Mitchell's First Christmas

Mitchell Christmas Eve


Mitchell's First Present
Barn & Farm Animals from Grandma Huff


Christmas Morning
Special Present from Grandma Holz


Mitchell & his bear

Cardiology Appointment

Mitchell's appointment went well today.
His weight was down a bit compared to pre-op; but better than when we left the hospital last week. We will continue to work on the total volume of his feedings; hoping to see improvement with his tolerance.
His oxygen saturation peaked at 88%, and his blood pressure was a little elevated. The medication he was on prior to the last surgery was not restarted. We will follow-up with a weight and blood pressure check next week, but he is not due for another echocardiogram for 6 weeks.
Thank you for your continued encouragement.
We are happy to be home & looking forward to Mitchell's first Christmas!
Wishing you all a Merry Christmas!

Sunday before Christmas

Mitchell 7 months today



I came to the blog to update & realized we're a little behind.
We came home Tuesday. Once he recovered regarding his fluid balance, things moved along quickly. Other than a detour from flooding, we made good time and were waiting for Madison when she got home from school.
We are due to see the surgeon in Atlanta to follow-up next month; and our Cardiologist will be watching the stent in his Pulmonary Artery that will need to be dilated in the Cath lab at some point. His next surgery is estimated at 18-36 months.
Thank you to everyone who has faithfully prayed for Mitchell.
His hospitalizations have all been a bit stressful, and it takes a little time to recoup once we are home; but we have so much to be thankful for!

Home tomorrow

Mitchell was transferred to Step Down yesterday afternoon.
He is now on his home regimen for his diuretic medication, and he hasn't required blood pressure medication since 2 pm yesterday.
His feedings are continuous right now and will be for about a month; they don't want to risk added pressure to his new fundoplication. He is tolerating OK, but still sensitive to the volume. His new fundo wrap is actually a little lower than the previous, so technically less stomach volume. He seems to get full and try to reflux. We are hoping to manage with adequate nutrition, but prevent a repeated herniation. Things have healed nicely. The plan is to come back in 3-4 weeks to follow-up with his general surgeon in the office.
Now that things have stabilized with his fluid balance, we are planning to go home. Cardiology has tentatively cleared him to leave tomorrow. We can manage his feedings and some potential medication changes with his cardiologist in Pensacola.
Thanks for your prayers for Mitchell. As usual, he had some stressful circumstances. We are thankful for the grace of God as we face them.
We are looking forward to getting home to our girls.
Thanks to mom, Juliane, Becky, Shawnna & Kelly for entertaining them. They have had quite the fun-filled week.

Post op Day 3

Mitchell is still in CICU, but making progress.
The biggest concern right now is his Blood Pressure; He is requiring a fairly substantial dose of BP medication every 6 hours.
His fluid balance has improved. Since Friday morning, he has been on 2-3 different diuretic medications. I just checked in, and the in-house physician fellow has discontinued 1 of the 3 as he has made progress. His oxygen saturations are adequate on a little oxygen support via nasal cannula.
His blood count had been low since Friday early afternoon related to some bleeding from 1 of his surgical sites. They did not want to transfuse him at that time; it remained low yesterday; but now that he has gotten rid of a lot of his extra fluid (which dilutes the blood), his count is back up.
Happy to see progress- less puffy, less pale; breathing more easily.
Hoping to see progress with his blood pressure.
His feedings are up to his goal of 25 cc/hr; currently a lower concentration than his usual. They have taken things slowly. Other than some occasional coughing (that they think could be related to the feeding tolerance), he has tolerated it quite well.
Thank you to everyone praying for Mitchell!

Post-Op Day 1

We have learned that nothing is simple with Mitchell. He seems to make even the "minor" things significant.
We were very happy to see his breathing tube removed; he's not a fan of waking up to the ventilator. He has been off of it and on regular nasal oxygen since about 9 last night.
He is still in the CICU due to some issues with fluid balance and high blood pressure. We are hoping to see progress as the diuretic medication helps him to remove some of the fluid. As things progress, they will work on weaning his IV medication.
His oxygen saturation has been adequate on 1 Liter of Oxygen; however, he does have some inflammation from the breathing tube, and they have ordered a few doses of a steroid medication. They also ordered a breathing treatment related to some respiratory wheezing.
He had some bleeding from one of his procedures, and his blood count is low. They will recheck his labs in the morning and determine if he will require a transfusion.
An echocardiogram revealed a small effusion (fluid) around his heart. It is small and should not create a problem, but they will keep an eye on it.
We are hoping to see some improvement with his current treatment regimen.

Thank you for your continued prayers.

Out of Surgery

Mitchell is out of surgery and heading to CICU; we are hoping to see him in about 45 minutes. His doctor said that everything went well.
Thank you for your messages/calls & prayers for Mitchell.

Surgery

We were with Mitchell until about 30 minutes ago. Anesthesia took him to prep for surgery. Anticipate surgery starting in about 30 minutes.

