Jeremiah, JD and I had an appointment with the Infectious Diseases Specialist Friday morning. We went over the test results and then discussed treatment options/possibilites. We now know which strand of the bacteria JD has and we FINALLY have a plan as to how to combat it!
Option 1: One of the common options of treatment is to just "not treat" and let the body take care of it. The ID doctor said that due to the mass in JD's throat he doesn't even want to consider this option. The mass could return and we would have no idea until it was too late. I agreed that we shouldn't go with this option. :)
Option 2: The alternate method of treatment is to combine 2-3 antibiotics and take them from 6 weeks - 24 months (depending on the situation). Patients who can't have surgery have to be on the meds longer. Since JD was able to have surgery to remove the bulk of the masses he would have to be on meds for 12 weeks. So, starting next week JD will start a 12-week antibiotic regimen of two antibiotics. After the 12 weeks is up we will go back in for another consult to see how he is doing. We are waiting for one final test that will determine whether he has to take a third med or not. We're praying that two meds will be enough!
We still have a ways to go before this is over but at least we are finally getting some answers and we have a plan to treat it and that is a huge relief for us! Your continued prayers and encouragement are such a blessing to us. I've included a few specific prayers requests so you are aware of our needs and can intercede for us.
- Positive reaction to the meds: The better JD reacts to the meds the less likely he'll have to have a second round (another 12 weeks)
- Minimal side effects: JD still isn't back to normal in his eating/sleeping habits due to all the meds he's been on/off of. Pray that the new meds don't mess him up even more
- Provision: We have been blessed by financial and food gifts from a couple different friends and family members. We are humbled and so very grateful for these blessings! We are praying that GOD continues to provide for the needs we have due to all of the medical bills, etc
Thank you again for your continued prayers. We couldn't have made it this far without your prayers and support. Please continue to intercede on our behalf! WE know that GOD hears the prayers of HIS children! Thank you!!
In His Hands,
Jeremiah, Crista, & JD
Monday, March 15, 2010
Thursday, March 4, 2010
Preliminary Test Results - On the Right Road
Can I say I LOVE our pediatrician! He is so thorough and just amazes me! He's been so awesome through all of this and I can't imagine having any other doctor!!! The ENT specialist told me Tuesday that there are signs pointing to Cat Scratch Disease. I thought this was odd because JD has had at least two tests SPECIFICALLY testing for this. Also, I've thought it was odd because I don't even know someone who owns a cat...hrmmm! When I asked the specialist about all of this he told me that the specifics of it weren't his specialty and I need to talk to the ID doctor again. He said he would call over there and the ID would call me back on Wednesday.
This morning (Thursday) the ENT specialist's assistant called to see if I'd heard from ID. I said I hadn't. She said she would call ID and then call me right back. That was at 10am...it's 1:50p now. So much for calling right back! It's more of the same for them. I was at their office on Tuesday for about an hour and a half and really got nothing accomplished. The doctor was only in the room for about 3-4 minutes. They had no real results yet so I'm not sure why I even had teh appointment.
However, my pediatrician called around 1:30p to give me the test results that had come in. JD does in fact have mycobacteria. He does NOT have TB or Cat Scratch. He said he saw where they were notating that as a possibility but said that it was negative. He said they couldn't figure it out from the original tests so they kind of just guessed! (that makes me feel great!) However, my pediatrician is on the ball and followed up on these tests and has a game plan!
GOD is great and amazes me that HE is working in all of these little things. They still have to wait for results to come back as to which mycobacteria he has (2-6 weeks) and then sensitivity tests for how to treat it (2+ more weeks) but at least we are on the right path. Right now I'm just thanking GOD for the small things AND thanking Dr. Holbrook for being amazing!
Please keep praying for us!
This morning (Thursday) the ENT specialist's assistant called to see if I'd heard from ID. I said I hadn't. She said she would call ID and then call me right back. That was at 10am...it's 1:50p now. So much for calling right back! It's more of the same for them. I was at their office on Tuesday for about an hour and a half and really got nothing accomplished. The doctor was only in the room for about 3-4 minutes. They had no real results yet so I'm not sure why I even had teh appointment.
However, my pediatrician called around 1:30p to give me the test results that had come in. JD does in fact have mycobacteria. He does NOT have TB or Cat Scratch. He said he saw where they were notating that as a possibility but said that it was negative. He said they couldn't figure it out from the original tests so they kind of just guessed! (that makes me feel great!) However, my pediatrician is on the ball and followed up on these tests and has a game plan!
GOD is great and amazes me that HE is working in all of these little things. They still have to wait for results to come back as to which mycobacteria he has (2-6 weeks) and then sensitivity tests for how to treat it (2+ more weeks) but at least we are on the right path. Right now I'm just thanking GOD for the small things AND thanking Dr. Holbrook for being amazing!
Please keep praying for us!
Sunday, February 28, 2010
Hospital Time
Well, what a weekend this has been! I've been meaning to get this up all weekend but just haven't had/taken the time.
We got up around 4:00a on Friday morning to get ready for the hospital. We were out of the house by 5:00a and at the hospital by 5:15a. We got checked in and were taken to our little curtain area of the ASU (Ambulatory Surgery Unit). The nurse started taking JD's vitals and getting us ready for Pre-Op. We were in the ASU until about 6:20a or so and they moved us to Pre-Op. They said that JD was a "Top Priority Patient" so he was at the head of all the patients. JD was so quiet and just taking it in. He isn't used to being woke up at 5:00a by any means and was definitely NOT about to get used to it.
