Tuesday, June 10, 2014

Not a Great Month Part Three

The week leading up to Madee's surgery was full and stressful, but we were anxious to get it over with. Because of the mass blocking her nose and the cold she wasn't sleeping well at all and she had really gross stuff coming out of her nose constantly.

^^Tim also started summer semester of school and did a lot of homework like this.^^

Our neighbors were incredibly supportive and helpful, and we never had any trouble finding someone to pick up Ty from school or watch our boys while we took Madee to her various appointments. It was very humbling to be on the receiving end of so much service, and we were so grateful to have such amazing friends.

The day before Madee's surgery, we had a little party for Boston's birthday and then my Dad and Tim gave Madee a beautiful blessing and they also gave me a blessing. After that I  felt so much more at peace with the situation.  My parents took Tyler and Jaxen home with them since we had to be at the hospital so early. We kept Boston with us because he is still nursing in the evenings and mornings. We let Madee stay up later than normal and let her eat a big bowl of cereal before putting her in bed.

We had to be to the hospital very early, and Madee wasn't allowed to eat or drink anything so we made sure we were all ready to go before getting her up and putting her in the car. I didn't want her to help herself to a drink while we weren't paying attention. We dropped Boston off to my brother, David, who lives near the hospital, and he took Boston to my parent's house. Madee was mad she couldn't stay and play with David, but was happy to be going to the doctors and to be wearing cute new pajamas (both her Grandma's bought her new pajamas) and to have both of her parents undivided attention.


We kind of felt like hospital pro's because we knew right where to go and what to expect and it was the same nurses who had helped us the two times before. Madee was excited to play with all the fun toys they have at Primary's but every so often, she I think she would remember what was going to happen next and would climb up in my lap and say, "I'm scared... I want to go home". It was heart breaking, but there were so many distractions that she never stayed in my lap long.

We got her all checked in, and changed into "hospital pajamas" and talked with her surgeon. He told us he would likely have to remove her tonsils (which were also enlarged) in order to get to the mass. He said the surgery would take about 45 minutes.



They have (what I think are called) Family Life Specialists, that are mainly there to keep the kids (andp parents) happy and help them to feel more comfortable. The last two times Madee had been to the hospital, we had had the same Family Life Specialist. She was so sweet with Madee and it made things so much easier (I sure wish I had caught her name). The same girl was there again, but they were so busy, she hadn't gotten to Madee yet when it was her turn to go back. The anesthesiologist came and got her and we tried to keep her distracted and happy and let her ride in a toy car back to the operating area.
But as soon as it was time for her to get out of the car and go with the doctors she started crying and didn't want to let Tim or I go. It made my heart hurt. I told the anesthesiologist that last time they had light up toys and she went willingly. So he went back to get some toys and came back with light up toys and the Family Life Specialist. Madee happily went with her, which made things much easier for us.

Tim and I went to the family waiting area and ate some snacks. The Family Life Specialist lady came and told us that she did just fine. The Anesthesiologist let her hold Madee while he put the mask on her and put her under so Madee wasn't scared at all. I was so relieved. I am nursing, so I was starving and ran down to the cafeteria to grab something (besides the cookies they had there) to eat. On my way back up to the waiting room, I ran into my next door neighbor who was there to have her daughters broken arm looked at. It was really random and surprising because we live 45 minutes away from the hospital.

We only had to wait about 30 minutes before the surgeon came and got us. He said the mass came out quickly and she didn't lose much blood. It appeared to be a rare kind of cyst, but that we would get the biopsy results in a few days. We were so so relieved! They took us back to Madee shortly after. She was starting to wake up and was in pain and was SO MAD. She drank a little bit of juice and they gave her more pain medicine and she conked out. Shortly after that they took us to a recovery room.

 She slept for another hour or so and when she woke up she was very confused and very sad. She hates having an IV in her foot and was very focused on that. They got her situated on my lap in a chair and she spent pretty much the whole day there.


She ate surprisingly well. She ate four pancakes just a couple hours after surgery, and continued eating (soft foods) pretty well throughout the day. She slept a lot and we watched a ridiculous amount of Disney movies. I didn't think about the fact that she was wearing a diaper, and between the IV fluid and the drinking she was doing it got very full. I didn't realize until it had leaked all over my lap. She was very clingy, and I didn't have a change of clothes, so all I could do was change her and pat my lap dry with some paper towels. The nurses were all impressed with her mad facial expressions every time they came in to check her vitals. She wouldn't let them check her blood pressure unless she picked which arm they put the cuff on and she wouldn't take the medicine unless I gave it to her.... but as long as she had some say in the matter, she would let them check her vitals and take her medicine.

I stayed with her until about 9pm and then I got her settled with a clean diaper and fresh pajamas and tucked her into the huge hospital bed with her Dad. She wanted me to hold her all day but she was more than happy to snuggle up with her Dad and go to sleep.... and by sleep I mean stay up until midnight watching more Disney movies until finally falling asleep.



 It was incredibly hard to leave her there, but she is a huge fan of her Dad and I knew she'd be in good hands. I went to my parents house to check on the boys, nurse Boston, and sleep for the night. I went back to the following morning and she was ready to be released early that afternoon. They let her ride out in a wagon, which she loved.
Last time we were there, they sent her home with a blanket that she loves. She was super stoked when they gave her another one.
The two weeks following her surgery are kind of a blur. Some days she did really great and we were able to keep her pain under control and some days she was a hot mess and needed a lot of snuggling and back tickles. Her throat and sinuses hurt her much more in the night which was rough, but she was a trooper. There were a couple of times she became hysterical while she was eating or trying to sleep because it hurt so badly, but it was nothing a dose of lorotab and funny cat videos on youtube couldn't fix. It was heartbreaking when she was in pain and there wasn't much I could do for her, but she always amazed us with how resilient she was. Madee was also pretty hilarious when she was medicated...

Like this moment:

And these...



We got her biopsy results back the following Monday and the pathology report said it was a benign Thornwaldt Cyst. We were so thankful and relieved to find out it was nothing serious. Thornwaldt cysts are extremely rare in children, especially females and can sometimes appear like solid tissue in a CT scan. They usually don't get as big as hers was either. At her post op appointment they checked her out and everything was healing very well. She passed her hearing test which was a big relief to me. Her ENT also said they may be writing Madee's case up in a medical journal because of the rarity of it. He's only seen two thornwaldt cysts throughout his practice and they were both in older men and they were both significantly smaller than hers was. I'm glad she's so special....

She's now doing great and you'd never know there was ever a problem (if you don't count how she relapsed in the potty training department). She's back to her normal, happy, energetic, stubborn, adorable self (but with a higher voice). She's sleeping through the night and breathing through her nose. It was a very difficult month, but we came out stronger and with a greater appreciation for what is important and for our healthy family. We were incredibly thankful for all of the thoughts, kind words and prayers that were given on our behalf. Not to mention all of the friends and family who brought dinner and watched our boys. We were overwhelmed by how many of our friends and family members put Madee's name on the prayer roll in temples all over the country. It was a scary experience, and we feel fortunate that it had a happy resolution. We grew closer together and I think it put some things in our lives into a proper perspective.

Madee has always been a fearless little girl. This quality about her has sometimes been a trial, but for this experience it was a huge asset. She handled everything amazingly well. We love her so much and we are so grateful that she is healthy.

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