SurgeryTomorrow

We are scheduled to be back at the hospital at 6 a.m. Eastern. We expect that he will go back for prep about 7. We anticipate about 2 hours for his surgery, then he will go to the CICU for recovery.
We will update as we have news.
Thank you for remembering Mitchell tomorrow.

Upcoming Surgery

We will be leaving for Atlanta early in the morning. Mitchell has a pre-op appointment at the hospital followed by a visit to the General Surgeon. His hernia surgery is scheduled for Thursday.
Things have been going well. We are happy to see Mitchell more comfortable and tolerating his feedings better.
As of Monday, he weighed 13 lbs. 7 oz. Despite his intolerance to "adequate" volume, he has gained weight. We anticipate that he will be able to tolerate an increased amount of formula after his hernia is repaired.
His appointment also included an echocardiogram- his heart function looks good, and his oxygen saturation was as high as 90. However, his cardiologist noted that the stent in his pulmonary artery may be too small. She will keep an eye on this, but he may require another visit to the cath lab to place a larger stent.
We appreciate your prayers for Mitchell as he has surgery Thursday; we will update once we have a scheduled time.

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.

Saturday afternoon update

Jodi has asked me (Ted's mom) to update the blog; this will be a simplified explanation of the latest developments. Mitchell had a slight setback last night caused by a significant decrease in his oxygen saturation levels. The reason for this is complicated, and I won't attempt to go into the details. Suffice it to say that he was sent back to CICU and will be staying there tonight. The good news is that his levels have improved greatly, and they are now weaning him off of the oxygen. The plan is for him to return to Step Down tomorrow. Jodi said he is not only awake this afternoon but even smiled:)! I'm sure all three are exhausted - Ted stayed at the hospital last night with the intention of Jodi being able to get some sleep, but, as it turned out, I'm not sure either of them slept. I'm hoping that they can both go to the hotel tonight and, to some extent, relax a little knowing Mitchell will have the full attention of the nursing staff for the evening.

We know that the Lord is completely in control of little Mitchell's situation, but the ups and downs are obviously stressful for his parents and all of the family. Thank you for your continued concern and prayers as they go through this second phase of surgery and recovery.

Day 3 Update

The pain management seems to be improving, but the oxygen saturation levels have been less than ideal. It looks like he was weaned from the oxygen a little faster than his body preferred, leaving O2 levels in the high 70s at best. The oxygen has been turned up, and he's now around 80. We'd ask for your continued prayers that these levels will improve, which will most likely be the remaining hurdle in heading home.

Post-Op Day 3

Mitchell has been able to rest a lot better. He has not had the IV pain medication since the middle of the night. Right now he is receiving Tylenol with Codeine in his G tube every 4 hours. His sats have improved to the mid 80's, and they have been able to decrease his oxygen to 1 Liter. The extra diuretics yesterday helped to remove some of the extra fluid he had.
We are still waiting for the General Surgery consult, but it sounds like we will return in 1 month for a Wednesday pre-op appointment and Thursday surgery. He will have the hernia repair/revision of his fundoplication as well as a couple of out-patient procedures at the same time.
A post-op echocardiogram was done today. We haven't received an official report, but believe everything looked OK with the exception of a peri-cardial effusion (fluid around the heart)- It is very small & not uncommon to see after this surgery. It should take care of itself.
He has been tolerating his feeding quite well. He was just recently increased to 25 cc/hr and to his higher calorie formula concentration.
He is quite sleepy today, but he probably needs the rest.
We are happy to see the progress & look forward to being able to take him home.

Thank you again for your support.

Post-Op Day 2

Today was a long day spent in the ICU. Mitchell is still having a lot of pain, but it does seem to be improving. They have tapered off a bit on the pain medications.
His pacer wires, chest tube, catheter and central line were all removed today.
Now he just has an IV in his arm and upper leg. He also still has the nasal oxygen.
Just before shift change, about 6:30 p.m., he was moved to the Cardiac Step Down unit. We have gotten settled, and hope he can rest tonight.
His feeding was started this afternoon via his feeding tube. They will slowly increase the amount that he receives to ensure he will tolerate it. We should be able to return next month to address the hiatal hernia, but we are still waiting to talk to General Surgery.
Now that he is in the step down, we don't see a continuous monitoring of his blood pressure-just checked every 4 hrs and before his BP medication; but it does seem to be a bit more stable. Still a little higher than they might like post-op.
His sats have fluctuated a bit since he transferred- staying in the 70's with highs in the low 80's at times; this should improve as he is able to eliminate some of the extra fluid he has. They have increased his diuretic medication, so we should see more output.
Thank you for your continued prayers.
I am staying with him at the hospital now that he is out of ICU and more awake.
I will attach a picture of him from this evening- he found a way to make himself comfortable, so we weren't going to try to move him.

More Post Op Day 1

Sorry for the delayed additional update. We stayed with Mitchell in the ICU all day.
Since he is still requiring a lot of sedation, we have returned to the hotel for the night.

He is still having a lot of pain and requiring several sedative/pain medications. He will rest for a bit; and then start to wake up...not very happy. Severe headaches are typical after this heart procedure; this in addition to the incisional/chest tube/new G tube pain.

