Friday, April 30, 2010

On a lighter note.......Five Things Friday

1. Now that the weather is nicer we have been able to spend more time outside. Travis LOVES looking at trees.....especially when the leaves are swaying in the wind. We decided to take a picture of him and one of his "friends".
2. Travis is such a big boy. This week we went out to dinner and decided we would try a high chair. He did so well in it and LOVED being able to look around at things. He is such the flirt.....he will smile at all the people around and melt their hearts!
3. Last weekend we participated in the Murrieta Relay for Life in honor of my dad. Travis had a good time watching all the activities. Although we didn't stay long.....we had a really great time. I felt inspired by all those people who fight this disease and win!!! Worst thing I heard there is that 1 in 3 people will be diagnosed with cancer in their lifetimes. That is a friggin SCARY statistic!!!!!!

4. Last week when we were trying to get to the bottom of the pulse issue Travis had to have an EKG. He is such a trouper when it comes to these things.....look at that smile!
5. During our "downtime" today we went to Mission Bay park and met up with a couple old friend of Roger's who got to meet Travis for the first time. Nikki and Amanda used to play for Roger when they were younger. Here is a picture of Nikki and Travis. Amanda was sick so she was banished to the outskirts of the blanket and stayed far away from Travis :(. Mission Bay was beautiful and we had a nice visit.

Nothing is ever as it seems..., we were right.

Back story: Last week we were concerned about Travis and the fact that his monitor was going off at night indicating a low pulse rate. Our cardiologist ordered a 24 Holter study to document the rhythm. We received a call on Monday from him stating that he did see a low rhythm but he was not too concerned. Although this troubled us, we trusted that all was okay.

Fast forward to our pre-op visit today: We were supposed to be at Children's at 10:30 am for lab work, meetings with the surgeons, paperwork, etc. We got there and the Cardiovascular Surgery Nurse Practioner had us go into the conference room and started out with the following...."I hate to be the one to have to tell you this".....our hearts sunk to the floor. Turns out the rhythm problems ARE a problem. In a normal 4 chamber heart they would not be, however, as Travis has a single ventricle and is needing another surgery this spelled bad news to them. Their decision was that Travis will need a permanent pacemaker placed during his surgery. 20% of HLHS kids end up needing one but Travis is a bit different because he is needing one so early. In addition to this shocker the NP goes on to tell us that the Echocardiogram results showed a narrowing of the Aorta which will require additional surgical repair. She was under the impression that we would need to postpone the surgery and have a detailed imaging study done on Monday. However, she wanted to have the surgeon and the cardiologist verify this when they were out of surgery so she asked if we could come back later. We left, stunned at this news. Travis seems so healthy to us and all these bad things are going on with his heart. It is unbelievable!

We were called back to the office around 3:00 to meet with Dr. Lamberti (the surgeon). He went into great detail with us about the two "options". #1 do a catheterization procedure to balloon open the aorta and then go ahead with the Glenn procedure and pacemaker or #2 NOT do the Glenn procedure at this time and go in to repair the aorta surgically, change the shunt to a larger one to accomodate his growth, and then place the pacemaker. He stated that the doctors felt more comfortable with option #2 because the other would be a very difficult surgery and he felt the outcome of #2 would be best for Travis.

What this means:
Instead of the Glenn (which would re-direct his pulmonary artery) he will have a second Norwood procedure, similar to the surgery he had in November. They will take out the smaller shunt and put a larger shunt in that will work for up to 6 more months (at which time he would have the Glenn surgery). This also means that Travis will now need a total of 5 surgeries (2 of which he has already had). Adding another surgery is NOT what we wanted to do but we had to make the best decision for him. This also means that Travis will continue to be "medically fragile" until his Glenn procedure, and unable to be around germs or large groups of people. Dr. L said that he would go ahead and do the "Norwood (part B)" on Monday afternoon. Travis will be in the hospital about 7-10 days depending on any complications/etc.

