Friday, April 11, 2014

I am still a bit raw and emotional from LeiLeis' surgery

This week has been a challenge on so many levels. To say that I am happy it is over is an understatement. Although, its not really over, but at least we are done with the Childrens Hospital for the time being. It has taken me 24 hours to begin to write this post. I want to share with you LeiLeis surgery, but I am still a bit raw and emotional from the entire ordeal. When I decided to start this Blog it was all about being real, whatever life was going to throw at us, I was going to write about. There have been a few times when I have really exposed ourselves to all of you, and this is one of those times. It is not an easy thing to do, but both my Husband and I feel it is important to put everything out there to all of you. So bare with me...

LeiLei had surgery on Wednesday April 10. We had to check in at our local Childrens Hospital at 7:45 a.m. which was not so bad except for the fact that my good friend who was watching our other two kiddos lives in the opposite direction. So, we woke the kids up at 6 a.m. and had everybody out the door by 6:30 a.m. We quickly dropped our kids off at 7 a.m. and then took off towards the hospital. If you ever have the choice between taking your kiddos to a Childrens Hospital versus a regular hospital please choose the Childrens Hospital. It is magical in a very odd way. As much as you are not wanting to be there, you are very comfortable 'being' there.

We only waited a short time after check in. Which was filled with zooming around the waiting room in a police car.

We were then placed in our own room, where we were greeted by at least a dozen different nurses, anesthesiologists and hospital staff. LeiLei quickly suited up in her Tiger Hospital Pajamas. She is such a peanut that it took some serious cinching to make them fit.

Prior to your child becoming completely doped up there is a hospital staff (almost like a concierge) that does nothing but bring your child activities to keep them happy. Everything from coloring to balloons. She also checks in on the parents to see if they need anything. Really a nice experience. During all of the assessments they realized that LeiLei needed to do a breathing treatment. They had picked up a wheeze in her right lung. So before they started anesthesia they wanted to make sure her airways were clear.

Probably about twenty minutes after her breathing treatment they gave her an anti-anxiety medication (similar to Valium). They want the children to experience no anxiety when they separate them from the parent. They told us the pros and cons for the medication and we realized immediately that she would probably fall into the extreme cons just given her 'normal'  demeanor. That being said we still went through with the medication, since this was her first surgery. We did not know what the outcome would be and like anything in life, you learn as you go. We have learned this.... She will probably never receive that medication again, and actually it is now noted in the hospital file that she had an adverse reaction to it. She became immediately amped, It was actually kind of funny at first... Hubby and I did have a few laughs because she was being super silly, but that quickly turned to anger. Which was very alarming to say the least. At one point she looked right at me, pointed her finger and sternly said "I TOLD YOU TO..." ( I cant remember what the actual command was, but it was ugly). During the anger phase she began tearing the stickers off of her dads hands (that she had lovingly put on him earlier) Once they were off she was set on destroying them. The anger phase quickly (thank goodness) gave way to double vision. She kept asking us why there were two of everything. Then she told us her eyes were jumping. At that point I was starting to become concerned. It was also at this point that she was no longer able to hold her head up. Her words were no longer understandable and her breathing changed. It sounded like she was snoring yet her eyes were open. Now I was starting to worry... Then she began to drool which turned to frothing at the mouth. Within a split second her body stiffened almost as if she were having a seizure (but she was not). That was about the time I bolted out the door and grabbed a nurse who also brought in the Nurse Anesthetist. Both assured us that she was o.k. and it was not long after that, that they decided to take her back to surgery. It also was not long after that, that I had my first breakdown. The combo of seeing my daughters body fighting with that medication along with knowing she was going into surgery, kind of got to me.