His heart lines were removed this morning. His oxygen saturations have been stable on nasal oxygen. The drainage from his chest tube has slowed significantly, so it may be removed tomorrow. He still has a central line in his neck, 2 lines in his upper leg, 1 in his arm; and he has pacer wires. His catheter may also be removed tomorrow.

His blood pressure continues to be a little elevated when sleeping and significantly high when he wakes up. 1 of the IV medications was stopped today; the other continues, and they have increased a routine BP medication that is given 3 times daily.

He seems to be making slow progress. It is hard to see him so irritable when he starts to wake up; we hope to see the pain improve soon. Given that his blood flow to the lungs is passive, the crying causes a quick decrease in his oxygen saturation.

We are told that he may be ready to go to the Step Down tomorrow, but we will see. For now, he definitely needs the quick intervention and medication available in the CICU.

An Upper GI was done today- we haven't seen the General Surgeon yet or gotten an official report, but the Cardiac Physician Assistant gave us a preliminary report- it looks as though his fundoplication (stomach portion wrapped around the esophagus) has passed through the diaphragm (Hiatal Hernia). It is likely that this will require surgical intervention, but we are waiting for the consult. We are hoping to get him home and recovered from this big surgery before this is necessary. We may be able to return in a month or so.

Thank you for your continued prayers for our little boy. It is such an encouragement to us.

Post-Op Day 1

Mitchell will be staying in the CICU another night.
Still on medications to keep his blood pressure down- he gets quite upset when he starts to wake up.
1 line coming out this morning.
Oxygen sats stable (high 80's)- on nasal oxygen right now.
Still needs chest tube for another day or so.
No fever this morning.
Need to wait until after physician rounds (10 a.m.) to see him again.

Post-Op Update

Mitchell looks good considering what he has just been through.
As of this evening, he is off of the ventilator and breathing on his own. His oxygen saturations are in the high 70s/low 80s at the moment. We hope to see them improve some as he becomes more awake.
Pain management is a focus right now- he gets quite upset when he starts to wake up; the plan is to keep him medicated and comfortable, so he should sleep well tonight.
His temperature most recently was 101.3. It is not unusual to see this inflammatory response after such a big surgery, but we would like to see this stabilize and return to normal.
He is currently on extra medication to keep his blood pressure in the desired post-operative range. Once again, this is typical as the pain causes an increase.
We appreciated the support of our friends, the Humphreys & our Pastor & his wife during Mitchell's surgery; and we are thankful for the prayers of so many.
We appreciate your continued prayers as Mitchell recovers form his surgery.
He could be moved to the Step Down Unit as early as sometime tomorrow.
We will do our best to keep you up to date.
Ted & Jodi

Out of Surgery

We just spoke to Dr. Kanter.
With the exception of being a hard stick for his lines & quite a bit of scar tissue to get through, everything went well.
He was pleased with the surgery.
He reminded us of the potential complications they will be watching for, but we are thankful for the successful surgery.
General Surgery will see him later this week to determine what needs to be done regarding the hernia.

We hope to see him within an hour or so.

Thank you for your continued prayers!

In Surgery

Mitchell went back for surgery around 7:20. Anesthesiology took some time due to the number of lines that needed to be placed. Then his feeding tube was replaced with a different type, which should reduce the complications we have experienced with defective tubes.

The surgery began at about 9:00, and we should be receiving periodic updates. They did mention that the x-ray showed a significant hiatal hernia, which is contributing to his reflux.

Surgery time

We just got back to the hotel from Mitchell's pre-op appointment.
Everything went quite well with the exception of the lab draws. They finally decided to take care of the rest in the morning once they have access lines. Poor little man did not like those sticks.
He is scheduled for 7 a.m. Eastern. We will arrive at 6 a.m. to check-in.
The prep may take 1 1/2 - 2 hrs and the surgery 4 hrs. or so.
We will do our best to provide an update quickly.

Thank you for praying for Mitchell and for us- must admit I'm feeling a little nervous about all of this.

Bob & Carolyn Humphreys, close family friends, are on their way over to be with us tomorrow during Mitchell's surgery- this is such a blessing to us! They have been with us every step of the way.

We will just spend the rest of the day here at the hotel and try to be ready for our early morning & BIG day!

Family Picture

My friend, Kelly called last Sunday as we were coming home from church & offered to stop by and take a family picture for us before we left.
Thanks, Kelly!

Ready for Surgery

Mitchell saw his Cardiologist yesterday. He was 12 lbs. 8.8 oz- up 6 oz. since last Monday. Dr. Mehta is pleased with this weight going into surgery.
He was quite fussy last night; I checked his temp this morning- 99.2; we are hoping he isn't coming down with something.
We are planning on leaving Sunday. We will find out his surgery time for Tuesday at his pre-op appointment Monday.
Thank you for keeping him in your prayers. We will do our best to keep you up to date on his progress.

Almost 5 months old...2 more days

Sitting Up

Cardiology Appointment

Things remain stable. Mitchell weighed 12 lbs. 2.6 oz and was just shy of 24" long.
Oxygen saturation varied from 81 - 84%.
The function of his right ventricle is still very good, and his shunt is still quite adequate as well.

