Surgery update 2

Ok....sorry it has been a long week. Wednesday Maria went back into surgery for her spinal fusion. She was taken in around 11am and didn't return to the room until around 12:30am Thursday morning. Everything went well with ortho surgery and plastics went in and finished up. By the way I love the plastic's surgeon! He is such a sweet grandfatherly type. He explained that it was harder to close because the spine in now longer. Once again when Maria was brought into the PICU room she was fighting sedation....her poor face was puffy from laying prone for so long. She wasn't in the room 30 minutes and she was wanting to write what she needed....and when I couldn't understand her writing I got hit with the pencil (it didn't hurt, more her showing her frustration). We finally got her taken care of and tried to get some sleep. Fairly certain she didn't sleep at all that night. Thursday all the tubes came out and I got see the before and after X-rays of her spine....wow is there a difference! We had a fairly quiet day with her resting....she did take a short nap in the afternoon....but in the evening she starting having some issues related to a combination of the pain killer, fever and not enough sleep. Her nerves in her good leg were also firing (which was great). I finally got her to sleep and relax. Thanks to my peppermint oil, her fever also went away.

 

Friday we moved out of PICU! We ended up on the second floor with probably one of the best nurses I have ever met. She requested us the next two days for continuity of care. Plus she fought with one of the PICU doctors about what was best for Maria...and won. Moving also meant not as frequent check ins, which gave Maria more down time. By this time Maria was frequently voicing her desire to get out of the hospital.

 

Saturday started off with our favorite nurse telling me that Maria's potassium was low and so was her hemoglobin level. So, we started off the day with her getting both of those. We had visitors....I met a mom of a darling little boy with SB who is up in the NICU. It was nice for her to have someone to talk to. Our homestudy social worker made a visit to complete the last of our post placement reports. And then good friends from Chicago came down to see us. Both of us were so tired we weren't the best company, but it was nice having friends around.

 

Sunday brought grandma, liquids and sitting up a little bit....my mom has been great giving me a little break from the hospital and allowing me some time at work. Truly this has been hard for me....I know Maria is in good hands and I want to be with her, but I also have to provide for her...which means I have to work. Hard balance and difficult at times like these. Right now Maria is in good hands and getting lots of grandma time. I do plan to spend at least Thursday with her at th hospital. From the several phone calls today I was told that Maria is eating solid foods again....I'm sure she is happy. She also got to sit up more today! PT came by and saw her. Everyone at the hospital is thrilled with ooh ow well she is doing. Seriously she bounces back quickly.

And Maria....well Maria is ready to get out of the hospital, be done with surgeries and she is excited that she is now 4 inches taller!

 

 

 

Posted with Blogsy

Update

Yesterday was so long. We finally saw Maria around 11:30. She was fighting sedation medication and had tubes breathing for her. It was extremely hard to see and it instantly made me cry. But I also saw hope....I saw her follow instructions squeezing her hands, move her left leg and nod that she felt the doctor touching her upper right leg. It appears that the doctors were extremely careful with her nerves so far. We weren't sure when they were going to take her off the breathing machine last night, so after a lot of debating I ended up going to a hotel to get some uninterrupted sleep. I was shocked when we came in this morning and she was wide awake with no tubes. Honestly I have been kicking myself all day that I wasn't here with her. But she has done well. She isn't the most comfortable and has said several times she wants to go home. She has eaten and enjoyed watching tv most of the day.

We were finally told the plan for the rest of the surgery. Ortho will be going in tomorrow to do her spinal fusion. Surgery is scheduled for around 10am our time. Her Ortho thinks it will be around 8 hours, but after yesterday I'm expecting longer. Plastics will go in and make sure everything is nicely covered and protected. So, tomorrow will be another long day for us. We have felt so loved and supported. Friends from all over on FB have been sending us love and prayers. Many messages from our friends in Bulgaria and Switzerland.

Maria really is bouncing back quickly. The doctors are amazed at how well she is doing.

 

 

Posted with Blogsy

The day that still hasn't ended

Seriously this feels like the longest day and we have had some long days recently. Maria went in for the massive surgery this morning at 8am. I was told they had scheduled the OR for 13 1/2 hours, neuro would go first, then ortho and then plastics. My mom and I hung out, went out to eat, hung out some more and finally at 4pm were told that neuro was still in surgery and that Ortho had decided to wait on the surgery because it was what was best for Maria. The hours have continued to tick by....one after another. Eventually the surgery waiting area closed and we were sent down to PICU to wait. Time continued to tick....it ended up going by more quickly since I got to meet up with another mom of an SB kiddo. We chatted and finally got an update around 9:30 that neuro was done and plastics would be closing up the wound....another 2-3 hours. So, we are still waiting, hoping to see her sooner than later. Neuro said it was very complicated surgery, poor doctor looked so tired. We are tired too....just waiting for it to be over.

