Well, I guess the beginning is as good a place as any...

I decided that I needed to post about the events that have been going on in our life. First off, John is doing great. It is important to me that everyone around us keep that fact close at hand and not project fears or worry on John (or Tate and myself). I am a firm believer in not jumping to conclusions and keeping your head held high. I am a rather private person when it comes to dealing with personal adversity. I don't handle a lot of drama well. I debated on whether to go 'public' with this information for a very long time. Our families are aware of everything, but I know they find my standoffishness difficult to deal with, it's who I am and how I deal. I do appreciate all the concerns, the prayers, and the love that is being sent our way. It means a lot to us. But I do feel I need to post the information that we have in order to keep the confusion to a minimum. So here goes....

If you were reading this blog in the fall, you probably read about my increasing frustrations with John's never-ending cold. We were constantly dealing with lots of congestion and lots of snot and a very frustrated baby, not to mention a very frustrated mom and dad. After John's 9 month check-up, every time I took John in to have his ears checked, I was treated like one of "those" mothers, you know what I am talking about. As if I am wasting all their time by bring my kid in that "just has another cold". But my problem was that he never got better between these so called colds. I was a little shamed, but everytime I called a nurse, they suggested I bring him in, just to make sure it wasn't his ears. I was also annoyed that we never saw John's pediatrician on sick visits. We saw nurse practicioners, we saw other pediatricians, but we never saw the man who had a history with the kid. After one last visit with another pediatrician I got pissed off. I had quarantined this child for 3 weeks solid, no school, no playdates, no music class, no yoga, no grocery store...nothing. I even disinfected Tate everytime he walked in the door, just in case he was bringing nasty DART germs into the house. When this woman, who obviously does not have children of her own, and doesn't understand how crazy you are after being holed up for 3 weeks solid, again insisted he must have gotten the cold somewhere, I knew it was time for a change. Then to add insult to injury, I explained that John was dealing with insane amounts of postnasal drainage. She mocked me, by making this stupid gutteral noise, telling me it wasn't drainage it was just the kid playing with his throat.

I had had it! So upon Ava's recommendation, John decided he wanted to see Dr. D. So on December 7th, our life took a crazy little turn. I had set up the appointment to "check on John's congestion for a possible sinus infection and evaluation for allergies". We left with a whole lot more to think about. The moment I met Dr. D, I knew we were in the right place. She was obviously a mom, and very understanding of my frustrations. She first gave John the full examination and then let me explain our situation. She totally listened to everything I had to say, and respected my instincts and opinions as a mother. Until this moment, didn't realize that was a possibility. Anyway, after getting John dressed she invited us into her office. Dr. D asked if we had seen an opthalmoligist. I said no, but said he seems to see just fine. And she agreed, but she was concerned about his shallow orbits (eye sockets). And asked if I had heard about Crouzon's syndrome. She felt that this might be causing John's breathing problems. I then proceeded to explain that John looks just like his dad and although I was grateful for this woman being very proactive and thorough, I just didn't think this was our problem. I was still hung up on allergies ;). So she sends me home with orders to get skull films made of John on Monday to check for craniosynostosis and a list of terms I could google. She also gave me her cell phone number if I had a freak out moment and needed some talking down.

Of course I googled all weekend and got a little freaked out, but was confident that on Monday, John's xrays would come back normal and we would be having the allergy discussion again. And this is exactly what happened. No craniosynostosis. On the 12th we were back in the office and John was finally diagnosed with his first ear infection. I am actually blown away by the fact that his little body fought it off for so long considering how long he hadn't breathed easily through his nose. So we started an antibiotic, which Dr. D was confident would eliminate a sinus infection if it was present too. I had no idea how hard it was to diagnosis a sinus infection. So within a few days, John is breathing again!!! Dr. D was still concerned about John's prominent eyes and features, so she asked us to go ahead and see an ENT just to ensure that John's ears and sinus' looked ok and that they were developing normally. So on the 21st of December we saw Dr. J. Not too impressed with this one, but she did confirm that John has ridiculously small sinus'. She also tried to test his hearing, but John is a noisy breather and they couldn't get any feedback. The hearing tester upset me a tad, when we walked into her booth, and she said "well, obviously, he is a syndrome baby, right?" Um NO!!! We already ruled that out...but I was shocked at my defensiveness and mother bear reaction. Poor girl was apologizing every chance she got for next 30 minutes that she was trying to get a reading from the boys ears. Anyway, we headed out that evening for Christmas in New Mexico, John having just 2.5 more days of antibiotic. Well, in NM we ran out of antibiotic early (by 3 doses) and John's nose got bad again and his ears seemed to be bothering him.

