4/1/12 11:00am By: Amy Pitts, Mother
Jonah is a fighter. He is doing well off the breathing Tube. They are going to start feeding him little by little via the ng tube again. The cardiologist should be here around eleven. I guess watching church via TV will work today. I think God will understand...
4/1/12 2:30pm By: Amy Pitts, Mother
So I finally got to hold him! With the surgical drain out and food going in his belly...he was quite happy. His blood pressure was the best it has been when I held him! Thanks for the continued prayers.
4/2/12 9:00am By: Amy Pitts, Mother
UPDATE....JONAH IS DOING WONDERFUL! THEY ARE GOING TO DO AN ECHO AND EKG. HOPEFULLY TAKE OUT SOME LINES TODAY AND GO TO THE OTHER FLOOR SOON. (NOT SURE WHAY THAT MEANS) GOD IS GOOD!
4/2/12 6:00pm By: Cori Lee, Cousin
Jonah is doing very well! He had his central artery line removed and is planning to go back up to the 8th floor!! Thank you for the continued prayers!!
4/3/12 9:00pm By: Amy Pitts, Mother
So PRAISE GOD! His genetic testing was normal! We were able to move back into our old BIG room. Then as Linn was getting ready to leave with Gigi and Lily...two musicians came to serenade us. They played the harp for Jonah...just like David played to King Saul...to drive away any evil spirits (1Samuel 16:23)...GOD IS FAITHFUL!
4/4/12 2:00pm By: Linn Pitts, Father
Jonah is a fighter. He is doing well off the breathing Tube. They are going to start feeding him little by little via the ng tube again. The cardiologist should be here around eleven. I guess watching church via TV will work today. I think God will understand...
4/1/12 2:30pm By: Amy Pitts, Mother
So I finally got to hold him! With the surgical drain out and food going in his belly...he was quite happy. His blood pressure was the best it has been when I held him! Thanks for the continued prayers.
4/2/12 9:00am By: Amy Pitts, Mother
UPDATE....JONAH IS DOING WONDERFUL! THEY ARE GOING TO DO AN ECHO AND EKG. HOPEFULLY TAKE OUT SOME LINES TODAY AND GO TO THE OTHER FLOOR SOON. (NOT SURE WHAY THAT MEANS) GOD IS GOOD!
4/2/12 6:00pm By: Cori Lee, Cousin
Jonah is doing very well! He had his central artery line removed and is planning to go back up to the 8th floor!! Thank you for the continued prayers!!
4/3/12 9:00pm By: Amy Pitts, Mother
So PRAISE GOD! His genetic testing was normal! We were able to move back into our old BIG room. Then as Linn was getting ready to leave with Gigi and Lily...two musicians came to serenade us. They played the harp for Jonah...just like David played to King Saul...to drive away any evil spirits (1Samuel 16:23)...GOD IS FAITHFUL!
1Samuel 16:23
4/4/12 2:00pm By: Linn Pitts, Father
Jonah had a really good night and his vitals have been excellent. He is even enjoying the outdoors today!
Jonah is enjoying the outdoors today! You can just see that Jonah knows and LOVES
his Mommy so dearly!! As both Linn and Amy Love him and know he is "Their Little Miracle", a True Blessing from God!
his Mommy so dearly!! As both Linn and Amy Love him and know he is "Their Little Miracle", a True Blessing from God!
Grandma Sue Loves to snuggle Jonah every minute she can! Lily is enjoying her "Cheese Pie" that her Gigi made. Yummm...
I thank you all for you constant prayers...keep praying that he will continue to to be in good health and heal more and more every day so he can go home soon!
Matthew 21:22 "And whatever you ask in prayer, you will receive, if you have faith.”
Mark 11:24 "Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours."
4/5/12 10:30pm By: Amy Pitts, Mother
The nurse took out Jonah's last IV. I am happy. He is on one hour feeds....hopefully he can start taking the bottle tomorrow. He gained 3ounces...now he is 5 lbs and 10 ounces! Thank GOD!
4/6/12 8:59pm By: Amy Pitts, Mother
Jonah is up to 5lbs 12 1/2 ounces! That means he gained two and a half ounces in one day! We also found out he has achalasia...a swallowing disorder. He is going to be put on reflux medication to help with spitting up. His feedings are compressed to half hour feedings. Pray that he starts eating via the bottle so we can go home....my bed is calling my name.
So now your wondering what exactly is Achalasia...
Definition...