It's hard to believe that we will be heading back to Atlanta a week from Sunday. We appreciate your prayers for Mitchell as he undergoes another big surgery on the 27th. We have been anticipating this from the beginning, but it's hard to think about giving him back.

We are thankful that God has protected Mitchell & provided an excellent surgeon and hospital to care for him.

His next appointment is next Thursday for a weight/Oxygen saturation check.

Oh, and Mitchell laughed yesterday for the first time- It was wonderful to hear!
When I can capture it on video, we'll add it to the blog.

4 1/2 months

12 Pounds Today!
We have started to notice Mitchell's lips getting blue- first when he was crying; now at times when he is just resting.
Sats were low to mid 80's/ high 70's when crying today.
Had blood drawn to check blood counts, and he will have another Echochardiogram next week.

Surgery is scheduled for 3 weeks from today.

Thank you for your prayers and encouragement.

4 more weeks

11 lbs. 11.4 oz. today- up 4.4 oz. over the last week.
O2 saturation was a bit lower than it has been (low to mid 80's), but an expected occurrence between the 2 surgeries.
His next appt. is October 12th.
Surgery is a short 4 weeks away.

Rom. 8:18 "For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us."

4 months old

Mitchell had his 4 mo. check up this week.
11 lbs 7 oz.- an increase of 6 1/2 oz. for the week. Just shy of hitting the growth chart.
He did hit the 5th percentile for length at 23 1/4 inches.
He has maintained a steady growth, just small.

We are thankful to have a healthy house!
Mitchell was protected from all of it!

He sees his cardiologist on Monday.
Still scheduled for October 27th for his next surgery.

Thank you for your support.

Guest Book

We have been curious as to how many people are following Mitchell's progress.
It is an inconvenience to set up an account and be a "Follower", but under comments you can select Anonymous and sign or leave a comment.
We appreciate everyone praying for him.

Flu Update

Just wanted to let everyone know that the girls are feeling much better- fevers are gone.
Madison is still coughing; she said she only feels bad at night. Looks like we're getting to the end of it.
We are very thankful that Mitchell hasn't developed any symptoms. We'll keep him back in his room a few more days to be safe.
THANK YOU to Heidy for making house calls! Your help was a blessing to us.

Mitchell seems to be doing better on less continuous feeding time. It usually stops about 3 a.m., and the last couple of nights he hasn't had trouble until about 4 a.m. (while it's off). I've waited until about 6 to get him started again. I feel like I am able to get more rest.

Hope you have a nice weekend!

Talking to mommy

Thought I'd share a little of Mitchell with you.

Happy Birthday, Mom!

Happy Birthday, Mom!

Today is my mom's birthday. Unfortunately, we can't do anything special. Of course, she is very understanding. We just want to tell her how much we love & appreciate her! We are so blessed to have her as our mother and the kids' grandma. I don't know how we'd be making it through all of this without her. I wrote her a 'thank you' note a couple of weeks ago- it kept getting longer...and longer..., and I imagine I probably even forgot some things. I think she has made it her mission to help us.

So far, all we have given her is Tamiflu! Hoping to give her her actual gift when we see her after all of this passes.

Flu Update:

Ted stayed home, & is continuing to keep the girls in our room. It was fairly easy to isolate Madison, as she understands more; and was content to rest and watch movies or read. Mackenzie, understandably being only 3, doesn't feel well; and she would like her mommy. Madison was doing her best to look after her, but it helps having daddy home.

Their fevers have improved- only 99.6 this morning after several hours without medicine. To be safe, we need to keep them away from Mitchell for a few more days.

We are thankful that Mitchell is doing OK; no fever or signs of the flu at the moment. But we do need to make it through the weekend (incubation period).

I will do my best to keep you updated.

Thank you for praying for his protection.

Swine Flu

Please Pray for Mitchell's Health

We have kept Mitchell home, only to go out for doctor's appointments in an attempt to keep him healthy.
During the summer months, we were all able to stay healthy.
Since school started, the girls have now gotten sick for the 2nd time.
Our Wonderful friend & Nurse Practitioner came to the house yesterday to assess Madison & swab for the flu. She just called to tell me that the test was Positive for Swine Flu. Mackenzie developed the same symptoms yesterday afternoon. As a preventive measure, she ordered Tamiflu for all of us yesterday, but Mitchell is too young to take the medication. As of today, his only symptom was a slightly elevated temperature- 99.
Madison's symptoms started Sunday evening with Mackenzie following Tuesday. They would expect to see something within about 72 hrs of exposure. We are praying that he is spared from this illness.
Thank you for praying with us for Mitchell.