So the day after we got back I took him to see Dr. D, but she was out on vacation, so we saw Dr. K (loved her too) and John was diagnosed with another ear and sinus infection, most likely the same ones, but he also seemed to have a cold. He was pretty miserable. Another round of antibiotics, ugh, poor thing gets awful diaper rash on antibiotics too. Oh and a side note, Dr. D called us when she got back from vacation just to check in...love her. We saw Dr. D on John's birthday for his regular checkup, the day after finishing the antibiotics and all looked good. Until about 2 days after that and the congestion came back in full force. We talked with Dr. D and she wanted to hold off and see if this one wasn't a cold.

So in the mean time we had an appointment set up with an ophthalmologist whom we saw on January 17th. John was a perfect angel for this appointment. She dialated his eyes, she tested his pressure by sticking this proby thing directly on his eye ball, the whole thing took over an hour and John just seemed fascinated by her little lights. Dr. W was concerned. Although John's vision seemed to be fine (save the minor astigmatism so generously gifted by his dear mother), she saw what appeared to be enlarged optic nerves and was concerned about some sort of pressure going on in John's head. She wanted him to get an MRI. She had previously spoken with Dr. D and gone through her concerns and an MRI would be helpful in looking at those issues as well. So I called Dr. D on the drive home, a little anxious, but she calmed me down and told me this MRI would be great for seeing what is going on with his eyes, his sinus' and we could check out that beautiful brain. So now, I finally thought, Dr. D is onto something, my mommy instincts weren't working and I was questioning everything. At this point I am so grateful to Erin and Jeremy for leading us to Dr. D and getting this chain of events started, but quite a bit nervous about the MRI. I just didn't want John to have a bad experience. Well Dr. W was crazy amazing and got us in for an MRI at Children's the very next morning.

6:30 am we are opening the purple pavillion. No one else was there, so I quickly realized that they had me get the baby there early so that not feeding him would be easier. And it worked, he was distracted by these new surroundings and didn't even seem to notice when his morning milk and breakfast were missing. John was the best little guy and really amazed me with how tolerant he was to all that was going on around him. They tried to get an IV in for sedation, but missed twice. The kid didn't even cry. Just watched with a focused intensity. They ended up using laughing gas and gas sedation so that they could get the IV in while he was asleep. They let me hold him as he was getting the gas. I thought I was totally prepared for him to "go to sleep" but it was much harder to watch than I was expecting. He really collapsed into me quickly when they helped me to open his airway and lay him on the MRI table. I leave and sit in the waiting room for what has to be the longest hour of my life. But I was good. We were moving along and we were finally going to find out what, if anything, was wrong. Afterwards, they called me back to his recovery room, where he is groggy, but smiles as soon as he sees me enter the room. I still get teary thinking about it. He was precious laying there on that big gurney. And as he woke up he was hilarious. Giggling and just being plain goofy, blowing raspberries and shaking his arms, they must have felt funny to him. They let me hold the floppy boy and give him some juice...and then once an hour had passed I dressed him and we were off. I was so proud of how well John did. On our way out, I requested that these results be sent to my pediatrician, Dr. D, in addition to Dr. W. They did one better and burned a cd with the images.

We headed home with instructions to take it easy and let John nap all day. I have to admit I was a little excited about that and wanted to ask for some bottled up sedative for the rough days, but refrained. And it didn't matter anyway, John wouldn't hear of it. He was wide awake, except for a 45 minute nap. But he was in the best mood, so it was great fun.

Within an hour of getting home, I got a call from Dr. W. There was "bad" news. She totally had me a mess, but Super Erin (she does so much) swooped in and ran the cd over to Dr. D's having me to believe that she was going to have Ava's ears checked anyway. Sneaky devil. And Dr. D called me within minutes. She read the report verbatim to me, and helped me to understand what was going on. John's optic nerves were enlarged and his optic discs were flattened. It appeared that something was causing pressure in John's head, but it was not a tumor, it was suggested that it could be some sort of craniofacial anomaly. Recommendation is made for an MRV to exclude venous outflow obstruction and a spinal tap to check for increased intracranial pressure and to rule out PTC (not likely with his age). Oh and the boy has a terrible sinus infection. Dr. W wanted us to see a craniofacial surgeon and a neurosurgeon. In my mind, things had gotten serious fast. Up until I got that phone call from Dr. W, I never allowed myself to believe that anything was wrong, and now things seemed to be very wrong.

I quickly got my composure back together after talking with Dr. D and got on the phone to a craniofacial surgeon that Papa had recommended. Dr. D's husband is also a plastic surgeon so she was placing her calls too. Miraculously we got an appointment for the following Monday afternoon. I asked Tate to go to this appointment with me, as my explanations were not satisfying and I felt like his anxiety level was higher than it would be if he could hear this information directly from the horse's mouth. So Monday morning we enjoyed a nice breakfast out as a family and a good nap before we loaded John up and headed back to Children's. This office was crazy! We got in almost 2 hours after our scheduled appointment, but no one heard me complaining as we were getting seen so quickly, and obviously it wasn't easy to arrange that appointment looking at the waiting room. Dr. B met with us, and looked at John. He wanted us to see the neurosurgeon for sure and looking at John and the prominent ridge where the skull bones fuse (the metopic suture), he was interested in a ct scan. I wasn't expecting this as I thought the skull films had ruled out the craniosynostosis issue, but if we need to get more in depth tests to rule it out, then let's do it.

