Tuesday, December 30, 2008

REMEMBERING GRADY'S JOURNEY

I had planned on posting this in Jan. but with the other baby I read about having RSV and going through so much of the same as Grady, it's brough back many memories so I'm posting this now. Below are the things I typed after the Jan and Feb and March stays at Riley.

Monday, January 21, 2008
Martin Luther King, Jr. Day
The day began normally. Taylor and Grady had spent the weekend at Grandma and Papaw Rouse’s house so that Mommy and Daddy could continue healing and resting from Daddy’s kidney stone and Mommy’s gallbladder removal and ERCP procedure. Grady had been sick at 2 weeks old and his cough had hung on. He was now 7 weeks old and on Sunday, January 20, 2008 his cough seemed to get worse. Grandma Rita brought Grady and Taylor home around noon on the 21st. Mommy had just gotten home from a doctor’s appointment and bloodwork. When Mommy saw Grady she became concerned. Grandma said he hadn’t been wanting to eat so Mommy gave him a bottle. He took it with no problems. However, Grady’s breathing sounded really labored and Mommy got more worried. She had already tried to get him into the doctor that day but they were booked. Mommy called Daddy and told her how worried she was. Daddy and Mommy didn’t want to take Grady to the ER where it would be a long wait and he’d be around lots of sick people. As Mommy was deciding to take Grady to ER, he turned blue around his mouth and tongue, snot bubbled out of his nose, his eyes rolled back in his head, and he stopped breathing. Thank God that Grandma Rita was still at our house! She called 911 and she and Mommy did CPR on Grady. The ambulance arrived in less than 5 minutes. Mommy grabbed her purse and put on some slippers and climbed into the ambulance with Grady. Grandma Rita called Daddy and then took Taylor to Juana’s house. We all met up at the St. Francis ER where the doctors decided Grady was too sick to be at St. Francis and they called the Riley transport team to come get him. During the trip to Riley, Grady had two more episodes of apnea (not breathing or acute respiratory failure). Upon arriving at Riley, Grady was assessed and measures were taken to keep him breathing. Attempts at IV’s being started had been done at St. Francis but were unsuccessful due to how small his veins were. Once again, at Riley, attempts were made to start IV lines so that he could get some fluids and medicines. His little veins were blowing out so they had to do IV lines in both sides of his head. Later, a doctor was able to start another IV line in his arm so that one of the head IV lines could be removed. Grady was receiving large amounts of oxygen but was still having a very difficult time breathing. The doctors switched him to pressurized oxygen (VapoTherm) but his breathing remained labored. His little body was simply too tired to breathe. Grady received breathing treatments but they did nothing to help him breathe easier. The ER doctors called up to the Pediatric Intensive Care Unit (PICU) and a room was prepared for him. Grady was finally moved to the PICU at Riley hospital. One last breathing tool (CPap) was used to try to help him breathe, when that didn’t work the doctor on the PICU determined that Grady needed to be put on a respirator or vent to help him breathe. This means that they had to give him large doses of pain and sedation medicines and put a tube down his tiny throat. Once this procedure was completed, Grady was breathing better even though a machine was breathing for him.
During my maternity leave, I became very sick on Christmas Eve and ended up having to have my gallbladder removed on Dec. 28, 2007 when Grady was just one month old. Due to some complications from the surgery, I had to return to the operating room to have an ERCP procedure performed to stop the extreme pain I was still having. This procedure was done on January 17, 2008. After the birth of my son, I returned to my doctor’s office for my post partum checkup. There it was determined that I was suffering from post partum depression. Along with the gallbladder issues I had after Grady’s birth, I was also dealing with his illness (bronchiolitis) at 2 weeks of age, my husband’s two trips to the ER with a massive kidney stone, and a 2 ½ year old at home. The doctor prescribed medication for the depression. I was scheduled to return to work from my maternity leave on Tuesday, January 22, 2008. Needless to say, with my 7 week old baby laying sedated in the intensive care unit of Riley while a machine breathed for him, I was unable to return to work. Grady was sedated and on the vent until Friday the 25. The doctors did many tests to see if he was ready to breathe on his own and he was not ready. Finally, on Saturday the 26th, Grady appeared ready to breathe on his own. The tube was pulled out of his throat and he was weaned off of oxygen until he was breathing room air. He was in a lot of pain and stress from the tube making his throat so raw and swollen. After being removed from the vent he went into withdrawal –like symptoms from being taken off the sedation and pain medications too quickly. Because of this he didn’t sleep for over 30 hours; he was agitated and in pain. Finally he was given a small dose of anxiety medicine to help him sleep.
During the time that Grady was in the hospital, many, many tests were performed to determine what caused him to get so sick so quickly. It was determined that he did not have RSV or Cystic Fibrosis and he did not have a heart defect. He did, however, have pneumonia. The tests were inconclusive as to what virus caused this pneumonia. The doctors feel that Grady got a virus that made him sick and because he was so small and already had a cough from a case of bronchiolitis at 2 weeks old, his body just couldn’t fight the virus and that’s why he stopped breathing.
The final step in getting Grady home from the hospital was to get him off his feeding tube and taking bottles regularly. The feeding tube was removed on January 29, 2008. On January 30, 2008, Grady was discharged from the hospital. Unfortunately, Grady started having breathing troubles again on February 5 and was admitted to Riley again. This time he had a virus but they also started treating him for asthma like symptoms. He was discharged on February 9, 2008. Due to the viral nature of his illness(es), his asthma symptoms, and his young age, the doctors don’t want Grady at his daycare until the 19th of February. They feel this will give him time to continue healing before being exposed to more germs at the daycare. Grady was also sent home with a sleep apnea monitor.
Mommy and Daddy are very grateful to our families and friends for all of their support during this time. We are also thankful to the doctors and nurses who took care of Grady. We felt blessed to be at Riley and lucky to receive a sleeping room for two nights at the Ronald McDonald House. This ordeal taught us a lot about charity and faith. We urge everyone to be trained in CPR and to donate their time/money to Riley and the Ronald McDonald House.











