Dr appt

We went to see Dr Tong today. Nothing new to report, everything looked normal (for Damon). His sats were 88, he weighs 17lbs and is 28in long. He's a growing boy and eating everything. Today at lunch he ate three containers of baby food, a lot of bread and then was eating off my and my mom's plate.

The day Damon had his 2nd surgery there was a baby born with HLHS named Blake. We got to talk to his mom and dad a few times. He had his 2nd surgery, the Glenn, today. I haven't heard how it went but our God is faithful so I'm sure everything went smoothly. Pray for him and his mom and dad. He's going to be very cranky from the Glenn headache for the next several hours. Talk to you later.

Sarah

Appointment Update

I just heard from Sarah and she said the appointment went really well. Dr. Tong said that everything looks about the same and that he would like to see Damon after he has his heart cath of October 18th.

Jeremy

Not Quite, But Almost

Damon has not started crawling yet, but he is getting really good at pulling up on things and standing up with some help. He is such a happy boy. He likes being in his walker and scooting around on the kitchen floor. Also our family still has colds. First Myles got it. Then he gave it to Damon and I and now Sarah is starting to get it. So hopefully we will all start to get rid of it pretty soon.
Sarah and the boys are heading to Springfield today to go to Dr. Tong, Damon's cardiologist. We are all praying for a good report today. Also being praying for us as we prepare to go to STL in a couple of weeks for Damon's procedure. It is harder on us than on him I think. It doesn't seem like he is even fazed other than no being at home.
So there is a lot going on in our lives, just like everyone else. We appreciate all of the prayers that have been lifted up on Damon's behalf. I hate to think about where we would be without them. We will talk to you soon. After I get an update about the appointment today I will let you all know.

Jeremy

October 18th

Just wanted to let you know that October 18th is when Damon will go to the cath lab. He will have to be up there on the 17th for all of his pre-surgery testing. Please pray for him and for our family. This has been a long journey and sometimes it seems like more than what we can handle by ourselves. That is why we have great family and friends to get us through it. If anymore information changes I will be sure to let you know. Talk to you soon.


Jeremy and Family

Another phone call

Dr Tong called yesterday and said that he sent the results of the perfusion scan to Dr Gandhi and Dr Forrester in STL and Dr Forrester contacted him and said that she'd like to take another look, meaning that Damon has to go back to the cath lab. She doesn't feel that the difference between how his lungs are now and how they were before the balloon they did in May is good enough. Dr Tong explained that to have one lung working so hard is not good and he also mentioned that the lung that isn't working as hard could start secreeting chemicals and cause harm to the good lung, so she wants to go in again and see for sure what is going on. If she gets in there and feels that it's neccessary, she will place a stent in the left pulminary artery.

Damon is too small to have a stent placed in his body and leave it in there for the rest of his life and I questioned Dr Tong about this. He said most likely what would happen would be that if the stent allows the lungs to start functioning properly and they can be that way for a while, then Dr Gandhi would be able to take out the stent during the third surgery. To take out the stent he would have to take out a piece of the pulminary artery and replace it either with a piece of tissue, or artificial tubing.

Since there is a possibility of the need for a stent being placed, Damon will have to be put on the ventilator during this cath. I'm very dissappointed and scared that he has to have this done again, I was really expecting all the drs to say that nothing needed to be done. I kept looking at Damon yesterday and just crying because he isn't going to understand what's going on, all he's going to know is that he doesn't like it and he doesn't feel good. I don't want to put him through it again. Please pray for him that God will heal that pulminary artery (and his aorta too) and that they will find two spots that are normal size and wide open.

P.S. Damon, Myles, and Jeremy all have colds and Damon's little voice is hoarse. It's so sweet to hear him talk, but he needs to get better. Please everyone pray.

Sarah

Phone call

I got a call from Dr Tong on Monday. He called to tell me the results of the perfusion scan, which is nice because I thought we would have to wait until we saw him again on the 27th to hear anything about it. As I've explained before the p.s. is a test that measures how much blood is getting to each of his lungs. Since you have two lungs in your body, the results should be 50/50%. Damon's results are 75/25%. His right lung is getting more blood than his left.