In Pre-Op we constantly had nurses and doctors in and out asking questions, etc. The anesthesiologist (Josh Schwartz - you FL people will get the significance of that name) came in and explained the risks of anesthesia. Then the nurse came in and asked a bunch of health history questions. We then met the anesthesia nurse, and spoke with the ENT specialist/surgeon. They came and gave JD a medicine to help with the sedation process. That medicine made my child SO drunk! It was hillarious! People kept walking past us and laughing at JD. It was so funny. The anesthesiologist's assistant then had us sign consent and then wrapped a warm blanket around JD and carried him down the hall to the OR. Miah and I were then told to head back to the ASU waiting room and we would be paged when the surgery was over. It was hard watching JD be carried away like that, but in a way it was nice because we didn't have to see him being hooked up to all the monitors, IVs, etc.
It was 7:30a when they took JD back to the OR and we were told the surgery would last between 1-1 1/2 hours. Miah and I joined hands and walked back to the ASU waiting room. It was the longest 70 minutes if my life. We went to the cafeteria for breakfast just to try and pass the time and then went back to the waiting room again. When that pager went off we walked to the desk and were directed to the Consult Room. After a few minutes the surgeon came in and gave us his report of the surgery. He said that everything went perfectly and he was thrilled with the result. He said he was able to remove the majority of the contents of the two masses on the left side of JD's neck and the one in the back of his throat. He made an incision on the right side to look at that mass but it was too deep for him to get any results. The surgeon had to place a drain in each of the masses on the left side. He finished his report and we were directed back to the waiting room.
A few minutes after going back to the waiting room the pager went off again. This time we were taken by a nurse to the PACU (Post Anesthesia Care Unit) to see JD. PACU was on the other side of the hospital so it took several minutes to get there from the ASU. I had tried to prepare myself for just how bad JD was going to look. When we walked into his curtain ("Room" 15) of the PACU a nurse was holding him. They said he had JUST fallen asleep. As soon as he heard our voices he jerked awake and started screaming. He sounded horrible with all the "gunk" in his throat. He immediately started grasping for us. I held him first. He looked awful and was SO upset. He just kept screaming. When I saw what his neck looked like I just started crying. It was SO much worse than anything that I had pictured or imagined. Then it started getting to me. I had only had 3 hours of sleep, pretty much no food, and a LOT of nerves. It all combined to make me totally unprepared for what I saw. JD was reaching for Daddy and after I handed JD to Miah I began getting very flushed, my head started spinning and I got so lightheaded. I've never felt so close to passing out and it couldn't have hit at a worse time. I didn't pass out though :) I may have felt like I was going to but I didn't. I've never had a weak stomach for that kind of thing but this time it was MY BABY.
After a few minutes I pulled myself together and walked to the cafeteria to get a drink. I then went to the ASU waiting room to get Miah's parents who were waiting to see JD. His parents, aunt, and uncle were waiting for us. I got to them and started tearing up...again! We started walking toward the PACU and I tried to prep them for what they were about to see. Only two people were allowed in JD's "room" at a time so we took turns going back to see him. After everybody had a turn with him Miah and I went back with him again and held him until PACU finished getting his room arranged. Around 10:00a or so the nurses wheeled us to our room in the Children's Hospital ward. JD was finally calming down and resting a bit. We got in our room and got settled. Within two hours we had three different doctors and two nurses who were in and out asking questions, hooking up IVs, etc.
Dr. Puhr from the Pediatric Unit at the hospital came by to check him out. She asked several routine questions then asked about JD's breathing. I told her it had been fine. She said, "Well, i'm asking because they told you about his throat, right?" I told her I didn't know what she was talking about. She said that the mass in his throat was a lot larger than they had originally thought. Between that and the three masses on his neck she said the swelling was constricting his airway. (It's a good thing that they told me this AFTER the surgery or I would have been even more nervous.) I had no idea! The "what ifs" started flooding my mind! I was so thankful that the two masses on the left of his neck had been as obvious as they had, otherwise they may not have done the CT Scan and found the mass in his throat.
The Infectious Disease doctors came to examine JD and ask a bunch of questions. They said that JD has NOTHING that is contagious and it may take quite a bit of time for them to go away completely. It will take 2-6 weeks before the cultures come back and then the results have to be sent to the lab for Sensitivity tests. Each mycobacteria can only be treated with certain meds. If we treat the infection with the wrong meds it will build up a resistance and make it harder to treat. It was a lot of info to process in a short amount of time - especially when dealing with JD after surgery. He was so miserable feeling but did awesome.
We had a phenomenal nurse -- she actually goes to our church which made it even nicer. Anything we needed - she took care of. She was great with JD and really made a difficult situation a bit easier.
JD had a few visitors - Aunt Cheyenne, Uncle Jay, Jack and Cody, Mrs. Sarah, Mrs. Hangosky, and Mrs. Tiffany - and he enjoyed the company too! He slept most of the afternoon and was quite lively all night. He did fabulous with eating/drinking too. He was only allowed to have fluids and he drank over 40 oz of apple juice in about 10-12 hours, 6 oz of beef broth, and 4 oz of chicken broth. The nurses said most kids don't eat quite that much in the first day or so - but JD isn't most kids! ;) He ended his day with an orange slushie and some ice cream. (No, he's not at all spoiled!)
