Blogging From Chicago-A very long post!

First I would like to say thank you to everyone who wrote, called, e-mailed and messaged me/us about this whole situation with Arianna.  I haven't had a chance to respond to you all yet, because things have been incredibly busy around here, but I am going to do my best to sum up our week in this post. 

We drove down to Chicago (my parent’s house) on Sunday. The drive was about 6 hours for us. Thank God Jeremy’s Dad had a portable DVD player that he let us borrow, because it was a lifesaver. We had an appointment Monday at Children’s Memorial Hospital in Chicago. Upon walking into the hospital, the first thing I saw was a “model” hospital room for kids. So families that were new to the hospital could let their children explore it and get acquainted with the room they might be staying in. This was the first of many times that I teared up that day. As soon as I saw it, I thought of Ari having to stay in a room like that, laying in a tiny hospital bed hooked up to machines 


We went in for our appointment and had a few helpful nurses along the way, who were all especially great with Arianna. Our appointment with Dr.Chin went pretty well. He is a pediatric surgeon. The things he discussed were our options.



1.Biopsy. To find out if this lump is cancerous. In his opinion, if we were going to put Ari under and go that far, we might as well just have the lump removed.

2. CT Scan. This would scan her neck to see a more detailed extent of the lump. As of right now, we have only had ultrasounds done. CT scans are quick and efficient, but are risky but they expose the baby to radiation. Not a good thing.

3.MRI. This is what Dr.Chin seemed to be leaning towards. It takes much longer than a CT scan and has different types of risks. A child would be able to undergo an MRI with sedation, as the MRI requires then to hold completely still without moving at all. Babies…they have to be put completely out, general anesthia and the works..because, well, think about it; babies don’t ever hold still! What I took from his explanation is that at certain points of an MRI, you have to hold you breath and babies can’t do that, so when they are put under, there is a machine breathing for them, so that their breathing can be controlled. I hope I explained that right.

Dr.Chin went on to tell us that he plans on discussing Arianna’s case with his team of pediatric surgeons to get their opinions at their meeting which was the next morning (Tuesday). At that point, he was leaning toward an MRI. We were told that MRI’s can sometimes have a 4-6 week wait. He knew that we had driven from Michigan and said that he would push for us to get one this week if necessary. We left with him telling us to call him the next day, sometime after 12-1 P.M. We also left feeling very confident. Dr.Chin was thorough and patient and everything you could want in a pediatric surgeon ::gulp::

As I went to bed, I thought about how the next day would play out. Lots of phone tag and hopefully, maybe getting some kind of answer. I was not very optimistic. Remember how our last two weeks have been with waiting for calls from Doctors? We woke up and headed downstairs to eat breakfast at 8 and an hour an a half later, Jeremy ran into the room telling me to check my phone, that he had two missed calls from the Dr. I did too. Wow. It was 9:30 and he had called both of us around 8:15. Seriously? I felt stupid for not having my phone by my side, and was in shock that HE called US first..and at 8:15! How nice, to finally have someone who was helpful. When I called back, he was busy and I was told he would get back to us in about 45 mins. He called back almost exactly 45 minutes later. What he said was the he first wanted another ultrasound done. This was a different type than the one they did at Marquette, it showed the blood flow in a different way. He said he made an appt for us that day. He also said that his team had collectively decided that an MRI would probably be the best option and that there was a possible opening for one that day (depending on what the ultrasound showed). We headed back to Children’s Memorial..

The radiology department at Children’s, is in the same wing as the Pediatric ER. I literally saw kids being wheeled by on stretches while we waited for our appointment. It made me so sad…and also glad that I had a child that didn’t have some sort of fatal illness or birth defect. We saw a TON of kids with major problems. All over the place. It was seriously really, really depressing. They tried to make the hospital as bright and happy and fun of a place as possible for those little guys ( and did a great job at it).



The ultrasound was done in a timely fashion and we waited for a few hours for Dr.Chin to come talk to us. He was doing a surgery in the PICU. Scary. During our wait, he called me 3 times, to apologize and let us know he was trying to get to us and that he had good news for us, but needed to still talk to us about a few things. Dr. Chin, I love you, seriously. When we finally got to meet with him, he told us that the first bit of good news is that Arianna’s lump looks very superficial, as in NOT DEEP. Awesome. The second thing he told us was that most of the surgeons he shared her case/info with said something along the lines of, “does anything really even need to be done about this?” Meaning, it didn’t seem very serious and no one was very concerned that this needed to come out anytime soon. We were then told that MRI’s should only be done when the child is at their optimal health. Well, Arianna has a cold right now, which has triggered her asthma, leading to somewhat labored breathing. He said that if we lived across the street, there is no way he would do an MRI that day and that he doesn’t want to do it just because we are from out of town, for convenience. Totally understandable.

We left with this message. Arianna’s lump is no threat to her health, as of right now. He would be perfectly fine with leaving it and just monitoring it a few times a year. HOWEVER, we would NEVER know if it was cancerous. He straight up told us that he has had cases exactly like this, that everything looked fine and the lump was left alone and it DID turn out to be cancerous. He also assured us that he understood the anxiety that would come with leaving a lump in your child’s neck…and never really knowing what it may turn out to be. Why not just do the surgery you ask? There are lots of risks with surgery. Nothing extraordinary, but when you put a tiny little thing child under anesthesia and cut them open, there are always risks. He said he was confident that the surgery would be fairly simple and most likely an outpatient procedure (if there were no complications). He also said at this point, he would call the surgery elective. We were to go home and talk about it as a family, and let him know. If we decided we wanted it done, we could probably call a week in advance and get it scheduled.

So, that is where we stand. Thank you all for the well wishes and of course I will keep you updated!


 
P.S. 15 weeks this week!!!