November 1st (Thursday)
From room 814.....
Jonah started looking worse. They ended up taking him to PCICU after placing a chest tube in. The goal was to go back to 8D, however the procedure occured so late, therefore hoped to move back in the am. They allowed me to sleep on 8D, so I was quite excited.
Jonah on his way to have the chest tube put in.
Jonah cuddling with his mama!
November 2nd (Friday)
From room PCICU.....
Plans changed....... Jonah has chyle....a complication from surgery. For 6 weeks, he will have to be on a special formula and will be unable to have breastmilk/other formula. His formula will have NO fat, and help him get rid of this condition. Then we will be able to "try" and reintroduce back after that period.
His blood infection is "strep". I had never know strep outside of ...
His blood infection is "strep". I had never know strep outside of ...
a throat, but evidently is really "rocking" Jonah's world. That and the "Rhino virus" are hard on his system.
He more than likely does have pneumonia from the strep blood infection....but will confirm today.
We will be in PCICU for a few days :( Got kicked out of 8D....but will hopefully go back ASAP.
Please pray for this cold/infection to quickly diminish and for his breathing to get "easier". He stats are currently in the low 70's.....with a TON of oxygen support. Pray for him to rest comfortably and for things to progress.
He more than likely does have pneumonia from the strep blood infection....but will confirm today.
We will be in PCICU for a few days :( Got kicked out of 8D....but will hopefully go back ASAP.
Please pray for this cold/infection to quickly diminish and for his breathing to get "easier". He stats are currently in the low 70's.....with a TON of oxygen support. Pray for him to rest comfortably and for things to progress.
Jonah cuddling with his monkey.
Jonah looking exhausted :(
November 3rd (Saturday)
From PCICU.....
Jonah is always keeping us on our toes. His left lung has collapsed (called atelectasis). His stats have dropped....therefore they have had to stop his feeds. They will do cpt on his chest to try and open it up today. He will probably need a pic line put in Monday as well as a cath. They may also have to pit in a breathing tube. Please pray!!!!!
They have just finished a vapotherm and albuterol treatment on Jonah. Forcing them to try everything prior to putting in a breathing tube. I even got to do cpt on him :) I believe they will do an fray at 230pm to see if his chest has cleared up at all. Please pray it clears up.
......respitory therapist says he has never seen a vapotherm treatment work with a collapsed lung....but he hears it clearing! I told him there is alot of people praying! Will post xray results as soon as we get them v) — with Amy Pitts.
Jonah's last xray showed improvement. Continue to pray that his stats are great during the night and his lungs clear quickly. Thank you Auntie Mare and Uncle John for the hotel room :) Wish you guys were here!!! Praise HIM for all the progress Jonah has made thus far! Thank you for the visit Tim and Sharon Farmer..Lori Sims and Rene Wingate!
Jonah.....swollen face :( Plus....he can't suck his thumb with the socks on. He got his first upper tooth.....but now is swollen in the gums and it went back down.
Jonah enjoyed looking at the monkey and frog and listening to the music.
Holding him is so difficult now. I feel like I am going to end up pulling something on him that will hurt him :(
Doing "CPT"on Jonah.....where's my paycheck?? Haha!
Jonah enjoyed looking at the monkey and frog and listening to the music.
Side sleeping.....
November 4th (Sunday)
From PCICU.....
Jonah is resting better today. His stats are better and his collapsed lung is clearing little by little. They are going to introduce formula again slowly....this is what they use to treat the chyle. They are going to see if he can tollerate it since it is made with milk. Tomorrows plan is to put in the pic line. Goal today is for Jonah to rest and continue to heal.
Jonah is out. He has the pic line in. He is highly sedated...therefore sleeping soundly......and stats are lower than usual. They didn't need the breathing tube!!! Glory be to him.
Jenny's (my sister-in-law's) 30th birthday! LOOK AT THE SIZE OF THE CAKE!!!
