Saturday, May 21, 2011

Coming Home Again!

Check it out! I have a foot!
This is the greatest day of my life!
First, apologies for the delay on recent updates. Both Mimi and Aunt Jen are in Gulf Shores this week for Hangout Music Festival. While we are keeping close tabs on baby Matthew, we have not made the time to sit and update the blog.

Next, and more importantly, I bring you great news... Matthew is being discharged this morning from Boston Children's Hospital. He has made a fantastic recovery from his Bidirectional Glenn Procedure (we expected no less, of course!). Just like in December during his Norwood Procedure (first open heart surgery) the one struggle he had was coming off of the O2, but again, he made a phenomenal recovery this week.

We are working on finding new flights for the three of them, to get them back home to Daphne tomorrow.

Sunday, May 15, 2011

Post-Surgery Update

M post-surgery,
on "blow by" O2
Matthew is doing well since his surgery ended Friday night. He was extubated yesterday afternoon and spent most of a day on "blow by" oxygen. This means there is a tube blowing oxygen into his face, rather than the nasal tube of direct oxygen.

However, he did end up needing to have the nasal tube, which you can see in the picture here of the first time Mom got to hold Matthew since before surgery. By all accounts he's doing really well and some staff have remarked "he could be out of here in a week!"

Finally holding Matthew!
Of course we know from his first surgery that hiccups do happen, so just like with all CHD babies, everyone is taking it one day at a time, always hoping for the best but trying to be ready for whatever may come.

Mimi will head home on Tuesday. Grandpa Hall returns Monday.

Friday, May 13, 2011

Surgery Updates

Will & Matthew, pre-op
Hi All,

Aunt Jen here. Mimi is in Boston with Will, Nikki and Matthew, so I will plan to update this post as I receive news. All times EDT:

Friday, May 13
2:30: Matthew is in pre-op. Will and Nikki are still with him at this time
4:30: Matthew's surgery begins
5:45: Matthew is on bypass
8:00: Surgery went well. Surgeons are wrapping up (closing, etc.), then Matthew will be moved out of OR and will have chest x-ray and other tests necessary after the procedure. Probably will be another hour or so before Will and Nikki can visit with him.
11:00: According to Dr. Baird, Matthew's left ventricle was better developed than they anticipated. They proceeded with the Glenn operation, but said there is hope for a future biventricular repair, which is outstanding news.

Matthew is recovering.

Saturday, May 14
9:00am: Matthew is doing pretty well. He is still intubated this morning, but has started breathing over the vent. The weaning process has begun and hopefully he will be extubated by this evening.
6:00pm: Matthew has been extubated and is doing well. He woke up this afternoon for the first time since surgery and he apparently protested rather loudly. The team gave him some meds to calm him and he's resting comfortably now. Now that he's waking up I have a feeling he'll have an update for himself soon... :)

Thursday, May 12, 2011

Matthew's Update From Boston

Hi Friends!

I don't think I've had a chance to talk to you all directly for a couple of months, but I've been spending a lot of time with Mimi and she told me she's been updating everyone. As you know, I'm back in Boston with Mom and Dad, getting ready for my second heart surgery, the first step of the Fontan Procedure. Below is an overview of the issue and the operation, for you really smart folks that like the details. I had the Norwood procedure back in December and now I'm going to have the Bidirectional Glenn procedure this time.

Do I have a story for you!
I was scheduled to have surgery on Monday, but after they made me go to sleep so they could keep me still and get a clear picture of my heart earlier this week, I woke up and have wanted to keep the oxygen ever since. For this reason Doctors Baird and Brietbart decided to move my surgery up to tomorrow.

I heard Dad saying something about Friday the 13th and Mom said that must mean really good luck for me! Plus Aunt Jen told me she and Uncle Ryan intentionally got married on Friday the 13th because they thought it was such a lucky day, so I think this is a great sign.

Dr. Baird told Dad today that I'm in really good shape for this next surgery and they are really excited for a good outcome. Dad told me it's because I've been doing my arm and leg aerobics so much and getting my heart ready!

My Grandpa Hall was planning to be here with us, but Mom's grandma passed away yesterday so he has to be back home with the family. I just found out Mimi has decided to hop on a plane and join us up here for all the festivities. She'll be here tonight and she's going to stay at the hospital with me. It will be just like back home when I get to spend the night with Mimi on the nights Mom and Dad are both working at the hospital!

I think I've told you guys most of the important stuff. You can read more about what the doctors are doing to my heart and why in the information below. Thanks for all your love, thoughts and prayers. I know Aunt Jen and Mimi will keep you updated and I'll write again as soon as I can! XOXOXO!!

Children with hypoplastic left heart syndrome have a single effective ventricle supplying blood to the lungs and the body (either from birth or after an initial surgery e.g. Norwood procedure). They are delicately balanced between inadequate blood supply to the lungs (causing cyanosis) and oversupply to the lungs (causing heart failure). In addition, the single ventricle is doing nearly twice the expected amount of work (because it has to pump blood for both lungs and body).
The Fontan is usually done as a two staged repair.
The first stage, also called a Bidirectional Glenn procedure or Hemi-Fontan (see also Kawashima procedure), involves redirecting oxygen-poor blood from the top of the body to the lungs. That is, the pulmonary arteries are disconnected from their existing blood supply (e.g. a shunt created during a Norwood procedure, a patent ductus arteriosus, etc). The superior vena cava (SVC), which carries blood returning from the upper body, is disconnected from the heart and instead redirected into the pulmonary arteries. The inferior vena cava (IVC), which carries blood returning from the lower body, continues to connect to the heart.
At this point, patients are no longer in that delicate balance, and the single ventricle is doing much less work. They usually can grow adequately, and are less fragile. However, they still have marked hypoxia (because of the IVC blood that is not fed into the lungs to be oxygenated). Therefore most patients are referred for another surgery.
The second stage, also called Fontan completion, involves redirecting the blood from the IVC to the lungs as well. At this point, the oxygen-poor blood from upper and lower body flows through the lungs without being pumped (driven only by the pressure that builds up in the veins). This corrects the hypoxia, and leaves the single ventricle responsible only for supplying blood to the body. 

Tuesday, May 10, 2011

Back In Boston

Here is the most handsome grandson anyone could have!! Well, he has a couple of cousins who are pretty cute too! ;-)

He is also so very precious!! His smile lights up the entire room!

In the pre-dawn hours yesterday, Matthew, along with his mom and dad, boarded a plane and flew to Boston. According to Will, he was a huge flirt on the airplane, no doubt winning the hearts of total strangers!!

Quick Update

Early this morning, Will and Nikki took this picture of our sweetheart, wearing his Bee Happy outfit (on the 'back side', it says "Life Is Good!').

Will just called to tell us that the sedated MRI is complete and Matthew did just fine. A cath is not necessary because the doctors were able to see what they need to see on the MRI. Dr. Breitbart, Matthew's cardiologist at Children's Hospital in Boston, is very optimistic that he will have a very successful Glenn procedure.

All of this is very good news!!