Achalasia is a disorder of the esophagus that prevents normal swallowing.
Description...
Achalasia affects the esophagus, the tube that carries swallowed food from the back of the throat down into the stomach. A ring of muscle called the lower esophageal sphincter encircles the esophagus just above the entrance to the stomach. This sphincter muscle is normally contracted to close the esophagus. When the sphincter is closed, the contents of the stomach cannot flow back into the esophagus. Backward flow of stomach contents (reflux) can irritate and inflame the esophagus, causing symptoms such as heartburn. The act of swallowing causes a wave of esophageal contraction called peristalsis. Peristalsis pushes food along the esophagus. Normally, peristalsis causes the esophageal sphincter to relax and allow food into the stomach. In achalasia, which means "failure to relax," the esophageal sphincter remains contracted. Normal peristalsis is interrupted and food cannot enter the stomach.
Keep Praying for Jonah!! He need all the prayers he can!!
Jeremiah 30:17
"But I will restore you to health and heal your wounds," declares the LORD.
4/7/12 9:00pm By: Amy Pitts, Mother
Jonah weighed 5 lbs 13.12 ounces today. The head pediatric cardiologist suggests we let him try to feed by bottle....however if no progress is made, we should consider a g tube be put in Monday or Tuesday. He is afraid that Jonah could acquire an infection if we are here longer than needed. He is now on reflux medication. Please pray that feeding doesn't become frustrating for us. I pray we are out by next weekend.
Just in case you don't know what a "G-Tube is...
4/8/12 11:00pm By: Amy Pitts, Mother
Jonah is now 5 lbs 15 ounces! He slept most of today....probably gaining weight. We will find out if the g tube will be inserted tomorrow. I wish I could have gone to watch Lily at the Easter egg hunt at Fellowship of Oakbrook, but I enjoyed going to church with Sims and Harrison downtown so I could be closer to Jonah just incase. Thanks for letting me tag along Sims! You are an amazing friend. My mom, grandma, papa and great grandmother came with an Easter dinner. Gigi made an amazing cake for the nurses. It was a wonderful day, but still can't wait to go home!
"But I will restore you to health and heal your wounds," declares the LORD.
4/7/12 9:00pm By: Amy Pitts, Mother
Jonah weighed 5 lbs 13.12 ounces today. The head pediatric cardiologist suggests we let him try to feed by bottle....however if no progress is made, we should consider a g tube be put in Monday or Tuesday. He is afraid that Jonah could acquire an infection if we are here longer than needed. He is now on reflux medication. Please pray that feeding doesn't become frustrating for us. I pray we are out by next weekend.
Just in case you don't know what a "G-Tube is...
Gastric feeding tube
A gastric feeding tube (G-tube or "button") is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition. One type is the percutaneous endoscopic gastrostomy (PEG) tube which is placed endoscopically. The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source. A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube that will be external, and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube.
4/8/12 11:00pm By: Amy Pitts, Mother
Jonah is now 5 lbs 15 ounces! He slept most of today....probably gaining weight. We will find out if the g tube will be inserted tomorrow. I wish I could have gone to watch Lily at the Easter egg hunt at Fellowship of Oakbrook, but I enjoyed going to church with Sims and Harrison downtown so I could be closer to Jonah just incase. Thanks for letting me tag along Sims! You are an amazing friend. My mom, grandma, papa and great grandmother came with an Easter dinner. Gigi made an amazing cake for the nurses. It was a wonderful day, but still can't wait to go home!
4/9/12 4:57pm By: Amy Pitts, Mother
Still waiting on an answer about Jonah's surgery to insert his "G-Tube"....
4/9/12 9:53pm By: Amy Pitts, Mother
Jonah had a great day today. He weighed the same as yesterday at 10 am...but I typically don't weigh him until 2 pm so the numbers might be skewed. The plan is to put the g tube in this week. We should have the exact date tomorrow. They performed a test today to check his esophogus and stomach. It looked great. He was able to swallow 1/4 of an ounce at two different times today! Slow progress...but definately in the right direction. Gigi was nice enough to watch Jonah whileLinn took me for a pedicure. It was nice to get out of the hospital for an hour. She has beena God send! Thank all of you for the continued prayers. Jonah is truly blessed to have so many people that love him!
4/9/12 9:53pm By: Amy Pitts, Mother
HE has a plan for each one of us....
Jeremiah 1:5
“Before I formed you in the womb I knew you,
before you were born I set you apart;
I appointed you as a prophet to the nations.”