Friday night didn't provide Miah and I with much sleep. We were both sleeping in hospital chairs and slept horribly. JD seemed to sleep alright. On Saturday morning JD was wide awake by 7:00a. We had several doctors and nurses come and check JD out again before discharge. Then around 9:00a our pediatrician came by to see JD. He wasn't on call or working but wanted to check on JD. When he got there JD was wanting to take a ride in a toy car that he had been playing with from the hospital. (They had a whole room full of toys for children who were staying in the childrens' ward. It was awesome!) Miah and I had already been pushing JD in the car for quite some time and we were tired of it. Dr. H said "Hey JD - I'll push ya!" and he did. He pushed JD all around the nurses station and then back to our room. Afterwards he asked if we'd seen the ENT doctor yet. He was the one who was supposed to discharge us. When I told him we hadn't he said, "Come on JD. Come with me and we'll go find that doctor." About 20 minutes later he came back with JD and our discharge papers! What doctor does that?? and on his day off???
By 10:30a JD had been given his last dose of hospital antibiotics/pain meds, we were discharged, and on our way home. We stopped at the pharmacy and got his precsriptions then got home around 11:30a. It had been a long 30+ hours but the worst of it was OVER...finally!
JD still has a long way to go. He had an allergic reaction to his pain meds so can't take anything at this point except Motrin. That's been hard on him! We know he's in pain and there's not much we can do about it. :( Yesterday both of his drains fell out - they weren't supposed to be taken out until Tuesday. Never a dull moment...
It's been an eventful few days but our little guy is a trooper. We are exhausted and ready for a calmer weekend. :) We still have concerns and are trying to have faith. GOD is great and we trust that. We have some specifics that we want to request prayers for:
1. Healing for JD
- It's going to be a long process and it will require a lot of patience as we wait for answers, test results, etc. He's in pain and we pray that subsides soon.
2. Refreshment for us
- Miah and I are EXHAUSTED! We both ran on little sleep all weekend and are drained - emotionally and physically
3. Provision
- We are still praying for some needs to be met. This medical situation was quite unexpected and we are praying that GOD will provide.
We can't thank you all enough for the prayers. That is what got us through all of this. Please continue to pray. I know you all have your own lives but please keep us in your thoughts as we wait for answers. We are so grateful for you.
In His Hands,
Jeremiah, Crista, & JD
We got up around 4:00a on Friday morning to get ready for the hospital. We were out of the house by 5:00a and at the hospital by 5:15a. We got checked in and were taken to our little curtain area of the ASU (Ambulatory Surgery Unit). The nurse started taking JD's vitals and getting us ready for Pre-Op. We were in the ASU until about 6:20a or so and they moved us to Pre-Op. They said that JD was a "Top Priority Patient" so he was at the head of all the patients. JD was so quiet and just taking it in. He isn't used to being woke up at 5:00a by any means and was definitely NOT about to get used to it.
In Pre-Op we constantly had nurses and doctors in and out asking questions, etc. The anesthesiologist (Josh Schwartz - you FL people will get the significance of that name) came in and explained the risks of anesthesia. Then the nurse came in and asked a bunch of health history questions. We then met the anesthesia nurse, and spoke with the ENT specialist/surgeon. They came and gave JD a medicine to help with the sedation process. That medicine made my child SO drunk! It was hillarious! People kept walking past us and laughing at JD. It was so funny. The anesthesiologist's assistant then had us sign consent and then wrapped a warm blanket around JD and carried him down the hall to the OR. Miah and I were then told to head back to the ASU waiting room and we would be paged when the surgery was over. It was hard watching JD be carried away like that, but in a way it was nice because we didn't have to see him being hooked up to all the monitors, IVs, etc.
It was 7:30a when they took JD back to the OR and we were told the surgery would last between 1-1 1/2 hours. Miah and I joined hands and walked back to the ASU waiting room. It was the longest 70 minutes if my life. We went to the cafeteria for breakfast just to try and pass the time and then went back to the waiting room again. When that pager went off we walked to the desk and were directed to the Consult Room. After a few minutes the surgeon came in and gave us his report of the surgery. He said that everything went perfectly and he was thrilled with the result. He said he was able to remove the majority of the contents of the two masses on the left side of JD's neck and the one in the back of his throat. He made an incision on the right side to look at that mass but it was too deep for him to get any results. The surgeon had to place a drain in each of the masses on the left side. He finished his report and we were directed back to the waiting room.
A few minutes after going back to the waiting room the pager went off again. This time we were taken by a nurse to the PACU (Post Anesthesia Care Unit) to see JD. PACU was on the other side of the hospital so it took several minutes to get there from the ASU. I had tried to prepare myself for just how bad JD was going to look. When we walked into his curtain ("Room" 15) of the PACU a nurse was holding him. They said he had JUST fallen asleep. As soon as he heard our voices he jerked awake and started screaming. He sounded horrible with all the "gunk" in his throat. He immediately started grasping for us. I held him first. He looked awful and was SO upset. He just kept screaming. When I saw what his neck looked like I just started crying. It was SO much worse than anything that I had pictured or imagined. Then it started getting to me. I had only had 3 hours of sleep, pretty much no food, and a LOT of nerves. It all combined to make me totally unprepared for what I saw. JD was reaching for Daddy and after I handed JD to Miah I began getting very flushed, my head started spinning and I got so lightheaded. I've never felt so close to passing out and it couldn't have hit at a worse time. I didn't pass out though :) I may have felt like I was going to but I didn't. I've never had a weak stomach for that kind of thing but this time it was MY BABY.
After a few minutes I pulled myself together and walked to the cafeteria to get a drink. I then went to the ASU waiting room to get Miah's parents who were waiting to see JD. His parents, aunt, and uncle were waiting for us. I got to them and started tearing up...again! We started walking toward the PACU and I tried to prep them for what they were about to see. Only two people were allowed in JD's "room" at a time so we took turns going back to see him. After everybody had a turn with him Miah and I went back with him again and held him until PACU finished getting his room arranged. Around 10:00a or so the nurses wheeled us to our room in the Children's Hospital ward. JD was finally calming down and resting a bit. We got in our room and got settled. Within two hours we had three different doctors and two nurses who were in and out asking questions, hooking up IVs, etc.
