Care4Conway: Update on Mary Kathleen

Tuesday, December 4, 2007

Update on Mary Kathleen

Dr. Sanchez says that it is possible that the hair follicles are just irritated. She did say that the bumps do resemble warts but since she has no other warts anywhere, that's not as likely. We are going to treat it for now with some medicated shampoo a couple of times per week and daily application of a topical ointment. If it goes away we can stop the treatment. If it is still there in two months they will do a biopsy :( If it changes more before then we will go back in. So, we are rejoicing for now that she doesn't think it is cancer or anything at this time!!

I hesitated to update on Connie yesterday because I was afraid I would jinx it. He went from Sunday afternoon until the early morning hours on Tuesday with NO THROWING UP! Of course he's thrown up four times today, but compared to last week today was even fabulous! I know it is because of everyone's prayers. Please keep them coming.

He got three shots today and had his checkup. Dr. Davis was pretty pleased. We like going there because everyone thinks he looks so big and so great. They aren't analyzing every ounce! He was 30 inches (90th percentile), 21 lbs. even (just over the 50th percentile) and 45.5 for head circumference (50th percentile). On his check out sheet he wrote for the diagnoses: Healthy, Heart Disease, GERD, Developmental Delay. It was hard to see the last diagnosis in writing. I know there is a reason for it and it won't be forever, but it was still kind of humbling.

Greg had a fabulous idea tonight. Lately Connie has been going to bed by seven at the latest but is waking up around 9 and wanting not going right back to sleep. To get him back to sleep on his own we've been putting the vibrator they gave us at the hospital in bed with him and it is enough to lull him to sleep. It goes through two batteries a night and sometimes doesn't even last the whole night. So, Greg got a chair massager that we had lying around the house and plugged it in and put it under the mattress. Now the whole bed vibrates and it's not eating batteries! Isn't he a genius?

Tomorrow he'll get weighed by the home health nurse so I'm anxious to see on the same scale we usually use how he compares.

5 comments:

Anonymous said...: Don't you have an older daughter too? Why is she almost never mentioned or pictures or her with Conway? Why is it the only 2 of your children you talk about on a regular basis are Conway and Mary Kathleen? Having 5 children myself, I know that the illness of a younger one (my youngest has had 7 surgeries) is hard on the siblings as well as the parents. They don't get their fair share of attention while the parents are having to deal with the medical issues of their siblings. I've been reading your blog for months-praying and following conways care and have been wondering why your older daughter is so rarely mentioned.; December 4, 2007 at 10:55 PM
Anonymous said...: Erin, You have done an amazing job on this site. The pics are great and your updates so inspiring of a mother's love and devotion. My fav pic is of Connie in his highchair. He's growing up and changing in the face. Its so good to see the sparkle in his eyes. You're an awesome mom and we have an awesome God. Hope to see you Friday. Love ya, Marsia; December 5, 2007 at 9:30 AM
Shari said...: Erin:

I am praising the Lord for the news on Mary Kathleen. Yay! I praise Him too for Connie's progress. Know I continue to pray. If I don't check in the next few days it's because we are having computer trouble.

Loving you from afar,

Shari; December 5, 2007 at 1:36 PM
Shari said...: Erin:

I hope I didn't offend you in my last comment when I asked if maybe we could see a pic of Celeste. I am sorry about the comment made by anonymous. I got to thinking about my asking and maybe thought it was not OK to ask.

Praying as always!

Shari; December 6, 2007 at 7:14 PM
Anonymous said...: Dear Conway and family,
I have been reading your journals and I know our prayers are being
answered. Conway is doing sooo well and I am so glad and grateful
to God and I wish for you all and
Conway a very Blessed and Merry
Christmas and a wonderful 2008. I
will certainly keep the prayers
going and God Bless you mom and
dad and sisters. I just know this
baby is going to get well.
Lovingly, Anne Louque, Baton
Rouge, La.; December 9, 2007 at 10:12 AM

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.