William "Frank" Dowdell

William "Frank" Dowdell
Age 4 yrs
DOB 04/12/1999
Onalaska, Texas

Frank is an active 4 year old who enjoys spending time with his older sister Kathlynn, age 8, and his brother, Stephen, age 5. He love to swing in a hammock swing. He also loves to be around all the animals that we have, including our 9 month old Great Dane Elizabeth. He also loves school.

Frank was born with Congenital Cytomegalovirus (CMV). This virus caused him to have Spastic Quadraplegic Cerebral Palsy, Cortical Vision Impairment, Microcephaly, Intracranial Calcifications, Epilepsy, Asthma and Chronic Broncitis. 

At birth he weighed 8 lbs 11 oz, and he was 21 3/4 inches long. The only sign that anything was wrong with him was his head size was a little small at 13 1/2 inches. We watched him closely, and his head was not growing at the rate it should. At which time we were referred to see a pediatric neurosurgeon.

He was hospitalized for the first time in June 1999. At this time he was having to stop taking his bottle to breath. His SPO2 was 84%. He stayed in the hospital for 3 days.

His next hospitalization was in July 1999 when he stopped breathing for the first time. He was admitted to Texas Children's Hospital at which time he had several test done. They did an EEG, Cat scan and MRI of the brain, TORCH tests, UGI, and of course X-rays. We spent a week there, and all we found out was that he had intracranial calcifications. 

After we left the hospital we made several appointments to have him evaluated by specialists. The first one that we saw was the Opthalamologist who said that he had Cortical Vision Impairment. The next one was a Neurologist, Dr. Jules Constantino who said that he had Spastic Quadraplegic Cerebral Palsy. The next was a follow-up with his Neurosurgeon, Dr James Baumgartner, who we had seen before the hospital stay in July. He said that the reason that Frank's head was not growing properly was the intracranial calcifications. We also went to see a Gastroenterolgist, Dr Brian Vartabediane, who recommended a nissen fundoplication and a G-tube placement. During this time we also discovered that he tested positive for Cytomegalovirus. We then went to see a general surgeon at Hermann Children's Hospital, Dr. Martin L. Blakely for a consult.

In August 1999, Frank had Laproscopic surgery at Hermann Children's Hospital. At this time they performed a nissen fundoplication and placed a g-button.

From September 1999 through January 2001 he was hospitalized almost monthly with aspiration pneumonia or RAD.

In February 2001 he had ear tubes put in for a second time and had an adenoidectomy.

In March 2001 he was admitted to Hermann Children's Hospital for several test to be performed. He had a sweat test done for the third time, and had blood drawn to test for Cystic Fibrosis (both were negative). He also had a bronchoscopy. They also tested to make sure that cilia was working properly. 

In May 2001 he was admitted for a Lung Biopsy. Everything went well until we were on the floor two days later. He was then overdosed by an agency nurse on Baclofen. He stopped breathing and had to be inubated to keep him alive. He was immediately transferred to PICU where he stayed ovenight until the Baclofen started to wear off.

In June 2001 he had is first grand mal seizure. It lasted approximately 10 minutes. He did not stop seizing until the paramedics put him on oxygen. We were transported to Texas Children's Hospital because Hermann Hospital was closed due to the flooding caused by TS Allison. He came home later that day, after I argued with the doctors for 8 hours about his lung condition. They keep on trying to say that he had aspirated something based on his X-rays, when in fact his X-rays were normal for him. 

I went for a follow-up with the pulmonologist in June also he said that the biopsy showed that he had a persistent virus in his lung. They did not know what virus it was but had planned on sending it to Texas Children's Hospital for further testing. They ended up losing the sample during the flood, because the entire pathology lab had flooded during Allison.

He stayed fairly healthy until December 2001. I think he was only in the hospital once during that time. In December 2001, I took him to see his pediatrician Dr Rick Kelley, on a Friday at which time was a little sick, but not terrible. I watched him throughout the weekend, he was slowly getting worse, but I thought he would make it until Monday since we had just seen the doctor. I left Sunday night to go back to work, because I was staying on unit 4 days a week. I told my husband, Stephen to take him to the doctor in the morning. We he got to the doctor his SPO2 was 74%. He was immediately admitted to Kingwwod Medical Center. By 8:00p.m. he was being transported to Hermann Children's Hospital. They inubated him for the trip, and he was placed in PICU when he arrived there. He spent 6 days in PICU while they attempted to Extubate him. They finally extubated him with BiPap on Christmas Eve. He was sent to his own room on Christmas Day, and came home on the 28th.

We became even more aggressive trying to find out what was causing all of his lung problems. We went to the pulmonologist monthly, and the pediatrician almost every two weeks, just to keep him out of the hospital. He managed to only go in the hospital twice between January 2002 and November 2002.

In September 2002 he had a sleep study done that came back normal.

On October 31,2002 he had a seizure and was life flighted from school in Onalaska, Texas to Hermann Children's Hospital.

In December 2002 he had a Intracal-Baclofen pump placed by his Neurosurgeon, Dr. James Baumgartner. At which time he was supposed to be on his back for 48 hours. 24 hours after the surgery the surgeon had them rolling him over because he had already acquired pneumonia. He was then referred to a different Pulmonologist, Dr. Loren Glasser, who I love. He evaluated all of his medications and modified his regimen. He added mucomyst, which had cleared him up to a point that he had never been before.

After starting this regimen, he managed to stay out of the hospital. We basically did everything at home to keep him out of the hospital which seemed to worked. 

In August 2003 we planned on having new ear tubes put in and a tonsillectomy. While going through pre-op we had new chest x-rays done. I had an appointment with the pulmonologist later that day so I took a copy to him. He said that he wanted him to have a Lung Cat Scan performed, but that he could have the surgery if he stayed overnight. We went to have the surgery the next day, at which time the surgeon refused to do the surgery because he could not keep him overnight since he was going out of town. Since the surgery was cancelled we decided to go ahead and have the CT done before the surgery. The first time I went for the CT they refused to do it because they did not want to sedate him. We went back a week later and had the CT performed under anesthesia. The results of the CT were that his trachea was beginning to narrow, and that he had spots of collapse due to all of the aspiration pneumonia he had in the past.

September 23, 2003 he finally had his tonsillectomy and ear tubes. I still had to argue with the surgeon to keep him overnight. On October 2, 2003 he hemorrhaged at the tonsillectomy sight at which time they had to go in and re-cauterize the area.

In October 2003 we decided that we would go ahead and have a tracheostomy. It was the hardest decision we have had to make. It took us two years to decide that it was time for one. We went to the pulmonologist  and asked him to refer us to a different ENT than the one we had been using. There was no way that the one that did his tonsillectomy was putting in his trach. We went to see Dr Micheal Poole at Hermann. He was great. We talked about what Frank had been through, and why we were willing to put in a trach. We then scheduled the surgery.

November 13, 2003 Frank had a bronchoscopy and a tracheostomy. They also biopsied his thyroid because it is large. He spent 2 days in PICU, and then was sent to the floor. He was sent home on the 18th, and has been doing very well. He is not on oxygen at home, and the only form of humidity he gets is HMEs (which he refuses to leave on). He has to be suctioned about every hour, but other than that he is back to normal. 

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