It has been a long time since my last post, and that "long time" has been filled with a whirlwind of events.
Lexi's surgery went well, but her recovery was really hard on her. She was extremely sick and in some pain for a full week. My surgery went well, and after three days in the hospital I was released thinking I would be home to snuggle with both the kids and recover with Lexi. Boy was I wrong about that.
Ten days after Lexi's surgery, she began to hemorage in the middle of the night. After a trip to the ER, to be told, "whatever it was has stopped, eat a popsicle and go on home", I called her surgeon in Amarillo who told us to get her up there ASAP to be examined. After seeing her surgeon, who removed a couple of blood clots in the back of her throat, said that she should be fine, but to linger around town for an hour before heading home. After an hour and a half wait, the ride home began. No more than 20 miles towards home and she started hemoraging AGAIN. I called her surgeon as she was rushed back to the clinic. He once again found another blood clot (which had formed between the last visit and the next episode) and he injected the back of her throat four times with numbing medication. By this round we had decided to stay in Amarillo for the night to be cautious. Her surgeon told us that he saw nothing else to do and that we should take her to a movie and to dinner as we normally would, BUT if it happened again she would definitely be going into surgery.
So ... we checked into a hotel room and decided on a movie to take her to after finding something to eat. All she wanted was the icing off of a cupcake and some ice cream, which I agreed to just so she would eat something, and the surgeon also said that cold foods would help keep her vessels constricted. Then it was off to the movies, where we watched The Princess and the Frog (super cute movie by the way) and she enjoyed a Coke Icee. After the movie we went back to hotel and got ready for bed. She was very tired, which was understandable, and we snuggled up to get a good nights sleep. Thinking the nightmare was over. But it was just beginning.
At midnight my daughter sat up in bed, grabbed my arm and began hemoraging yet again. I immediately called her surgeons emergency number and explained to the answering service what was happening. I waited no more than 2 minutes on hold before he was on the phone telling me to meet him at the hospital in half an hour. While making her gargle ice cold water (to constrict the vessels) we gathered the necessary items and was at the surgical center within 15 minutes where we found the staff waiting outside for us to arrive. They scooped her in, prepped her and off they took her to emergency surgery.
A little over an hour later her surgeon came back to the room informing us that the procedure went well and that she was in recovery. She had formed a few more blood clots which was allowing blood to continually run down her throat and into her stomach causing the hemoraging. He ordered a CBC on her for testing and told us to try and rest until later in the morning.
A few hours later, we were informed that she had lost 3.4 units of blood and that her clotting factors were well above normal, especially for a child. These results meant she needed a blood transfusion along with two plasma units to prevent more clotting while she recovered from this surgery. The thing with transfusions is that you need blood to cross-reference. She was severely dehydrated and low on blood. Various RN's and anethesists "dug" on her for a little over four hours, making 16 holes that were entered 30+ times to get a mere 2 ML of blood. They went in her arms, her wrists, her hands, her feet and eventually her groin.
During the last hour of attempting to draw her blood, all I could do was lay my head on her legs and pray. I was lifting my princess for the Lord to heal and to cover her in peace and comfort. At that time I heard the anethesist say, "I can't do this anymore. Not to her. We have to try something different." And as he pulled the needle up it flashed and the blood began to flow. At that moment I noticed 9 people in her room, around her bed, all praying and laying hands on her little worn out body simultaneously. When I say 9 people, I mean 9 people besides myself, my mother and my father. They were surgeons, RN's and lab techs.
Once the blood was drawn, it was a waiting game before the units arrived. The process of the plasma and transfusion took all night long. It began around 6:30 and ended at 8:00 the next morning. The poor night RN had her work cutout for her. With Lexi being such a young kid, there are so many precautions to take. She would come into her room, assess her for 20 minutes, leave and come back 10 minutes later to start over. I felt bad for her, but in turn was ever so grateful for her taking such good care of my daughter.
Now ... we are in a waiting game. Lexi is on limited activity, no recess and no PE until we see a pediatric hemotologist in a few weeks. Her dr's and surgeons believe that the medical mysteries we have had with her for the past year, along with her almost dying from hemoraging out, could very well be because she could have Von Willamsbrand. It is a blood clotting disorder which causes you to bleed-out after surgical procedures, injuries, etc. IF she in fact has this disorder it is not curable but can be treated in advance for future procedures. So it is a positive thing to know and a blessing in the medical field to have the accessibility to so many treatments.
Corbyn has done well throughout all of this considering that his Sissy cannot wrestle and Mommy hasn't been able to lift him. He is such a sweet boy and snuggles with her and I gently and plays just as sweet and easy.
