sickle cell disease

We spent most of the weekend trying to help William and Keisha fight their colds. It appears that the cold has passed over me this round. Thank God because I usually get a cold from them each time they get it from daycare. Friday evening, the runny noses started... and I was happy that I had just purchased four boxes of Kleenax the previous Sunday. I bought the new tissue with the anti-virus beads in it. How in the hell companies come up with this stuff, I have no clue... but I bought it. I had two coupons, plus it was on sale at Target. I could not resist.

I went back and forth helping William and Keisha blow their noses to get all the gooey snot out. They took turns with their Ewws and Owwws. I kept the Vaseline handy (code name Grease in our household) handy to apply below their noses in order to prevent chaffing. After all of the FDA reports, I have to admit that I am a bit reluctant to immediately rely on over the counter cold medicines for the twins. I kept them pumped with fluids and continued their regular dose of multi-vitamins.

Not too bad right?

But then on Saturday evening, I grabbed William to give him a hug and he felt warm. Everytime William gets a fever, I get scared to death... hoping and praying that it does not get to 101. I went downstairs to grab the thermometer, took William's temperature and it was 100.0. I asked JT to grab the Tylenol and he was on it. When JT went to Schnucks to pick up dinner, he also purchased fruit water. William loves water, but he occasionally gets tired of it. Gatorade is great too, but Keisha and William only tolerate so much of that too. I kind of have to balance out the variety of liquids for them. According the Keisha, her favorite juice is the Yellow Juice. That made me giggle.

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Today I found out that an ex-coworker of mine passed away. She was not very old... maybe late forties. We were in the same group... at the job that I just left eleven days ago. What was shocking for me is that I also found out that she had sickle cell disease. I wish I would have known that to had an opportunity to bond with someone or share knowledge and experiences. I do not know if she died from complications from the disease. Needless to say, William immediately came to mind. I am feeling very sad.

My thoughts and prayers go to her family and friends. I believe that she has two young sons. I will keep you in my prayers.

I also always pray for a cure for sickle cell disease.

So many thoughts in my mind, but I feel like a wreck.

Rest in Peace D.

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Just under two weeks ago, JT and I saw a news report on Fox 2 St. Louis about a new free drug program at Schnucks Pharmacy. The prescription is free regardless of insurance provider.

The free Prescription Drug Program for Generic Oral Antibiotics includes up to a 21-day supply, as well as prescribed refills, of the following seven classes of antibiotics:

For Drug Descriptions and Item Sizes included in the program go to the site and click on a drug title for more information:

• Amoxicillin (Generic for Amoxil) - capsules and oral suspension

• Ampicillin - capsules and oral suspension

• Ciprofloxacin (Generic for Cipro) - tablets

• Doxycycline - capsules

• Erythromycin - tablets, oral suspension and capsules

• Penicillin - tablets and oral suspension

• Trimeth/Sulfa (Generic for Septra or Bactrim)

Schnucks Pharmacies are located throughout Illinois, Indiana, Iowa, Mississippi, Missouri, Tennessee and Wisconsin. To find out if a location is near you go to: http://www.schnucks.com/stores/query.asp?pharmacy=Y&feature=pharmacy

I am very excited about this program. JT and I will be going to Schnucks tomorrow to get penicillin filled for William. Because he has sickle cell disease, he takes penicillin twice a day to help fight infection. He has been taking it since he was 2 months old.

Any money saved due to this free program will help out the family's expenses.

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William went back to school this week, after recovering from his splenectomy three weeks ago. His energy level remained high and he had a great week at school. The teachers and William's classmates welcomed him back with opened arms on Monday. Everyone was thrilled to see him. Keisha watched over her brother throughout the week... that warmed my heart to no end.

William and Keisha do have fights as any normal siblings would, but they are also very close to one another. I absolutely love that about them. They definitely do have a twin bond... they even have their own language. I often hear them on the baby monitor in their room, talking to each other. I do not know what the hell they are saying to each other, but they do because they converse back and forth for several minutes to hours.

I hope that they always stay close to each other. I love my little brother, but we are not as close as I would like. I am not sure why that is. Yes, he is six years younger than me but I do not think that the age gap alone is what makes us not be close.

