Blog

$2500 Grant Goal Closing in!

Thank you so much to all who have given funds to COTA, as well as support, love and prayers to my nephew Noah and his family!!! Right now we are a little over $3000 short of raising $25,000!!! Praise God!!! We are so grateful for what has come in Continue Reading »

Surgery Day for Heart Cath and Port

It’s surgery day! Please join us in prayers over Noah & his medical teams today. We are already at the hospital. They are needing some labs prior to and want him on IV fluids prior to surgeries. They are planning to start at 11:30 but since we Continue Reading »

Infusions and Side Effects

This BRAVE boy is such a trooper?? He had his infusion today but has been vomiting ever since. He was going to get his reward candy ( a small thing to help him stay still and keep a good attitude) and I was grabbing chicken dinner for everyone at Continue Reading »

School Update

Noah’s week at school as been better. ?? He isn’t crying every day. We were able to get the Reglan medication approved and started again yesterday to keep his feeds down. He is doing better with the bandage changes, but treatments really wipe Continue Reading »

First Day of School

Noah’s first day of school was rough. Woke up vomiting????????‍?? The worst he has vomited in a long time cuz it was in his sleep so he choked and freaked out. ????He likes his teacher, but cried and cried that no one played with him at recess Continue Reading »

Hectic Schedules

Life has been hectic with all the extra appointments and infusions. The results are still up and down. The good news is that his kidney function is good and that is what we care about most right now besides heart function. The BK virus is very Continue Reading »

Long Infusion and Insurance Refusal

Need prayers!! Noah’s infusion was a very long day but the first results showed some small improvements. He has sensory issues to taking off his bandages resulted in a behavior alert being called! ????????‍??This is when over the whole hospital Continue Reading »

Heart Transplant 7th Anniversary

This day, seven years ago, Noah received his new heart. We fought then to get him approved on the list and we are ready to keep fighting the BK virus. This is one of Noah’s new born photos. Little did we know his heart was failing in these photos. Continue Reading »

Home with a PICC

Noah was able to come home last night. Just in time for us to throw Shane’s birthday party today. Noah handled it well since he couldn’t participate ( Thanks to Mamaw & Papaw’s Lego distraction) There were several bumps along the way in the Continue Reading »

The Plan

The Plan: This is heavy news???? Noah has continued to not feel himself even with antibiotics. I had a phone conference with his medical team to hear the issues, concerns, and plan. The BK Virus is just that a virus . . . There are no antibiotics to Continue Reading »

Bad News

Bad news: Noah’s labs returned showing the BK virus is getting worse despite the aggressive reduction in his immunosuppressant medication. His kidney function is now being affected. This is very concerning and his team has no other treatments. Continue Reading »

Noah is Sick Again

Noah has been running fevers since Tuesday. He had his blood drawn at Riley this morning. Followed by a trip to his pediatrician. He has an ear infection with a sinus infection. Though he is coughing it’s not pneumonia at this time. His belly was Continue Reading »

Noah's Follow Up

Noah’s BK virus is NOT under control and is at the highest possible readings in both urine & blood since his pneumonia diagnosis. In positive news his pneumonia has cleared! However, since he has gotten it every year and each year the occurrences Continue Reading »

Update and Another Insurance Battle!

Noah has been responding to the medication and seems like his pneumonia is clearing. However his urinary issues are increasing again due to the BK virus flaring up when he gets sick. He has his full cardiology work up tomorrow.We do need some urgent Continue Reading »

ER Visit Results

Noah’s Results are in = pneumonia. ??This is his third occurrence this year. This time it is in his right middle lobe. He has already had a round of IV antibiotics and will be on strong antibiotics again for awhile. They are testing the BK virus Continue Reading »

Riley ER Visit

Prayer needed!!! We are on the way to Riley ER. Noah spiked a 103.1 fever today and his cough continues to get worse. Shane is also very sick so we are taking both boys to see what is going on so we don’t have to make two trips with each kid to Continue Reading »

Update on Noah

Heard from cardiology today already from some labs today that heart labs look stable but it will take a few days for BK lab results. In the meantime Noah has 3 sores showing in his private regions which causes more pain & discomfort. This is a Continue Reading »

Our First Event is ONE WEEK AWAY!