We asked about how difficult this new surgery will be on him (as the last one was tough) and he said that Travis is a lot bigger and stronger now so he anticipates that the recovery, etc. would not be as tough of a course. So we are praying that it is easier on him that the previous one.

We are having a difficult time swallowing all this. I have to be honest and tell you that this is more than any family should have to go through. We look at our little guy and our hearts break for him and all he has to go through. It is hard to stay positive when there are a million unknowns that we will have to face for the rest of Travis' life. Will he be able to run around and be a normal boy? Will he need more surgeries? Will he have learning disabilities due to his hospitalizations? Will he live to graduate college? Will I get to see him get married? There is nothing more difficult then looking at your baby and not being able to see a clear future for him. I have prayed and prayed and prayed for a miracle. I'm not sure I have the right number because all these complications are not the miracle I have been praying for!!

This weekend will be filled with visits with family, errands and quality Mommy, Daddy, Travis time as we prepare for surgery on Monday. We ask that you please drop down on your knees and say a prayer for us, for Travis' surgery, for Travis' life, and for a miracle!!!!!!!!

Monday, April 26, 2010

Video and Picture Update

As we gear up for surgery next week, Roger and I are spending as much quality time with our boy as we can. It is a scary week for our family and we just ask that you pray for us all!!! We have a pre-op appointment at Rady's on Friday morning and we will get more information about the surgery then. Here are some pics and a cute video of Travis in his peanut M & M outfit.


Our little Peanut

Crazy after bath hair

Check out my new cut my hair

Vinny, what are you doing over there?

I love my M & M outfit. I am as sweet as chocolate!

Whatcha doin' daddy?
Skinny little legs

This face melts my can you resist?

More Pics of Travis.

Friday, April 23, 2010

Calling All Blood Types

Just found out that if some of you "Other" blood types (anything but O+ or O-) donate under Travis' name, they will waive our direct donation fee. Of course your blood won't be used for Travis but someone else could use it! Below is the info......

Thursday, April 22, 2010

Surgery has been moved up!!

Travis' surgery has been rescheduled for May 3rd.....that is 11 days away. We are freaking out!!!!! I have been in tears all day. I am thankful they are moving it up but so scared now that it is right around the corner.

BLOOD DONATION UPDATE: If you are O+ or O- and interested in donating blood you must call 1-877-659-2001 and schedule your appointment for any day BEFORE this TUESDAY (4/27)!!!!! Please let me know when you've scheduled your appointment. You'll need Travis' name and birthday, Travis DiCarlo 10/23/09

Wednesday, April 21, 2010

Blood Donation and Update

For those of you interested in donating blood for Travis' Glenn Surgery.....

If you are O+ or O-: You can donate whole blood anytime after May 5th. You will need to make an appointment at your local bank by calling 1-877-659-2001. You will need to have Travis' name and birthday: Travis DiCarlo, 10/23/09. Please do it as close to the 5th as you can as the surgery MAY get moved up!!!! Please let me know once you've set up an appointment so I know if he has enough people.

If you are any other blood type: Travis needs plasma BUT he will get all he needs from one person and Roger will be donating this to him. So, sorry but we can not use your blood for this surgery. BUT...there are other kids that could......go donate anyway!!!!!!

Thanks everyone!

Now a quick update:

Roger and I have been worrying a little bit about how far out Travis' surgery is. Initially we were told that the Glenn surgery would take place when they are 5-6 months old. Travis isn't scheduled for his until he is 7 months old. The scary thing is that the shunt that they put in during the first surgery begins to "wear out" as he gets older/larger. We knew there would come a time when his oxygen saturations would begin to drop a bit and his weight would level out...we just weren't sure it would start happening a month out from surgery. To us...that is scary!