Another Good Report

Mitchell saw his cardiologist today.
His weight was 11 lbs. 0.8 oz.- an increase of 6 oz. in 11 days; they'd like to see at least 5 oz. a week. He's on a steady growth curve, so they are pleased.
His echocardiogram was consistent with his previous ones- function of his right ventricle is good, and his shunt (conduit from his right ventricle to his pulmonary artery) also looks good.
His oxygen saturation varied from 85 to 89%, slightly lower than his trend; but quite acceptable given his condition.
Because of his feeding difficulties, his cardiologist called his GI doctor while we were there. He actually came and saw him in the same office, so we didn't have to come back another time. He was also pleased with his growth, and commented that it is likely for him to have an aversion to eating. He said not to worry about the oral feedings so much right now; once he recovers from his second surgery (in 6 weeks), we can be more aggressive.
Since he is having trouble with his continuous feeding at night, we are going to switch to more boluses and give him some time off. I think I'll try him continuous for 5-6 hrs (so I can get some sleep), then give him a few hours off before starting his boluses for the day at 5 a.m. We can still get our desired total that way.
Madison still had a fever of 101 today. She has spent the day at grandma's house- hopefully grandma will stay healthy! We are thankful that it hasn't progressed to more than a fever, sore throat & mild headache.
Thank you for praying for our family.
To all of our church family- we sure do look forward to being back as a family. We just need to protect Mitchell for now. He'll have a whole world to explore- the only thing he knows is our house & the doctors' offices.

Grandparents Day

Not so healthy after all

Madison has developed a fever today- 101; she also has a headache and sore throat.
We are hoping to keep this from spreading. Before she was feeling sick, she was holding Mitchell.

Thankful

This past week has been a bit eventful for us.
Anniversaries of events tend to bring back memories & emotions-
Friday, Sept. 11th marked 6 years since my dad passed away after having heart surgery. He was a wonderful man, and I was blessed to have him as my father. Ted was very sweet & brought lunch & roses home for me & mom yesterday.
Thursday brought a bit of a scare- Ted was returning from a business trip in Gainesville and was in an accident. A young driver was trying to turn left in front of a truck, didn't see Ted; and ran right into his drivers' side. He spends a fair amount of time on the road, so I spend a lot of time praying for his safety in travels. He had taken many an uneventful trip until now. I am so thankful that he was not hurt. He tried to convince me he was just fine, but I had to keep checking on him. Thank you to Pastor Cooley who brought him home (His accident was about an hour away, and our pastor happened to be right there when it happened.).
We are thankful that everyone is back to being healthy; we have gotten over the colds/flu that we had.
Mitchell remains stable- he looks great considering everything he is experiencing.
Since our appointment is Monday, we didn't go for the weight check yesterday. I will try to update progress after that appt.
He is still experiencing difficulty tolerating his feedings- his nights seem to be getting worse- more wretching/spitting up & just general GI discomfort. This has been a bit exhausting, but someone lets me get some extra rest when I really need it.
He also isn't making any progress as far as the oral feedings go- I keep trying, but he is just not interested. He needs some coordination with sucking & swallowing. I plan to take a bottle to his appt. on Monday, so his doctor can evaluate. He will likely need a swallow study to make sure it is safe to proceed.
Wishing all Grandparents a Happy Grandparents Day tomorrow!
We sure appreciate our Grandmas and Grandpas...that includes our adopted Grandma Carolyn & Papa Bob Humphreys.
Thanks for everything you do for us!

Quick Update

Ted, Madison & Mackenzie are almost completely recovered from their illnesses. The girls weren't much more than cold symptoms; they were under the weather a couple of days. Ted's was a more significant flu. Unfortunately, mine seems to be starting like his did. Hopefully the Airborne and vitamins will help.
Mitchell has had some cold symptoms as well- runny nose, sneezing... Thankfully, it has remained upper nasal congestion & not gone to his chest. Other than sounding "stuffy" the last couple of nights, he has been doing well.
His weight on Friday was 10 lbs. 10.6 oz.- only 2 1/2 ounces for the week, but at least it is an increase. We have managed to give him an extra ounce each day since then, and he has tolerated it fairly well. Still spitting up some, but not too significant.
Oh, and Madison celebrated her 8th birthday! Thanks to mom buying & preparing her dinner selection & cake, we had a nice family dinner including Juliane's family. Don't know what we'd do without Grandma! I have always been thankful for family, but even more so the last few months!
Mitchell goes for a weight/O2 sat/Blood pressure check on Friday; then his next Cardiology appt. is on the 14th, followed by his 4 mo. pediatrician visit for immunizations on the 21st.
His heart function has remained stable.
We continue to work on his bottle feeding without much success. We are thankful that he is able to get his nutrition thru his feeding tube, but would like to see him advance to oral feedings.
Hoping everyone is having a nice holiday weekend!
Thanks again for praying for our little Mitchell.

Germs

Right now we are working on keeping Mitchell healthy!
Madison came down with a cold Saturday and was sick thru the weekend; it is still lingering a little, but she is feeling much better.
Ted started feeling a bit under the weather on Sunday; by yesterday he was quite sick- looks like he may have a case of the flu. It takes a lot to keep him from the office (& the fact that he needs to accumulate more PTO for Mitchell's next surgery), so missing now 2 days says something about how he is feeling. He hasn't been out of bed since he went to bed Sunday night.
This morning Mackenzie woke up with a runny nose, cough & sneezing. She said, " I think I caught Madison's cold; How did I do that? Because I love her?"
So, Mitchell's room is off limits to everyone except mommy; we are holding him up in here trying to keep him healthy. So far he is doing pretty well; however, he is sounding a little congested, and his noises are a little hoarse. Going to keep up with the nasal spray & try to keep the germs at bay.
...and everyone is using a lot of sanitizer!

