I believe it started around the 2 month check up in November but at the time, we had no idea...
I took Thomas into his 2 month check up and explained to our pediatrician that when I lifted Thomas up to change his diaper, I noticed a little bump on his back at the base of the spine.
We confirmed at the appointment that it was only noticeable during a diaper change and it was simply the bend in the body.
In February 2010, I noticed the lump was always there..I called the pediatrician and I took Thomas in. The pediatrician made a phone call and Tom and I took Thomas in two days later for an ultrasound. The ultrasound determined a lipoma(soft tissue tumor) at the base of the spine. Our pediatrician suggested we see a dermatologist to be sure and discuss removal options.
On March 4th, Tom took little Thomas to the dermatologist. The dermatologist explained that she could not be 100% and that we should get an MRI and would need one anyway for the surgery. The MRI was scheduled for March 24th. We would also see the surgeon at 1:00 this day for a consult.
As his mother, I was very anxious about the procedure. I was scared about him having to be induced, I was not looking forward to going to the city to the "big" hospital...I was trying so hard to let it all be in God's hands, but I was really scared to hand over my little boy to these doctors and nurses whom I had never met.
The morning of March 24th came and Tom and I caught an early ferry into Seattle. I was relieved when we parked the car in the parking garage and felt that so far, it was not that hard. We found our way to the check in desk and were taken up to the PICU where we met the staff. Everyone was great and very nice and gentle with little Thomas.
It took the nurses a little while to get the IV into his tiny little hands...once this was done, it went pretty smoothly..I was able to carry Thomas to the waiting area for the MRI. I let the nurse have him and she took him to get sedated for the procedure.
While we waited outside, the surgeon came to talk to us so that we would not have to wait in Seattle until later that day to see him. He was very nice and explained what he would be able to do for us. He told us he would like to look at the MRI really quick and he would be right back. He was back within 10 seconds and politely told us the words I will never forget, "I will not be able to help you. It is what we had hoped it was not. You will need a neurosurgeon."
I did not understand what he meant by this at first.
He told us he would go ahead and call our pediatrician and see what he could come up with.
Tom and I just sat there not really knowing what to think or to say...at one point I remember Tom saying to me..."well, this sucks."
The surgeon came back a little while later and explained he had talked to the pediatrician and they both recommend we see this neurosurgeon and he was able to get us in that afternoon at 4:45 and gave us the number of the office. I called and let them know we would be there.
We waited for the MRI to be over and followed the team back to the PICU with our little baby boy...
No one would tell us anything....we had not seen the MRI and did not even know if the doctor we would meet with later that day would tell us anything...
We waited for little Thomas to wake up from the sedation and we were released about 12:30. Luckily we had some friends to meet up with, so it took our mind off of the reason for being in Seattle for a few hours..We had lunch and walked through the park with our friends and caught up....
4:45 came to soon yet not soon enough....
We arrived at the office about 4:30 and filled out paperwork and waited while the doctor finished with his last few appointments for the day...
At 5:30, we were called into the appointment we will never forget....
We sat down and introduced ourselves...the doctor seemed nice and helpful...
The doctor pulled up the MRI and began telling us what was "wrong" with our child's spine....
Being in the moment was truly unreal for us...we were totally caught off guard and truly shocked to hear what we were hearing...
The doctor explained that Thomas has Lipomyelomeningocele with tethered chord and chord syrinx, spina bifida. These words were foreign to me...everyone from this point on was so sure it was simply a Lipoma and we would just have it removed and it would be fine....now, this guy is talking about paralysis and other common things that could happen to our son...
some how and as I write this over a week after this appointment, I am still unsure how I did this, but I started asking questions...little did I know that I would leave out a few important ones...
How long is surgery, what is recovering like, how long for hospital stay, will this happen again, best outcome, worst outcome..the list goes on...
We left the office with a general idea of when our surgery would be and while we were still shocked-it really felt like this doctor knew what he was doing and it would be ok....
Surgery was scheduled for April 12th. We made it through the days leading up to the surgery.
Tom's dad took the girls to Spokane for the week since we would be at the hospital that week. Our friends opened up their home on Mercer Island for us to use while they were on vacation.
We went over to Mercer Island the night before with little Thomas.
Monday, April 12th, 2010The morning of the surgery we had to be at Swedish at 5:30 a.m. We did all the prep work with the team, and then they took our little Thomas from us at 7:45 that morning. Tom and I could not sit around and wait, so we walked a few blocks and had breakfast then went back to our little waiting room and waited...they told us about 3 hours for the surgery. We never saw little Thomas get hooked up to anything for the surgery, we never saw the breathing tube, all the wires he had or him totally knocked out.
At 10:45, the doctor came and told us the surgery went well and he was recovering and we could see him shortly. We were escorted to where our little man was recovering and could not believe our eyes. We were so very thankful that everything went just fine and our little boy would be ok.
Our little boy after surgery.....
We stayed with him the couple days he was in the hospital. He was pretty sedated the first day and a half because he had to stay horizontal. He grew very tired of this however and wanted to be up and moving around.
We thought we would have to be in the hospital for longer with him, but he recovered very well and was ready to go home Wednesday afternoon.
