Mitchell went to church

Mitchell has continued to improve over the last couple of weeks.
He still has trouble tolerating the volume of formula that he should have based on his size. We are hoping that the hernia surgery will help this.
He weighed 12 lbs. 14 oz. at his appointment last week; this was 2 oz. less than the previous week- not too bad considering he was on a lower calorie formula for the entire week. We have gradually increased the concentration, and he is getting back to his usual; just having trouble increasing the total volume for the day.
He received his seasonal flu shot 2 weeks ago, and his H1N1 vaccine last week; so we took him to church today. It was very nice to go back as a family. We still need to be careful and protect him from the illnesses going around; but his doctor feels that it is OK to take him out now.
This week we see his pediatrician on Wednesday, and we will see his Cardiologist next Monday. He'll receive his 3rd RSV vaccination on the 7th; we'll head to Atlanta on the 8th for pre-op on the 9th and the hernia surgery (along with a couple minor procedures) on the 10th. We are hoping that this will be our last trip to Atlanta for a while.
Thanks again for your support & prayers for Mitchell & our family.
We hope everyone had a nice Thanksgiving!

Progress

So, I haven't been very timely with the blog updates recently. We have stayed busy with Mitchell since we have been home, but I am happy to say that we are seeing improvement.

His issues have primarily been digestive- not tolerating his feedings well & quite unhappy. His GI doctor returned to the office yesterday & saw Mitchell. It is very likely that he had an acute GI issue associated with his hypoxic incident in the hospital. It was encouraging to hear that this isn't a long term problem; the bowel regenerates and heals. While his doctor was out, his cardiologist was very attentive- we gave him a break from his formula & provided a few feedings of Pedialyte; then when we restarted them, we started with a lower calorie concentration than his usual. After almost a week on this formula, he is doing so much better. The 2 doctors are going to get together and discuss some options to help with the continued symptoms, but he didn't feel that it was anything of concern.

He is getting back to a more normal schedule for him- able to rest & take naps again. Still not doing great at night, but he has been through a lot the last few weeks.

We have had 2 Cardiology appts. since we have been back- He is healing nicely from the heart surgery,and everything looks typical at this stage. His oxygen saturations range from 80s to as high as 91 yesterday. The function of the right side of his heart looks good. His weight is stable- a slight increase, right at 13 lbs. now.

We don't have a definite date for the hernia surgery, but Dec. 9th has been mentioned.

I will do my best to continue to provide updates. Thank you for inquiring about his progress and for praying for his recovery.

His next appointment is with Cardiology on Monday; then he will see his Pediatrician for his 6 month visit the following week.

As we are approaching Thanksgiving, we are reminded of all of the things that we have to be thankful for- It is always an encouragement to count our blessings!
God is so good to us...ALL of the time!

Settling in back at home

I'm sorry for not updating sooner.
Things have been a bit busy.
Everyone is already asleep for the night, and I need to wait to start Mitchell's feeding; so I thought I'd give a quick update.
Mitchell has been a bit irritable since we got home- he has several contributing factors, but it seems like his belly/feedings are the primary source right now.
He had started coughing while we were still at the hospital; runny nose and sneezing on the way home- so far it just seems like a cold or mild virus. Hoping it doesn't turn into more. Yesterday, a rash appeared- probably all tied together.
It looks as if he is teething, too- constantly has his fingers or pacifier in his mouth.
Everything has healed up nicely from his surgery, and he is not requiring as many diuretic medications.
Due to our Hurricane Warning turned Thunderstorm Ida, his first appointment here at home was rescheduled for tomorrow afternoon. We are thankful for a very attentive Cardiologist here in Pensacola that has been keeping in touch.
We will be going back to Atlanta sometime next month for the repair of his hernia/revision of his fundoplication. This is not scheduled yet, but we anticipate a Tuesday trip for appt. & pre-op on Wednesday & surgery on Thursday- likely mid December.
We are quite exhausted, but happy to be home.
Hoping to see Mitchell tolerate his feeding better & sleep at night.
Thank you for keeping up with his progress & praying for us!
Good Night!

Oh- and in spite of his discomfort, we are seeing lots of smiles. He is quite entertained by Mackenzie, so she is getting some laughs out of him, too. We are very thankful for the progress.

Going Home

Mitchell's chest xray looked good today, and he has done well off of the oxygen; so we are going home!
Ted is filling his prescriptions right now, & then we will be ready to go.
We are very thankful for the grace of God. We had some stressful moments during his stay, but He has brought us through this time.
We appreciate your continued prayers as he recovers.
He can have his 6 month vaccinations & flu shot 1 month from his surgery date, then we look forward to bringing him out a bit. We still need to be careful, especially as we are entering this flu/viral season; but we are eager to be back at church as a whole family.
Thank you for your support.
Ted, Jodi, Madison, Mackenzie & Mitchell

Status Update Day 9

We are thankful for progress.
Mitchell has had some ups and downs during his stay, but we are happy to report that things seem to be moving in the right direction.
Tuesday night & yesterday brought some digestive issues, but these have improved.
His lungs have been a little wet, requiring some extra diuretic medication. Finding the right fluid balance is the primary focus right now. Once his chest xray looks good, & they can establish a diuretic regimen; we should be able to go home. My guess would be Saturday, but we will see.
We are thrilled to see Mitchell looking more like himself- so happy to see his smiles again. He still gets uncomfortable, but is managed with Ibuprofen & Tylenol for pain now.