We are hoping that everyone will be healthy soon.

2nd Surgery Scheduled

Mitchells 2nd Surgery, The Glenn is scheduled for October 27th. We will head to Atlanta on the 25th to take him for pre-op the morning of the 26th; then we will take him back early on the 27th for his surgery. We don't have a surgery time yet; we will find out at his pre-op appointment.

Things are staying about the same, although he seems to be having more difficulty tolerating his feedings. In spite of his fundoplication for the reflux, he is spitting up more. He also seems to get more irritable with the feedings. The last several nights have been less than fun- needing to stop it periodically, some spitting up, ? gas pains... but we've managed his goal amount.
He is still getting 4 bolus feedings during the day- slowed them down just a bit to see if that would make him more comfortable. I have been holding him straight up during his feedings, and that seems to help. You could say I'm not getting alot done, and someone might be getting a little spoiled. His weight last Wednesday was 10 lbs. 4 oz; we are getting ready to go to the doctor for his weight/sat check shortly.

Thank you for your continued notes/prayers. We feel very blessed by your support.
We hope you all enjoy the weekend with your families.

Ted, Jodi, M, M & M

Update: His weight was 10 lbs. 8 oz. - up 4 oz. in 9 days- not quite as much gain as they'd like, but he's headed in the right direction. We're going to try to add a bit more to his feeding each day to get in a few more calories.
His oxygen saturation was 91 %.
His next appointment is September 3rd, which happens to be Madison's 8th birthday.

Good Report

Jodi and Ted are on their way home from Atlanta and she asked me to share a note with you. Mitchell's heart cath went well, and everything looked OK. His surgery will probably be about a month from now, and they may have the date tomorrow. He travels very well - hope it's the same today. Thank you again for your prayers! Mom Huff

Cath started at 9:05 eastern

Sorry for the delay, We weren't able to get a wireless connection on our laptop. The nurses took Mitchell back to the cath lab at 9:05 this morning. The doctors said gaining access can be time consuming; it could take about 2 hours.
This cath is diagnostic for his 2nd surgery, the Glenn. They are looking at structure- functioning of his Right ventricle as well as anatomy of his aortic arch that was repaired during his first surgery. They will also measure his pulmonary pressures to ensure they are adequate for a successful surgery. We will get results from the Cardiologist today about the cath, but the Cardiology/Surgery team will meet next Monday and determine his surgery date.
Thank you for praying for him. We will try to get results to you as soon as possible.
Our family friends, the Humphreys are on their way from Ringgold, GA and should be here with us shortly.

Mitchell's Heart Cath

I received a call today - We are to take Mitchell to the hospital at 7:15 a.m. Monday in preparation for his heart catheterization. The plan is to be out-patient, but there is a possibility of them keeping him for observation.
We will update as soon as possible on Monday.
Thank you again for your prayers.

3 months old

Thank you all for praying for us & following Mitchell's progress.
Hard to believe, he is 3 months old today!
The Home Health Nurse visited yesterday- he is up to 10 lbs. 4 oz. That made a 4 1/2 ounce increase for the week. He's still not quite on the charts, but following a steady growth curve.
In spite of his fundoplication (his surgery for the reflux), he has started to spit up almost daily. It hasn't been too significant, just a bit uncomfortable for him. Having the tube, it is easy to replace what he has lost. He is still on a continuous feeding at night and 4 boluses during the day. We have been trying to decrease the amount of the time for the bolus- he's almost to an hour. He seems to be sensitive with the increased volume, so we have taken it slowly. We are still working on the oral feedings. He is able to suck & swallow, but we don't accomplish a whole lot. We usually give him about 10 minutes before starting a bolus. Don't want him to work too hard for it.
The Therapy team came last Friday to evaluate Mitchell. A Developmentalist will see him monthly, but the Physical, Speech & Occupational Therapists thought he was on track & will re-evaluate him in about 3 months.
Ted & I will leave on Sunday to take Mitchell to Atlanta for his heart cath on Monday. Mom will stay with the girls, & Madison will start school on Monday as well. We will try to update as soon as we have news on Monday; at the moment, we do not have a time for the procedure. Someone from surgery will also come over & see him in the cath lab. The plan was to change his feeding tube during this trip, but since he had a new one last month; I'm not sure if they will replace it again. His occult blood test is finally negative. Anytime his tube gets changed, it seems to start over again.
Everyone is doing well, & Jodi has survived all of Ted's traveling thanks to her mom & sister's help.
We appreciate your prayers!

12 Weeks Old

Cardiology visit yesterday- 9 lbs. 15 oz.
She continues to be pleased with the results of his echocardiogram.
He had a blood test to check his Hemoglobin/Hematocrit because of the positive occult blood. It was lower than the last time it was checked, but still acceptable.

