Liams Fontan Surgery Update

Sorry no updates, I didnt have a computer in the hospital, Liam had his Fontan it was about 6 hours, everything went great they said he woke up in the OR and was fighting them off to get tubes out!! It took 7 people to hold him down, and he almost ripped his Foley Catheter out so they removed it before he did get to it and caused a whole other set of problems. Liams Brother and Sisters and Nana and Papa were there at the hospital to support us. about 6 hours later Liam had a siezure that lasted no longer than a minute, they came up to do a brain scan to find out that Liam had a Brain Bleed. They started Liam on siezure medicine and did EEG to make sure he didn't have any sleeping siezures.. When the results came back they said his brain patterns were very slow and showed more siezures so they switched his siezsure medicine to KEPPRA, and did another EEG to make sure that they stopped which they did. Liam wouldnt open his eyes or talk for days, they were getting very worried, Finally after a week Liam woke up but was not talking in full sentences and the words he was saying were very slurred, he said mommy fine but daddy was DOLLY which he could say just fine before surgery as well as apple juice which he was saying Chochle CHU and we couldnt understand. It took a few more EEGS to make sure nothing else was going on, they said it was just from the Swelling in his brain. He recovered thank god, Liams also has a paralyzed lung and diaphram on the right side so he was on oxygen after surgery. Liam was gettignn dishcharged the first week of November, but that Monday he had pain in his leg due to a huge blood clot so Liam is on Coumaden and will remain until the clot is gone and the Hole they put in his heart closes up. So we didnt get home until right before Thanksgiving, Im so grateful for everyone who still follows this blog, Ihave been busy since we have been home and i really should have double checked his sight Sooo sorry for not posting this it saved as draft and i had no clue! Liam is doing well both Heart and Brain.

Liam's Fontan

Liam is having Surgery tomorrow first case!! We are leaving today to have Pre Op Testing. Liams big sissy's College is right near the hospital so when we are finished we are going to pick her up so she can see Liam and spend time with him before the surgery. I will be updating on everything when i can, Jerry will be with me today thru Sunday but after that he will have to return to Work unfortunatly. Please pray for a speedy recovery like the Glenn 5 days!!! They are telling me about 7 to 14 days . Well we are trying to get these kids off to school so we can get down there and get things started so we have more free time with Liam. Thank You for your prayers and support.

UPDATE

SO SORRY FOR NOT POSTING, ITS JUST SO EASY NOT TO POST ANYMORE BECAUSE LIAM IS DOING AWESOME! Liam went to his Heart Cathe and said he was STELLAR! We did not have to spend the night over. They said he was still so little for the 3rd stage Surgery the FONTAN. They want him to gain 5 pounds by atleast July , that is when they want to do his surgery. He weighed 22 pounds in February for his Heart Cathe, I don't know what he weighs now but we have been giving him more cookies and fattening stuff, plus he has been throwing up meals atleast once a day i think because he is so full ughh , Im hoping he has atleast gained some weight, he has filled out more but still so tiny. He finally fits in 18 month Clothes and still wears a # 3 diaper. But he can talk sooooooooooooooooo good! He says sentences and it just amazes everyone someone so tiny can speak so much and clearly! He knows his ABC's and alot of other songs. He knows some of his colors, Orange and Blue and Purple and Yellow, almost has green mixes it up with Yellow but thats ok he is on his way!! He can count up to 18 then skips 19 and says 20!!!! He is so smart and amazes me everyday, here are all the pictures of Liam i have promised and never did! ENJOY, THANK YOU EVERYONE FOR STILL CHECKING UP ON LIAM, I AM SO BLESSED TO HAVE YOU GUYS CARE SO MUCH AND IN OUR LIVES. His bday pic disapeared on us so atleast i got his cake. here are pictures from October thru now

HEART CATHE

Liam is going for his Heart Cathe today! He is 3rd case so at 8am we will be checked in. We are leaving here at 4 am to beat traffic get our parking spot and spend time with Liam. Please pray for our little guy. I never got pictures up since its been really hectic around here, so i will put them all up when we are home. I will be updating on here if i can get to a computer at the Hospital or i can call my brother and see if he can update for us. Its been a long time since Liam's last heart Cathe,and they didn't have to do any procedures any time before, but this time around they were talking about Coiling off Collaterols and ballooning and stenting some arteries. Im not going to know for sure until after he is done. Well off to finish getting things packed up and get on the road. Thank you for your prayers in advance

Merry Christmas and Happy New Year

Sorry for not posting since Liam's birthday, Its been hectic months for us, Liam lost his insurance the end of September and we were not informed until we tried to get his Medicine in August it was denied insurance and we paid out of pocket. We called the insurance and asked what happened and they said it ended and i asked why didnt you send me a letter before it ended? So we sent all our information in and they said they would let us know and a few weeks went by and i called them and they said that they were missing information so i went back in and signed more papers and then i waited 2 weeks and called again and they said they closed the case and we were denied. I asked WHY???!! Because you stated Liam had Insurance, I said where did i state that, so we came back in and the papers asked do you have insurance we checked no, what was the past insurance, we put the Medicaid and the numbers and they were like ooo its our mistake! So we started all over again. Now we are waiting Liam has had his Echo and they said it was time for Surgery! He has to get a sedated echo first and then the Heart Cathe. They said he has some collaterols and they are going down into his lungs so thats why he needs the sedated echo first. Liam has been doing well, he has a cough now so he is on a nebulizer, he has to get well before he can even have the Heart Cathe, he doesn't have a fever just a cough. We had a great Thanksgiving with family and a Great Christmas and New Year i will post the rest of the Birthday pictures and Halloween pictures Christmas.