apalled to think that I am not correcting the paragraphs or even using spell check but I am dog-ass tired and The Philadelphia eagles are about to SQUASH the Chicago Bears....Love you Ray, but you're goin' down!
Those of you who know me to the core know that it's been a long 3 1/4 year road and I have said the whole time that everything happens for a reason. All of this medical frustration that we have been dealing with during this time has lead us into the hands of the gifted doctors that we have seen, who carry reasoning, compassion, empathy, a love for human life and a passion for healthy and happy children. We know that we were not lead here by chance.
I am learning some important stuff along this journey. I learned this week that when I DO feel like I can't take anymore I truly AM just about to be at my best and I don't realize it. I am just wishing that there could be a little smoother transition to getting to it :0) Thanks for all of you who glued me back together, you know who you are.
I am learning that when your inner voice tells you something is wrong, it is not usually, it is always.
I am learning that even though I have faith, I need to be more like Paul and have a lot more and not always look for logic because I keep being shown that when I am most insistantly searching for logic, I can never find any and something else takes over.
I am learning that there is way more good in people than I could have ever imagined after being conditioned as a hardened non emotional bank employee striving for the corporate dollar.
I am learning that in the worst of times you get the best of people and from our entire family I thank you all who have shown us and given us your best. We never forget. We always pay it forward.
I am very happy to write to everyone and let you all know that Jake's surgery was a success. We tried to keep everyone updated as the events unfolded Friday night into Saturday morning that lead to his emergency surgery.
We have spoken to the doctors and we were given this great news following the surgery:
*A large cholesteatoma was removed from within Jakes middle ear along with a great deal of infected material that had nowhere to drain because he doesn't have an opening to his ear canal. Jake has the opening of an ear canal that quickly comes to an end. This cholesteatoma lived in the middle of where a normally formed ear canal should be. Picture a tunnel that comes to an end. Immediately following the end of the tunnel, there is a huge boulder. On the opposite of the boulder there is more tunnel. This area referred to as more tunnel is the other side of Jake's ear canal that we didn't know existed. YAY! At the end of that little ear canal that we didn't know existed lies (thank you Jesus) an eardrum. He has an eardrum, I could do back flips. This is something we were told was at best unlikely and never happens. It's great news BECAUSE when his surgery is done in the near future to connect those two pieces of NATURALLY formed ear canal in the middle with very little skin grafting needed, he also won't need an artifical or constructed ear drum. He has his own. Less grafting means less possibility of rejection, means better result of a very successful canalplasty surgery with very little transplanted skin from other areas of his body, and ultimately, yes better hearing ability.
My apologies for this lump of an update that I am staring at. I am apalled to think that I am not correcting the paragraphs or even using spell check but I am dog-ass tired and The Philadelphia eagles are about to SQUASH the Chicago Bears....Love you Ray, but you're goin' down!
Those of you who know me to the core know that it's been a long 3 1/4 year road and I have said the whole time that everything happens for a reason. All of this medical frustration that we have been dealing with during this time has lead us into the hands of the gifted doctors that we have seen, who carry reasoning, compassion, empathy, a love for human life and a passion for healthy and happy children. We know that we were not lead here by chance.
I am learning some important stuff along this journey. I learned this week that when I DO feel like I can't take anymore I truly AM just about to be at my best and I don't realize it. I am just wishing that there could be a little smoother transition to getting to it :0) Thanks for all of you who glued me back together, you know who you are.
I am learning that when your inner voice tells you something is wrong, it is not usually, it is always.
I am learning that even though I have faith, I need to be more like Paul and have a lot more and not always look for logic because I keep being shown that when I am most insistantly searching for logic, I can never find any and something else takes over.
I am learning that there is way more good in people than I could have ever imagined after being conditioned as a hardened non emotional bank employee striving for the corporate dollar.
I am learning that in the worst of times you get the best of people and from our entire family I thank you all who have shown us and given us your best. We never forget. We always pay it forward.