Requests:
For the bleeding (related to his G-tube & use of his aspirin) to resolve.
To advance with his oral feedings- we held off on his oral trials when he was breathing quickly; and now he is not as coordinated with it. We are attempting to give him a bottle for about 15 minutes twice a day.
Ted will be traveling again this week.
We will be leaving Sunday, the 23rd for Atlanta.
The girls will be staying with grandma, & Madison will be starting her first day of school on the 24th.

Another Good Week

Photos in the Family Room Today


Smiles for Daddy last night


Mitchell has had a good week- 11 1/2 weeks and up to 9 lbs. 9.5 oz. today.
Next week he sees his Cardiologist on Wednesday & is evaluated for Therapy on Friday.
We will be heading back to Atlanta 2 weeks from Sunday for his heart catheterization on the 24th.

Prayer Requests:
Continued health
Since his G tube replacement 2 weeks ago, he has tested positive for occult blood. This is probably due to the irritation from the tube combined with the use of aspirin. We are praying that this will clear up & will not have an effect on his blood counts. His aspirin has been changed to once every 3 days, so we are praying that this is adequate for the conduit in his heart.
Continued strength for all of us- Ted will be traveling again on business several days the next 2 weeks.
A good report from his heart catheterization.

We are looking forward to being past the 2nd surgery & being able to go to church again as a family.
Thank you for your continued support!

Home 1 month

Mitchell was 10 weeks on Wednesday.
Sorry for the delay in posting- we had a nice, uneventful week; Only 1 appointment!
Jodi did stay busy with Ted having a business trip from Tuesday thru Fri. night.
Mitchell saw his cardiologist on Monday- she was pleased with his progress; we actually get a week off this week. His next appointment with her is Wednesday, August 12th.
This week we see Mitchell's pediatrician on Wednesday.
The home health nurse continues to come weekly to check his Blood Pressure, weight & oxygen saturation.
Overall, his progress is good. Cardiology is pleased with his current heart function. They will continue with the echocardiograms to monitor his heart function and for adequacy of the conduit.
As of Friday, he was up to 9 lbs. and 4 oz. They would like to see a 7 oz. gain each week. With the exception of 1 week, he has met this.
Still planning for Mitchell's heart catheterization on August 24th.
Thank you for your continued prayers & notes of encouragement!

Post by Request- Huff Grandkids

Joel's boys- Taylor (16), Tanner (13), Trevor (8)
Juliane's- Bethany (15), Brennan (12), Bennett (6)
Jodi's- Madison (7), Mackenzie (3), Mitchell (2 mo.)
Jon's- Nolan (5 mo.)

Jodi's brother, Joel has been in town this weekend. I was asked to post pictures of the Huff grandkids- all 10 together for the first time. Since we are staying home & missing out on the family activities, everyone met at our house yesterday to take a picture with Mitchell.

Week 3 Remaining Stable

We stayed busy this week with our appointments.
Thankfully, nothing too exciting to report.
As of Friday, Mitchell was 8 lbs. 12 oz. At Monday's appt, he had only gained 2 oz. for the week, so we met with a Dietitian and increased his feedings. He seems to be responding well to the change & gained a few more ounces during the week.

Praises:
His heart function continues to look good, and his respiratory rate has settled down a bit. Still more rapid than normal, but a great improvement from earlier last week.
His Cranial Ultrasound was negative- no signs of his previous hemorrhage.
We have been able to transition Mitchell's feedings. He is getting a 3 hr. feeding over 1 1/2 hrs. now during the day; and remains on the continuous feeding at night. We will continue to work towards a regular bolus feeding during the day.

Prayer Requests:
Ted will be traveling again this week for business.
Continued stability of Mitchell's heart and respiratory status.
For Mitchell's left eye infection to clear up- he has a blocked tear duct that causes drainage from his eye; this week it was more substantial. We started using eye drops yesterday, and it seems to be improving.
New tube again- the surgeon put in a new Mic key g-tube on Thursday at his appointment (to replace the temporary gastrostomy tube he has had). It seems that the changes irritate his stomach, and it takes a bit for him to be comfortable. We are praying that this one stays in!

This week should be a bit less hectic. At the moment, Mitchell only has the cardiology appointment on Monday & home health visit on Thursday. Of course, we have learned that things can change on a daily basis; but we look forward to less running this week.
We will continue the weekly Cardiology appts, but his visits to the pediatrician have been changed to bi-weekly. Our other specialty consultations are done, and we will just need to see them on an as needed basis.

Thanks again for your support. We will continue to keep you posted on any changes or once a week with a general update.

Hope you have a Wonderful Weekend!

Week 2

This week we saw Cardiology on Monday; Mitchell's respiratory rate has been quite fast- his heart function and chest xray look good, so we are just watching him. It has slown down a bit this week, but still a little rapid.
Tuesday we saw his pediatrician- he received a 2nd immunization, and his weight was up to 8 lbs 6 oz.
Wednesday we were established with a Gastrointestinal doctor to follow him related to his fundoplication and Gastrostomy tube. He also had tested positive again for blood in his digestive tract.
Thursday was a visit from the home health nurse, and this morning was a consult with Early Steps- this is a program that will provide therapy for Mitchell in our home.