Dr. Puhr from the Pediatric Unit at the hospital came by to check him out. She asked several routine questions then asked about JD's breathing. I told her it had been fine. She said, "Well, i'm asking because they told you about his throat, right?" I told her I didn't know what she was talking about. She said that the mass in his throat was a lot larger than they had originally thought. Between that and the three masses on his neck she said the swelling was constricting his airway. (It's a good thing that they told me this AFTER the surgery or I would have been even more nervous.) I had no idea! The "what ifs" started flooding my mind! I was so thankful that the two masses on the left of his neck had been as obvious as they had, otherwise they may not have done the CT Scan and found the mass in his throat.
The Infectious Disease doctors came to examine JD and ask a bunch of questions. They said that JD has NOTHING that is contagious and it may take quite a bit of time for them to go away completely. It will take 2-6 weeks before the cultures come back and then the results have to be sent to the lab for Sensitivity tests. Each mycobacteria can only be treated with certain meds. If we treat the infection with the wrong meds it will build up a resistance and make it harder to treat. It was a lot of info to process in a short amount of time - especially when dealing with JD after surgery. He was so miserable feeling but did awesome.
We had a phenomenal nurse -- she actually goes to our church which made it even nicer. Anything we needed - she took care of. She was great with JD and really made a difficult situation a bit easier.
JD had a few visitors - Aunt Cheyenne, Uncle Jay, Jack and Cody, Mrs. Sarah, Mrs. Hangosky, and Mrs. Tiffany - and he enjoyed the company too! He slept most of the afternoon and was quite lively all night. He did fabulous with eating/drinking too. He was only allowed to have fluids and he drank over 40 oz of apple juice in about 10-12 hours, 6 oz of beef broth, and 4 oz of chicken broth. The nurses said most kids don't eat quite that much in the first day or so - but JD isn't most kids! ;) He ended his day with an orange slushie and some ice cream. (No, he's not at all spoiled!)
Friday night didn't provide Miah and I with much sleep. We were both sleeping in hospital chairs and slept horribly. JD seemed to sleep alright. On Saturday morning JD was wide awake by 7:00a. We had several doctors and nurses come and check JD out again before discharge. Then around 9:00a our pediatrician came by to see JD. He wasn't on call or working but wanted to check on JD. When he got there JD was wanting to take a ride in a toy car that he had been playing with from the hospital. (They had a whole room full of toys for children who were staying in the childrens' ward. It was awesome!) Miah and I had already been pushing JD in the car for quite some time and we were tired of it. Dr. H said "Hey JD - I'll push ya!" and he did. He pushed JD all around the nurses station and then back to our room. Afterwards he asked if we'd seen the ENT doctor yet. He was the one who was supposed to discharge us. When I told him we hadn't he said, "Come on JD. Come with me and we'll go find that doctor." About 20 minutes later he came back with JD and our discharge papers! What doctor does that?? and on his day off???
By 10:30a JD had been given his last dose of hospital antibiotics/pain meds, we were discharged, and on our way home. We stopped at the pharmacy and got his precsriptions then got home around 11:30a. It had been a long 30+ hours but the worst of it was OVER...finally!
JD still has a long way to go. He had an allergic reaction to his pain meds so can't take anything at this point except Motrin. That's been hard on him! We know he's in pain and there's not much we can do about it. :( Yesterday both of his drains fell out - they weren't supposed to be taken out until Tuesday. Never a dull moment...
It's been an eventful few days but our little guy is a trooper. We are exhausted and ready for a calmer weekend. :) We still have concerns and are trying to have faith. GOD is great and we trust that. We have some specifics that we want to request prayers for:
1. Healing for JD
- It's going to be a long process and it will require a lot of patience as we wait for answers, test results, etc. He's in pain and we pray that subsides soon.
2. Refreshment for us
- Miah and I are EXHAUSTED! We both ran on little sleep all weekend and are drained - emotionally and physically
3. Provision
- We are still praying for some needs to be met. This medical situation was quite unexpected and we are praying that GOD will provide.
We can't thank you all enough for the prayers. That is what got us through all of this. Please continue to pray. I know you all have your own lives but please keep us in your thoughts as we wait for answers. We are so grateful for you.
In His Hands,
Jeremiah, Crista, & JD
Thursday, February 25, 2010
Update 3.0
Sorry that this so late - it's been a long day!
Yesterday afternoon I got a call from the ENT specialist's office advising me that I had an appointment at 11:00a. They said I had to come one and fill out paperwork for the surgery - but it had to be done in office BEFORE the surgery. I was supposed to be going to a school with my boss today so I asked if it was at all flexible. They said it had to be at 11:00. I told them I would work something out and we'd be there. Right after I hung up the Ped Sedation Coordinator @ the hospital called me and said they couldn't schedule the CT and surgery on the same day so we had to come to the hospital for the CT today as well. They said the only opening they had was at 8:00 a so I had to get there at 7 to get started. I talked to my boss and he said he would handle the delivery at the school without me. I felt awful for having to take off of work one more time but he was BEYOND understanding....again.
My sister-in-law and I headed to the hospital this morning for the CT Scan. Jeremiah wasn't able to get off work again to go so my friend Tiffany offered to watch Cheyenne's kids so she could go with me. (Yes, Tiffany & Cheyenne are amazing!! I mean, Tiffany took on two more kids - and early in the morning too; but, Cheyenne got up and got her kids out the door super-early just so she could be with me!!! I'm beyond blessed.)
