Cruisin along...

I have been really bad about updating lately. Everything is going great with Harrison. We have resumed therapies since the surgery. He seems to be recovering nicely with the surgery. We had a little scare with the drainage tube site healing, but luckily it is finally healing. It looks like a dried up umbilical site that just keeps hanging on.

It has been very busy around here with my new preschool position and with William starting school on Monday. We are all anxious to get into our routines and I am sure we will anxious for summer by February. I must admit I caved in and have become addicted to the latest craze...FACEBOOK. Yes, I have joined Facebook.com and I am enjoying seeing people I have not seen since highschool. I have my 20th reunion next summer and now I know I need to work on myself.

Harrison is being referred to a Pediatric Developmental Specialist for his delays. We are making no progress in Expressive Language and his repetitive behaviors are spreading into other areas, so his Behavioral Therapist feels that now is a good time to seek another opinion. I pray that these red flags are all they are RED FLAGS. I could not handle someone telling me anymore bad news. I know that early intervention is the best thing...I'm just not ready for what the future holds. Many parents think about their child's life all the time and that works for them. For me, I try not to think about it too much. I see the scars every day. I hear no words out of his mouth every day. I see him opening and shutting doors every day all day. I see him throwing toys every day. He throws them inside and he will open the back door and throw them outside. This is his day opening and closing and throwing. I adore him and love him and hurt for what he has endured in his short life. And I am only human. This stage of his development is becoming long and remains a high stresser in my life. He does a lot of cute things and those are about 20% of his day. Harrison will be 3 in November and in many ways he is like a 12 month old. It will be one year in November since he took his first step though. I can't believe it has been a year alreay. When I get frustrated with Harrison's behavior I listen to a song I found on the internet. Heaven in your eyes...www.22q.org/music2.html

Go there and listen to it. There are a few others that are just as beautiful. Enjoy. I know...post pictures.

Day 6

Harrison is home! What a week. Considering we were blindsided with this, Harrison handled with courage again. William is feeling a bit "jealous" of all of Harrison gifts he received while at Cook's. Of course, I can't blame him. He is only 7 and it is difficult for him to understand everything that is going on. He just sees his brother always getting gifts when he is in the hospital. In fact, tonight William said he wished he was sick so he could go to the hospital. It just breaks my heart. We explain until we're blue in the face, but he is only 7. Boomer took Will to pick out a frog for himself. This seemed to cheer him up!

As for H, he is doing wonderful. He cried when it was time to leave the hospital. He wanted to stay and play in the playroom. We can't pick him up under the arms until September 12 and there is no swimming until then too. It seems like we were just allowed to pick him up after the last surgery. I hate this part of the recovery. Highchairs and car seats are the worst. No, actually bath tubs. Have you ever tried to pick up a wet 25 pound toddler out of the tub without lifting from the armpits? Try it one night...it is a @#$~^!

Day 4

The pneumothorax will take about 1 to 2 weeks to be completely gone. They are keeping Harrison in the hospital until he will eat and drink his daily intake. His abdomen is still bloated and full of air and poop. When the doctor dug to retrieve the always moving pacemaker he disturbed his bowels. So, Harrison's insides feel like he had a c-section. They are just letting him hang out in the hospital until he can eat and drink. It is 107 here, so being in the hospital is a positive.

Day 3

I left Harrison watching Finding Nemo in his hospital bed. I am teaching Summer Fun this week, so I came home and Boomer is staying with H. I can't believe the one week I work all summer and H is in the hospital. He had a rough day yesterday and this morning. He ate and drank good yesterday morning and by 1 pm he was looking sick. He would not eat or drink anything. He developed another fever. They had him on fluids, but he was not voiding. Let's see, this is what they did...blood work for CBC and WBC, urine test, another blood draw for a culture, suppository to help with you know what, increased his fluid intake, xray this morning, and an echo this morning. The good news is everything has come back negative. The xray still shows air in his chest cavity, but it is a little smaller. The echo shows a little fluid around the heart, but nothing to cause a fever. He had a sponge bath this morning and had a little Vanilla Bean Frappuccino. Mommy knows what he'll drink! Cook Children's is a very proactive hospital. His fever was 101.6 and they were on top of things. The blood culture is still "growing", but I believe they have decided that the constipation was contributing to the fever, as well as early signs of dehydration. The team had him on half the fluids through IV. They did this because they wanted H to drink the rest on his own. He had other plans. I am so glad that Cook is proactive, because this could have gone downhill quickly. The camera is at the hospital, so I will post pics later...I promise!

Surgery Update

I can't upload pictures yet. Okay, surgery did not happen until 8 last night. The case before him ended up taking over 10 hours. Preop kept apologizing and we said we'd rather wait with a hungry 2 year old than to be the parents of the other case. After a long wait we finally met up with H in ICU. They replace his wire and repositioned his pacemaker. All and all it went well, even with a tired surgeon. Last night his xray came back and showed pneumotharax on the right lung. Extra air in the chest cavity. It is slowly decreasing so the plan is to take out the chest tube and hopefully move to the cardiac recovery floor. We will update more later. H looks great and has his frogs surrounding him in bed. And of course, Gordon the train. He has cracked a tiny smile while watching his Thomas the Train movies too.