All of the appointments made for a busy week; grandma watched the girls, and Jodi's nephew, Brennan rode along to the appointments to be of help.
After stopping one of Mitchell's medications, he seems much more content and able to rest more. We are very thankful for this improvement.

Our Prayer Requests:
Mitchell will continue to gain weight- they would like to see 5-7 oz./week.
That his respiratory rate will improve.
That the bleeding will resolve and his blood counts will remain stable.
For resolution of side effects caused from one of his medications- Mitchell started having some involuntary movements of his legs while he was on Reglan- we stopped the medication right away, but he is still having these occasionally.

This coming week:
On Monday we have appointments with the Pediatrician as well as the Cardiologist, so this will be a long day.
Tuesday morning at 7:45, Mitchell has a Cranial Ultrasound at the diagnostic center to follow-up related to his cranial hemorrhage. The last ultrasound in Atlanta had shown this as essentially resolved.
Thursday will be our consulation with Pediatric Surgery; they will follow related to Mitchell's G-tube. We have already had to coordinate with them regarding his tube replacements. We are hoping that this won't be an issue anytime soon again.
Then we will also have visits from the home health nurse as well as the therapists evaluating Mitchell for treatment.

Thank you for remembering us in your prayers. We would also appreciate your prayers for Eli, a precious heart baby in California- He had the same surgery as Mitchell after birth and is now facing complications that could hinder his 2nd surgery.

http://wedehase.blogspot.com/

1st Week Home

We have been staying quite busy just taking care of Mitchell & getting to his appointments. Tired might be understated, but we are thankful to have the opportunity to do so.

Monday included a trip to the Radiology department at Sacred Heart- Mitchell's G tube fell out, & Jodi inserted a new one; but it had to be checked before it could be used again. Thankfully, it was handled quickly enough that he didn't get behind on his feeding for the day.

Yesterday we had a visit to Mitchell's pediatrician- She took alot of time to really get to know Mitchell & his history; his weight was up to 7 lbs. and 13 oz which is quite a jump in 1 week. He also received his first immunization, which may explain why he didn't sleep very well last night.

Thanks to grandma for coming along to make it easier on Jodi.

Today was a welcomed day at home- uneventful. Since we have been home, we haven't had much time to take out the camera; so today I took a few pictures of the kids together. It was when they first got up, so they weren't dressed up (that may have taken too much effort :), but the girls enjoyed playing with their brother & were happy to smile for the camera.

Tomorrow is another visit to the Cardiologist. These weekly visits are very thorough and include an echocardiogram of his heart to monitor his progress.

Thank you for keeping us in your prayers as we are adjusting to being home, & thank you to those offering to bring us meals. (Thanks to Grandma & Juliane, too- we came home to food in our refrigerator & meals for the first few days we were home.)

We may not have a lot of news now that things are settling down. We will try to post an update on Mitchell weekly or in between if there is something to report. As long as things remain stable, our next trip to Atlanta will be August 23rd-25th for a Heart Cath as well as a new G tube on August 24th.

Thank you again.

Ted, Jodi, Madison, Mackenzie & Mitchell

Gettling Settled

Photos: June 27th- Little Man, Big Seat: Car Seat Test (1 1/2 hr test to monitor oxygen saturation in seat);

July 1st- ready to go & getting in the car to go home!

We were finally able to leave the hospital about 6:30 p.m. Wednesday. We were packed up & ready to go- we thought; last thing to do was to switch Mitchell from the hospital feeding pump to ours provided by the home health company. The short version- the set-up provided didn't work; after waiting a couple of hours for a response from the company, our nice nurse found the right supplies to accomodate their pump. Mitchell had a great ride home; he didn't slow us down a bit. We made it home just shy of Midnight Eastern time. We were surprised to see our girls had waited up for us- quite an accomplishment, since they are usually asleep by 8! They, with Juliane & grandma's help, had welcomed us home with decorations & gifts for their brother.
It was nice to get Mitchell settled in his own bed & for all of us to be together at home.
Mitchell had a lengthy appointment with his local cardiologist on Thursday; since they were getting him established, it took several hours. Heart function continues to look good, and the occult blood test was now negative.
We are getting used to our routine- still a little tired, but thrilled to be back home.
I will try to update periodically & add some new pictures.
Thank you again for your faithfulness praying for our little man!

In case I haven't already mentioned- we have been given strict guidelines to follow from his CT Surgeon. Because Mitchell's heart is "shunt dependent", we need to protect him- he can't risk getting sick or getting dehydrated. He needs to stay healthy between now and his 2nd surgery. We were instructed to keep him home with the exception of his doctor's appointments. We are eager for him to meet everyone that has been praying for him, but we will have to wait until after the next surgery to bring him to church or out for activities. After the modifications from the next surgery, he will no longer be dependent on the conduit placed in his heart; We are told that he will be a much healthier boy. We will look forward to all of the visits and activities that we can participate in at that time.

Wishing you all a Happy 4th of July!