Thanks again for your support & encouragement!

Prayers for us to be used by God

I apologize as I only have a moment right now, but we would appreciate prayers for us and for all of the staff that come in contact with us.
We are in a situation not quite typical in that Mitchell has had a few situations during his stay. You could say that everyone knows about him at this point.
We may ask Why has this happened? and the truth is that we may never really know.
We have been praying and asking God to use us- yes, we have frustrations, but we also have an opportunity. As you know, physicians and medical staff have a busy schedule; but we should have the opportunity to sit down with some to discuss Mitchell's condition.
God has been with us every step of the way, and we want to be ready to be used by Him as we come in contact with the hospital staff. Please pray with us that we will have the right words to say and the opportunity to share the love of God.

What greater love than for God to send his son to die for our sins (John 3:16)
"For God so loved the world, that He gave His only begotten Son, that whosoever believeth in him should not perish, but have everlasting life."
A completely free gift to us if we choose to accept it.
"Believe on the Lord Jesus Christ, and thou shalt be saved." Acts 16:31
We were all born sinners & are not deserving of any of it-
Rom. 3:23 says, "For all have sinned, and come short of the glory of God.
Rom. 6:23 "The wages of sin is death; but the gift of God is eternal life through Jesus Christ our Lord."
Rom. 10:13 "For whosoever shall call upon the name of the Lord shall be saved."

Thank you for your support and encouragement.
Mitchell is doing much better since his repair in the cath lab yesterday. We are so thankful that they were able to find and address the problems.
We are praying that if it is God's will, we will see our little boy fully restored in spite of his events that caused lowered oxygenation levels. Mommy & Daddy are longing for those bright eyes & big smile.

Successful Heart Cath

This has been a hectic day, and I apologize for the late post. Ted and Jodi are back at the hotel for the evening, and Mitchell is still sedated and recovering in ICU. The good news is that it appears his catheterization was a success; his color is much better, and his oxygen is at 93% on 2L - an enormous improvement. The details of the procedure are complicated, to say the least, so I will leave that for Jodi to explain later. The important thing right now is that his oxygen sats are greatly improved and stabilized. I hope that tomorrow morning he will look and act more like the little boy they knew before the events of the past week!

Again, thank you for your interest, concern, thoughts, and prayers throughout the past months.

Prayer Request

Jodi called early this morning to let us know that Mitchell is scheduled to have a heart cath today. They hope to determine what is causing the fluctuations in his oxygen saturation levels. Even though this wasn't totally unexpected, it will be difficult for Ted and Jodi to see him go through another procedure so soon after his cardiac surgery. I don't have an exact time, but it sounds as if it will be done fairly soon. We would appreciate your prayers for Ted, Jodi, and Mitchell as well as the medical staff involved in his care. Thank you so much.

God sees the storm from the other side

Ted's mom posted an update for us yesterday.
In short, Mitchell received some "help" that he didn't require a little over 24 hrs ago. This caused somewhat of a downward spiral with his respiratory state. He was transferred back to the ICU and received high flow oxygen for the night. His oxygen saturations were quite low longer than we would have liked, but things have improved. He is back to the basic oxygen by a nasal cannula, and will go back to stepdown tomorrow. We are a couple of days behind due to this incident, but he should be back on track to leave in 2-3 days. His pain has greatly improved, so now it is just a matter of weaning off of the oxygen & maintaining adequate oxygen on room air.
It is difficult to see something like this happen, especially when you are in the room; but not able to prevent it quickly enough. However, it doesn't change the fact that God knows it all- He knew about it before it happened, and Praise God, that Mitchell is in His hands. He couldn't be in a better place. I have learned that I can't control everything; even staying 24 hrs/day, we can't prevent things from happening sometime.
What a testimony our little boy will have! God has brought him through so many hurdles already. I was thinking tonight that stories told are usually triggered by events. An uneventful life for him (which would be the easiest on us), may not have the same impact when shared with others. We have felt from the beginning that God has something special planned for Mitchell. He has survived alot, & his health was protected his entire 1st stage at home. We thank God that no circumstance or human error can keep God from fulfilling His plan for Mitchell. The wall of his bedroom is decorated with the verse from Jeremiah 29, " I know the thoughts I think for you"/ I know the plans I have for you.
It's natural to feel the anxiety of unpredictable/stressful situations. Just remember that God is in control. You've probably heard many times that God won't give you anything you can't handle...that is that you can't handle WITHOUT Him. He gives you the grace & carries you through; We can't do it alone.
We appreciate your prayers. We want God's will for Mitchell- we are praying that if it is His will, Mitchell will be spared from the complications of this hypoxic event.
We serve a Wonderful & Caring God, and He is so Good...All of the time.

One last note- I left the hotel yesterday morning after getting showered & dressed- not really "ready" for the day, a bit emotional & just eager to see our son. I walked outside to feel a brisk wind & mist in the air...I immediately smiled and was reminded of the verse "even the wind and the waves obey him." God brought something right to me that reminded me again...He is in Control of everything.

We hope you all enjoy the services at your churches today. Thank you for taking the time to pray for Mitchell & for us.