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July 30, 2005 (Saturday) Another good day! Carissa got up this morning (better said--noon) with the urge to get out of the house. She was so excited about it that she got ready before I did. Carissa wants to redo her bedroom when she gets home, so we spent the afternoon looking for ideas. Ikea is always a fun place to start, and she managed to walk away with a couple of big, soft pillows that make her wheel chair a lot more comfortable, and will be nice in her den at home, as well. Carissa wasn't satisfied with just a trip to Ikea, so we made a few more stops before coming home with new pajamas (what she lives in) and a couple of sporty outfits (with elastic waist bands) that should be comfortable for trips to 7 West after her transplant. It's awesome to see Carissa's strength and courage rebound as she plans for life after transplant. Thank you, Lord, for giving her the vision. July 27, 2005 Carissa gained one tenth of a kilo which is less than half a pound. Oh well! At least she didn't loose any weight and she hasn't had a fever. When June, the transplant coordinator, reviewed Carissa's blood work before Dr. Kareem came into the room, she told us that Dr. Kareem is ready to transplant Carissa and that she thinks it will be soon. When Dr. Kareem came into the room he commented, "I'm ready to transplant her, so that means you are ready, too?" Of course, we confirmed our readiness. Another small bowel transplant patient and friend, Karen, was given a transplant last Saturday. It was great to see Michael, her husband, in clinic today and get details. She is still in ICU but is doing well and should move to a private room soon. Michael is staying at the McKee Family House (as of transplant, they have commuted from Chambersburg), so we look forward to Karen joining him once she is dismissed from the hospital. The cell phones are on and phones in our rooms are on the hooks waiting for the call... July 25, 2005 Carissa had the best day in months last Friday. When she heard that Faith, Ben & kids were coming to see us, she pulled out her origami and began working on a creation for each of the kids (except Truett--4 ½ months old). A while later, Eimy came to visit and they played a game. Carissa commented later that she didn't know why, but she felt better than she had in a long time. Unfortunately, the energy didn't last. She had very little energy the rest of the weekend and wasn't able to go with us on Saturday to the Carnegie Museum of Art and Natural History for even a little while. That night she said, "I wish yesterday were today." Teresa, a lady staying at the McKee Family House, received a small bowel transplant last Friday night. Teresa had surgery on her leg earlier this year (required prior to transplant), and has been waiting at the Family House for a transplant since about March or April. She is doing well. Every person who receives a transplant gives us courage to believe that it will happen for Carissa (and Karis and Eimy), as well. July 20, 2005 Carissa regained two pounds! It is possible that the weight loss was due to dehydration and that the extra fluids given the past week contributed to her gain. Carissa's blood work was good today except the liver counts doubled. Dr. Kareem believes that there are stones in a bile duct causing the high counts. They are planning to remove the stones by scope. There is no urgency for the procedure and it wouldn't prevent a transplant, should organs become available. July 19, 2005 Carissa wanted to go somewhere today for the first time since her surgery. We went to Robinson Township Mall where she enjoyed looking through the "Build-a-Bear" store for the first time. "Sweets from Heaven," a candy store, was too good to walk away from empty handed. She was disappointed when she realized it was time to leave and hook up to her IV fluids. We have clinic tomorrow morning and will find out more about how Carissa is doing. It would be really nice to hear that she has gained some weight, but will be satisfied if her bloodwork results are more stable. We enjoyed a visit from Celeste this past weekend, in spite of it being short, and Carissa's dad is coming to spend a few days with us soon. They are a welcome distraction! July 13, 2005
Carissa lost two more pounds. She's the lowest she has ever been.
Dr. Kareem said today in clinic that she needs new organs. He
thinks we (including himself ) need to have courage and trust the
Lord, and go ahead with the transplant. He thinks that her body may
grab hold of the new organs quickly once she is transplanted and
pull out of the downward spiral.
If Carissa doesn't get another infection within the next
week or two, Dr. Kareem plans to do the transplant (if
organs are available). He wants to see her more often in
the meantime, so we are scheduled to go back on Friday to
Seven West (transplant service center).
Tomorrow she has a CT scan at 8:30 a.m. to rule out pneumonia
because she is still running a low grade fever at night. She
has had a little difficulty breathing for a couple of days, but
there are no other symptoms.
