Monday, April 5, 2010

So Very Thankful

We have several new things to be thankful for on our journey with JD. I just wanted to take a moment and share them here.
Things have really been progressing well with JD. He is currently through 2-1/2 weeks of his meds and is doing well with them. I've never seen a kid take medicine like JD. The doctors had told us that one of his meds was extremely bitter. It's a capsule that we have to break and mix in with food, but we were told it's very hard to. I asked both the doctor and pharmacist if they had any suggestions for what to mix it with and they said, "Just don't mix it with applesauce." Other than that, no ideas. They said usually once you find something to mask it with the kid realizes there's medicine mixed in and stops taking it so you're constantly having to find new foods to mask it with. *yay* Well, the first thing we tried was a Snack Pack Pudding cup and guess what - two and a half weeks later JD is still taking his meds with a pudding cup. I only give him one large spoonful of pudding with ALL of the capsule mixed in so I know it has to be really bitter - but he does GREAT! You'd think he was just eating regular pudding! We are blessed! Knowing that we have at least 12 weeks with these meds it makes it so much easier knowing that he takes it so easily.
Also, on our blessing list - GOD has been greatly meeting our financial needs. We received an encouraging card with a chack in it from a friend of ours that used to work with Jeremiah's mom. GOD laid it on their hearts to help us out. It was such an encouragement to know that GOD was watching out for us! Then on March 21 we noticed an announcement in our church bulletin - on March 28 our church would be taking an offering for us as an expression of their love and support for us. We were dumbfounded! I was beyond speechless - I was in awe! Now, let me tell you, it doesn't matter how badly we are hurting I really have trouble taking anything from anybody. I don't know if it's pride or what but I know there are other people who are worse off than we are and I would rather them have the blessing, ya know?! It is very hard for me to be the receiver - I want to be the GIVER! I didn't want people knowing just how bad it was for us, but...I wasn't in control - GOD was! When we saw the announcement in the bulletin I knew I had to just let go of it and allow GOD to work.
After the morning service Jay (Jeremiah's brother) was driving our truck and a lady made a U-Turn without yielding and well...let's just say the cars "made an impact" that day! :O) Our truck was totalled! That was NOT part of my plan either. Thankfully, Jay wasn't severely injured, just a bit sore. We were out a vehicle though. We are definitely a two car family but GOD again, chose to do things in a way we weren't understanding. Due to the economy finding a new vehicle has been very challenging. GOD is great though! It looks as if he may have provided a vehicle for us in a way we wouldn't have expected! (If it works out, I'll post details later!)
As we were dealing with all of this mess March 28 came around. This was the Sunday of our Love Offering. I felt so vulnerable that night. I felt as if everybody knew my business. They had been told about the medical situation and about how much we owed. It was hard for me to be that open with so many people, but I knew that GOD was using this situation for reasons unknown to me. The message that night seemed like it had my name all over it. It was so challenging I couldn't stand it! On Monday night Pastor came by the house to drop the check off. When we opened it I was stunned!!! Our church family had pulled together and paid over HALF of our medical bills. Jeremiah and I knew that whatever we received from that offering would help but had no idea how much it would be! GOD used the people of our church to bless us unimaginably!
We are still in the midst of the situation medically and financially but we are now facing it differently. We have seen GOD work time after time through this and are amazed at how HE keeps blessing us! When hard times come it's so easy to just "fall apart" and say "woe is me". It's easy to worry - I'm a pro at that! But I think GOD sometimes uses these hardships as ways to show Himself strong to us, and to others, so that one day, when a harder time comes, we can look back and say "If HE took care of me then, why wouldn't HE take care of me now?!" We are so blessed.
I had written a personal thank you note to our Pastor and church family, but I have to say again on here - Thank you for allowing GOD to use you to bless us! Also, to all that have joined this group and followed our story - thank you for your prayers. I believe we have been blessed because of your faithfulness to pray! There truly is power in prayer! I hope to post more soon!