After we ate some, she donated the rest to PCICU. It was gone quickly!
Lily and Bella loved the chocolate too. Lily asked for "cake"for several days afterwards.
Amanda and I. She has been one of my "rocks"during Jonah's hospital stays. She is always there for me to call and comes up to visit us. She is one of my BESTEST friends who has always been there for me!
My brother Stephen and HUNGRY Will! That child will eat ANYTHING!!!
Jonah is resting better today. His stats are better and his collapsed lung is clearing little by little. They are going to introduce formula again slowly....this is what they use to treat the chyle. They are going to see if he can tollerate it since it is made with milk. Tomorrows plan is to put in the pic line. Goal today is for Jonah to rest and continue to heal.
Update.... 11/4 9:27pm
Jonah's stats continue to improve. Today's goal was to rest and recouperate, and he did so. We had quite a few visitors today. My brother Stephen came with my sister in law (Jennifer Drew Kosydar), who turned 30 today!! [as well as my neice and nephew]. Lily was excited to play with her cousin. Then my Mom and Dad came back, our friends Brian and Michelle Baumgardner c...
Jonah's stats continue to improve. Today's goal was to rest and recouperate, and he did so. We had quite a few visitors today. My brother Stephen came with my sister in law (Jennifer Drew Kosydar), who turned 30 today!! [as well as my neice and nephew]. Lily was excited to play with her cousin. Then my Mom and Dad came back, our friends Brian and Michelle Baumgardner c...
ame with their children, Ryan and Nicole Brownlow with their son, as well as my good friend Amanda Smith came. It was a busy day visiting, but it helped lift our spirits. We ask for prayer that his PIC line goes in smoothly tomorrow without the use of the breathing tube, as well as positive results if and when they do the ct scan of his "glen" (section of heart). We want to again thank everyone for their outstanding support. Thanks for your help these past few days Russell and Dona Pitts!
November 5th (Monday)
From PCICU.....
Jonah is out. He has the pic line in. He is highly sedated...therefore sleeping soundly......and stats are lower than usual. They didn't need the breathing tube!!! Glory be to him.
November 6th (Tuesday)
From PCICU.....
Jonah looks great today! He is interacting now...and looks more like himself. They did a CT scan to ensure his heart is properly functioning. Please pray the results are positive
....and that he is able to tollerate feeds. If so...we may be able to move back to 8d tomorrow!
....and that he is able to tollerate feeds. If so...we may be able to move back to 8d tomorrow!
Jonah's CT scan showed that his heart is functioning properly. He also had a blood/stool test done and it came back negative for blood. Pray that it continues to come back negative for blood!
Thank you also Jesus for holding our hands today. My mother and I were getting ready to leave Jonah's room for the night, however for some reason we stayed. An unfamiliar female came just outside his area and put a can of Elecare (formula) on his nurse's station. I told her that she was at the wrong station because he wasn't on that formula. She said that she was from the pharmacy and then said, "Is it Jonah"? I said yes. She said, "----- just ordered this formula for him". I told her that Jonah could not be on Elecare because he had chyle, and if he had Elecare, the chyle would come back and harm him. I then opened up his chart to show her the documentation that he was currently on Enfaport. She took the documentation and went to make a copy. She said she would bring the appropriate formula back. I then saw his nurse. I told her that Jonah's Elecare was there. She said, "oh good". I said, "not good". I told her that Jonah had chyle and was on Enfaport. She said, "glad you caught that". I know that God has Jonah covered with a blanket of protection. He is in control and helps remind us daily that Jonah is HIS child.
Thank you Katherine Haygood Owens for the visit today. It was great to catch up!
