Monday, March 30, 2009

Thank God Mark continues to do well! Every week for now, we still have to get his blood drawn. (Due to the Coumadin he is taking). He is getting better at sitting there not moving and allowing them to draw his blood. Poor baby, I hate that he has to get use to it. Also that it's just a part of life for him. The "ouchies" on the front of his body (chest and tummy) are getting better. So far so good!
On a different note I have two weeks and a few days before the baby is born. Mark is very excited to Meet Bella-Bella ( We are naming her Isabella-Ariel Soledad Hogle) Isabella; because I read a good story about Queen Isabella in World history & loved the name. Ariel; Kai chose this name, he wanted all his children to have a double name ( i.e. Mark Anthony). Soledad; This is my oma's (grandmother's) name and I love her so much, I just wanted to honor her in a small way.

Saturday, March 21, 2009

Just Want To Say Thanks, To Everyone Out There

We are so happy to be out and free! We just want to say thank you for your prayers, happy thoughts and love. Mark had his check up yesterday (Friday The 20th) everything went great! The doctor is still adjusting the blood thinner meds. That means Mark will continue getting Blood draws every few days till the doc.'s are satisfied with it. The doctors said to keep Mark out of the public for two to three weeks. We are just really happy to be home!
I forgot to mention, when Mark-Anthony was in the hospital he tried to make the life hard for the nurses who cared for him. Sometimes when we would meet the nurse after the nurse change she would say, "so I hear Mark is a little terror" or "I heard Mark tried to make run for it" (Ok pause for a funny story... When we took Mark for a walk with the wagon, we took him to the fountains then to the other side of the building where there was grass. Well we were in the grass making him walk he tried, [well connected to a few machines] to run to car garage. This child weak in body, but strong in spirit tried to get home. So we put him back in the wagon, well he was pointing to the garage saying " I want to go home, please I'm all better!" All the way back to the room he was saying "I don't want to go back to the room, I'm all better, I'm all better!". ) That poor, poor nurse never knew what hit her. She felt so bad. I just had to share that story with you.

Tuesday, March 17, 2009

DAY EIGHT

WE ARE HOME!!!!!!!! wHOOO hOOOO!

Monday, March 16, 2009

DAY SEVEN AT UCLA

Man oh, man are we ready to go home! I 'm ready, Mark is ready everyone is ready! But Mark had to stay one more day for observation. It looks like we WILL go home tomorrow around eleven a.m., that is great news for all involved! The doctors' just wanted to be sure Mark heart rhythm is normal. (Well for him). Still no poop for Mark, but his oxygen is normal. So I hope to tell you we are home and resting on Tuesday night.

Sunday, March 15, 2009

DAY SIX AT UCLA

Today was kinda slow, this morning Mark got his catheter removed. At noon the pace maker was also removed. So today we ran into two problems; problem one, Mark is allergic to Betadine. This was used to cleanse wounds on his neck and reduce the chance of infection. But what happened is, the neck turned red started burning and after 12 hrs. many, many blisters appeared on his neck. That is why in many of his pictures he has something blue or pink on his neck. The blue thing was a cooling gel and the pink thing absorb the moisture coming off the blisters. Big bummer! Problem two, after the surgery his blood oxygen level is supposed to be 93 or higher. (Before surgery it was low to mid 80's). Mark has had to stay on oxygen, because his level is 93 with the oxygen. And without lower. Mark had his last chest tub pulled out yesterday. So I'm guessing that is the problem with his lungs. Right now (9:30 Sunday night) the nurse still hears something in his left lung. We were hoping to go home Monday, but we may need to wait till Tuesday. All this evening we have been working with Mark trying to get him to take deep breaths, take longer walks, blow his whistle, sit up and talk or cry. We really want him to be ready to go home Monday. If we have to wait then we work with him all day trying to get his lung clear! And oxygen level up! Marky just relaxing
A small look at the neck He got some pretty bad blisters on the back of his neck

Saturday, March 14, 2009

DAY FIVE AT THE HOSPITAL








Today was another hard day. After removing the bandage on his neck partially, Pus was found under the rest of the bandage. It too needed to come off. More blood needed to be drawn and the new port place on his left hand would not support the removal of blood. The last drainage tube needed to be removed. It was decided that this would all be done at once. What fun. Marky was given sedation, but showed no signs of being sedated. The bandage was ripped off, the drainage tube pulled out, and Markey was protesting strongly. Still no port for the vampires. They called for ok for more sedative and by this time veins are collapsed. Everyone is exhausted. They still need blood. What a morning. The drugs really kicked in and Markey was saying how good he felt. He asked the nurse with a smile are you going to give me a shot? (This is the same child that was screaming bloody murder 10 min earlier) He got to go outside and look at the fountain in the front of the building and walk on grass on the side of the building. When he went inside he wanted to go in the cafeteria and sit down to eat. He said that he was well and ready to go home NOW! We know that he is getting better and after he does his first elimination, it is all down hill.