Jake's update #3 Friday November 20, 2009 3:22pm
I woke up this morning for the first time at about 06:25hrs with 4 doctors standing over me. What a stupid feeling that gives you! First thought: Oh my GOD I'm in my jammies. Once I got over that I and they examined Jake, I had a list of questions for them that I had been working on when I was supposed to be sleeping last night. I typed down all of their responses including their names into my phone since in my disheveled state I knew I couldn't rely on brain cells, so don't worry all of you who have been asking for the plan. I took down the plan! I was my own secretary and got it all.
Here's the plan. We are here until Jake is better, that's the plan. Jake will be on an IV antibiotic and he is being closely monitored for signs that the infection is clearing up. When the doctors are sure that the infection is not a threat to him anymore he will come off of the IV medication and onto oral, that is the next step. Once he is on an oral medication and they are comfortable with his activity level, he will have more bloodwork completed before we go home. When we leave for home he will still be on an oral antibiotic. We will return and have an MRI completed to re scan the area that was full of infection. The doctors explained to me that there is a new MRI procedure that allows them to be able to identify the content of material that is seen, for example, bone, tissue, fluid, skin tissue. We will receive those instructions when we are leaving. So that is the plan so far.
Leaving is still not being discussed at ALL which doesn't give me the warm fuzzies, because I miss my family at home and most of you know how well I do in small confined places. I already had a nurse tell me if I continue to lap her, she would take Jake's stroller and my sneakers. :0(
The good news:
Jake slept through the night, YAY! That was awesome, minus the Doctor Dudes sneaking up on me in my jammies. We graduated today from milk and juice to cheerios also. This seems trivial without knowing that cheerios are the first solids he has eaten since Monday. When he opens his mouth to get them in he is still wincing in pain and he holds his head when he chews but at least he is hungry. We are sticking with the pain medication to make it easier.
We traveled by wagon today from 4 East to 4 West to do laundry, as I must keep my NEW MOON shirt clean and beautiful. After visiting 4 West we went up to the 8th floor to the library to take out a book and a DVD. When we were leaving and checking out the book, the librarian said to Jake "Oh, YOU'RE Jake Whitenight? THE Jake Whitenight?" He said "Yes, I am da Jake Whitenight and my Mommy's best buddy." She then told him to wait right there "shugga" I have something here for you. She came back with a letter and handed it to him. The kid got mail! How exciting! I was so excited, HE was 1000 times more excited than me! I have read it, I don't even know how many times now but it doesn't matter he has it memorized. Every time I start to read it again by request, he recites it with me. Thank you so much Melinda and the Brady family, you really made his day. Since then, every good wish that he has gotten from you all on the computer, I read to him and he has been answering back on his own, I am just the typist. They are the bright spots to his day. Every time he gets a little bored he says "I have a great idea Mommy! Let's go see who is talking to Jakey on the ump-a-u-ter." Thanks all.
If anyone has a minute and would like to send him a card, here is the link:
http://www.chop.edu/ecards/ecards.cfm
I think the idea is genius for hospitals, and I think a very little known patient/ guest feature that's available.
Right now Jakey is sleeping soundly, allowing me time to update, shower and get something to eat. Special thanks to all of you at home who have been helping out with the Whitenight Boys at home by sending food and goodies for them. Thank you also to all of you who are helping out with watching the boys when you can so that Paul is able to get here to the hospital and go to work! We have found our strength in all of your support and we love you.
Three things I know today:
1. It takes a whole village to raise one child
2. You can find things that make you laugh out loud even in the toughest of times.
3. Just when I think I can't take it anymore, I'm about to be at my toughest, and I just don't see it
coming yet. :0)
Here's the plan. We are here until Jake is better, that's the plan. Jake will be on an IV antibiotic and he is being closely monitored for signs that the infection is clearing up. When the doctors are sure that the infection is not a threat to him anymore he will come off of the IV medication and onto oral, that is the next step. Once he is on an oral medication and they are comfortable with his activity level, he will have more bloodwork completed before we go home. When we leave for home he will still be on an oral antibiotic. We will return and have an MRI completed to re scan the area that was full of infection. The doctors explained to me that there is a new MRI procedure that allows them to be able to identify the content of material that is seen, for example, bone, tissue, fluid, skin tissue. We will receive those instructions when we are leaving. So that is the plan so far.