Thank you also Jesus for holding our hands today. My mother and I were getting ready to leave Jonah's room for the night, however for some reason we stayed. An unfamiliar female came just outside his area and put a can of Elecare (formula) on his nurse's station. I told her that she was at the wrong station because he wasn't on that formula. She said that she was from the pharmacy and then said, "Is it Jonah"? I said yes. She said, "----- just ordered this formula for him". I told her that Jonah could not be on Elecare because he had chyle, and if he had Elecare, the chyle would come back and harm him. I then opened up his chart to show her the documentation that he was currently on Enfaport. She took the documentation and went to make a copy. She said she would bring the appropriate formula back. I then saw his nurse. I told her that Jonah's Elecare was there. She said, "oh good". I said, "not good". I told her that Jonah had chyle and was on Enfaport. She said, "glad you caught that". I know that God has Jonah covered with a blanket of protection. He is in control and helps remind us daily that Jonah is HIS child.
Thank you Katherine Haygood Owens for the visit today. It was great to catch up!
November 7th (Wednesday)
From room 810.....
Jonah is now in room 810. Positive and negatives---they pulled out the chest tube....but now he is full of fluid again. Not because they pulled tube....but because they stopped breathing treatments yesterday (despite my concern). Guess we will be here for awhile. Need everyone to pray that his lung clears quickly. He is doing well with feeds...praise!
When Jonah was in the hospital the first time, two Christian musicians came to serinade us one night. They were amazing....all of us enjoyed the music. Last surgery, I asked one of the techs if they were still coming around. She said she hadn't seen them in along time. I was so sad that they hadn't made their weekly appearance. I again asked the tech if they were coming around when we again got admitted onto the cardiac floor. She again said she hadn't seen them. Yesterday my Mom came with me to get shoes at Kassis Brother's Shoes while Dad stayed with Jonah. I guess Mom told the sales man that Jonah was at MUSC. He said he had a friend that played music at the Children's hospital. Come to find out, it was the same musician! I asked him to have him come play for us.
Hours later, Linn, Lily and I were leaving the atrium where Lily was playing. Who do we bump into, the musicians!! One of them had played for Jonah before and the other was new. That night, they came to play for Jonah. It was like he was in a trance. HE LOVED THE MUSIC!! He was tapping his hand and moving his legs. He was even making noises like he was trying to sing. Sometimes God gives you little blessings to know that he is with you. Thank you Jesus for that amazing gift. Thank you also William Kinard and friend for your uplifting singing and your amazing ministry!
Jonah is now in room 810. Positive and negatives---they pulled out the chest tube....but now he is full of fluid again. Not because they pulled tube....but because they stopped breathing treatments yesterday (despite my concern). Guess we will be here for awhile. Need everyone to pray that his lung clears quickly. He is doing well with feeds...praise!
When Jonah was in the hospital the first time, two Christian musicians came to serinade us one night. They were amazing....all of us enjoyed the music. Last surgery, I asked one of the techs if they were still coming around. She said she hadn't seen them in along time. I was so sad that they hadn't made their weekly appearance. I again asked the tech if they were coming around when we again got admitted onto the cardiac floor. She again said she hadn't seen them. Yesterday my Mom came with me to get shoes at Kassis Brother's Shoes while Dad stayed with Jonah. I guess Mom told the sales man that Jonah was at MUSC. He said he had a friend that played music at the Children's hospital. Come to find out, it was the same musician! I asked him to have him come play for us.
Hours later, Linn, Lily and I were leaving the atrium where Lily was playing. Who do we bump into, the musicians!! One of them had played for Jonah before and the other was new. That night, they came to play for Jonah. It was like he was in a trance. HE LOVED THE MUSIC!! He was tapping his hand and moving his legs. He was even making noises like he was trying to sing. Sometimes God gives you little blessings to know that he is with you. Thank you Jesus for that amazing gift. Thank you also William Kinard and friend for your uplifting singing and your amazing ministry!
November 8th (Thursday)
From room 810.....
Thursday am.