Over the last few days some concerning things have been happening: Travis' appetite has dropped, his oxygen saturation levels are lower than normal, he is sleeping more, and his resting heart rate has been dropping and setting of his heart monitor alarm. We decided to bring up these concerns with his doctors. We took him to his pediatrician and he did an EKG and took an XRay. Both of those looked good. The physical exam of Travis also went well. So, we were sent home somewhat reassured...but we were anxious to see what his cardiologist said. Dr. Levy (his cardiologist) ordered a 24 hour test that will record his heart rhythm to make sure he is not having any abnormalities. That will take place tomorrow through Friday. It is basically a different monitor that he will have to wear for 24 hours. Not really a big deal at all. Dr. Levy also contact Dr. Lamberti's office (the surgeon) to see about moving up the surgery. I am happy about that as I told him that my fear is that we wait to long and it turns into an emergency surgery. So, we should have some news soon on both the rhythm test and the surgery date.....

As you can imagine all this is really stressing us out. It is so scary not knowing what is going on with our little guy. The signs of trouble they want us to watch for, loss of appetite and sleep issues, are all things that happen with "normal" babies too. It is also very difficult for us to determine what is normal for a baby his age because he is our first child. I think our anxiety level will continue to rise until we get through this next surgery and over this huge hurtle.

Please pray for Travis' heart/body to remain strong until his surgery!!! Thank you.

Sunday, April 11, 2010

Directed Blood Donation

I received the paperwork for blood donation from Children's Hospital. Here is the scoop.......Travis is O+ which means he can receive the following:

*Packed Red Blood Cells from O+ or O- donors (can only donate once prior to surgery)
*Platelet/Plasma from O+, O-, A+, A-, B+, B- (can donate every 48 hours/4 weeks respectively)

O+ donors would be the best possible match but he can still receive from those listed above. If you are healthy and interested in donating blood for Travis' surgery please let me know ASAP.

I am trying to arrange for a donation spot in SD as well as Murrieta.


Saturday, April 10, 2010

Six Things Saturday

We didn't get around to posting Five things Friday so instead we are posting Six things this Saturday.

1. We went to the cardiologist this past Wednesday and we brought up a concern that Travis did not seem to be gaining weight as quickly as he had been. The cardiologist mentioned that is to be expected as we get closer to his next surgery. His heart is working harder and therefore burning more of the calories he is eating. He mentioned that we might want to try solids a few weeks early to see if that might help. Travis loves eating his cereal....we will try vegetables over the next week or so. Before yesterday's bath we were happy to see that Travis has gained enough to cross over the 13lb mark! Grow baby, grow!!

2. Travis had a couple of bad nights of sleep this week. He is a bit stuffy in his nose and we think it is keeping him up. We have been taking lots of naps to catch up on our sleep and Roger caught Travis snuggled up with my arm in this picture. Too cute! He must be a side sleeper like daddy!
3. There are two depressed boys and one happy girl in my household now that March Madness is over.

4. Travis' hair is getting quite long and OOC (out of control). We tried to give him a little trim in the bangs and around his ears but he got quite cranky and we couldn't finish. We do the best we can trying to make him presentable. Daddy tried this 'do on him tonight for church. HAHAHA!!
Kind of looks like Bob from Bob's Big Boy!
5. We took advantage of the Stuff-a-bag sale at Babies R Us today and we scored some awesome outfits for Travis. Everything was 24-50% off plus an additional 25% with the coupon. We bought Travis a bunch of clothes in sizes 9-12months so we are ready for his growth spurts! Check out our loot!

6. Tomorrow is Roger's last day of Spring Break. We have had such a great week+ off with him!!! It is so nice to just spend quality time together with no agendas and no rushing around. Now, it is the home stretch until Summer Break!

Wednesday, April 7, 2010

What's up Wednesday.

Travis first attempt at food.

All ready to excited

Yum Yum. This stuff is good.

Daddy and Mommy let me try.

Travis was so proud of himself.

Travis is ready for some baseball.
Travis is the Prince of San Diego.
Travis got to meet his Great Aunt Gloria.
Travis and Daddy enjoying a beautiful San Diego day.