So they took some photos of John and sent us on our way. We were being connected with a neurosurgeon, Dr. S, and after Dr. B's nurse spoke with him, it was decided we would get these 3 tests done prior to meeting with him. Dr. B's nurse got busy scheduling these appointments, as did Dr. W's scheduler. I am feeling confident at this point that the best are working on John's case and having all these specialists gave me great peace of mind. I was rather anxious about the spinal, but they ensured me that he would be sedated and that babies don't have the issues that adults do (headaches, etc). I wondered, though, if this is because, babies can't tell you they have headaches...but ok.

Scheduling of the 2nd MRI (or MRV) took much longer, but in the meantime, John started a much stronger antibiotic to deal with that sinus infection that had obviously consumed the boy for about 3 months. The anger I feel towards that one pediatrician at our old practice is undescribable. For her to mock me and insult me, once this is all over I think I will send her a nasty little note, or perhaps a visit will do.

Anyway, John's MRV was finally scheduled for February 6th. I had contacted Dr. D and tried to understand if all of these tests were necessary at this time or if we could get a test done and then decide if further testing was necessary. After placing some calls and coordinating the ophthalmologist, the craniofacial surgeon and the neurosurgeon, it was decided that the ct scan could wait, but that we needed to get the MRV and spinal done. So with that I requested that the two procedures be done concurrently so that John would only need to be sedated once. This was a little bit of a hastle but it was arranged so that the spinal would be done down the hall after the MRV was completed.

So Wednesday, John and I woke early again and headed to Children's for another round. I wasn't aware, prior to arriving, that John would need to be intubated this time since he would be moved between procedures and the anesthesiologist wanted to protect his airway. So I was not invited to be with John while he was being sedated, but he did ok when I handed him over to the nurse, she let him keep his paci and his babies. She had previously informed me that a radiologist would be contacting me on my cell phone to sign a consent for the spinal. I had thought a neurologist would be doing the procedure. But it seems the LP (lumbar puncture) was ordered to be done under flouro. I had heard this discussed but didn't know what that meant, and didn't think to investigate, but it means that they would radiate John to give the needle sticker boney landmarks. Well, I never got the phone call. Sweet Erin and Ava had joined me in the waiting room to offer moral support and a bit of a distraction, but Erin couldn't ignore my anxiety about the missing phone call. So the spinal was scheduled to begin at 9:15, so at 9:10 I am asking the receptionist why I haven't been called. She was somewhat rude, "If they told you they would call, then they will call. Now please return to the waiting area." EXCUSE ME!!! "Let me explain here. My child is scheduled to get a spinal tap done here in about 5 minutes. I have not signed consent. Unless this hospital wants to be sued, you will find out where my child is and why the radiologist has not called me." Being nice gets you nowhere. So phone calls are made, pages are sent, and I am ushered to the back, where someone is going into the room and I see John laid out on the table, intubated. He looked ok, so I was fine, but they asked me to sit outside the door. Again, as the nurse disappears behind the door, I speak loudly "I HAVE NOT SIGNED A CONSENT!" The radiology nurse comes back out and tells me that there is some confusion. Ok, what...tell me what the hell the confusion is! Quickly, the radiologist leaves the room and sits beside me. At this point, I am freaking out that something has happened to John. She tells me he is doing great. But she is uncomfortable with this procedure being done on such a small child.

Call me crazy, but I just assume that when a procedure is on the schedule that age is checked and that everyone knows what is going on at least a couple hours before the scheduled time. Apparently, not so.