Leaving is still not being discussed at ALL which doesn't give me the warm fuzzies, because I miss my family at home and most of you know how well I do in small confined places. I already had a nurse tell me if I continue to lap her, she would take Jake's stroller and my sneakers. :0(
The good news:
Jake slept through the night, YAY! That was awesome, minus the Doctor Dudes sneaking up on me in my jammies. We graduated today from milk and juice to cheerios also. This seems trivial without knowing that cheerios are the first solids he has eaten since Monday. When he opens his mouth to get them in he is still wincing in pain and he holds his head when he chews but at least he is hungry. We are sticking with the pain medication to make it easier.
We traveled by wagon today from 4 East to 4 West to do laundry, as I must keep my NEW MOON shirt clean and beautiful. After visiting 4 West we went up to the 8th floor to the library to take out a book and a DVD. When we were leaving and checking out the book, the librarian said to Jake "Oh, YOU'RE Jake Whitenight? THE Jake Whitenight?" He said "Yes, I am da Jake Whitenight and my Mommy's best buddy." She then told him to wait right there "shugga" I have something here for you. She came back with a letter and handed it to him. The kid got mail! How exciting! I was so excited, HE was 1000 times more excited than me! I have read it, I don't even know how many times now but it doesn't matter he has it memorized. Every time I start to read it again by request, he recites it with me. Thank you so much Melinda and the Brady family, you really made his day. Since then, every good wish that he has gotten from you all on the computer, I read to him and he has been answering back on his own, I am just the typist. They are the bright spots to his day. Every time he gets a little bored he says "I have a great idea Mommy! Let's go see who is talking to Jakey on the ump-a-u-ter." Thanks all.
If anyone has a minute and would like to send him a card, here is the link:
http://www.chop.edu/ecards/ecards.cfm
I think the idea is genius for hospitals, and I think a very little known patient/ guest feature that's available.
Right now Jakey is sleeping soundly, allowing me time to update, shower and get something to eat. Special thanks to all of you at home who have been helping out with the Whitenight Boys at home by sending food and goodies for them. Thank you also to all of you who are helping out with watching the boys when you can so that Paul is able to get here to the hospital and go to work! We have found our strength in all of your support and we love you.
Three things I know today:
1. It takes a whole village to raise one child
2. You can find things that make you laugh out loud even in the toughest of times.
3. Just when I think I can't take it anymore, I'm about to be at my toughest, and I just don't see it
coming yet. :0)
Jake's update #2 Thursday November 19, 2009 3:56pm
Thursday, November 19, 2009 at 3:56pm | Edit Note | Delete
Ok, this is going to be a much different update than I thought I was going to be writing to everyone:
We went down to pre-op to get ready for surgery. I spoke to the anestesiologist,the nurse. They covered every detail with a fine tooth comb: congenital anomolies, past complications, future planned surgeries, probability of intubation difficulties and I was as comfortable as I was going to get with having your child's mastoid bone removed.
The surgeon came in to discuss the surgery, what would occur and what to expect with post op care. He started looking over Jake who was sleeping and really looked a bit puzzled and then started asking me to show him the area that was swollen when he came in, and how I thought it looked now in comparison to when we arrived. He excused himself and went to get the other doctor who would be present during the surgery.
After about 10 minutes of the two of them debating, they both walked back into Jake's room and told me that they felt that he had responded so well to the IV antibiotics in such a short time that they felt it would be the best decision for Jake to cancel the surgery and be aggressive with the antibiotics and try to save the mastoid bone. He went on to say that by looking at the CT scan he would agree that Jake was an excellent candidate for his planned Atresia surgery and did not want to jeopardize that in any way by performing a surgery in the same area when he thought there was a very good chance could be avoided all together.
For now: Jake will be on an IV antibiotic and pain medication. His progress is being closely monitored and must continue to improve. We don't know when we are coming home, I have heard some whispering talk of 2 to 3 days with my bionic Mommy ears but have not been given an "official" answer yet. Right now Jakey is sleeping after filling his belly with 3 apple juices and a carton of milk. Right before he fell asleep I asked him, "who loves you, Little Bit?" He answered "EVERYBODY!" Thanks everybody. Keep those prayers coming, they are working.