JD did great again! The sedation team got him hooked up to the IV and we got him down to Radiology and got him set for the CT Scan. He was only out for about 10 minutes or so and the Child Life Specialist came and got us. After a few minutes JD started waking up, we got him back in his PJs and we were off!
We got breakfast and JD and I headed back to work. We got to the ENT office at 2:00p (yes - I was late) and were taken back to a room almost immediately. JD had fallen asleep on the way to the ENT office so when we got there I had to try and keep him asleep. The poor kid was so messed up from the sedation meds still! I carried him from the car to the office then the exam room and he stayed completely knocked out. The doctor came in to examine him a final time and siad that he's pretty sure the masses are what is called Atypical Mycobacterial Infection. The doctor's definition is "A very nice, nice, nice cousin to Tuberculosis". (I'm sure your reaction was about the same as mine! *What in the world??!?*) [I Googled it and got this:: Atypical mycobacterial infections are infections caused by several types of mycobacteria similar to the germ that causes tuberculosis. M. avium-intracellulare, M. kansasii, and M. scrofulaceum may cause inflammation of the lymph nodes in otherwise healthy young children.] It's something that can be found in many places in the environment: tap water, fresh and ocean water, milk, bird droppings, soil, and house dust. The good thing is that there is no evidence that it's contagious - YAY!!
So - the remedy! These are not solid enough for them to open him up and cut them out. Instead they have to cut the spots open and scrape the liquid/tissue out. The doctor then showed me the CT Scan images and had some not-so-good news. There's not just two spots - there are FOUR! I wasn't ready for that (Of course, I haven't been ready for much of this have I?!) He has the two on the left that we have known about, but he also has one on the right and then one ... on the back of his throat. (Not ready for that either!) So - they have to scrape the two on the left, the one on the back of his throat and attempt to get the one on the right. They said it may be too deep that they can't get to it but they will at least try. The body is supposed to take care of this itself but for some reason JD's didn't. They said that it may come back at some point but hopefully, by getting rid of the bulk of the probelm the body will be able to fight off the rest of it. This is something that doesn't react well to meds so we will see. For now, we just have to hope that they can get in and get done the job they need to!
On top of all this "wonderful" good news they doctor said that he is concerned about the swelling in JD's ears. His sinuses are completely blocked and his ears are filled with fluid. The ENT doctor said that the surgery will cause MORE swelling in his throat and ears and he is worried about the pressure. He said that the swelling can cause hearing damage or other damage to his ears. To avoid this he is going to put tubes in JD's ears as well. (I think this was the biggest unexpected news for me.) I wasn't thrilled about the news but understand why the doctor is choosing to do it. Our appointment at 1:45p didn't end until 5:30p. I then had to go back to work and make up some hours. Jeremiah and his dad had to do some work at my bosses house that they didn't finish until after 8:00p. We got home around 9:00p and are trying to get prepped for tomorrow!
SOOOOO.....tomorrow we have to be at the hospital at 5:15a and surgery will start at 7:30a. We are not sure how long it will take at this point. We may have to stay overnight for them to monitor JD - that depends on how well he does during/after the surgery.
I cannot tell you at this point how much we are coveting your prayers. Tomorrow is going to be such a long, hard day for us in so many ways. Pray for us, JD, the doctors - all of it! This is going to be a huge ordeal for all of us! Thank you so very much for your love and support! It means so much to us.
In His Hands-
Jeremiah, Crista, and JD
Yesterday afternoon I got a call from the ENT specialist's office advising me that I had an appointment at 11:00a. They said I had to come one and fill out paperwork for the surgery - but it had to be done in office BEFORE the surgery. I was supposed to be going to a school with my boss today so I asked if it was at all flexible. They said it had to be at 11:00. I told them I would work something out and we'd be there. Right after I hung up the Ped Sedation Coordinator @ the hospital called me and said they couldn't schedule the CT and surgery on the same day so we had to come to the hospital for the CT today as well. They said the only opening they had was at 8:00 a so I had to get there at 7 to get started. I talked to my boss and he said he would handle the delivery at the school without me. I felt awful for having to take off of work one more time but he was BEYOND understanding....again.
My sister-in-law and I headed to the hospital this morning for the CT Scan. Jeremiah wasn't able to get off work again to go so my friend Tiffany offered to watch Cheyenne's kids so she could go with me. (Yes, Tiffany & Cheyenne are amazing!! I mean, Tiffany took on two more kids - and early in the morning too; but, Cheyenne got up and got her kids out the door super-early just so she could be with me!!! I'm beyond blessed.)
JD did great again! The sedation team got him hooked up to the IV and we got him down to Radiology and got him set for the CT Scan. He was only out for about 10 minutes or so and the Child Life Specialist came and got us. After a few minutes JD started waking up, we got him back in his PJs and we were off!
We got breakfast and JD and I headed back to work. We got to the ENT office at 2:00p (yes - I was late) and were taken back to a room almost immediately. JD had fallen asleep on the way to the ENT office so when we got there I had to try and keep him asleep. The poor kid was so messed up from the sedation meds still! I carried him from the car to the office then the exam room and he stayed completely knocked out. The doctor came in to examine him a final time and siad that he's pretty sure the masses are what is called Atypical Mycobacterial Infection. The doctor's definition is "A very nice, nice, nice cousin to Tuberculosis". (I'm sure your reaction was about the same as mine! *What in the world??!?*) [I Googled it and got this:: Atypical mycobacterial infections are infections caused by several types of mycobacteria similar to the germ that causes tuberculosis. M. avium-intracellulare, M. kansasii, and M. scrofulaceum may cause inflammation of the lymph nodes in otherwise healthy young children.] It's something that can be found in many places in the environment: tap water, fresh and ocean water, milk, bird droppings, soil, and house dust. The good thing is that there is no evidence that it's contagious - YAY!!