In His Hands-
Jeremiah, Crista, & JD

Tuesday, March 23, 2010

Keeping Us on Our Toes

Never a dull moment! Well, we had another scare with JD. Yesterday morning I noticed a piece of skin hanging from one of the incisions. When I pulled it the incision started oozing...a lot! I will spare you the gross details, but suffice it to say that there was a lot that came out of it. It continued to ooze/bleed throughout the day. Last night we cleaned the area real well but noticed that the entire incision had split open. It's been almost a month since the surgery (I know, hard to believe) but you would think it would've healed by now. I called the doctor and they wanted me to bring JD in ASAP - so I did. After the doctor examined him and the area thoroughly he said he thinks that the infection had built up in the area and just needed somewhere to go. He said the incision hadn't healed enough to withstand the pressure and therefore reopened. This is a good thing because the infection is "leaving the area!" He did say that it looks like the meds are working - even though there is no difference in the appearance of the masses yet. So another scare that has been resolved! Please keep him in your prayers. The meds are kinda hard on his system but he's doing ok with them so far otherwise.

Monday, March 15, 2010

A Battle Plan

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

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'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

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

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

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

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 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

Saturday, February 13, 2010

Our Side of Drama

Well - round two at the hospital is over - for now! What an experience all of this is becoming!! We arrived at the hospital right at noon and were immediately directed to a private room in the sedation department. Numbing pads were placed on JD's feet to prep for the IV. The Child Life Specialist and her intern began explaining the projected timeline for the rest of the afternoon & the sedation doctor then came in to ask us questions regarding JD's health history and to examine him for the procedure. She explained to us the risks and benefits of sedation - it really makes you not want to do it when you hear all that!!! They placed the IV - which was extremely traumatic for JD - and then we headed down to Radiology.
Once in Radiology JD was placed on a stretcher and the real "fun" began. He started getting hooked up to all sorts of monitors, tubes, etc. It's a good thing I knew this was a somewhat minor procedure or otherwise seeing him like that would have scared me! Once they began giving him the sedation meds he began to fade fast! He fought it for a while and then could hold off no more! He gave in to the powers of the med they call "magic milk". Once he was sedated, the doctor realized we hadn't signed one of the consent forms yet. They took us into another room so the US tech could go over the form with us and we discovered the particulars of the procedure. For the first time we throughout this ordeal we were told the full truth! The point of this procedure was only to draw enough fluid to send to the lab. I explained to the tech that the ENT specialist had said they were going to drain this completely and that would hopefully resolve the problem. This wasn't the case! She said they would get as much fluid as possible but that was the main point.
They finished the procedure and called us back into the room as they were waking JD back up. I asked the Radiologist why they couldn't use the fluid they had already withdrawn back in January. The Radiologist said she had never been told they had done the Fine Needle test. I was furious!!! Evidently the ENT specialist didn't see the point in sharing ALL information with the radiologist - so now we are paying for a test that was done a month ago, that we didn't get any answers from! I went off! I explained to the doctor the seriousness of this situation and how we had specifically explained our finances to the ENT doctor. Evidently they completely ignored everything we said.
When JD was moved to recovery in the AMU I called our pediatrician and expressed my concerns. I asked if the follow-up could be done through the pediatrician's office instead of the ENT. I explained that I am furious with the ENT and don't feel that we are getting treated fairly by him or his office. The pediatrician has said that they're going to try and work it out that we can follow-up with them. Yay for small victories!!! The test results should be back on Tuesday so we should find out sometime after that! Please keep praying that somehow this will just heal on its own. We're already being billed for services being rendered that we never should have and still have no answers. GOD's still in control - we know that! Now we just have to be patient! Please keep praying!

In His Hands -
Jeremiah, Crista, & JD

Friday, February 12, 2010

Peace in the Midst of....Wherever We Are

Well, today we will be going to the hospital for "round 2" of this crazy mess. We do not know what's going to happen or if it will be good or bad news. I'm praying that the fluid will have thinned enough that they can do the procedure. I can't imagine going through this a THIRD time. I know that GOD already knows the outcome and we are trusting HIM to take care of our little man. This is most likely going to be a very long and emotionally trying day! But I know we will come out of it ok. We have friends and family around the country praying for us and those prayers are not in vain. GOD is a GOD of mercy and even though it may not be the outcome we hope for it will be what is best for us and what brings the most glory to GOD. We know that we are in HIS hands and that is the safest place to be. Please pray that the doctors have wisdom as they determine the next step in treatment. Thank you - from all three of us! GOD is good all the time...