Dr Tong is going to send a letter to Dr Gandhi and Dr Forrester (his surgeon and the dr that did the balloon dialation on his pulminary artery in May) to see what they think of the situation. He said if it was up to him he would not choose to do anything at this time because the risks of going to the cath lab outweigh the risks of not doing anything. I feel that Dr Gandhi will agree with him. I don't feel that he needs anything done right now. Maybe they will just want to monitor it for now. I'll update more on this when I hear from Dr Tong again.

Talk to you later.

Sarah

STL Trip

Sorry I haven't posted before now but all day Friday we thought our phone wasn't working (turns out Myles just plugged the jack into the wrong hole) and then Saturday we were busy.

Damon's test went well. He had to get stuck twice because the first stick the die didn't go in for some reason. The second one was a success. He was so angry though, he screamed almost the whole time during the test. He would start to fall asleep, then he would wake back up and scream, but finally did fall asleep by the end. As soon as the test was over one of the ladies picked him up and he laid his head on her shoulder and just snuggled with her, then he was all smiles after that. He's so sweet!

We won't get the official results until we go to see Dr Tong on the 27th, but from what I could see it didn't look as bad as the one he had in May that showed that one of his lungs was getting 82% oxygen and the other lung was getting 18%. If I had to guess I would say it's about 70/30% or maybe 65/35%. I don't think Dr Tong will want to do anything about it (another balloon procedure) because the risks of that out-weigh the risks of not doing anything at all. And he is doing just fine like he is right now.

Thanks for all your prayers for him last week. Talk to you later.

Sarah

Good Report

Just wanted to let you all know that Damon got a good report in St. Louis yesterday. Sarah said that the doctors said that it is not as good as it could be, but it isn't as bad as it could be either. They all got back last night around 8:00. They weren't able to find Liam. Continue to pray for him and his family. We will talk to you soon.

Good Hands

Well it seems so long ago that little Damon was in St. Louis. Now they are going back for follow-up tests. I know that he is in good hands, not only at St. Louis Children's Hospital, but also in the hands of our Lord. But I still can't help, but worry. Nothing has gone as planned with Damon (as far our our plans).
So for all of you prayer warriors continue to lift up Damon's health and life. Also please pray for a little boy that we met up in STL, his name is Liam. He is 5 yrs old and him and Myles got to be good buddies at the Ronald McDonald House. Last time we heard he was still waiting on a kidney transplant. Please pray that God will find a perfect match for him, he is such a cute kid.

Anyway I am at work and am trying not to be distracted. I will update as soon as I know something.

Jeremy

Today

We did NOT go to St Louis today. Our appt was changed to Thursday because it worked better for everyone's schedules. I forgot to update that info when I posted last, sorry! Please pray for our safe travel there and back and for Damon's test to go well and for him to have good results. Talk to you later.

Sarah

Blessed

The last couple of days have been rough for Damon. He has cut 4 teeth in the last month and has one more about to pop thru. He is so irritable and wants to be held all the time. Last night and tonight were driving us crazy because he would just cry and cry and no matter what we did he wasn't happy. He has also developed a pretty rotten temper. He screams when he's left alone, he screams when he can't reach something he wants, he screams when he has to wait for his food longer than he wants to. Tonight I put some baby Ora-gel in his mouth for his gums and he hates the way it tastes and he threw the biggest fit! Please pray for him to have a better day and for the rest of his teeth to hold off for a while and give him a break.

Still with as stressful as the last couple of days have been, I know we are blessed. I read others' websites about their little ones and we are not going down nearly as rough a road as some of them have and still are traveling. It puzzles me how (or why) these babies are born with the same heart defect and some of them, like Damon and Hayden, do so well and have so little problems and others so many. The HLHS road is not easy in any way no matter how many additional bumps you come up against but I thank God that our road so far has been fairly smooth since Damon's 2nd surgery.

I read a quote from a carepages mom that said: "Sometimes you have to believe beyond the doctors." It kind of made me laugh to myself. I think if we only believed beyond the drs "sometimes" we would be grasping for hope so often. My son's life is held in the hands of the Great Physician and He will never leave us, nor forsake us, nor leave us hopeless.
Talk to you all later. Happy Labor Day!

Sarah