4/10/12 4:50pm By: Amy Pitts, Mother
Jonah's surgery is Thursday at 7:30 am. Please pray that everything goes smoothly. The surgeon was very nice. They think we will be discharged Saturday morning now....we will see.
4/11/12 8:00pm By: Amy Pitts, Mother
So the next surgery is less than 11 hours away. Putting in a g tube should only require him to be in surgery for less than 2 hours. The hope is he is out of recovery by noon and will be able to go back to the 8th floor. It all depends on how the surgery goes. Please pray for a quick surgery with no complications. Please also pray for a quick recovery so we can go home soon. It gets quite lonely here...4/12/12 7:55am By: Amy Pitts, Mother
So last night it took them an hour and a half to put in his iv....they eventually had to put it in his head :( He is currently in the OR. Luckily he has the same anesthesiologist..she is wonderful. Please pray for him.
4/12/12 8:55am By: Amy Pitts, Mother
As they were filling up his stomach with co2 and found that he has a hernia or two. They are going to repair it now...his surgery will take 45 mins longer :(
Luke 9:23-24
New International Version (NIV)
23 Then he said to them all: “Whoever wants to be my disciple must deny themselves and take up their cross daily and follow me. 24 For whoever wants to save their life will lose it, but whoever loses their life for me will save it.
4/12/12 11:00am By: Amy Pitts, Mother
Jonah is out of surgery...he now has to go to PCICU since he was under anesthesia longer. We don't think we can go home until at least Sunday now :(
4/12/12 9:39am By: Cori Lee, Cousin
Jonah is doing well tonight...He had the "G-Tube" placed in his stomach and the hernias were repaired. Jonah had to have a more blood due to low HCT levels. He was taken off of the breathing tube and was placed on oxygen around 3pm. Jonah is awake and you can tell he is finally getting comfortable. Thank you for all of your prayers and support!
4/13/12 10:07am By: Cori Lee, Cousin
Jonah is one month old today!! He is doing very well today and still in PCICU. Jonah has been up for the last few hours and with the doctors approval they will be able to return to the 8th floor!
4/13/12 2:00pm By: Cori Lee, Cousin
Jonah is leaving the ICU and on his way to his own room! Please pray that Jonah and his family get to go home soon!
Jonah was moved back to the 8th floor around 2pm. He is off oxygen/room air. They are just giving him his first pedialyte feeding via his g tube. They are starting to prepare us for discharge...despite it being several days away. I am getting excited and nervous about the upcoming journey. Praise to God for allowing us to get out of PCICU. They are wonderful there but I rather sleep next to him.
4/14/12 10:00am By: Linn Pitts, Father
So we are two days after Jonah's second surgery. He looks great and is very alert this morning.
4/14/12 6:40pm By: Amy Pitts, Mother
Jonah weighs 6 lbs 6 ozs! He looks great! Looks like we may be going home on Tuesday!
4/15/12 4:30pm By: Amy Pitts, Mother
It is Lily's 2nd birthday today! Linn and I are going to take her to the aquarium for awhile. We will celebrate her birthday once we get home. Poor Jonah had a rough night with reflux...then woke up in pain. He was given a dose of morphene and has been comfortable since. He weighed 6lbs 3ozs today.
4/16/12 5:54pm By: Amy Pitts, Mother
Jonah was 6lbs 2ozs today. He had a real bad night with reflux. They have started him on a third medicine. The plan is for us to go home tomorrow still. I am sooo ready! My friend Emily Kellner stopped by today as well as our friend Ryan Brownlow. Please pray for our pastor. He had a procedure done today as well.
WE GET TO GO HOME!!!!!! AMEN!!!!!! Discharge will take a few hours..but it is worth the wait!
.JPG)
Jonah with his "G-Tube"...waiting to go home!!
4/17/12 3:30pm By: Cori Lee, Cousin
Jonah
is on his way home!!
4/18/12 8:00am By: Amy Pitts, Mother
The first 24 hours have been both wonderful and challenging with Jonah at home. I essentially have become a "nurse" with administering his medications, cleaning his dressings/g-tube and giving him his feedings via g-tube. He unfortunately threw up four times in the first 12 hours. However, today has been rather good. I have a feeling night time is harder on his stomach/acid reflux. I am so happy to be home and appreciate all the support we are receiving. Gigi cooked a wonderful meal tonight and friends and family will be helping the next few days. Thanks everyone! God continues to shine upon us daily!