In His Hands,
Jeremiah, Crista, & JD

Tuesday, February 9, 2010

Off to the Hospital - Round 1

This morning I called the ENT office to find out when the ultrasound procedure was going to be. They were supposed to call me yesterday and I never heard anything. The nurse said she needed to check on it and would call me back. The next half hour was spent talking to the ENT nurse and the pediatric sedation nurse. They were trying to get the kinks worked out and get us scheduled. The called at 8:50am and said we had an appointment at noon. They told me JD couldn’t have anything to eat or drink after 9:00am. The only thing I was allowed to give him for the next 10 minutes was apple juice. Try explaining to a 21-month old that he can’t eat or drink! I took JD to work with me for an hour then we headed to the hospital. We had to get there at 11:00am to get him checked in, the IV started, etc. We got there at 11:00am got checked in and headed to the Pediatric dept. They had a liaison who explained the steps we would go through and helped us better understand the procedure. They started getting JD prepped and asked if he’d already had a CT scan. We told them no. They left the room and came back a few minutes later and explained that they don’t like to take the risk of sedation without knowing for sure there’s something in the lump that needs to be extracted. They decided to do an ultrasound first. We headed downstairs to do the ultrasound and as soon as we entered the radiology department one of the radiologists said that JD needed to be on a stretcher first. The sedation nurse we were with explained he was outpatient and didn’t have a room. The radiologist and nurse then began “arguing” back and forth as to what needed to be done. The radiologist said we had to have a room for JD to “recover” in after the biopsy. They finally worked something out and we went on to the US room. We waited for a few minutes before the tech came in. She said she was going to go ahead and do the US and get that out of the way. JD was PERFECT throughout the US. He sat so well for them! I was so proud! They said they’d never had a 21-month old behave so well! *That’s my boy!* After the US we waited for quite a while for the doctor to come in to do the procedure. While waiting the nurses, sedation team, and US techs were discussing that our specialist’s office had tried to “short-circuit” the system in the way they’d scheduled the procedure. They didn’t go through the proper channels and that’s why this had been such a confusing mess (having to do an extra US, having no bed to recover in, etc). When the doctor finally came in she informed us that there was definitely quite a bit of liquid in the lumps but that it was too thick to be extracted. She said that we needed to wait a few more days for it to thin out and then we’ll have to come back and do this procedure. I was so frustrated with the ENT office. We went through a stressful day all because they tried to take shortcuts. So, we still have no answers but at least we got some information from the doctor at the hospital that really made us feel better. It was nice to get a second opinion and to feel secure in their decision. So now we go back on Friday @ 11:00am and get to go through all this again.
Please continue to pray for all of us. We are trying to remember that GOD is in control of the situation. We know that HE is but it’s hard to keep that in our focus sometimes. It’s so easy to say it when everything’s going great but our faith is being tested right now! We are so thankful for your continued prayers! We aren’t through this yet, so please keep praying! We’ll keep you posted!

In His Hands-
Jeremiah, Crista, & JD

Monday, February 8, 2010


Here is the best shot we could get of the lumps on JD's neck. The first one (under his ear) is the worst. The second one (kind of under his chin) isn't quite as large and is definitely not as red. They both look bad though!
JD’s follow-up appointment was supposed to be January 28, 2010 but we got a call from the doctor’s office the day before telling us that we had to reschedule because our doctor was going to be in Haiti. They scheduled us for this morning (February 8, 2010) at 8:45am. We got there early (I know – I was shocked we were early too, Tiffany! ) and we waited until about 9:00am before they called us back. Then we waited another 20 minutes until the doctor came in. The doctor came in only it wasn’t Dr. Albernaz – it was a medical resident. (*yay*) She asked me a bunch of questions about what had been going on (when it started, symptoms, etc). I explained that the antibiotics he’d been on were supposed to clear up the infection and shrink/heal the “lumps” but they’ve gotten bigger! After she got all her info she went out in the hallway to “confer” with the specialist. Then the door opened and in came the specialist, and not one but TWO of the wonderful residents!
Dr. Albernaz examined JD and asked me some more questions. He then said that he thinks our next step will be to have an ultrasound done on his neck to examine the lumps. They’re also going to use a needle to aspirate the lumps while doing the ultrasound so they have a guide as to where the needle is going. JD will have to be sedated during this procedure – the doctor was surprised that I knew what sedated meant. Guess he thinks it’s an uncommon word?? He put JD on the same antibiotic – that didn’t do any good the first time – and said we’ll try another round of antibiotics. After the ultrasound and aspiration we have to go back to the specialist again! Clearly he thinks we are made of money!! Anyway- it’s very frustrating because we still do not know anything. Please keep praying for healing for JD and for patience for me! Our insurance isn’t covering any of this so every time they’re dragging it out I panic a bit! It’s my child’s health and I’d do anything for him but you all know what I mean. Doctors don’t always think about the most cost-effective method for their patients. Anyway- thank you for your continued prayers. The ultrasound/aspiration is supposed to be this week so hopefully I’ll have more news soon.