So - the remedy! These are not solid enough for them to open him up and cut them out. Instead they have to cut the spots open and scrape the liquid/tissue out. The doctor then showed me the CT Scan images and had some not-so-good news. There's not just two spots - there are FOUR! I wasn't ready for that (Of course, I haven't been ready for much of this have I?!) He has the two on the left that we have known about, but he also has one on the right and then one ... on the back of his throat. (Not ready for that either!) So - they have to scrape the two on the left, the one on the back of his throat and attempt to get the one on the right. They said it may be too deep that they can't get to it but they will at least try. The body is supposed to take care of this itself but for some reason JD's didn't. They said that it may come back at some point but hopefully, by getting rid of the bulk of the probelm the body will be able to fight off the rest of it. This is something that doesn't react well to meds so we will see. For now, we just have to hope that they can get in and get done the job they need to!
On top of all this "wonderful" good news they doctor said that he is concerned about the swelling in JD's ears. His sinuses are completely blocked and his ears are filled with fluid. The ENT doctor said that the surgery will cause MORE swelling in his throat and ears and he is worried about the pressure. He said that the swelling can cause hearing damage or other damage to his ears. To avoid this he is going to put tubes in JD's ears as well. (I think this was the biggest unexpected news for me.) I wasn't thrilled about the news but understand why the doctor is choosing to do it. Our appointment at 1:45p didn't end until 5:30p. I then had to go back to work and make up some hours. Jeremiah and his dad had to do some work at my bosses house that they didn't finish until after 8:00p. We got home around 9:00p and are trying to get prepped for tomorrow!
SOOOOO.....tomorrow we have to be at the hospital at 5:15a and surgery will start at 7:30a. We are not sure how long it will take at this point. We may have to stay overnight for them to monitor JD - that depends on how well he does during/after the surgery.
I cannot tell you at this point how much we are coveting your prayers. Tomorrow is going to be such a long, hard day for us in so many ways. Pray for us, JD, the doctors - all of it! This is going to be a huge ordeal for all of us! Thank you so very much for your love and support! It means so much to us.
In His Hands-
Jeremiah, Crista, and JD
Wednesday, February 24, 2010
Breaking Point
There comes a point in the face of trials where everyone has a breaking point. Some last longer than others. Some make it through several trials without hitting that point. Some don't make it far at all before hitting it. Well, I finally hit mine.
I was doing "good" through all that's been going on with JD. I was so proud of myself. Everytime I took JD to the doctor I never panicked. I was concerned for him and with each diagnosis that concern grew. I never got upset, teared up, cried, or anything - I was being a "rock". I would talk to my parents on the phone and update them after each appointment and they kept saying "You're handling this so well; I'm really proud of you!" I was like - well, what's not to handle. It's all going to be okay!! With each test, diagnosis, and bill I kept maintaining. I was frustrated with how it was going but that was it.
Then last week I hit my breaking point. On top of the enormous medical bills we have started getting from this I got a call regarding a bill. Somehow in the midst of all that has been going on with JD I'd forgotten to make the payment and now we were being faced with huge penalties and little/no mercy. That was my breaking point! I couldn't function. I sat at my desk at work and cried like I hadn't in YEARS! Jeremiah was at a job site, my parents are out of state - I had to handle this alone. I was forced to throw my hands up to GOD and allow HIM to take over. As children of GOD there comes a point where we have to move aside and allow GOD to work. A point where we simply have to let go of the reins.
I sobbed, prayed, and sobbed some more. I had to say out loud "GOD I can't do this anymore! I can't handle anymore." I know everybody reading this has been there. You've all had those moments. If you haven't - just wait - it's coming. I hit my breaking point and now just simply feel...broken. It is so hard to see my not-quite-two-year old son going through all of this and I can't do ANYTHING! I'm a fixer. When a relationship is hurting I want to fix it; when my son hurts I want him to come to Mommy; I have to fix and control it - and this time I am being forced to sit on the sidelines. There is so much about what we are going through with JD that makes it a difficult situation - medically, emotionally, financially - and it just keeps getting harder.
I know that it's all "going to work out" (like my husband ALWAYS tells me) but I'm literal. I have to see it on paper. I have to know how it will work out, how it's going to be fixed. I know it's a faith issue. It's easy to say you have faith but when faced with trials words become useless. That's when faith goes from being just a word and becomes an action. GOD has really been teaching me and working on me in this area. And that's where I am right now.
- I BELIEVE, and have faith, that GOD is going to take care of my son during these procedures, surgery, etc.
- I BELIEVE, and have faith, that GOD is going to heal JD of all of this
- I BELIEVE, and have faith, that GOD will provide for the medical expenses we are being faced with
- I BELIEVE, and have faith, that GOD is going to use JD this situation for HIS glory!
There are so many unknowns right now for me. Yes, I feel broken, frustrated, drained - physically and emotionally, and stretched - but I know that GOD has a plan. I know HE is going to use JD in unbelievable ways! HE's already using JD to draw me closer to HIM through all of this. I had gotten to the point where I was "handling" things on my own with little dependance on GOD. My how that has changed in the last month! Now I can't even read the notes, emails, and messages being sent to us without crying.
