"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7
Just thought I would post a picture so everyone can see just how Olivia is doing!
So, like I posted last night, Olivia has TEC - Transient Erythroblastopenia of Childhood. I found an article that explains this in my terms, so I thought I would pass some of the info along even though it may be repetitive of previous posts.
TEC is a condition when new red blood cells stop appearing. At first, children with TEC are otherwise well, but will lose about 1% of their red blood cells each day. Very gradually they become tired and pale. TEC is uncommon, but has been seen with increasing frequency over the last few years. It is most common in children between the ages of 1 and 3. It is thought to be triggered by a viral infection occurring 2 weeks to 2 months before the TEC. Our hopes are that Olivia's red blood cell production will recover spontaneously - usually within 30 to 60 days. In some children, transfusions are needed to keep them alive while waiting for this spontaneous recovery. Her reticulocyte count (This tells the amount of new red blood cells that Olivia's bone marrow produces) should rise within a few weeks, which is why we will have labs done weekly to see how her numbers are and see if she needs another transfusion. Her reticulocyte count was .1% on Friday night, or close to zero.
For those good with numbers, I'm including Olivia's counts below to give an idea as to where she was so it will help with updates in the future.
So, like I posted last night, Olivia has TEC - Transient Erythroblastopenia of Childhood. I found an article that explains this in my terms, so I thought I would pass some of the info along even though it may be repetitive of previous posts.
TEC is a condition when new red blood cells stop appearing. At first, children with TEC are otherwise well, but will lose about 1% of their red blood cells each day. Very gradually they become tired and pale. TEC is uncommon, but has been seen with increasing frequency over the last few years. It is most common in children between the ages of 1 and 3. It is thought to be triggered by a viral infection occurring 2 weeks to 2 months before the TEC. Our hopes are that Olivia's red blood cell production will recover spontaneously - usually within 30 to 60 days. In some children, transfusions are needed to keep them alive while waiting for this spontaneous recovery. Her reticulocyte count (This tells the amount of new red blood cells that Olivia's bone marrow produces) should rise within a few weeks, which is why we will have labs done weekly to see how her numbers are and see if she needs another transfusion. Her reticulocyte count was .1% on Friday night, or close to zero.
For those good with numbers, I'm including Olivia's counts below to give an idea as to where she was so it will help with updates in the future.
Labs drawn Thursday showed:
The "average" child:
White blood count: 5,000-10,000
Red blood count(platelets):140,000-450,000
Hemoglobin:11-13
Olivia:
White blood count: 4.3 thousand
Red blood count (platelets): 27,000
Hemoglobin: 6.5
I don't remember all of the counts after the transfusion, but I do know her hemoglobin was up to 9.2, which is good, but still on the low side which led to the 2nd transfusion. Her hemoglobin was actually as low as 6.1 on Friday night prior to being transfused. I think her platelets went up to around 55,000.
According to medical science, a person's white count and platelets should not be low when they are suffering from TEC, which is the only mystery here. After talking to all of the doctors who know Olivia well, Dr. Smith from St. Jude's came to the conclusion that she has always been a little on the low side, leading him to this diagnosis.
Now, Dr. Shah, the cardiologist actually thinks Olivia has suffered from TEC twice. Once now, and once when we were in for the RSV in December, which is why she would have needed the transfusion on Dec. 24. If this is the case, there may be other reasons why she continues to suffer from low blood counts.
Basically, we need prayers for Olivia's bone marrow to kick it into high gear and start pumping out those beautiful new little red blood cells! The weekly blood tests at St. Jude will keep us informed on whether or not this is happening so we can decide if further tests need to be done.
We will also see her cardiologist on the 19th, which will tell how her heart is handling all of this. Apparently, low hemoglobin makes the heart pump faster and harder. As of Saturday morning, we had prepared our hearts minds for a diagnosis of leukemia or aplastic anemia, as this was seeming to be the most likely cause. We know we are not out of the woods yet, but have learned that we need to take everything one day at a time with Olivia. We know we are just entering the beginning of the forest on this one, and that God only knows the path ahead, but we are totally okay with that.
2 comments:
Julie: I randomly during work boredom check your blog to see how life on your end is. Since I don't have daily chats with Nicole these days I pry into your life from your blog. Love the internet!! I just wanted you to know that I am praying for Olivia and your family. God continues to hand you overwhelming life circumstances and you continue to rise above it better than before and make the most of life. It puts such a reality check on my own "pity party" in the never ending custody battle I have and the miscarriage. Regardless of what the outcome is with Halle she is healthy and I should be thankful. You continue to deal with a rollercoaster of emotions watching your daughter at such a small age suffer and get better. Your an amazing woman and mother and I hope the best for little Olivia and your family.
Alison
http://jordalihalbelle.blogspot.com/
It is so good to see that beautiful girl with a huge smile on her face. You and Olivia are such an inspiration, I honestly think you should write a book. You continue to face many challenges with a positive outlook and have such a forgiving nature during adversity, I know there are many people who would want to emulate your attitude and love of life. Your family is so blessed and we keep you in our prayers.
Love, Amy
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