Posted with Blogsy

Surgery #2

Well, I finally got the call yesterday. The next surgery is scheduled for March 24. Yup just a little over a week away. This is going to be a big one....3 different specialties will be in this surgery. At least 2 neurosurgeons (jury is still out on them...great skills and zero bedside manners for one of them), our fantastic Ortho and plastic surgery. I have a feeling there will be many interns watching this that can....Maria's case is pretty unique. It is going to be a long surgery....Ortho alone will most likely take 8 hours.

So I'm trying to get things wrapped up at work as much as I can and prepare for this. It is going to be a big change for my independent daughter. I have had people ask if this will help her walking...the answer is no, it will be more limited. She might not actually walk again after this surgery. I believe that she will walk, it will just look different than the way she walks now and most likely she will not have the stamina to do the amount of walking that she currently does. Only time will tell, in the mean time we wait for that date and prepare as much as we can.

Posted with Blogsy

Surgery

Well, we made it through the first round of surgeries. The surgery got bumped to Thursday instead of Friday. I'm not going to lie, it was a LONG day. She was the second surgery of the day....we had to wait an additional hour for them to even get her. Needless to say that was hard on all of us. Surgery got over around 5, but I still had an additional hour to wait before I could see her. Then she had the post op nurse from hell. Seriously the woman was mean and grouchy....complaining about Maria whining and being emotional. We had to do a quick MRI and re-programming of the shunt before we got to the room. We didn't get to the room until around 7:30. Did I mention it was a LONG day? Well, as soon as we got rid of the mean nurse, I was finally able to get Maria what she needed....a drink of water, and magically all the whining and crying stopped....well, until the neurosurgery inter came in to check her shunt. We also got through an Ortho appt and met with plastics before finally checking out at 5pm on Friday....that was a LONG day too. We went to the grandparents house for an additional day of recovering and spoiling. Maria is actually doing amazingly well. She has no pain and is relieved that you can't tell where her head is shaved.

Pre surgery photo

Finally in the room!

Hanging out at the grandparents house. Grandma made homemade bread, yum!

Back of the head....now where is that shaved spot again? Thank goodness she has long thick hair!

 

 

 

 

Posted with Blogsy

What is going on

Ok....after a few days my head is a little clearer, I'm processing thing better and ready to share more about what is going on.

Maria's medical from Bulgaria focused on her Spina Bifida. There was no mention of her club feet or curved spine. There was no indication of hydrocephalus, even though 80% of people with Maria's type of SB have it. No shunt...no concerns. Maria has been developing normally....making great progress with academics.

So Tuesday started with over an hour MRI of her head and back. The neurosurgeon we saw had thought that the spinal leak might be due to extra fluid pressure in Maria's head....basically he thought she had hydrocephalus. The MRI confirmed that to be the truth...obviously with Maria meeting milestones and her natural intelligence and the size of her head being normal, no one really had any reason to suspect that Maria had hydrocephalus. The neurosurgeons think the leak is partly due to the pressure in the brain and are recommending a VP shunt be placed. We are currently preparing for this surgery which will occur on Friday.

The MRI also showed what was happening with Maria's SB. It showed that Maria has a split spinal cord....the cord actually divides into two cords around her SB level. From what I have read, this is fairly rare. Not only that but part of her spine is folded over on it's self and between to two parts of the spinal cord. In some ways tethering both parts of the cord so it cannot move freely. The cord needs to be together and something needs to be done with the vertibre between the cords.....then because of her very unique scar, muscles and skin from her sides will need to be used to cover the area and give her more protection in that area. This will be a very complicated surgery, involving neurosurgery, ortho and plastic surgery. There is a chance that there will be further nerve damage....

As if all that isn't enough, we still are dealing with the spinal fluid leaking out of Maria's back. The neurosurgeons are worried about it becoming infected....specifically about her getting spinal meningitis. So, Maria is out of PE and all sports until further notice. She cannot be on the floor, carry her backpack or lay on her back. We also have to keep the area clean, gently cleaning it with a wash cloth and covering it with gauze. I will say that since we have started this I have noticed the area become less pink and irritated looking.

With all this Maria, thankfully has had no symptoms other than the leak. No headaches, no loss of function, no pain. If anything her balance is better. She is strong and we will get through this one step at a time. Yes, there are going to be hard moments, but she is a fighter....we will be stronger when this is done. We have an amazing support system who has offered to help in any way they can. One adoptive mom and daughter even sent Maria a Amazon gift card which we got her some DS games for her to play while healing. Maria's school has also made plans to make it possible for her to have extra work time. They are even open to talking with Maria's classmates about what is occurring so that when she comes back the peers are prepared too. I know many wouldn't feel comfortable with sharing that type of information with their child's peers, but working in a school I know how important those teaching moments can be. Kids see the difference and need to see adults address the differences in respectful and honest ways.

I'm not sure how much time I will have to blog with at least 2 surgeries in our near future, but I will try to keep everyone updated on FB. I have been waiting to post more details there wanting to give a friend time to explain what is going on to the director of Maria's orphanage. That should happen before the end of the weekend. Until all is done please keep us in your prayers.

Posted with Blogsy