Hopefully, today I will have another update regarding the scheduling of JD's CT & surgery. Please continue to pray for Jeremiah, JD, and I through all of this. These are hard, uncertain times for us. Satan is trying to discourage and break us down. We covet your prayers as a hedge of protection. Pray that GOD continues to work in and through us and that HE is glorified with the outcome!
I don't even know many of you who are members of JD's Facebook group, but I can't thank you enough for praying for him. GOD has been good to us and we are so blessed to have the prayers of so many going up for our son. It's amazing to see how many people JD's already touched. He's an amazing kid! GOD's got big things in store for him! Your support and prayers are such an encouragement to us throughout all of this and we cannot thank you enough!
In His Hands,
Jeremiah, Crista, and JD
I was doing "good" through all that's been going on with JD. I was so proud of myself. Everytime I took JD to the doctor I never panicked. I was concerned for him and with each diagnosis that concern grew. I never got upset, teared up, cried, or anything - I was being a "rock". I would talk to my parents on the phone and update them after each appointment and they kept saying "You're handling this so well; I'm really proud of you!" I was like - well, what's not to handle. It's all going to be okay!! With each test, diagnosis, and bill I kept maintaining. I was frustrated with how it was going but that was it.
Then last week I hit my breaking point. On top of the enormous medical bills we have started getting from this I got a call regarding a bill. Somehow in the midst of all that has been going on with JD I'd forgotten to make the payment and now we were being faced with huge penalties and little/no mercy. That was my breaking point! I couldn't function. I sat at my desk at work and cried like I hadn't in YEARS! Jeremiah was at a job site, my parents are out of state - I had to handle this alone. I was forced to throw my hands up to GOD and allow HIM to take over. As children of GOD there comes a point where we have to move aside and allow GOD to work. A point where we simply have to let go of the reins.
I sobbed, prayed, and sobbed some more. I had to say out loud "GOD I can't do this anymore! I can't handle anymore." I know everybody reading this has been there. You've all had those moments. If you haven't - just wait - it's coming. I hit my breaking point and now just simply feel...broken. It is so hard to see my not-quite-two-year old son going through all of this and I can't do ANYTHING! I'm a fixer. When a relationship is hurting I want to fix it; when my son hurts I want him to come to Mommy; I have to fix and control it - and this time I am being forced to sit on the sidelines. There is so much about what we are going through with JD that makes it a difficult situation - medically, emotionally, financially - and it just keeps getting harder.
I know that it's all "going to work out" (like my husband ALWAYS tells me) but I'm literal. I have to see it on paper. I have to know how it will work out, how it's going to be fixed. I know it's a faith issue. It's easy to say you have faith but when faced with trials words become useless. That's when faith goes from being just a word and becomes an action. GOD has really been teaching me and working on me in this area. And that's where I am right now.
- I BELIEVE, and have faith, that GOD is going to take care of my son during these procedures, surgery, etc.
- I BELIEVE, and have faith, that GOD is going to heal JD of all of this
- I BELIEVE, and have faith, that GOD will provide for the medical expenses we are being faced with
- I BELIEVE, and have faith, that GOD is going to use JD this situation for HIS glory!
There are so many unknowns right now for me. Yes, I feel broken, frustrated, drained - physically and emotionally, and stretched - but I know that GOD has a plan. I know HE is going to use JD in unbelievable ways! HE's already using JD to draw me closer to HIM through all of this. I had gotten to the point where I was "handling" things on my own with little dependance on GOD. My how that has changed in the last month! Now I can't even read the notes, emails, and messages being sent to us without crying.
Hopefully, today I will have another update regarding the scheduling of JD's CT & surgery. Please continue to pray for Jeremiah, JD, and I through all of this. These are hard, uncertain times for us. Satan is trying to discourage and break us down. We covet your prayers as a hedge of protection. Pray that GOD continues to work in and through us and that HE is glorified with the outcome!
I don't even know many of you who are members of JD's Facebook group, but I can't thank you enough for praying for him. GOD has been good to us and we are so blessed to have the prayers of so many going up for our son. It's amazing to see how many people JD's already touched. He's an amazing kid! GOD's got big things in store for him! Your support and prayers are such an encouragement to us throughout all of this and we cannot thank you enough!
In His Hands,
Jeremiah, Crista, and JD
Tuesday, February 23, 2010
Next Step...
I got a phone call this morning from our pediatrician's office stating that the doctor wanted me to bring JD in ASAP. There was no explanation as to why - just that they needed him in the office today. We arrived at 1:15 and were with the doctor by 1:30. Well, the doctor said he wanted us to come in so he could check JD again and make sure there was no positive change to the masses on JD's neck. After examining him the doctor said there has definitely not been any progress; therefore, he is going to be calling the hospital to schedule the CT Scan and surgery. He said we should hear back from him sometime tomorrow regarding the details.
He said he is going to try and arrange it so that JD does NOT have to be sedated for the CT Scan. He said they sometimes allow the children to stay awake and just place them in a straight-jacket type coat and strap their head down so he cannot move. The doctor said the CT Scan will take less than 5 minutes, if we can get JD to hold still that long. After the CT Scan he is trying to arrange to have the Operating Room standing by for the surgery to remove the masses.
I asked the doctor and he said they will be removing BOTH masses. They will get the bulk of the masses but are not going to try and get all of it. He said the parts that are removed will be frozen and sent off to the lab to be anazlyzed. If theyare found to be something that will grow back then they will have to go back in and remove the rest in a meticulous manner - the doctor feels this is VERY unlikely. If they are proven to be just an infection that will NOT grow back, they will remove as much as possible then just treat the rest with antibiotics. At this point he said the symptoms are pointing to an abcess or microbacterial/fungal disease. He said right now he's just making an educated guess - we won't know for sure until they are removed.
