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.