Yep, my suspicions were right the other day when I blogged about her not feeling better . . . nobody knows how bad I wanted to see Kourtney doing well after her her transfusion. I had a week off work which was a relief because then I got a pretty good idea of what was going on with Kourtney. She had missed a couple of days of school prior to the transfusion so I wanted to help her catch up. I started studying good old Chemistry 10 and learned all about radioactive decay and tectonic plates. The more time I spent with Kourtney the more I realized that she was unwell. She couldn't stay awake when I was going through her Science and it seemed that every bone in her body ached.
On Halloween night I took Shaelyn and her friend out trick or treating. When I got home Kourtney was whiter then a Halloween ghost and was unable to concentrate on studying for her Science quiz. I took her to the bathroom that night, and noted her stool to be black. A part of me wanted to pretend that I didn't see it, but its smell and consistency just reassured in my mind there was a bleed going on. Thursday morning she was shaking and continued to be pale. When I saw her in this condition I became nauseated knowing that she was most likely bleeding internally. Todd went to school to arrange for a TOC, and I started packing supplies for a stay in the hospital. I phoned Dr. Courtemanche, and he said he would make arrangements for her.
I started second guessing myself when we drove in as Kourtney seemed to settle down somewhat. Upon arrival at Children's Hospital we were triaged right away as Kourtney's heart rate was 176 bpm, and her colour was fading very quickly. The whirlwind of events that occurred was amazing. We were seen by a doctor in emergency within 30 minutes (the wait would have been closer to 3 hours). The anesthesiologist was called and after two tries the IV went in the anesthesiologist said, " I am sweating like a pig." Kourtney, you can really make the guys at the top of the totem pole sweat.
As the blood work results started slowly drifting in my suspicions were confirmed. Kourtney's hemoglobin dropped significantly since her last transfusion . . . there was a geyser inside somewhere and we had to figure out where . Dr. Courtemanche got us admitted to "his" floor; the floor where surgical patients go but because of what happened years ago, he is pretty darn protective of our little princess. He made it clear that "no residents" were to see her. What a relief!
Kourtney seemed to stabilize through the night when they started her on a medication through the IV called Pantoloc. Unfortunately, her IV fell out during the night and the next option was to put in a Central Line. This would avoid the need to poke her over and over and over again for bloodwork, IV's as well as any procedures that need to be done. We have avoided this over the years because she is such a high risk for infection so the chances of the central line (which goes right into the superior vena cava - the heart vein)getting infected are increased, which could cause another set of problems (that I don't want to think about and have to really give to GOD). However, Dr. Courtemanche and I felt it was absolutely necessary to get to the bottom of this. He felt very uncomfortable sending her home without knowing how approximately one cup of blood got lost in only 9 days post transfusion.
So as she was taken down to interventional radiology to get the PIC line (central line in) we both felt unsettled. I really didn't understand what was involved. Kourtney senses when I am uneasy, and played off my fear, and broke down when she was going to get up on the table. I told her she didn't have to do this but she would continue to feel crappy and the only way to make her better was to get this line in so we could find out what is making her so unwell. With that she marched up the table, and continued to be miserable, that is until Dr. Cassidy walked in. We met him 9 days ago when Kourtney had her last transfusion. This man with the strong Scottish accent put Kourtney's IV in, was so kind and gentle with Kourtney, as well he is a "wee bit handsome". Kourtney in her misery didn't see him come in and when I said, "Kourtney look who is here!", Kourtney looked up and smiled. You know that smile when you know she is truly happy . . . or being totally deceitful. Those of you who know her well, you know the look. Everyone in the room saw the connection. Dr. Cassidy took her little hand and held it talked her through putting the mask on and he held her arm as she was getting her line in. I came in to help with the dressing and thanked him for coming in. He said, "No it is my pleasure. For everything that she goes through she is so pleasant."
Now she has the line in we have learned a lot about what is going on in her body. It is amazing that blood work provides so much information about what is going on. We know her liver and kidneys are OK (Dr. Courtemanche made sure I knew this cause he knows that I was a dialysis nurse forever and knew it would easy my mind).
One possible explanation though came up on her blood test. She had a positive Coombs test which could cause these symptoms, however, she did not have blood in her urine, just in her stool. She could have had a delayed reaction to the blood transfusion, and there was an antibody in her blood that she was rejecting which could cause hemolysis (or breakdown of red blood cells-causing her hemoglobin to be low) I know its confusing . . .
But her stool also tested positive for "occult" blood which means there is bleeding higher up. So at this moment we are still waiting for arrangements to be made for a scope of her stomach and her small bowel. While we are here Kourtney and I both feel that a dilatation of her esophagus may be a good thing as she is experiencing a lot of problems swallowing lately (not as bad as before but it is getting worse).
What I find amazing is how Dr. Courtemanche and Dr. Davis have supported us and been here everyday to see how she is doing. The internal specialist is new to the hospital, and we have found him to be agreeable and quite lovely as well. He has respected what I have told him and acknowledges that I know Kourtney's history the best. As long as they listen to Mama, there is no Mama Bear!
The most random thing that occurred was Kourtney's "old" teacher's aide, Tammy, was flying from Calgary to Vancouver the same day and same hour Kourtney was admitted. The Vancouver airport is close to the hospital so Todd was able to pick her up. Kourtney introduced her to the nurses as her Grandma, who then commented on what a young grandma Kourtney had. It was quite amusing. It made us realize how much more we missed her.We have had many special friends come out to visit and have made some new ones.
We are still here until they can arrange the scope and dilatation together. Although its not the greatest place to be it has eased my mind greatly knowing that she is getting the best care.
1 comment:
Kourtney, we wish we could be there with you and your Mom and have prayed for you and your whole family constantly. Looking at your picture, you look gorgeous. We're glad you are so well taking care of by your Doctor Princes and the Mama Bear can take a rest. We love you and know you will be feeling so much better after all the poking is done. Love from Grandpa & Grandma K.
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