On another note, I did take the Advair yesterday evening and within ten minutes, I could feel the relief in my chest. Amazing. I did not think I needed it this morning so I did not take it. Stupid me. I should have taken it regardless, in addition to my inhaler like my doctor advised. Throughout the day at work, my cough gradually came back. I will take a dose before I go to bed.

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Yesterday, the surgeons discharged William from the hospital. I am so amazed and thankful that William has made much progress since his surgery on Wednesday.

Tuesday evening: Admitted to the hospital for IV fluids at 9 p.m.

Wednesday: Preparation for surgery began at about 8:30 a.m. After recovery, William went to PICU (pediatric intensive care unit). William was in PICU for about 24 hours where he received excellent one on one care. That evening William blew bubbles, which helped keep his lungs clear and reduce the chance of getting acute chest syndrome.

Thursday: That morning, the nurse removed the tube from William's nose that went down to his stomach. William was placed in a regular room and oxygen was removed from his nose. He later ate two popsicles.

Friday: Dr. T. reported that William's spleen weighed in at 174 grams which is about three times as big as a normal child's spleen. I was somewhat speechless yet even more assured that JT and I made the right decision for our son. That afternoon, William got up walking for the first time. Initially, he took baby steps then the steps gradually increased as he walked over to the play room. He sat up on his own for well over 90 minutes. William had clear liquids for the first time on Friday... chicken broth for breakfast and dinner, beef broth for lunch, breakfast shake, apple juice and Sierra Mist.

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We arrived Sunday evening at the hospital, then the doctors sent us home Monday to come back Tuesday evening. William's surgery was bumped from Monday to today because they could not get enough stand by blood from the blood bank on Monday. William has a blood type with uncommon antigens. He did get a half unit transfusion at about 2 a.m. Monday morning (hemoglobin count was 8.1) but there was only one and one half units left. Before that, there was also a bit of chaos regarding miscommunication between hematology and the surgeon team. Apparently, the surgeon team was consulted to perform a partial or full splenectomy. Needless to say, this was completely against what JT and I had discussed with William's hematologist, well before the surgery. We were consistently against the partial splenectomy because there are not enough studies for the outcome with sickle cell patients.

I was well beyond frustrated and confused at this point. Dr. T. assured us that he would discuss the matter with the surgeons and explain what we wanted and why.

We returned back to the hospital last night. After three unsuccessful pokes to my son's arm, one of the nurses was able to get an IV in William's arm. Thankfully, William's hemoglobin count remained high (in fact it raised from 11.3 on Monday to 11.6). We finally met the head pediatric surgeon this morning. Again, we hear the words partial splenectomy. Initially, a feeling of disgust rushes through my mind. I tell the surgeon that this is not the case. We explained to Dr. T. that we wanted William to have a full splenectomy. The surgeon says that he will need to confirm this with Dr. T. and if there is any further confusion, he will cancel the surgery. As the surgeon continues to prep us for the surgery and procedures, I start wondering what communication error to place this time.

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For my son, William. If you know me fairly well, you will remember that William had a splenic sequestration crisis last August. We decided to have William get chronic transfusions in an effort to reduce the change of another spleen crisis which could be fatal. Thankfully, the transfusions have lived up to all of our hopes, prayers and Dr. T's studies. On the other hand, chronic transfusions can not be given forever as they increase the iron level in the body over time and could cause liver problems. One year is all we planned for in regards to chronic transfusions. One year has passed.

Now it is time for William to get a splenectomy. I do not think one person in my life truly understands the fear that runs through my veins everytime I think about this decision. JT comes closest, but even with him sadly I feel that I sometimes have to hold back on my thoughts and feelings.

I have said this numerous times... Dr. T. is a great hematologist. I was sad when Dr. C. retired, but I am truly thankful that my son still has a great doctor to care for him. Many doctors act like they do not have the time to talk to you about your concerns and talk down to you, but this is not Dr. T. He is intelligent, passionate about his work, kind, respectful and caring. Dr. T. direct approach to the matter helped ease a lot of my fears. Do not get me wrong, I am still scared to death... but now I feel a lot more educated about what William and my family will be facing. Education plays a huge part in the care for my son.