Lexi's surgery went well, but her recovery was really hard on her. She was extremely sick and in some pain for a full week. My surgery went well, and after three days in the hospital I was released thinking I would be home to snuggle with both the kids and recover with Lexi. Boy was I wrong about that.
Ten days after Lexi's surgery, she began to hemorage in the middle of the night. After a trip to the ER, to be told, "whatever it was has stopped, eat a popsicle and go on home", I called her surgeon in Amarillo who told us to get her up there ASAP to be examined. After seeing her surgeon, who removed a couple of blood clots in the back of her throat, said that she should be fine, but to linger around town for an hour before heading home. After an hour and a half wait, the ride home began. No more than 20 miles towards home and she started hemoraging AGAIN. I called her surgeon as she was rushed back to the clinic. He once again found another blood clot (which had formed between the last visit and the next episode) and he injected the back of her throat four times with numbing medication. By this round we had decided to stay in Amarillo for the night to be cautious. Her surgeon told us that he saw nothing else to do and that we should take her to a movie and to dinner as we normally would, BUT if it happened again she would definitely be going into surgery.
So ... we checked into a hotel room and decided on a movie to take her to after finding something to eat. All she wanted was the icing off of a cupcake and some ice cream, which I agreed to just so she would eat something, and the surgeon also said that cold foods would help keep her vessels constricted. Then it was off to the movies, where we watched The Princess and the Frog (super cute movie by the way) and she enjoyed a Coke Icee. After the movie we went back to hotel and got ready for bed. She was very tired, which was understandable, and we snuggled up to get a good nights sleep. Thinking the nightmare was over. But it was just beginning.
At midnight my daughter sat up in bed, grabbed my arm and began hemoraging yet again. I immediately called her surgeons emergency number and explained to the answering service what was happening. I waited no more than 2 minutes on hold before he was on the phone telling me to meet him at the hospital in half an hour. While making her gargle ice cold water (to constrict the vessels) we gathered the necessary items and was at the surgical center within 15 minutes where we found the staff waiting outside for us to arrive. They scooped her in, prepped her and off they took her to emergency surgery.
A little over an hour later her surgeon came back to the room informing us that the procedure went well and that she was in recovery. She had formed a few more blood clots which was allowing blood to continually run down her throat and into her stomach causing the hemoraging. He ordered a CBC on her for testing and told us to try and rest until later in the morning.
A few hours later, we were informed that she had lost 3.4 units of blood and that her clotting factors were well above normal, especially for a child. These results meant she needed a blood transfusion along with two plasma units to prevent more clotting while she recovered from this surgery. The thing with transfusions is that you need blood to cross-reference. She was severely dehydrated and low on blood. Various RN's and anethesists "dug" on her for a little over four hours, making 16 holes that were entered 30+ times to get a mere 2 ML of blood. They went in her arms, her wrists, her hands, her feet and eventually her groin.
During the last hour of attempting to draw her blood, all I could do was lay my head on her legs and pray. I was lifting my princess for the Lord to heal and to cover her in peace and comfort. At that time I heard the anethesist say, "I can't do this anymore. Not to her. We have to try something different." And as he pulled the needle up it flashed and the blood began to flow. At that moment I noticed 9 people in her room, around her bed, all praying and laying hands on her little worn out body simultaneously. When I say 9 people, I mean 9 people besides myself, my mother and my father. They were surgeons, RN's and lab techs.
Once the blood was drawn, it was a waiting game before the units arrived. The process of the plasma and transfusion took all night long. It began around 6:30 and ended at 8:00 the next morning. The poor night RN had her work cutout for her. With Lexi being such a young kid, there are so many precautions to take. She would come into her room, assess her for 20 minutes, leave and come back 10 minutes later to start over. I felt bad for her, but in turn was ever so grateful for her taking such good care of my daughter.
Now ... we are in a waiting game. Lexi is on limited activity, no recess and no PE until we see a pediatric hemotologist in a few weeks. Her dr's and surgeons believe that the medical mysteries we have had with her for the past year, along with her almost dying from hemoraging out, could very well be because she could have Von Willamsbrand. It is a blood clotting disorder which causes you to bleed-out after surgical procedures, injuries, etc. IF she in fact has this disorder it is not curable but can be treated in advance for future procedures. So it is a positive thing to know and a blessing in the medical field to have the accessibility to so many treatments.
Corbyn has done well throughout all of this considering that his Sissy cannot wrestle and Mommy hasn't been able to lift him. He is such a sweet boy and snuggles with her and I gently and plays just as sweet and easy.
At the beginning of this blog is a picture of Lexi in her "transfusion tiara". She was my little "blood princess". So brave. Words will never describe the event, how we all felt, how Lexi handled it all, and my gratefulness and love for each of my friends and family members that constantly prayed for and over my daughter, myself and my son during the past 6 weeks. God bless each of you!
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