Our pediatrician said he will be making the calls/arrangements with the hospital tomorrow and will then call me with the details. We had a feeling this was the next step, but now that it's here there are no words to explain what I'm feeling/thinking. Please continue to pray for us. I don't even know what to ask for specifically right now...just pray. Thank you!
In His Hands,
Jeremiah, Crista, & JD
He said he is going to try and arrange it so that JD does NOT have to be sedated for the CT Scan. He said they sometimes allow the children to stay awake and just place them in a straight-jacket type coat and strap their head down so he cannot move. The doctor said the CT Scan will take less than 5 minutes, if we can get JD to hold still that long. After the CT Scan he is trying to arrange to have the Operating Room standing by for the surgery to remove the masses.
I asked the doctor and he said they will be removing BOTH masses. They will get the bulk of the masses but are not going to try and get all of it. He said the parts that are removed will be frozen and sent off to the lab to be anazlyzed. If theyare found to be something that will grow back then they will have to go back in and remove the rest in a meticulous manner - the doctor feels this is VERY unlikely. If they are proven to be just an infection that will NOT grow back, they will remove as much as possible then just treat the rest with antibiotics. At this point he said the symptoms are pointing to an abcess or microbacterial/fungal disease. He said right now he's just making an educated guess - we won't know for sure until they are removed.
Our pediatrician said he will be making the calls/arrangements with the hospital tomorrow and will then call me with the details. We had a feeling this was the next step, but now that it's here there are no words to explain what I'm feeling/thinking. Please continue to pray for us. I don't even know what to ask for specifically right now...just pray. Thank you!
In His Hands,
Jeremiah, Crista, & JD
Wednesday, February 17, 2010
JD Update 2.0
Well, at least today didn't hold as much drama as last week - thankfully. God knows I can't do two weeks in a row like that! I met with JD's pediatrician again this morning to get the results of the aspiration/biopsy from last week. He said that the culture is still negative - which is good. He went over all the labs that have been done up to this point and said that there isn't anything definitive in any of the tests. He was concerned about the size/shape of the masses but after examining them , said that they feel like they may be softening some - which is also good. He said that he was concerned after he saw the pathology report that not all the tests were done that should have been. He told me it could be a micro-bacterial infection, infected cysts, etc. He said more tests need to be done to know for sure what this is and how to treat it. He also said that his gut feeling is that we are going to end up doing a CT Scan and then surgery to remove them. He said he wanted to talk to the pathologists, ENT specialist, as well as the Infectious Diseases (ID) office and get some of his questions answered. He was calling ID to see if there was something going around that he might not be aware of or be testing for. He said that would do that immediately and give me a call.
About an hour and a half later he called me back to say that he spoke with ID and they said it could be a couple different things but that they think that we are going the right route. They discussed the best test options and ID agreed that we may need a CT scan and surgery (it's becoming the popular diagnoses). Pathology said that they are able to run the extra tests on the samples that were already taken so JD doesn't have to go under the needle again...yet! *YAY* The results should be back within a day or two. They are primarily looking for micro diseases that may be more easily treated. Depending on the outcome of those tests we may be able to treat this with more meds OR ...you guessed it - CT scan and surgery. The point of the CT is to do a blood map that the surgeon will use as a guide during the surgery.
So, we have to go tomorrow to have blood drawn to rule out another disease. Then next Monday, Feb 22, we'll have a follow-up with the specialist to go over the results of all the most recent tests. I'm so exhausted from all of this - emotionally and otherwise. My heart goes out ot my family and friends who deal daily with more serious health conditions. I don't know how you do it. I've prayed more in the past month and been drawn closer to GOD through all this. It's amazing how fast you fall to your knees when your baby is sick. JD is a trooper. He's not himself and I hate that! I want him to feel better!!! I know GOD has this in HIS hands and HE already knows the result of every test, scan, etc. We're still trusting and knowing that GOD can handle this. Thank you for your continued prayers! We are so very grateful for your support!!
In His Hands,
Jeremiah, Crista, & JD
About an hour and a half later he called me back to say that he spoke with ID and they said it could be a couple different things but that they think that we are going the right route. They discussed the best test options and ID agreed that we may need a CT scan and surgery (it's becoming the popular diagnoses). Pathology said that they are able to run the extra tests on the samples that were already taken so JD doesn't have to go under the needle again...yet! *YAY* The results should be back within a day or two. They are primarily looking for micro diseases that may be more easily treated. Depending on the outcome of those tests we may be able to treat this with more meds OR ...you guessed it - CT scan and surgery. The point of the CT is to do a blood map that the surgeon will use as a guide during the surgery.
So, we have to go tomorrow to have blood drawn to rule out another disease. Then next Monday, Feb 22, we'll have a follow-up with the specialist to go over the results of all the most recent tests. I'm so exhausted from all of this - emotionally and otherwise. My heart goes out ot my family and friends who deal daily with more serious health conditions. I don't know how you do it. I've prayed more in the past month and been drawn closer to GOD through all this. It's amazing how fast you fall to your knees when your baby is sick. JD is a trooper. He's not himself and I hate that! I want him to feel better!!! I know GOD has this in HIS hands and HE already knows the result of every test, scan, etc. We're still trusting and knowing that GOD can handle this. Thank you for your continued prayers! We are so very grateful for your support!!
In His Hands,
Jeremiah, Crista, & JD
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