January 30, 2010

Light at the end of the tunnel!!!!!

We are thrilled to report, Max is sooooo close to coming home!!!!!!

A discharge date of February 9th was given, we may not meet this date but it will be close!!!!!! Max is in the process of being weaned off of two narcotics. He is scheduled to be free of one on February 8th, they will then begin the wean off of the second. Once they know he can tolerate that process, he can come home to us!!!!!!:>):>):>)

We are in the midst of care training, home equipment delivery, etc. A very busy process but also very exciting!!!!

Our next report.......Im confident will be from home!!!:>)

Love and thanks to all

Erin, Rick, Emma, and Max

February 25, 2010

Max's Homecoming on Channel 2 News

Because Max is the youngest patient to have been put on the Berlin heart, followed by a heart transplant, Channel 2 News, WSBTV, reported his story on December 24th. You can see that report with this link:

www.wsbtv.com

They then followed up with a report when Max came home. This was aired on February 21st:

Baby With Heart Transplant Goes Home

www.wsbtv.com

Linda Stouffer reports.

With heartfelt thanks to all,

Erin, Rick, Emma, and Max

February 15, 2010

Visit back to Egleston!:)

Erin, Rick, Emma, and Max

January 11, 2010

Positive update!

4 months ago today, on September 11th, Max entered Children's Hospital. What a journey it has been. We are happy to report we have begun the beginning of the end!! Today, January 11th, Max is moving to stepdown!!!!!!! In this unit, I will reside with Max, Rick will join us after work, so that we can learn all we need to know for his daily care!! When we have learned all there is to know, and am comfortable with it, we will then BRING MAX HOME!!!!!:>):>)

Of course, as our life goes, there has to be conflicts!!haha Our sweet Emma turns 5 tomorrow, not a good time for Mama to be away from home:):>)

With many thanks to all,

Erin, Rick, Emma, and Max :>)

January 5, 2010

Update 1/5/2010

We cannot believe that we are into a New Year and our sweet baby Max is still residing at Children's!!! He is now 4 months old!!!

Max has been struggling with what they call death spells since he had his trach change on 12/29. This was a very trying and stressfull time. They had to put Max back on the paralytic so that he was as still as could be to prevent these episodes from happening.

It was discovered today that the trach tube needed to be adjusted to fit properly. We hope and pray now that we can MOVE ON!! There is a lot for us to learn before we can take Max home with us.

We are ready!!!!!:>)

Keep the prayers coming!!:>):>)

Erin, Rick, and big sister Emma

February 10, 2010

Max is HOME!!!!!!!!!!!:>):>):>)

We have waited SOOOOO long!!!!! After 5 LONG months we are SOOOOOOO very happy to report that Max is FINALLY at home with us!!!! We are soooo very grateful for all the love and support that has helped us get thru this trying time.

We thank each and evey one of you that have kept us going with your prayers and support, without you, our road would have been a tougher one to travel.

With much love,

Erin, Rick, Emma, and Max

December 22, 2009

Success/December 22nd

Max had succesful surgery today. He had a tracheostomy and a gastrostomy feeding tube inserted into his stomach.

It was wonderful to have him come back from surgery and we could see his beautiful face, tube free!!!!:>)

Providing no further complications, we expect that Max will come home to us within the next month!!!!!

Thank you once again for your continued support.

Erin, Rick, and big sister Emma

September 12, 2010

Max's 1st Birthday Celebration!:>)

What a day we had! Everything about it was perfect. Especially the fact that our miracle Max lit up the room!!! He was full of smiles and laughter! The room was filled with joy. To celebrate the fact that God brought our son thru this long hard journey....to have him survive and inspire each and every person he touched along the way....it was amazing! Thank you God!

With much love and thanks

Erin, Rick, Emma, and Max:>)

September 11, 2010

Max 1 Year Old!!

9/11, the one year anniversary of the day our son Max's heart failed him. Today we will celebrate Max's 1st birthday, which was 9/1, with family and close friends.

We will celebrate with joy that Max has fought sooo very hard and come sooo very far in his first year. He is machine free, with just a trach and g-tube. Our hope is that within the next two months he will be trach free.

We give many thanks to all that have prayed with us thru this past turmultuous year.

With Love,

Erin, Rick, Emma, and our Mighty Max:>)

March 24, 2010

7 Months

As we approach April 1st, when Max will turn 7 months old, we are still adjusting to life at home after 2 months.

The most wonderful feeling IS having our family whole again, AT HOME!!!!

What is difficult, is adjusting to what is a new and different normal. Daily medication preps, changing out of equipment parts, dealing with lack of equipment, having to change medication suppliers do to incompetence that could potentially be deadly for Max, road trips for appointments, an hour of preparation for those and the equipment we need to travel with. The fear we live with on a daily basis, what will the day bring for Max. Helping our 5 year old daughter adjust to life with Max, who requires so much of our time for care. With the help of prayer, we are making it!!

We give so much credit to families out there with children, it is a normal struggle on a daily basis to juggle life. There will always be a special place in our hearts for those, like us, whose normal will never be normal.

We thank God every day for our good health, our heatlhy daughter Emma, and for Max, that has survived his early life struggle. God has blessed us.

Erin, Rick, Emma, and Max :>)

December 18, 2009

Update 12/16/09

Max has continued to struggle with the process of being weaned off the respirator. Well, with good reason. It was discovered that the left side of his diaphragm is not functioning properly, not an uncommon occurance after heart surgery. Also, his airway, due the fact that he has had a respirator tube for three months, is not fully developed.

Max will undergo yet another surgery on Tuesday, December 22nd. He will have a Tracheostomy. This will allow him to come home!!!!!!:>):>) He needs time for his body to heal, this will give him the time he needs.

Once again, we thank you all for your continued prayers

that have gotten us thru this process.

Happy Holidays to all

Erin, Rick, and big sister Emma

December 10, 2009

Three months old

Our Mighty Max turned three months old on December 1st. It has been a month since he received his new heart. We wish we could report that he is home with us, but that is not the case. Max is still at Children's Hospital

A week and a half after his tranplant they started the process of weaning Max off of the respirator, it was not going well. He was not able to tolerate it. They started investigating as to the reason why. They discovered air in his stomach. The Dr's feared damage to his intestines. A week and a half after his heart transplant, Max went in for yet another surgery. What was discovered was a hole in his diaphragm. The Dr's repaired the hole and Max started the recovery process yet again, he had been thru so much in such a small time frame.

After this second surgery, Max contracted RSV, a respiratory virus. This was quite a setback.

Today, being December 9th, they are once again starting the process of weaning Max off of the respiratory. Today was a good day, it went very well. Max is looking sooo strong. We will see what tomorrow brings, everyday is something new!

We have no doubt that our Mighty Max is going to win this long battle. Our hope now is that Max will be home for the Christmas holiday, and we can once again be a family.

We thank you all for your continued prayers, we could not endured this process without them.

Erin, Rick, and big sister Emma