I sit here still shocked as I am writing this update. There are three things I know for sure right now:
1. Everything happens for a reason
2. Life is Good (no matter what)
3. God is great
Ok, this is going to be a much different update than I thought I was going to be writing to everyone:
We went down to pre-op to get ready for surgery. I spoke to the anestesiologist,the nurse. They covered every detail with a fine tooth comb: congenital anomolies, past complications, future planned surgeries, probability of intubation difficulties and I was as comfortable as I was going to get with having your child's mastoid bone removed.
The surgeon came in to discuss the surgery, what would occur and what to expect with post op care. He started looking over Jake who was sleeping and really looked a bit puzzled and then started asking me to show him the area that was swollen when he came in, and how I thought it looked now in comparison to when we arrived. He excused himself and went to get the other doctor who would be present during the surgery.
After about 10 minutes of the two of them debating, they both walked back into Jake's room and told me that they felt that he had responded so well to the IV antibiotics in such a short time that they felt it would be the best decision for Jake to cancel the surgery and be aggressive with the antibiotics and try to save the mastoid bone. He went on to say that by looking at the CT scan he would agree that Jake was an excellent candidate for his planned Atresia surgery and did not want to jeopardize that in any way by performing a surgery in the same area when he thought there was a very good chance could be avoided all together.
For now: Jake will be on an IV antibiotic and pain medication. His progress is being closely monitored and must continue to improve. We don't know when we are coming home, I have heard some whispering talk of 2 to 3 days with my bionic Mommy ears but have not been given an "official" answer yet. Right now Jakey is sleeping after filling his belly with 3 apple juices and a carton of milk. Right before he fell asleep I asked him, "who loves you, Little Bit?" He answered "EVERYBODY!" Thanks everybody. Keep those prayers coming, they are working.
I sit here still shocked as I am writing this update. There are three things I know for sure right now:
1. Everything happens for a reason
2. Life is Good (no matter what)
3. God is great
Jake's Update November 19, 2009
Thank you to everyone for your kindness, thoughts and prayers. We will continue to need them.
We have finally landed in a room at Childrens Hospital of Philadelphia. How we got here is a long story, but right now we sit in room 4405 on the wait list for surgery. Jake will undergo a mastoidectomy some time in the day. I will leave you to decide whether you want to google or not. http://en.wikipedia.org/wiki/Mastoiditis
Right now he is finally resting after begging for water, juice, milk, anything as he hasn't eaten or had anything to drink since Wednesday morning at about 9am because of the pain he had to open his mouth. He is being given morphine pain medication until the surgery to clean out the Mastoid infection.
The staff here is exceptional and I feel like I am in the presence of great people who are skilled in dealing with Jake's specialized care. I thank God that my inability to bend and my passion to be heard didn't let me shut down when I kept insisting day after day after day that there was STILL something else wrong. I thank Paulie for saying "follow your instincts, Baby. You're always right when it comes to this stuff." Complications from mastoid infection include meningitis and brain abscess so catching it in a timely matter was vital.
I will keep everyone posted on Jake's recovery and our anticipated return home. For everyone who has called or texted, thank you so much for the company and not letting me go to that "shut down" place and for making Philly feel close to home. Please pray. He hasn't gotten to where he is without the grace of God. Pray that the surgery is successful and leaves Jake in good health without any further complications.
We have finally landed in a room at Childrens Hospital of Philadelphia. How we got here is a long story, but right now we sit in room 4405 on the wait list for surgery. Jake will undergo a mastoidectomy some time in the day. I will leave you to decide whether you want to google or not. http://en.wikipedia.org/wiki/Mastoiditis
Right now he is finally resting after begging for water, juice, milk, anything as he hasn't eaten or had anything to drink since Wednesday morning at about 9am because of the pain he had to open his mouth. He is being given morphine pain medication until the surgery to clean out the Mastoid infection.
The staff here is exceptional and I feel like I am in the presence of great people who are skilled in dealing with Jake's specialized care. I thank God that my inability to bend and my passion to be heard didn't let me shut down when I kept insisting day after day after day that there was STILL something else wrong. I thank Paulie for saying "follow your instincts, Baby. You're always right when it comes to this stuff." Complications from mastoid infection include meningitis and brain abscess so catching it in a timely matter was vital.