Anyway, she goes on to explain that the LP under flouro is not typically done on such a young child as their bones have not yet calcified and the radiation is mostly pointless. Ok. That makes sense. So she does not want to radiate a child for no apparent benefit. Ok, thanks for that. "So who is going to do the spinal?" She does not do them unless they are under flouro. "Can we call neurology and have someone sent over?" She then explains to me that phone calls will be placed to find out why this specific procedure was ordered and what needs to be done. But they are going to bring him out of sedation. THIS WAS THE WHOLE POINT, THAT ALL THIS WOULD BE DONE UNDER THE SAME SEDATION!!!! I am thinking to myself, OK we won't be doing this today, as I am not comfortable with my child being sedated twice in one day. So they again usher me back to the waiting room so that they can bring John out of sedation and get him situated in his recovery room. About 10 minutes later I am called back to the reception area and again, no one seems to know who I am or what is going on. Our first MRI experience was wonderful, this one, not so much. Finally, someone lets me back, then I have to wait by a locked door for 5 minutes before anyone realizes I need to be let in. By this point I have left messages with the neurosurgeon, the ophthalmologist, and my pediatrician, asking for someone to explain to me what is going on. I finally get back to John and he is not a happy camper. I wish they would have let me be back with him as he was coming out, as they had with the first MRI, but he calmed down as soon as I got him and then the figuring out what was next was underway. I got a call on my cell from Dr. D, she was frustrated with the whole situation. Dr. S (neurosurgery) was not even accepting that John was a patient of his because he had not yet been seen, but this was because he wanted these tests done first, so do you want the spinal or not!?! Dr. W (ophthalmology) didn't know what to do, and I am still confused as to who ordered this test under flouro. I requested the printout of the skull films and the initial MRI, and have read them. This is not on those report recommendations, so it is either the ophthalmologist or the neurosurgeon. And no one is accepting responsibility...and it doesn't even matter. I just don't know why this wasn't caught earlier and correct arrangements were not made. The nurse gets in touch with Dr. S's nurse and again, they have nothing to tell us. She also gets in touch with Dr. W, whom I asked to speak with. Her recommendation is to go to the ER to get the spinal done. Not happening. I tell the nurse we are going home and will come back another day if we really need this procedure done. In the meantime, Dr. D calls with the results from the MRV. The one thing I can never complain about Children's is their insanely quick turn around time with these results! She explains to me that the venous flow is good, and that there is no indication of increased intracranial pressure! Seals the deal, we are not doing a spinal! I am still frustrated but so excited about these results! Dr. D also explains that the optic nerves are enlarged and the optic discs are flattened, so we will need to investigate this, but the fact that there is no increased ICP is great news to me. I call Tate who is understandably upset with the events of the day and explain that we are headed home. He is pretty livid, but I assure him that I have sufficiently yelled at everyone humanly possible and I am pretty sure poor Ann (John's nurse) is seriously contemplating retirement. I am also annoyed with myself because I finally look down at John in my arms and his eyes are wide with amazement/fear/who knows what else, as he has just witnessed this tyrade I have recently completed.

Side note: As chaotic as this day has gone, I can't express just how grateful we are to be living in Dallas and having access to one of the most amazing children's hospitals in the nation. Although things did not go as planned, my child was never in harms way and for this I am relieved. I do wish this scheduling issue would have been picked up upon prior to my child being intubated and laid out on the table, but I also am grateful that the radiologist did not jump into a procedure with which she was not comfortable and that she questioned the orders, albiet late. I received many an apology prior to leaving and many well wishes for John. Children's is a great place which experienced a little blip on Wednesday...and I suppose I might be a tiny bit sensitive on the subject of my child's care ;).

So this is where we stand. We need to investigate what, if anything is going on with John's eyes. It has been noted that John could just have normal large optic nerves, all the better to see with if you ask me ;). I am more concerned about his flattened optic discs, and have tried in vain to contact the ophthalmologist for the remainder of the week. I have placed calls with 2 other of Children's ophthalmologist to see if someone can't read the MRV results and let me know if we need to see a neuro-ophthalmologist at this point. Dr. D would be happy to wrangle this together for me, but she is on vacation with her children, and although she has given me her cell phone for such situations, I feel this matter is not an emergency and won't harass her until next week upon her return.

Other good news. For the first time in what is likely 3-4 months, John DOES NOT have a sinus infection! I am still driving him nutty with saline spray, as I want to ensure the current state of affairs holds steady...poor thing, but honestly this is his life. There have not been many days since this child was born that saline has not been part of his routine, and he will let me spray anything up those nostrils...as long as a bulb syringe is not involved. It was again confirmed with the MRV that John's sinus' are tine-insy, so this is something Tate and I want to investigate with Dr. D as well.

Oh and after John's release we headed home, where he practically asked me to put him in his crib, where he slept for a good 3 hours, allowing me a nice nap as well. He then went down for the night at 6pm. I know Tate was disappointed, as he didn't get to spend any time with him after John's big day, but I was relieved that the boy was able to rest.

All is great here in our household and we are eager to figure out what else needs to be done for our little man. We are grateful that he has met all of his developmental milestones and the MRI and MRV showed a perfectly healthy brain, and a normal developing skull. We have a bit of our journey to go, but so far we have been blessed with only good news and the sweetest boy on God's green earth. All this has reminded us how precious this little guy is and shown Tate and I the true meaning of parenthood. Protecting John is our #1 concern and doing the best by him is the most important of all our responsibilties.
Thank you to everyone for your continued concern and prayers. I will keep this blog updated with any additional news that we receive!