Gary, a young man who was approved for a transplant the same day Carissa was approved, received a transplant about two months ago. His mom says that his body responded so quickly to the transplant that within hours there was an obvious difference in his color and even his fingernails. Gary has fought fiercely for his life since his transplant, but he underwent procedures that had never been done before. He's home, in Ohio, for a week for the first time in months. It is natural to feel a surge of fear initially knowing that Carissa has no weight to loose, but we entrust her to Our Father's hands. July 8, 2005 Carissa is out of the hospital! She came back to her room at the Family House with energy. She began working on her laptop almost immediately, happy to have it available again (has been rebuilt). She still tires quickly, but looks a lot better and has had no fever. Hurray! July 7, 2005 Carissa wasn't released from the hospital on Wednesday after all. Her fever went up to 100.2° Tuesday night after being fever free for most of the day. She continues to run a low grade fever, so we don't know when she will be released. The doctors don't know what is causing the fever, but it isn't a fungus—at least so far. They did a CT scan of her abdomen today to see if there is a buildup of fluid somewhere, but no problem was detected. They don't seem overly concerned, just cautious. Carissa seems to be feeling better. She's getting really bored at the hospital, and that's usually a good sign. July 5, 2005 Carissa's Hohn IV feeding line was successfully changed today and her fever has been normal most of the time. She will be released from the hospital tomorrow, if her fever stays down. We thank the Lord for His mercy and grace each day. July 4, 2005 Carissa's fever is down and she is feeling better today. She's still weak and tired, but is a little more cheerful. We were told today that the blood cultures are growing a bacteria rather than a fungus. That is good news for two reasons. Bacteria is easier to fight, and the reason Carissa had her small bowel removed was to prevent fungus infections. So we are thankful. The doctors plan to replace her Hohn feeding line tomorrow. We don't know where they will find another vein that is usable, but have been assured by friends at the Family House that Kareem will find a vein. Karis walked all the way from Children's Hospital to see Carissa tonight. That means that she walked through Children's and across the bridge to the Presbyterian Hospital, through the Presbyterian Hospital and across the bridge to Montifiore, and down a very long hallway to Carissa's room at the very end of the south wing. Karis was just learning to walk again (after being in a coma and having neurological damage) when we first met her, so it was no small feat! Congratulations, Karis! July 3, 2005 Carissa was admitted to Montifiore Hospital this morning with a fever of 104.9. She had been running a low grade fever in the evening for a couple of days and was feeling septic. The last time Carissa had a line infection, they replaced the Hohn feeding line over a wire to preserve the vein. There is always a risk that the infection will transfer to the new line in the process, but she has so few veins that are usable that they decided to run the risk. We suspect that she has sepsis again and that they will have to remove the feeding line, which means that she will loose IV access through that vein permanently. We don't know where they will find another usable vein. Needless to say, to have sepsis again is a big disappointment after undergoing major surgery to prevent it. Perhaps the source of sepsis this time is the feeding line rather than the short portion of small bowel that she has left. We won't know until the cultures develop which takes a few days. July 1, 2005 Today we received a call that touched us deeply. A fifteen year old teenager in Michigan was diagnosed a week ago with an inoperable tumor in his brain. He is already unconscious and there is no hope of recovery. He is the only child God gave this family. The family became aware of Carissa's need through mutual friends and wanted to donate their son's organs to Carissa. For heartbroken parents to be willing to give their beloved son's organs to Carissa is a gift that is immeasurable. Unfortunately, there are a lot of issues involved in matching donors to recipients and CORE, the national organization that supervises the distribution of organs, cannot accept requests for specific recipients. They determine recipients by matching blood and tissue type, as well as greatest need. Carissa is at the top of the transplant list for her blood type, but she may not be able to undergo a transplant yet because she needs to gain weight. Also, today Carissa has been running a low grade fever. It hasn't gotten above 100°, but she isn't feeling well, so it is probably a matter of time until her fever spikes again. Karis is the next person on the transplant list for Carissa's blood type. What joy we would feel if she were the recipient. All three young people are in God's hands. We don't understand, but we know He makes no mistakes and we trust His heart.
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Life on a Feeding Tube |