Monday, January 18, 2010


GOD is amazing and we are so very thankful for HIS work in JD this week!

As most of you know, JD is our son. He’s 21 months old and just a riot to be around! On Thursday afternoon, January 7, my friend (and JD’s sitter) Tiffany called me to see if I had noticed any swelling in JD’s glands that morning. I told her I hadn’t noticed anything and then asked why she was asking. She said she hadn’t noticed anything that morning but then that afternoon when he went down for his nap she noticed two goose-eggs on the left side of his neck and a smaller one on the right side. I wasn’t sure what it was so I called the phone nurse at our pediatrician’s office. I briefly explained what Tiffany had described to me. I asked what it could be and if I needed to bring JD in to the office. The nurse said since he wasn’t running a fever and had no other symptoms she recommended I give him some allergy medicine for the next few days and just keep a close eye on him for any other symptoms. She said when children get colds or have sinus trouble it can back up into their glands and cause them to swell. This is most likely what was wrong with JD!
I watched him all weekend and gave him his "daily regimen" of allergy meds and there wasn’t any improvement. I had called the nurse back Friday just to get some more advice as to what we could do and she said if there is no change by mid-next week or if they’d gotten bigger, she recommended I bring JD in to the office. My mother-in-law brought me some Amoxicillin Saturday that one of my nephews had just gotten but was allergic to so couldn’t use. I started him on that Sunday thinking if it was an infection that would take care of the problem.
I kept a close eye on JD all week! I looked up “swollen glands” on WebMD, and in the medical book I have at home. They all listed a ton of things it could be but the only symptom JD had for any of them were the swollen glands. JD never had any other symptoms all week. He was still eating/sleeping like normal, still acting like the crazy kid he is, and still NO FEVER! The bump on the right side actually went away, but the two on the left didn’t seem to change much at all. On Sunday morning, January 17, I completely forgot to give JD his allergy medicine before church. The bumps on the left side seemed so much bigger on Sunday night and Jeremiah and I decided to finally take him to the doctor on Monday morning. If nothing else, it would give me peace of mind! I figured I’d go in and get a different allergy medicine and we’d be good!
I got to the doctor’s office around 8:30am and actually was fortunate enough to get the head pediatrician as the doctor for our visit. I was thrilled about that because he’s so thorough and I knew we were in good hands. After examining JD’s neck he told me that something just wasn’t right. He asked me to expound on the last 10 days and any other symptoms. I told him how JD hadn’t had any other symptoms and how WebMD listed cancer as the first possible disease of swollen glands. I was kind of chuckling and said, “I haven’t even entertained that idea. I mean, sometimes I think they just put that up there first to scare people.” I wanted him to know I wasn't one of those parents who was expecting the worst. The doctor paused for a minute then said, “I don’t know if you knew or not, but I was a cancer specialist for 16 years.” He proceeded to tell me that cancer is unlikely but he wasn’t ruling it out. Then he told me it wasn’t urgent, but he recommends JD have a CT scan within the next day or two. I kept thinking, if it’s not urgent why did we have to do it in the next day or two?! He said something wasn’t right about the bumps and he wants to get a better look at them. He said if JD had a CT he’d have to be put under. He then said the only other option was to have a Fine Needle test. The doctor explained that when he worked in the cancer field a Fine Needle test was the best way to examine a mass and
determine the cause/treatment. The problem was he didn’t know if they could still do Fine Needle tests. Also, he said that most likely whatever they find will result in the bumps being surgically removed.
Here I am with my 21-month old son, facing terms like “mass, cancer, CT scan”. Not a good feeling! I didn’t know what to do. I just kept thinking “God you already know what this is and you know how to fix it! I’ve just gotta trust you!” The doctor went to call the specialist’s office and see if they could do the Fine Needle test. In the meantime, a nurse came to do a blood test on JD to test his white blood cell levels. The doctor came back in a few minutes later and said he got us worked in for the test and that JD’s blood work came back perfect. That meant that cancer most likely was not present…but that wasn’t 100% guaranteed.