MARCH
Grady started getting sick the evening of March 3 into the morning of March 4, 2008. He was home with Ryan and Taylor while I was at work. He had a big gaggy burp the morning of March 4 but was fine when I left for work. Ryan says he didn’t want to eat and just wanted to sleep. This was our first clue. His breathing got grunty again and Ryan called me at work. I headed home but then Ryan called 911 and I met them at the hospital (Community South—EMTs said it was closer). Once there we were transferred to Riley by ambulance.
Grady was running a very high fever when we reached Riley’s ER. They got him on Tylenol and later Motrin. They started more IVs and swabbed him for RSV. We sat in the ER for a long time, they had no beds for us. Right about the time they were going to send us to Riley North, a PICU bed opened up. Grady was intubated in the ER and then transferred to PICU. He wasn’t allowed to eat since he had aspiration pneumonia and they couldn’t risk him aspirating again. He tested positive for RSV this time. He spent about 2 days vented and then was taken off the vent and sent to 3B (isolation floor) after about 4 days in PICU. After about a week in 3B he aspirated again and got taken back to PICU and intubated again. This time we were on PICU north rather than south like the two previous times. He spent about 2 weeks in this PICU. He had some cardiac problems when they started the central line. They had to give him meds to stop his heart and then start it back on the right rhythm. Mom and cardiologist said it was SVT rhythm, some others in the room said V tach. They had to get the little paddles out to shock him but luckily they didn’t have to use them. The immunologist came to check on Grady and felt that he didn’t have any immune system issues. A CT scan showed air pockets (sort of like blisters) in his lungs which baffled the drs. but eventually his pulmonologist determined that these were most likely from the pneumonia and venting and we’ll let them be unless they cause more problems. Grady was anemic (probably was since the Feb visit but no one told us and the nurse changed “anemic” to “apnea” at my request because I felt that was a mistake since no one had mentioned anemia before) Anyway, he was anemic so he got a blood transfusion and that helped a lot. He finally got extubated and didn’t look like he was going to make it off of the vent but once we got his withdrawals from the meds under control he was breathing much better. We finally got sent back to 3B where he spent about 2 weeks recovering. Overall, the March visit to Riley was 25 days (March 4-28) and we came home on Grady’s 4 month birthday.
Grady has now spent 40 days in Riley, celebrated his 2 month and 4 month birthdays there, been vented 3 times, gotten a blood transfusion, had more IVs than we can count, been NG and NJ tube fed, on more meds than some adults, had more tests run than we can count, and has come out of it a strong and happy boy. He’s now over 6 months old, strong, healthy, and doing great!















Praise GOD that Grady's healing and getting stronger and healthier (and meaner!) every day! Here's a "healthy" and recent picture:





3 comments:

Lori said...

what a challenging journey your little man had to go through for those first few months of his life... glad to hear he came out strong

Sarah W said...

Praying that this is the end of that long journey! Thanks for sharing Mandy!!

karina said...

Thanks for sharing Mandy. Our short stay with RSV last year seems so trivial compared to this, even to Stellan's. But my Iz was quite a bit older, which I think may be why he didn't get as sick.

Iz now has been diagnosed with asthma, as well as my oldest who also had RSV as a baby. I think there is a corelation between the two. Does Grady have continuing problems/asthma?