Tuesday, March 16, 2010

Lilly-Rose's surgery...

Doots coloring and waiting....
At school on fire safety day....

Three days post op...notice the chicken finger in her mouth..lol. Having a visit with Aunt Leisa and cousin Taylor.

Lilly had her surgery on March 5th. She has bladder reconstruction and ureter transplantation done at the Children's hospital in our state. It was one trying time for us. Not only was our oldest having major surgery...but, we were also having to leave our youngest with Barry's parents..which meant we would be four hours away.
Lilly was scheduled for 10:00 in one day surgery. We were told she had to be NPO from midnight and absolutely nothing..not even water after 9:30 AM. So after arriving we did not get back to a room until about an hour and half after getting there. Because Lilly's surgery was going to take roughly four hours...they said she would probably be his last case of the day. They ended up not getting her back until after 4:30 PM. All this time she could not eat or drink. She was so upset...she actually found dry cereal in my purse and fought her Daddy for it. We felt so sorry for her.
Her surgery was to be ureter transplantation. Basically Lilly was born with a half duplicated collecting system and she has two ureters on one kidney. So they would have to move both together since they work in conjunction with each other and they are also hooked together. They basically moved her ureters to another part of her bladder. They also went in and excised some of the left over pocket from the uterocele..we were under the impression this was all gone and removed in her first surgery...apparently some was still there. Then they rebuilt her whole bladder for function.
I posted this to family and friends and it explains everything:
Lilly is now home and doing wonderfully. I actually think she is doing so much better than we ever could have expected. She does have her moments where she is in a lot of pain and she is still trying to understand everything. Friday night when she come out of recovery she was crying. Her first words were "I want to watch TV"..lol. I told her she could watch whatever her heart desired. The morphine kicked in and they gave her two epidurals during surgery. So overall her pain level was very controlled. She finally knocked out on the morphine and slept for a pretty good while. About 3 AM she started screaming and they told us the epidurals would start wearing off by this point. They gave her toradol and then she asked that I snuggle with her..she kept saying all night that she disliked her IV and didn't want it. We told her that she had to leave it in until she went home and she replied "I pull it out Mama!" Later that night I heard a rip and then there was blood everywhere. She did rip it out and so a new IV had to be put in. The next morning the other doctors made there rounds and it was decided the tubes would come out. They snipped the stitches in her stomach to remove the drainage tube and then removed the cath. This put her in a lot more pain...so they gave her lortab. She then decided she wanted to walk to the movie room and get some movies. She could walk completely down there and while there she picked out the Candyland game. Shen then needed help getting back. We knew that took effect when she started accusing us both of cheating at Candyland, asking weird questions to the nurse..to which she would say "Hey doctor..", and she kept saying the chair was growing hair. After this the nurse gave her motivation to go home. We just needed her to use the bathroom and she made a deal with her. She would go potty and then she would remove the IV. I don't think I have ever seen Doots move so fast in her life! The ride home was good until she hit troy and started having bladder spasms. Once home she just kept asking "why". She just wants to know why the doctor cut her. She also does not want anyone to see her surgical area. She has about a four inch incision. She says that if anyone else see's her "Booboo" the doctor is going to cut them too. We have been explaining it to her on her own level why it was done. But, she still does not understand. She also will have blood in her urine for a few more weeks and this has scared her a lot. The first time she saw it she thought she was dying and we have told her this is normal and means she is healing. Right now she needs help walking and pretty much needs to just rest. We have encouraged her to walk just a little...the doctors have said a little walking will do her good..just nothing too physical. The most important thing is for her to drink as much as she can..which is painful for her bladder. The doctor said that day three to five will be the roughest days. This will be the days her body will try to heal and so it can be more painful for her. I have also talked her into pull ups since accidents do happen and seeing the blood freaks her out so much...to which she started yelling at me and saying I was trying to make her into a baby. She said diapers were for babies..eventually, I talked her into wearing one and trying it out. I had to come up with a story about it being for big girls. But, I managed:) She also has been wanting a lot of privacy...last night she kicked us all out of her room. She requested the door be left open and we "leave her alone." She also went from midnight to this morning without requesting any of her pain meds and slept the whole time during this point! I think she is doing awesome and much better than we thought. She has lots of plans already..."One day when I get better..I ......" She is also excited about not having fevers, infections, hospital stays, caths, or meds anymore. I explained to her that she would no longer needs these b/c the doctor fixed her tummy. Other than that..Em came home yesterday afternoon. Oh, I could have just ate her up..lol. Last night she started crawling a little bit and she can not sit up completely on her own...with no help. It was almost like she was saving it for us. We called Barry's parents to say we were home and she was taking a nap...so they were going to wait until she woke up. They were going to ask if they could keep her another night...thinking it would be easier on us..but, a little while later we called again wanting to know when we were leaving..lol. Barry's Dad said he told Barry's Mom..."Crystal's wanting her baby back.lol" So he brought her on. They are coming for a visit tonight and bringing supper for us..which is wonderful we do not have to cook. My parents are suppose to come too and Lilly has been asking for them. She said everyone can come..but, they just can't see her incision or touch it. She doesn't even want Emma to see it and covers herself with a blanket at all times now. I think things are going much better than we anticipated. The Lord has healed our Daughter and is bringing us through the recovery process. He is a awesome God. We have worried about this day for three years and it feels like it was a huge blessing. To know your child will be fully healthy and not have to go through all things she has in the past..to know they are fully healed..it's one of the best feelings on Earth. We have worried for so long and now it just feels like this huge weight has been lifted off our hearts and shoulders. It's amazing to me at how well she is doing and to never worry about the things we have in the past...it's a loss of words.
So how is she after her March 5th surgery?
WONDERFUL!!! She hasn't slowed down a bit. They had fire safety day and a St. Jude trike a thon at her school. We arrived to get her school work that day and I had completely forgotten about this event. She was able to participate with her class in everything...yep, everything. Thanks to a wonderful friend at school...she let Lilly use her bike to finish the safety course...so she was riding a bicycle one week post op!!! As of today it no longer hurts when she urinates and I have not seen any blood in her urine for about two days now!! She is doing awesome and the surgery was a complete success!

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