Friday, March 13, 2009

Day Four At the Hospital


MARK WAS AND (IS) MAD ABOUT BEING MADE TO WALK!

Today has been an action packed day!! Let me Tell you about it....Before 7am Mark said he was hungry. He drank and ate all of his fruit. They removed the left drainage tube, and said that Marky would walk today! This was an adventure. He had to be unhooked from many machines and set up on portables. Because of the tubes the drainage containers had to be carried. It took 3 people to carry assorted machines and help Markey walk down the hall and back. This was so awesome! When the doctor asked Markey how he was doing, he gave her the feel sorry for me look and said "My Heart"! It was great! She replied,'Your heart is getting stronger'. Markey didn't like that answer. He got back to the sitting chair and fell asleep. He was moved to the bed and given a seditive. He had the ports removed from his neck, and he ate lunch! He had soup, crackers, and chips. He was blowing bubbles and a whistle to help with his lung capacity. He had a port removed from his hand and a new one placed. He posed for pictures with his doctor and played with Batman. He will get up and walk later. What a busy day for a young one!

Notice there is a port in his neck, used as an IV
Blowing bubbles to exercise his lungs
Blowing lots of bubbles (notice the port is now gone from his neck)
This is Dr. Brian Reemtsen he is Chief of Congenital Heart Surgery
( also the Doc who performed Mark's Fontan Surgery)
AND DID A WONDERFUL JOB!

Thursday, March 12, 2009

Day Three at the Hospital



Markey had an interesting night. He was a little more lusid and talkative. He recieved a chest x-ray and then vomited. He developed a little fever. In the morning, he was checked and they decided to remove one of the drainage tubes. They gave him an oral and intraveinous seditive and when it took effect, we went to work. We had to remove the dressing for all three openings and then observed the open wounds. There was no ozing or puss. They quickly removed the middle tube and closed the suture. New dressing was applied. This went remarkably well. He was then moved out of bed to a chair sitting up. This needed to happen for alot of reasons. The chest x-ray showed fluid on and around the lungs. they need this fluid to drain out of the body. With the absence of fluid, this could keep the fevers down and away. Once most of the fluids are gone they can remove the drainage tubes. A heart echo was done while he was sitting up. HE TOOK HIS FIRST BITES TODAY! He ate a bite of a strawberry and a piece of lettuce with Italian dressing. He drank some apple juice. They are giving him anti-nausea medicine to help. He still has to stimulate his tummy to start digesting foods again. They removed his rectal probe for temperature. Yuck! The dietician came and set up Markey's menu. He will be on a med called coumadin. This is to prevent blood clotting. His diet will be for 6 months in stead of 1 month. The diet is the heart healthy diet (Lowfat and limited Sodium). They are now splitting the last drainage tubes to see if they can pull another one out tomorrow.

We used Mark's many stuffed "Lovies" to help him sit up.

Wednesday, March 11, 2009

The Day After


Well today Mark is doing well. Last night at around nine, he was able to drink a little water and have a cherry Popsicle. At 12:00am he had another one. (it might not seem wonderful to you but, normally it takes children a few days to start eating and drinking things). It was just amazing that he started doing this. At 3am Mark was still awake and he had an x-ray and expelled the last Popsicle orally. He developed a little fever and with the help of Tylenol it was disappeared completely. He took a nap at 4:30am to 6:30am and very carefully told his cardiologist "No, No Do not touch me". Later he was examined and was told that he was doing fine. He will get one of the chest tubes removed tomorrow, some of the hard wiring, and will be allowed to sit up in a chair. He is being allowed to eat if he would like, and he will be on a low-fat diet for a month following. Lets keep praying for a speedy recovery!

Monday, March 9, 2009

The Surgery Finally Happened


Our Marky just got out of surgery at UCLA Hospital. The Fontan procedure took about 2 1/2 hours, the surgeon said he did very well and there are no complications. He is in PICU and will remain there for about 2-3 days. They will be removing the breathing tube shortly, but there are still tubes in him and will have to remain in for a few days. We all are thankful that God is keeping his hand on our Marky and we would also like to thank you for keeping him in your thoughts and prayers. But remember he is still in PICU and can still get an infection, which could prolong our stay at the hospital. So your good thoughts and prayers are still needed for a quick recovery, so please keep us in your thoughts & prayers. For those of you who couldn't make it to the hospital, I am including a picture of Marky, but keep in mind, he just got out of surgery.....


Saturday, March 7, 2009

HERE IT COMES

Ok, it looks like the surgery is really going to happen this time. Mark is completely healthy and has no sickness right now! So on Monday March 9th we talk to the nurse, do pre-op. then get settled in. Then have surgery on Tuesday 10th of March. So say a prayer, wish us luck, knock on wood and lets hope it happens this time. I only have six weeks left of pregnancy so if does not happen this time, we'll have to wait awhile before it happens.