4/19/12 10:00am By: Amy Pitts, Mother
Last night was quite challenging...only 45 minutes sleep for me. I learned that Linn and I will have to do "shifts". Having him sleep in the room with me all night doesn't work because I am so aware of his gasps of breath, his difficulty swallowing, etc. He slept rather well during the day. I think I am going to ask the doctors to take him off of one of his medications. He stomach is not tolerating it well. A home health nurse came over today. She was really nice, but I can't wait to see Sissy next week. She is one of the nurses from the cardio floor at MUSC. We had an amazing dinner tonight thanks to Renee Hunt Osean. Lily actually ate carrots, potatoes, Italian bread and some roast. Thanks girl! Sorry Mrs. Christine Limehouse Pinckney, when you stopped by, I had just woken up for an hour nap I was taking and Jonah had just thrown up again and used the bathroom again. It takes two people to change his diaper so he doesn't throw up again and Linn was trying to help Lily.
4/21/12 10:34am By: Amy Pitts, Mother
Jonah has had a good day over all. Last night was rough....he threw up several times. This afternoon his doctor switched him from bolus feeding (once every three hours) to continuous feeding (eating a little ALL day). In some ways it is a step back, however if it stops him from throwing up it is worth it. Once the continuous feed was started, he showed signs of hunger and actually drank a 1/2 ounce from the bottle! When I spoke with the doctor's office this afternoon, they want us to come in on Monday now, not Wednesday. They are concerned that he is becoming dehydrated. We will find out Monday if we will be admitted back into the hospital again. Please pray that Jonah can continue to stay home! Thank you Tory Dujnicfor the wonderful meal tonight. It hit the spot! Also, thanks yesterday for the meal from Crystal Manshaem Weeks(along with the news that you are stuck with us a little while longer, he he). We are so amazed of the support that is all around us!
4/22/12 12:49am By: Amy Pitts, Mother
Jonah had an AWESOME night! He only threw up once this morning after I gave him a bath and then laid him down to put on his outfit (wasn't thinking). He is having problems using the restroom still and has soft stool, but we are definitely on the right path. His doctor's office was pleased with the results. Let's hope they are happy when they see his physical appearance as well tomorrow :)
4/23/12 12:39am By: Cori Lee, Cousin
Jonah has a doctors appointment today, please pray that all goes well!!
4/23/12 10:10pm By: Amy Pitts, Mother
Went to the doctor today and he did great. His x-ray and echo-cardiogram were great for his "normal". The surgeon physician said that his incisions had healed wonderfully. There is some concern about the g-tube opening...it is a little pink. We will have to apply special cream to help it heal. Other than that, we don't have to go back until the 4th of May!!! It will literally be an all day visit (from 11am-possibly 5pm), but at least we have a break from the doctors for a bit! Also learned that we will be receiving a certain attachment for his g-tube that most people dream of getting. It will help with his acid reflux. There are perks to taking part in a clinical study :)
4/17/12 3:30pm By: Cori Lee, Cousin
Jonah
is on his way home!!
4/18/12 11:10am By: Amy Pitts, Mother
We had a rough night. He threw up three times in 12 hours...please don't think we are ignoring any of you...just trying to manage things here. We're at the doctors now...keep you posted.
4/18/12 8:00am By: Amy Pitts, Mother
The first 24 hours have been both wonderful and challenging with Jonah at home. I essentially have become a "nurse" with administering his medications, cleaning his dressings/g-tube and giving him his feedings via g-tube. He unfortunately threw up four times in the first 12 hours. However, today has been rather good. I have a feeling night time is harder on his stomach/acid reflux. I am so happy to be home and appreciate all the support we are receiving. Gigi cooked a wonderful meal tonight and friends and family will be helping the next few days. Thanks everyone! God continues to shine upon us daily!
4/19/12 10:00am By: Amy Pitts, Mother
Last night was quite challenging...only 45 minutes sleep for me. I learned that Linn and I will have to do "shifts". Having him sleep in the room with me all night doesn't work because I am so aware of his gasps of breath, his difficulty swallowing, etc. He slept rather well during the day. I think I am going to ask the doctors to take him off of one of his medications. He stomach is not tolerating it well. A home health nurse came over today. She was really nice, but I can't wait to see Sissy next week. She is one of the nurses from the cardio floor at MUSC. We had an amazing dinner tonight thanks to Renee Hunt Osean. Lily actually ate carrots, potatoes, Italian bread and some roast. Thanks girl! Sorry Mrs. Christine Limehouse Pinckney, when you stopped by, I had just woken up for an hour nap I was taking and Jonah had just thrown up again and used the bathroom again. It takes two people to change his diaper so he doesn't throw up again and Linn was trying to help Lily.