Last night was amazing. Jonah got to listen to his Christian guitar singers! They plaid for one hour for him while he got his breathing treatments!!!! I will post a picture later and tell you the whole story. Let's just say sometimes God gives us little gifts along the way to remind us he is walking with us through trials.
Otherwise.....Jonah had a rough night. He was woken eve...
Last night was amazing. Jonah got to listen to his Christian guitar singers! They plaid for one hour for him while he got his breathing treatments!!!! I will post a picture later and tell you the whole story. Let's just say sometimes God gives us little gifts along the way to remind us he is walking with us through trials.
Otherwise.....Jonah had a rough night. He was woken eve...
ry four hours for respiratory treatments....and coughed in between treatments. At least he can cough! Will continue breathing treatments. New formula is really rough in his belly...so adding a probiotic to help. Going to retest stool again today for blood to check for milk protein allergy. Getting Jonah's GI doctor on board and a pulminologist (despite faces made). I am ready to do whatever it takes to make Jonah better.....not make people's lives easier. Imagine how God feels....if this is how I feel about Lily and Jonah! Looking forward to a visit from Jonah's great-great Grandma Julie, Great Grandma Francie, Papa and my mom. Hopefully will be an uneventful day medically :)
Ps called Dr. Rathod with Boston Children's Hospital to get advice on formula to supplement with. He returned my phone call 5 mins later. I asked if he remembered Jonah's case...he said the receptionist immediately brought the phone message to him and said....it's Jonah's mom......the one in the scrapbook. Glad God had laid that on my heart! Jonah's famous even in Boston!!!
Ps called Dr. Rathod with Boston Children's Hospital to get advice on formula to supplement with. He returned my phone call 5 mins later. I asked if he remembered Jonah's case...he said the receptionist immediately brought the phone message to him and said....it's Jonah's mom......the one in the scrapbook. Glad God had laid that on my heart! Jonah's famous even in Boston!!!
November 9th (Friday)
From room 810.....
Besides getting to hold little man after I gave him a sponge bath, not much has changed. They are still giving him 6 breathing treatments a day with cpt, and his xray looks the same. PT and OT will start coming today. Supposed to have a consult with a pulmonologist today. Dr. Pillai, his GI dr, will be back later with stool results. Praying his lungs will quickly clear up so we can get out of here! Thanks for prayers ;)
Had an interesting conversation with the pulmonologist this afternoon. Tell you more tomorrow night. But, decided to take Lily home one night because Linn got us tickets to Disney on ice tomorrow. We want Lily to know that even though Jonah is sick, she is still our baby too. Linn's sister in law Dona came down with his neice Nicki. They are going to stay with Jonah so Linn can join us. Hopefully the single seat is still available next to us ;) By the way, thanks Jay and Kim Mills for the visit the other night. I am sure you enjoyed the music as well.
November 10th (Saturday)
From room 810.....
Saturday 11/10 update.
So....Linn stayed with Jonah last night while I went home with Lily. I ran last night to buy her a princess costume to wear to Disney on Ice while Dona Pitts and Nikki Dominick stayed with Lily. This morning I frantically got everything ready, just incase we had a viewing. Ran downtown, picked up Linn, Dona and Nikki stayed with Jonah, and we drove to the Coliseum. She couldn't wait to get in the building (not that she understood what was going on) and loved walking around before hand looking at all the expensive paraphernalia. We had her picture taken with a Tinkerbell, since she loves Tinkerbell. We go inside and she is looking around. Mickey, Minney and Goofy come out and she is smiling away. The car the characters are in backfires.....and it is all downhill from there. The volume of the show was obnoxious. Needless to say, we had to leave. Even after several attempts to come back, she would not go in. Guess all we can do is try.
Jonah is doing great though :) He immediately smiled when I got back. I get him new toys everyday from downstairs (spend LOTS of time cleaning them), and has enjoyed spending time in the swing. We have also spent more time lying on our side (since we have a bed that elevates here). He went on his tummy some yesterday with the help of the OT, however they do not work on Saturdays. Hard to do with all the cords! Hope to do more on Monday. Xray looked great this morning. Pray that it continues! Hope we are on the right track.
