September 2nd

What a whirlwind of a day yesterday and the past 30 days.

At the end of July, I took Anderson to the dentist for his regular cleaning.  The dentist found that one of his 6 year old molars came in without any enamel (of course it did!)!  Consequently, the tooth was decaying.  Did I mention this is a permanent tooth??  So, the dentist turned to me and said we have to go to the OR to fix this one.  It will be the only way and we may have to put a crown on it.  The dentist office we go to has 3 dentists, I was seeing Dr. B at the time of this visit.  He is so sweet, but I thought since Dr. D had JUST pulled Anderson's abscessed tooth a few months ago, she knew him better, I thought I would ask if she would take Anderson to the OR.  I made that request and Dr. D agreed she would be happy to be the one to fix his tooth.

When I spoke to Dr. D about the procedure, I told her my "wish list"...a brain MRI while he is under general anesthesia for his dental procedure.  Anderson was really "overdue" for a follow up MRI.  His doctors ideally would have ordered a follow up brain MRI 3-4 years ago, but did not want to "risk" the anesthesia for "just take a look" to be sure all is ok.  In fact, I had one of Anderson's doctors say to me, "If Anderson ever goes into the hospital for a dental procedure, we need to add an MRI to it."  So, I threw out the question to the dentist.

Dr. D happened to be going to the hospital the following day and she said she would ask the anesthesiologist if it would be possible.  That doctor told her, nope not possible.  (REMEMBER SHE IS A DENTIST!)  Dr. D pushed further and asked if it was a flat NO or just a maybe I need to talk to someone else.  This anesthesiologist said to talk to the Chief of anesthesia for the hospital.  So, Dr. D did just that!  She got on the phone, called the Chief and told him Anderson's situation.  The Chief said, it is a risk to transport a patient that is under anesthesia, they do not like to do it, it is a scheduling nightmare bc you have to reserve the MRI suite and the OR and get the timing down perfectly, etc.  However, the Chief said he was willing to look into it if the dentist office gave him a date.

Then, Dr. D calls me.  She said, "Liz, I have a concern.  If Anderson's tooth is so decayed and no enamel on it, we will have to put on a stainless steel crown and I believe this will impact reading any future MRIs."  Did I mention she is a DENTIST and she is thinking of this and fighting for Anderson?  Dr. D told me to email our neurosurgeon and ask him about it.  Long story short, he said...yep, no metal in Anderson's mouth, the permanent tooth will have to come out if that is the case.  Dr. D suggests I call the Children's hospital in DC (they have a dentistry department) and see if they have come across this and if they have an alternative to the stainless steel cap.  I get on the phone, make a few calls...I get a dentist (that has never seen Anderson) to call me, I explain the situation, she tells me she does not believe there is an alternative, but she will ask the head of dentistry at their hospital (did I mention Anderson has NEVER been a patient at this hospital and they are working and trying to find an answer for me?!?!?)  Children's calls me back with bad news...they do not have an alternative, they too would pull the tooth.  Ok, back to Dr. D doing the surgery!

I call Dr. D and give her all the news.  The first thing they would try and do is save the molar and place a filling in it.  But, everyone was unsure if this was a possibility.  We needed plan B.  Plan B quickly became pull the tooth.  Dr. D tells me that now we are in a situation she does not pull permanent teeth.  It is not something she does often and she would feel more comfortable in this situation if we went back to Dr. B, he is more experienced in this area.  We agree and understand.  We pick the date of September 2nd with Dr. B.

I reach out to Anderson's neurosurgeon and ask him what MRIs would he want to see if we can coordinate this and I tell him Anderson's growth and height for the past year.  Last year...we started to worry that Anderson was having some potential issues and they could be related to his Chiari.  I've emailed with his neurosurgeon in Chicago who confirmed our suspicions could be related to Chiari, but we would need an MRI to confirm.  We decided to wait last year and just see what happened this year.  Well...this year, we are still seeing the same issue.  Anderson's growth and weight are out of whack.  The risk that exists is scar tissue from his brain surgery pushing on his pituitary gland causing these issues.  Neuro writes me back and says "this is no longer a nice to have MRI but a NEED to have MRI".  If the hospital will not agree to ONE anesthesia we are at the point we MUST do the MRI, Anderson has to go under 2x.  Ok, I start to worry now!

I call Dr. D and explain to her about the MRI and the concern for it and the "must have".  I offer to call the hospital to work with the Chief on scheduling.  Nope, guess who does it...Dr. D!!  She calls him again, she gives the date, the story and guess what...he calls her back and it is a GO!  We can do the MRIs and the dental procedure on the same day.  They do not like to do this, but given the circumstances they agree 1 general anesthesia for Anderson with a transport is better than 2 separate anesthesias!

HOLY SMOKES!  I am so relieved at this point.  Now, Dr. D says....if you want blood pulled, at the hospital while Anderson is asleep, lets do it.  Get all doctors on board with any labs they want and lets get it done.  WOW!  I LOVE this dentist!!  DID I mention she is NOT doing the surgery, but has yet fought and "won" the MRI on the same day, and now she is worried about getting any blood work pulled that he needs!

Here we go again....Now, I start coordinating Anderson's doctor in California who still consults with us and our rock star pediatrician.  We pull together a list (a day past the deadline the dentist set, and of course Dr. D was fine with it) of labs and we get it submitted to the hospital.  Our pediatrician and her staff has to put up with me this entire time calling, asking questions, needing records, needing labs, etc.  The staff all helped me every time with a smile and do not worry Mrs. Mescher ;).

