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!

Heading Home this Afternoon

We are happy to tell you that we get to go home today! After daily lab draws, Mitchell's blood count is a little low. He is getting some blood right now, & we should be able to leave shortly after.
We're checked out of the hotel & loaded up, just waiting on our little man.
Our first visit to our local cardiologist is tomorrow morning- We will be seeing her weekly; and we will see his pediatrician next week. He will also be followed by Pediatric GI & Neuro, so we will stay busy with appointments.
We are eager to get back home to our girls & be together as a family.
Please continue to pray for Mitchell- he is still considered quite fragile as his heart is shunt dependent. His heart catheterization is scheduled for August 24th, and his next heart surgery will be decided at that time.
We will continue to keep you posted on his progress.