Hope to have some visitors...it is quite quiet on the weekends.....
So....Linn stayed with Jonah last night while I went home with Lily. I ran last night to buy her a princess costume to wear to Disney on Ice while Dona Pitts and Nikki Dominick stayed with Lily. This morning I frantically got everything ready, just incase we had a viewing. Ran downtown, picked up Linn, Dona and Nikki stayed with Jonah, and we drove to the Coliseum. She couldn't wait to get in the building (not that she understood what was going on) and loved walking around before hand looking at all the expensive paraphernalia. We had her picture taken with a Tinkerbell, since she loves Tinkerbell. We go inside and she is looking around. Mickey, Minney and Goofy come out and she is smiling away. The car the characters are in backfires.....and it is all downhill from there. The volume of the show was obnoxious. Needless to say, we had to leave. Even after several attempts to come back, she would not go in. Guess all we can do is try.
Jonah is doing great though :) He immediately smiled when I got back. I get him new toys everyday from downstairs (spend LOTS of time cleaning them), and has enjoyed spending time in the swing. We have also spent more time lying on our side (since we have a bed that elevates here). He went on his tummy some yesterday with the help of the OT, however they do not work on Saturdays. Hard to do with all the cords! Hope to do more on Monday. Xray looked great this morning. Pray that it continues! Hope we are on the right track.
Hope to have some visitors...it is quite quiet on the weekends.....
Pulmonology
So....after being told that
Jonah's biggest problem was his lungs....I decided to call in a Pulmonologist.
Dr. Bowman ended up coming in and talking to me on Friday. He was very happy
that I had requested to speak with a pulmonologist and felt it was way overdue.
He first asked my opinion.....what??? Someone who wants to listen to me besides
the GI doctor???? I told him I felt that Jonah needed another swallow study
because I felt it was aspirating and his lungs have been a problem for quite
some time. I felt like the cardiologists were knowledgeable about hearts, and
most times could handle simple lung problems; however feel that it is beyond
their scope right now. He agreed completely!! Unfortunately, he feels that
Jonah has been aspirating for months. Now, the question is was Jonah aspirating
just oral feeds, or is Jonah aspirating what he is refluxing from his g-tube
feeds. He wants Jonah to go through another swallow study, however a more
diagnostic one. He also wants a test done to measure his reflux. He will be
working with Dr. Pillai to ensure that Jonah's best interests are in mind. He
wants one of Jonah's diuretics changed, however cardiology will most likely not
agree. He also wants an additional diuretic added. It is sad, that prior to
this time, cardiology would not admit that some issues are "over their
head" and it is better to have a specialist involved. I pray that he has
no long term effects from this issue and feel awful that I had never called in
a pulmonologist before. Then I learn, prior to this happening, another parent
had evidently asked a nurse (while in PCICU) if they normally call in a
pulmonologist because her son's main issue was his lungs. The nurse told her
that cardiology normally handles the whole case and she has never known a
pulmonologist to be called in. She has been working in PCICU for 30 years!!!! I
am not sure how cardiology would feel if the pulmonologist started dealing with
heart issues. I am not telling you this to complain, however I have learned to
listen to my "mommy gut" immensely these past two weeks. I have also
learned it is ok to "shake things up a bit" when it comes to
protecting your child. I again reiterate, how it is so amazing to know that God
protects each and every single one of us. Even Daniel says,
“No, my brothers, you must not do
that with what the LORD has given us. He has protected us and delivered into
our hands the raiding party that came against us.
1 Samuel 30:22-24
1 Samuel 30:22-24
It gives me comfort to know that
we have HIM to back us up at all times to. HE has our best interests in mind
and will never give up. God's in my corner.....is HE in yours?
November 11th (Sunday)
From room 810.....