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Last week, William's labs went well... JT reported that there was minimal crying. Nurse B. called me Tuesday afternoon to let me know that William's hemoglobin count was 8.4 and that the transfusion was set to go on Thursday. His count was 10.3 during the previous week.

William and I got ready for our monthly visit by first stopping at White Castle to pick something up to eat. The hospital food is actually pretty tasty but it is very expensive. If I am able to get food elsewhere, then I will do that. We ordered a 4 White Castle meal with fries and a drink and 2 double cheeseburgers. Of course I asked to hold the pickles and the onions. I have not liked White Castle onions in years... there is no need to wonder why your stomach hurts after eating those burgers. Most of that stems from the onions. Anyway...

We hopped back on the bus and headed to the hospital. There was a brief wait before we were seen by Nurse B. and M. but I did not mind that much at all. During the wait, William colored in the coloring books and played with the train set.

William's weight was 32.4 pounds and height was 38 inches. He has been pretty steady at that same height and weight for the past couple of months. I am sure that a growth spurt will come this way when I least expect it. Nurse M. only had to stick William one time for the IV. I am always thankful for one stick instead of two or three or four... which leaves William in pain and me wanting to whoop someone's ass.

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Oooh what a crazy day. I am so emotional today.

Anyway, I forgot to write about the hospital appointment the other day. On Wednesday, William had his type and blood cross. His hemoglobin count was 9.9 that day... very good for my son and JT and I were very happy. Dr. T. decided to go ahead with the transfusion on Thursday. JT and I previously scheduled off that Thursday for JT's birthday weekend. William originally had his transfusion scheduled for the first of the month, but Dr. T. delayed that by one week because his hemoglobin count was over 10 at the time.

We made it a family affair. JT, Keisha and I all joined William and supported him from the beginning to the end. I normally take William by myself to the hospital for transfusion day so it was nice to have the whole family attend for support.

William weighed in at 33 lbs and he is now 38 and one half inches tall.

The nurse unsucessfully prepared William for the IV twice before Nurse M. came in. She is the expert in that wing of the hospital. I understand that they have to let other people learn and get better at the techniques, but I rather have M. do William's IVs every month.

After about an hour of fluids through the IV, Nurse B. drew 150mL of William's blood and over the next two and one half hours William received 180mL of the O negative blood. William almost took a nap until I mistakenly turned on Arthur on PBS. William loves that show and after he got one glimpse of it, he was wide awake from then on. After doing the silly things that she does when sleepy... Keisha fell asleep for about 45 minutes.

When it was all said and done, I made the next two apppointments in four weeks from that date.

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I have been battling my cold all day long, so it made the day a little difficult to get through. I had two meetings today and they went well. Other than that, I didn't feel so productive on my own. I did manage to help a few co-workers with their projects. The gave a dose Tylenol Cold and Cough to William and Keisha. The twins picked over their food... they really weren't all that hungry because of their colds.

I am very thankful that William's hemoglobin count was 10.2 yesterday. This means that he doesn't have to have his blood transfusion this week. Next Wednesday we will go back in for another type and cross. Depending on what the count is next week, he may have the scheduled transfusion on Thursday. Dr. T. says that we don't William to have the chronic transfusions for more than a year. This August will make it one year. After that point William will have a splenectomy. Why have a splenectomy? Because William had a sickle cell crisis last August, this makes him have a high chance of having another crisis that could be fatal. This is why JT, Dr. T. and I decided to treat William with chronic transfusions; an effort to keep the percentage of sickle cells under 40% and hopefully in turn reducing the chances of another crisis. The downfall of chronic transfusions is that it can cause high iron levels and liver problems. Since William began his chronic transfusions, his doctor and nurses have monitored his iron levels as well as the regular tests.

I am very scared of the day that William will need to have the splenectomy but in the meantime I can only take one day at time. He continues to take penicillin twice a day, folic acid vitamin every other day and Flinstones gummi bear vitamins daily.

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