4/21/12 10:34am By: Amy Pitts, Mother
Jonah has had a good day over all. Last night was rough....he threw up several times. This afternoon his doctor switched him from bolus feeding (once every three hours) to continuous feeding (eating a little ALL day). In some ways it is a step back, however if it stops him from throwing up it is worth it. Once the continuous feed was started, he showed signs of hunger and actually drank a 1/2 ounce from the bottle! When I spoke with the doctor's office this afternoon, they want us to come in on Monday now, not Wednesday. They are concerned that he is becoming dehydrated. We will find out Monday if we will be admitted back into the hospital again. Please pray that Jonah can continue to stay home! Thank you Tory Dujnicfor the wonderful meal tonight. It hit the spot! Also, thanks yesterday for the meal from Crystal Manshaem Weeks(along with the news that you are stuck with us a little while longer, he he). We are so amazed of the support that is all around us!
4/22/12 12:49am By: Amy Pitts, Mother
Jonah had an AWESOME night! He only threw up once this morning after I gave him a bath and then laid him down to put on his outfit (wasn't thinking). He is having problems using the restroom still and has soft stool, but we are definitely on the right path. His doctor's office was pleased with the results. Let's hope they are happy when they see his physical appearance as well tomorrow :)
Photos from the "Perry Family" in Dallas GA. Taken in Destin FL.
Thank you for all of your prayers and support!!
Thank you for all of your prayers and support!!
4/23/12 12:39am By: Cori Lee, Cousin
Jonah has a doctors appointment today, please pray that all goes well!!
4/23/12 10:10pm By: Amy Pitts, Mother
Went to the doctor today and he did great. His x-ray and echo-cardiogram were great for his "normal". The surgeon physician said that his incisions had healed wonderfully. There is some concern about the g-tube opening...it is a little pink. We will have to apply special cream to help it heal. Other than that, we don't have to go back until the 4th of May!!! It will literally be an all day visit (from 11am-possibly 5pm), but at least we have a break from the doctors for a bit! Also learned that we will be receiving a certain attachment for his g-tube that most people dream of getting. It will help with his acid reflux. There are perks to taking part in a clinical study :)
4/27/12 By: Amy Pitts, Mother
Jonah had an amazing night. The farrell valve bags have done wonders! He is able to use the restroom now without throwing up because the bags help minimize the amount of gas in his stomach! He is so much more comfortable. Thanks Nicole Brownlow for the amazing chicken bog! I was able to run to Michelle Weil's house this morning to pick up some essential oils to help with his cradle cap. Thanks girl! Can't wait to see one of my students and her mom this afternoon! Have a blessed day :)
4/28/12 By: Amy Pitts, Mother
Jonah had an ok day today. He threw up three times today :( Not sure if it was something I ate, or just his stomach. It might also be the fact that we haven't gotten another farrell bag yet. The pharmacy was waiting on a prescription from the doctor, so hopefully we can get new bags next week. You are supposed to change them every 24 hours, but we didn't have another one to change it with, so I cleaned it the best that I could. I am sooooo pleased with his weight gain though. It seems like he is gaining 2 ounces daily :) I was so happy to see Sarah, Becca and Mrs. April Whaley yesterday. Thanks for the great treats and presents too! Jonah will hear those books soon, and Lily has already used the crayons! Then, Stacie Loudin brought over an amazing chicken pot pie. Thanks everyone....we are so blessed to have such an amazing support system.
4/29/12 By: Amy Pitts, Mother
Although Jonah didn't have an eventful day today, Lily sure did! She and I went to church this morning. Jonah got to have some "man" time with Linn. Then, I took Lily to theCharleston Birth Place annual picnic at Wannamaker Park. I got to spend time with Brooke Judd, John Judd, and their beautiful children. Afterwords, took Lily home to get some needed sleep. Jonah and I cuddled on the chair the rest of the afternoon. He threw up two times today. I pray that we can get the Farrell bags back tomorrow so we can curb the throwing up. Marjorrie Householder Walton and her daughters brought over an awesome lasagna. Thanks girls! Thank God for such a beautiful day!
.JPG)
Lily entertaining Jonah after dinner! What a good BIG sister she is!!
No comments:
Post a Comment