Thank you Janie Smith for the visit Friday. Jonah and I enjoyed your company! Thanks Emily Kellner for dropping by too! Tell Ethan to watch out.....Jonah's been practicing sitting up with support playing his piano for 10 minutes at a time!
Two of Jonah's "friends" from the heart unit died today. Please keep the families of Teagan and Kriby in your thoughts and prayers. This really hits home and makes it that much scarier.
Thank you Janie Smith for the visit Friday. Jonah and I enjoyed your company! Thanks Emily Kellner for dropping by too! Tell Ethan to watch out.....Jonah's been practicing sitting up with support playing his piano for 10 minutes at a time!
November 12th (Monday)
From room 810.....
Jonah's xray is starting to look better. They are starting to wean him off oxygen little by little. He has lost. 30 kg....approx a 1/2 a lb since we have been here. He looks much better. They will be inserting a probe at 2 pm to measure his reflux. He will have it in for 24 hrs. They are changing him to Tollarex formula today, after much debate. He is allergic to the one they had him on. He will have to be on that approximately 5 weeks. Then, he can go back to bm mixed with Elecare. Pray that the results from reflux test are negative! Thanks for continued prayers. Would like to get out this week, so please pray :)
Jonah's xray is starting to look better. They are starting to wean him off oxygen little by little. He has lost. 30 kg....approx a 1/2 a lb since we have been here. He looks much better. They will be inserting a probe at 2 pm to measure his reflux. He will have it in for 24 hrs. They are changing him to Tollarex formula today, after much debate. He is allergic to the one they had him on. He will have to be on that approximately 5 weeks. Then, he can go back to bm mixed with Elecare. Pray that the results from reflux test are negative! Thanks for continued prayers. Would like to get out this week, so please pray :)
Two of Jonah's "friends" from the heart unit died today. Please keep the families of Teagan and Kriby in your thoughts and prayers. This really hits home and makes it that much scarier.
November 12th (Tuesday)
From room 810.....
Jonah continues to progress! Today he was taken off the Vapotherm oxygen system and put on room air at 30%. He has a reflux probe monitor in his nose that goes down his throat to his g-tube. This is measuring the amout he refluxes and to...
ensure that his medication is working correctly. This will come out today. He is truly becoming BORED of this room! Tomorrow morning he will put his "helmet" back on....and prayers that this will be a short lived accessory. We will see how he does as they "prune" back the oxygen and breathing treatments. He started the new formula yesterday afternoon and is doing well. However, the true results from that on his gut will be in a few days. Continue to keep Kirby and Teagan's families in your prayers. Also pray for the heart unit. The nurses and some of the "residents" were truly touched by these two beautiful babies.
See More
November 13th (Wednesday)
From room 810.....
Jonah's 8 month birthday!!!
November 22nd (Thursday)
Thanksgiving 2012
Jonah's so proud of himself. He loves waving!!
November 23rd (Friday)
Second time sitting in exersaucer........didn't last long
November 24th (Saturday)
Stefanie Sirbas and Tim Satterfield's Wedding!!!
Jonah's first wedding adventure — at The Creek Club At iOn In Mt. Pleasant.
November 26th (Monday)
Happy Days :)
November 27th (Tuesday)
Great news today!!!
Linn and I received the BEST early Christmas present ever!!! We just received a phone call from Greenwood Genetics. Jonah DOES NOT have Kabuki Syndrome. He has inherited the gene deletion from Linn and the gene duplication from me. There is NO further testing needed!!!!
Hey Amy, I saw your post on Kirby's blog and wondered if you were the same Amy from BHES. Turns out it's a small world. I'm sorry to see Jonah at MUSC, but I am so happy to see that he is thriving with his mom on the war path. The FAITH you and the Bradleys have shown on your blogs have moved me in ways I can't put into words. I will pray for you and your family and will check back in soon!
ReplyDeleteAmber Strunck