So much fun is in store for next Saturday, May 18th! We’ve got 8 baseball tickets for the Indianapolis Indians, a few instapots, and a photography package for the silent auction--just to name a few! Hope to see everyone there!

Continue Reading »

Medals for Mettle

Noah & his siblings were awarded medals from races today as a symbol of the medical race he runs constantly. Noah’s last labs confirmed the BK virus is in his bloodstream. ?? His other labs are doing ok for now. The focus is getting the virus Continue Reading »

BK Virus results are in!

The results of the BK virus are in . . . They were POSITIVE in the urine ???????? ????They called us to the hospital to explain what this means and for a treatment plan. They also ordered the blood test to see if the virus has made it into his Continue Reading »

Going home, but the worst is not over

We are taking the hospital up on taking Noah home later this evening. He has had 2 rounds of IV antibiotics which will put a dent in his infections and they are not planning on giving more via IV. We are waiting for a particular test to come back, Continue Reading »

Noah is admitted to Riley Hospital for Children

Noah is being admitted he has pneumonia in his left lower lobe again. ??The strong IV antibiotics should help him fight it and he will be on g tube antibiotics for several days. The good news is he doesn’t require oxygen support. There are some Continue Reading »

Urgent Prayers Needed!

Pray for Noah . . . As I mentioned in an earlier post he was showing symptoms of illness. His team felt things were getting worse and have sent us to the Riley Emergancy Room. Please pray they figure out what’s going on and that it’s nothing Continue Reading »

GI appointment update

Noah’s GI appt went well today. Despite his lack of weight gain they are allowing us to stay at 2 feeds a day instead of 3 since Noah is becoming very aware that he is “different” and we are trying to help him feel more comfortable around his Continue Reading »

Monthly lab results & bi-monthly heart clinic visit results

Noah’s monthly blood labs & bi-monthly heart clinic were the other day. The ab results are in his BNP lowered a bit so the extra immunosuppressant is working. However his liver numbers are 5 times what they should be. They worry about Continue Reading »

Updates on our Brave Noah

Noah had his genetics follow up this week and they believe he is reacting to his shampoo and body wash. It was Aveeno. He has been suffering from chronic skin infections over the last few years. They recommended going back to Johnson’s baby Continue Reading »

First Day of School

Noah’s first day of school was rough. Woke up vomiting????????‍?? The worst he has vomited in a long time cuz it was in his sleep so he choked and freaked out. ????He likes his teacher, but cried and cried that no one played with him at recess Continue Reading »

More Tests

At Riley Hospital this morning having Noah’s gastric emptying test. This is where he eats eggs that have a special dye in them & they take pictures every hour to see how they are moving through his stomach. Noah’s PICC line unfortunately is not Continue Reading »

PICC Repair

Please pray for Noah! They are repairing his PICC line in a few minutes and they decided to not sedate him. He is terrified & tried to grab onto anything down the hallway. It should literally take a few minutes to fix. However, this will be Continue Reading »

BK Virus Numbers Going Down

Things have continued to be very hectic lately. We had to fit in a Genetics appt, plus regular heart transplant clinic, & still get the 8 hour infusion last week. He did get a little side adventure to a LEGO sale in Franklin over the weekend. We had Continue Reading »

First Day of School

Noah’s first day of school was rough. Woke up vomiting????????‍?? The worst he has vomited in a long time cuz it was in his sleep so he choked and freaked out. ????He likes his teacher, but cried and cried that no one played with him at recess Continue Reading »

Results In and Insurance Refusal

Need prayers!! Noah’s infusion was a very long day but the first results showed some small improvements. He has sensory issues to taking off his bandages resulted in a behavior alert being called! ????????‍??This is when over the whole hospital Continue Reading »