I got in the car to go to the specialists office and it hit me – this is real! Something could be REALLY really wrong! I was on the phone with different family members while I drove to the specialist’s office and just kept getting more and more worked up! The more I talked about it and explained what was going on the more REAL it became and that scared me. I knew GOD was in control but I was worried about my baby!
Jeremiah met me at the specialists office around 9:45am. Then we waited! For an hour and 45 minutes we waited! Our pediatrician had told me what they would have to do to JD to complete the Fine Needle test and that most likely I wouldn’t be allowed in the room. I was dreading what JD was about to go through; but JD had no idea! He was having a blast. He got to show off in the waiting room and just soaked up the attention! What a ham!!!! We finally got called back and were put in a room. Within just a few minutes the doctor walked in and began to go over the details of the procedure. After they got everything set up they told us we were about to begin. They allowed both Jeremiah and I to stay in the room throughout the procedure. JD was placed on a body board with straps over his ankles, knees, stomach and arms while three nurses held him down. The doctor then stuck a needle in one of the bumps to numb it. He then stuck a larger needle in the bump to extract some of the tissue. JD just screamed the whole time. It was awful! I didn’t want to watch it, but I couldn’t leave him. After they extracted the tissue the nurses unstrapped him and gave him to me. Talk about heart-wrenching. JD held on so tight! The doctor explained they would examine the tissue and should have the results by that afternoon. He told us to come back around 4:30pm and they would give us the results and we would go from there.
We left the office, got some lunch, Jeremiah went back to work and I went to my brother-in-law/sister-in-law’s house. I wasn’t about to stay home alone. It was a long four hours filled with calls to friends and family keeping them posted as to what was going on. We had everybody praying because we didn’t know what we were about to be faced with. One of the pastors from our church called to pray with us and he said something in his prayer that stuck with me all day “God, we know that this isn’t a surprise to you”. It wasn’t a surprise to GOD at all! It knocked me off my feet but didn’t even make GOD flinch. HE already knew the outcome!
We headed back to the doctor’s office around 4:30pm and were taken directly to a room. The doctor came in with a huge grin on his face and said, “Great news! It’s just an infection!” Never had I been so happy to hear the word “infection”. He said they weren’t sure what caused the infection but we would need to treat that first. He has to be on stronger antibiotics, then we have to go back Thursday, January 28, for a follow-up. He said that he is concerned with why the infection bunched up in the two masses like it did. He said it could either be a cyst that got infected (that will eventually have to be removed) or it could be lymph cells that bunched together and somehow got infected (and they’ll eventually have to be removed). Right now – we just have to get rid of the infection. After that they’ll have to do more tests to determine our next course of action.
I was thrilled with the news! Yes, we still may be facing surgery and I’m okay with that. He’s a boy – he’ll love having scars! Compared to what we could have faced, this is fantastic news. Throughout the whole process Jeremiah and I both remained relatively calm. I know that is all because GOD’s people were praying for us. Most of you didn’t even know what to pray about – just to pray. I can’t thank you enough! Our GOD is an awesome GOD and I am so thankful for the grace and strength HE gave us yesterday! We still covet your prayers! The next 10 days are going to be long! Our prayer is that the antibiotics completely heal the infection and even resolve the issue so no surgery is necessary. If he does have to have surgery, that's okay too. We'll get through it. Again, GOD knows! Thank you for loving us and praying us through this! I know in comparison to some this is minor. I know that there are families with far worse medical situations. I can’t imagine what it is like for them. But this was huge to us.
GOD promises to never leave or forsake us and to never give more than we are able to handle. If you are not sure about your future and you don't know 100% sure where you will spend eternity, I ask you to meet my Savior and Lord, Jesus Christ. He will come to you, where you are - just as you are. The Bible says if we confess our sins He is faithful and just to forgive us our sins and cleanse us from all unrighteousness. If you would like to meet my GOD, I'd love to help you know for sure that you're going to heaven! Thank you again for all your love and prayers. We will keep you updated!

Jeremiah, Crista, and JD

*This was taken of my sweet boy in Sep/Oct 2009. It is one of my favorite pictures of him!