I will keep everyone posted on Jake's recovery and our anticipated return home. For everyone who has called or texted, thank you so much for the company and not letting me go to that "shut down" place and for making Philly feel close to home. Please pray. He hasn't gotten to where he is without the grace of God. Pray that the surgery is successful and leaves Jake in good health without any further complications.
Sunday, March 29, 2009
THE DENNY MORE FUNDRAISER MARCH 28, 2009
Last night the Manville/Hillsborough Elks hosted a comedy show starring Denny More. For those of you who don't know who he is, keep your eyes peeled for his next show, this man is amazing! Denny is a comedian, magician, hypnotist that did some things that I would never believe if I hadn't seen them with my own eyes and known practically everyone in the audience who participated! I just can't stop thinking about this show. The night was a huge success with the Elks raising a total of $1700 for our son Jake. Paul and I were fortunate enough to have help help from our friends with Weston School's PTA, who succeeded in selling $300 in chances, totaling 6 tickets to 6 lucky winners for the night for "Jake's Escape" New SUV raffle set to go off on September 12th at The American Legion Post #304 here in Manville NJ.
This night for us was more than entertaining, more than a fundraiser. I want to extend a heartfelt thanks to everyone in attendance. You all made the night exactly what it was and that is a night to remember! Thank you all for the memories and good times. I just keep remembering more funny things that happened!
The Elks members who volunteered in the organization, set up and presentation of this event did a fantastic job! It is solely because of them that this night was possible. I can only hope that the evening was as enjoyable for the folks working the event as it was for those of us in attendance. It was really hard to sit still and not be constantly on the move helping out with the event, but it was made very clear to me when I first arrived for the night with Jake to meet the volunteers that this was my job for the evening. The night started with us being surrounded by the warmth and love of everyone there and ended with us all in hysterics!
We were blessed to meet many of you, who were friends of friends, coworkers of someone who knows someone else that knows us or someone in our family and then some! I have so many stories that came from this one night, it's incredible! We discovered that our friend's sister is good friends with our cousin's girlfriend! We also realized that a family that has been very helpful to us with several events for Jake is the same family that entrusted their own son's daily care when he was a child to my own mother. Small World. Getting smaller every day, and that's just two of the stories!
Coming into this great weekend we received a call from Jake's Endocrinologist and he doesn't want to see us back until the end of the summer with instructions to keep adding calories to Jakes diet whenever possible. In closing tonight I look to my left at our "Little Bit" sitting and eating a bowl of Haagen Dazs Chocolate ice cream, drinking his milk, and singing "We're on our way to Grandpa's Farm".
I'll say it again; life is good!
This night for us was more than entertaining, more than a fundraiser. I want to extend a heartfelt thanks to everyone in attendance. You all made the night exactly what it was and that is a night to remember! Thank you all for the memories and good times. I just keep remembering more funny things that happened!
The Elks members who volunteered in the organization, set up and presentation of this event did a fantastic job! It is solely because of them that this night was possible. I can only hope that the evening was as enjoyable for the folks working the event as it was for those of us in attendance. It was really hard to sit still and not be constantly on the move helping out with the event, but it was made very clear to me when I first arrived for the night with Jake to meet the volunteers that this was my job for the evening. The night started with us being surrounded by the warmth and love of everyone there and ended with us all in hysterics!
We were blessed to meet many of you, who were friends of friends, coworkers of someone who knows someone else that knows us or someone in our family and then some! I have so many stories that came from this one night, it's incredible! We discovered that our friend's sister is good friends with our cousin's girlfriend! We also realized that a family that has been very helpful to us with several events for Jake is the same family that entrusted their own son's daily care when he was a child to my own mother. Small World. Getting smaller every day, and that's just two of the stories!
Coming into this great weekend we received a call from Jake's Endocrinologist and he doesn't want to see us back until the end of the summer with instructions to keep adding calories to Jakes diet whenever possible. In closing tonight I look to my left at our "Little Bit" sitting and eating a bowl of Haagen Dazs Chocolate ice cream, drinking his milk, and singing "We're on our way to Grandpa's Farm".
I'll say it again; life is good!
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