Our 'Concierge' then led us out to the waiting room and told us what we could expect while we waited, and told us how to get to the nearest coffee stand as well as the cafeteria. Based on our previous conversations with the nurses we were expecting a procedure that would take about 15 minutes. We quickly ran down to the cafeteria so I could grab a soda, I am not a huge soda drinker but I was stressing and was seriously needing carbonation. The cafeteria has a very nice view of our city so we decided to hang out there instead of the depressing waiting room. By that point the waiting room was filled with families whose little ones were in Surgery and let me tell you that is just as depressing as knowing your own child is in having surgery... After maybe 10 minutes we decided to go back to the childrens surgery waiting room with all of the other stressed out parents. The minutes just ticked by 15, then 20 then 40. I kept telling myself that everything was o.k. but I was starting to worry a bit. Finally our concierge came over and asked us if we had spoke with anyone yet. When we told her that we had not she looked a bit puzzled and then went back to investigate. Again we were all thinking this was going to be a 15 minute procedure. About 15 minutes later she came back and said LeiLei had just been brought over to the recovery area and we could go sit with her.

That was a sigh of relief. Although I was not expecting to have my breath taken away when I first saw my daughter in that hospital bed all hooked up to machines. That is definitely something I wish on no parent.

After some time the Doctor arrived and began to go through everything with us. I wish I could remember the entire conversation but I can not. You see, he removed the toe nail as planned but instead of finding a bone spur (which is what he originally thought she had) he found a tumor. It was in that moment that I no longer heard anything that anyone was saying. I put on my brave face, and said o.k. quite a few times. My husband became even more quiet than I, he just stood there. Neither of us could believe what we had just heard. At no point had anyone mentioned the possibility of a tumor, so it was a complete shock. As soon as the Doctor and the majority of the nurses left I sat down in the rocking chair and had my second melt down of the day. It was all catching up with me, and I could no longer wear my brave face.

LeiLeis nurse decided to continue to let her sleep after she had found out about the adverse reaction to the medication she had taken earlier. Apparently when kids have reactions to this medicine it is quite common for them to wake up swinging. She decided to let her completely sleep it off. Truthfully, I was o.k. with that. I still needed to gather my self so that I could completely be there for my daughter when she woke up.

Amazingly my daughter woke up as if nothing had happened. It was the oddest thing I had ever witnessed. She was smiling and talking and wanting to eat and drink. Not to mention, she looked gorgeous!

She definitely does not get that from me. I always come out looking haggard and just sick to my stomach. We stayed there for probably another hour and then made the journey to go pick up her bother and sister, and then back home.

She has been doing so well, allowing her foot to rest both yesterday and today. That is no small task for any of my kids. My kids are far from the couch potato type. They are on the go at all times, so I am super proud of her. So now we sit and wait... We are hoping to hear from Pathology today. I would really like to receive some good news right before the weekend. I really do not want this hanging over our heads the entire weekend.

It has been a hard week for us, and I want to say thank you to all, for the well wishes we have received. As soon as we learn more, I will keep you all updated. I hope you have a wonderful weekend...


  1. You are such an amazing woman and friend. Keep strong my friend. I am here if u need me. Remember crying is releases stress. My shoulders are ALWAYS here. Love u all....-B

    1. Thanks B... Friends and family like you, are what keep me strong... Love u...

  2. Yep, you & Evan are strong,,, but remember to take time to breath and like B said,,, cry, if need be...
    Give my grandkiddos hugz & kisses from us... ILY all so very much.

  3. Thank you for sharing your experience. What a scary time for you and Evan. Rudi and I are sending good thoughts and prayers your way. Hugs and kisses, Aunt Linda

    1. Thanks Aunt Linda, I am waiting for good news from Pathology...

  4. So glad everything went as well as could be expected. Praying for good news from pathology. Keep the faith... Love ya all

  5. Ty and I have been praying that LeiLei is ok and you and Evan have peace in your hearts. Always just a Facebook message or phone call away. -Julie

  6. Thank you do much for sharing. I am of the belief that we need to share our experiences. You never know if someone NEEDS to hear your story.

    1. Michele that is why I started this Blog. I was feeling so overwhelmed with what life was throwing at us and thinking 'why me'... Then I realized that only when you ask mothers specific questions do you find out that they too have gone through similar situations, they just don't talk about it. I think that is a shame, we should be open about what happens in our lives, we could be a lot more supportive of each other if we understood what was really happening in each others lives. Glad you enjoyed the post...


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