On Tuesday at 11:00 AM, everything was set.  I had surgery time, I had arrival time to the hospital, pre-op paperwork was completed by our pediatrician and submitted, labs submitted, etc.  Now...I just had to wait.  I was full of worry.

When you have a 15 month old baby with the issues Anderson was having, and a neurologist tells you she wants to order an MRI, but it is 1 in a million chance they will find something....you do not worry about the MRI.  But, you get a phone call 24 hours later telling you they found something and it is spelled C-H-I-A-R-I.  Your life is forever changed.  Fast forward and your baby is 9 years old and you have not had an MRI image taken in 6 years...you can NOT Help but worry and worry and worry what it will say.  I am not sure if Worry even expresses how Charlie and I felt.

Finally, Wednesday arrived.  Everyone at the hospital was "expecting" Anderson...the kiddo with 2 procedures in 2 different parts of the hospital ;)  Once again, everyone knew him!  HA!  The Chief of anesthesia decided to be on the case for Anderson.  He came into the pre-op room yesterday morning, gave us the warmest smile and said, "Well, I got the most interesting call from your dentist.  She explained to me the situation and I decided I was up for an adventure!  And, I called my best nurse and told her the situation and asked her if she wanted to jump on the adventure with me and she said sure, so here we are!"  I am so grateful he decided to say yes and save Anderson another round of anesthesia.

MRI was suppose to be from 8:30-9:30 and dental from 9:30-11.  Apparently a few things went wrong, we are not exactly 100% sure, but it sounds like some scheduling issue (after Anderson was already asleep), and the MRI machine deciding to shut down in the middle of A's MRI!  Of course it did!  Nothing you can do when this happens apparently, but wait the 15 minutes it takes to reboot.  A nurse came to us around 10:30 to let us know he was still in the MRI!  WHAT!  We thought he would have been almost done with surgery at that point.  At 11:10, they came to us and said the dental procedure had just started.  Around 12:15pm, the dentist came and got us.  It was over, they were waking Anderson up!  Poor guy was under for almost 4 hours!  It was double the amount of time expected.

Good news - Dr. B saved Anderson's permanent tooth!!!  The molar has an extremely large filling, but it is saved.  They did dental xrays while they were working on him, found 2 other bad cavities into the nerve of 2 baby teeth...so guess who came to our house last night!  Yes, the tooth fairy made an appearance for 2 teeth that were pulled!  They placed a gel foam into his mouth and a few stitches to make 110% sure they would stop the bleeding ;).

We were able to see Anderson about 20 minutes later.  He was having quite a hard time coming out of anesthesia.  This is very normal for children, and it has been Anderson's MO every time he's had it.  ( I counted yesterday during our down time...this was A's 8th time under anesthesia...for MRIs, or surgeries.  Yep, 8 times in 9 years.  Bless his heart.  That is more than most people see in a lifetime!)  The staff again went above and beyond at the hospital.  They were so understanding that Anderson would feel much better at home with us than in the recovery room.  They quickly discharged us once they saw his oxygen was stable.  Anderson was not too happy at all.  The picture I posted on FB was pre-op, not post op.  You would not have wanted to see him post-op...he was having a very difficult time.

Anderson was a bit challenging yesterday afternoon.  It was like he drank a bottle of tequila when we got home.  He was very unstable and could hardly stand.  As time went on, it obviously got better.  However, he is so accident prone on a good day, that Charlie and I just kept saying, PLEASE LET US NOT END UP BACK IN THE ER TODAY!!  We made it!  Anderson finally went to sleep and he had a typical night.  He woke up happy as could be and very chatty saying all of his "Anderson" words that he says!  We were so relieved this morning.

We received so many phone calls, emails, texts, flowers, cards, and FB messages.  The kindness from friends and family meant so much.  We appreciate all of the prayers.  Please keep them coming as we continue to figure out what is the next steps.

As I posted on FB last night, this truly took a village....A village of doctors and their staff that went above and beyond.  They hugged me when I was in tears and scared of the what the MRI might say, they told me they would pray for all of us, they made phone calls, wrote letters, sent faxes, coordinated so many things and so many people to do what was truly in Anderson's best interest.....but it was certainly out of the realm of "typical"procedure.  I am so grateful for everyone.  And Dr. D for fighting for Anderson like it was her own child.  I showered them all with flowers and cards....and now I need to buy Dr. B a little something since he had to wait 1.5 hours until the MRI was done to get Anderson into the OR.   Dr. B did not blink and eye and understood this was just what needed to happen!

Now....the waiting game.  As you all know, I am not one to sit around.  So, by 4:00pm yesterday, I had the radiology report in my hand and I read it and reread it and reread it.  At this point, I do not want to talk about what it says, bc I am not sure what the doctors will make of it.  I am trying not to worry (HA!), and wait to hear what they say.  I am mailing off the images and report to the neurosurgeon today, confirmed our pediatrician has the report, and I scanned it over to our California doctor.  So, everyone has it.  Just waiting.......and waiting.....I will try and practice patience and try and not worry...Until then....

I will be happy to share what is going on.  I have always said I will share Anderson's story with anyone that will listen.  I just want to make sure the info I give is accurate and we have the plan. Keep you posted!

XOXO