Double Outlet Right Ventrical with Transpostition of the Great Arteries...WHAT?????

Something is not right!

I woke up this morning and started my day as usual. It was about 9 AM when Josiah nursed well. I needed to get a few things done so I packed up the troops and headed out and about. I came back shortly after noon and I tried to nurse Josiah again but he just wasn't interested. I couldn't get him to eat much.

Ashley hadn't been feeling well and was particularly needy. Elizabeth ended up holding Josiah a lot so I could tend to Ashley. I noticed he was a bit fussy. But was still easily consoled. I kept offing him the breast and he continued to refuse. I wasn't to concerned until about 8 pm when he vomited. It was a thick mucusy/cottage cheese throw up. I know he hadn't eaten good since the morning so his body was rejecting even that. I assumed he must have caught what ever yuck Ashley has and his little body was fighting it.

I had a sick feeling in my gut that something was wrong. Not wanting to over dramatize the situation I determined that if I could get him to keep some pediolite down that I would not need to take him to the ER. So I started giving him 2 oz of pediolite every couple of hours. It took about an hour to get him to take 2 oz with the doper. I tried to give it to him in a bottle but he wouldn't such it.

When I woke up at 4 am to give Josiah his next 2 oz dose of pediolite I noticed his breathing had changed. He was grunting/moaning with every breath.

I got on line and was able to make a doctor's appointment for him at 8:15 am.

Hans left for work and my mom came over to stay with the other children while I took Josiah to the doctor. That is where the whirl wind began. They weighed Josiah (6 lb 10 oz). They put the thing on his toe to read his blood oxygen level and it was about 37. When they put an oxygen mask on him his level didn't change. Dr Grub said, "we need to transport him to Mary Bridge. I'm 99% sure it has to do with his heart"

So off we went. Josiah and I in the aid car. I called Hans and he said he would meet me there. It was kind of like a dream. I could tell the paramedics and nurses were trying to down play his condition and talking to me to distract me from the fact that I was holding a baby who was dying. I would answer their questions know what they were doing but going along with it.

Once at Mary Bridge they were starting to prep for all these tests to figure out why his oxygen level was so low. I requested "Please can you wait to give him a spinal tap and antibiotics until you look at his heart" The doc basically said no she didn't want to wait that long. She didn't feel like they had time because he was so very sick. So I went to the bathroom and prayed, "God Josiah is yours. Have your way with him." When I came back they had him hooked up to ultra sound machine and where checking out his heart. Praise the Lord he didn't end up having to have the spinal tap or antibiotics!

What they found was Josiah's great vains were attached to the wrong side of his heart. They were not equipped to handle this situation so they transported him to Children's Hospital in Seattle. I was not able to ride with him. Hans and I made our way to Children's.

When we got there we could not see Josiah for several hours. It was a very agonizing wait. Finally someone came out and explained that when Josiah got there he was so very sick (aka - close to death) that they had to do an emergency procedure (I can't remember what it was called) to save his life. They whet through and artery in his groin and punched a hole in his heart. They didn't wait for us to sign the consent. There was no time for that.

The next time we saw our sweat Josiah he was completely motionless with all kinds of IV's attached to him, as well as a tube up his nose that when down to his stomach and a tube down his throat that was breathing for him.

We spent the evening crying out to God and looking to Him for strength. Our hearts were broken and our eyes were burning. We don't want our son to die. "God we give Josiah to You. Let his life bring glory to You. Have your way with Him."

Hans and I were able to stay in one of the sleeper rooms located one floor up from the ICU that Josiah was in. The disposition of his great arteries was confirmed. It's going to be a long hard road. God help us!

July 21st 2011

So yesterday was save Josiah's life. Today is try and get him stable.

I can't even describe the emotions that go along with a diagnosis of your two week old having a heart defect. It's hard to even think. It really is like being in a tornado. Our hearts know that God is in control. And we trust Him. But our eyes will not stop crying.

I try and be with Josiah as much as possible. I try and talk to him so he knows that I am there. He is not stable enough for me to hold. I try not to cry while talking so he can recognize my voice. That is not easy to do. It's a challenge to even talk. I don't feel like talking but my son needs to know that I'm there.

Today they were able to lower some of the meds he is on. That's a small step in the right direction.

Saturday, July 23, 2011

Progress

Josiah made it through his procedure yesterday. They went up through a vain on one side of his groin and an artery on the other side with a camera and die's to get a better look at his heart.

They were just confused with what they were seeing with the ecco. Now we know why. They were seeing exactly what they thought they were seeing. It just didn't make any sense to them because it does not fit the normal conditions of his heart defect. His great arteries are transposed, but in addition he has two of the three conditions to be classified a DORV (double outlet right ventricle). He has a hole in the upper part of his right and left ventricle which allows bold to flow from the RV to the pulmonary artery which increases the blood pressure to the lungs.

He also has both his coronary arteries attached to the same "sinus" in his aorta. In addition the LAD (left anterior descending) artery is connected to the wrong coronary which is located right in between his great arteries which really complicates things. The cardiologist said it will be tricky, but it's doable.

30 cardiologist/surgeons will be meeting early Monday morning to discuss the best way to solve his problem. Our family never does anything half way...the card said he only sees this kind of thing once every 8 or 9 years. So they were seeing what they thought they were seeing with the eccos. It was just hard for them to believe because it's so rare.

Today: our goal for Josiah is to get his breathing tube out. He was given about a teaspoon of breast milk (via his nose) last night and seemed to tolerate it. We will know after rounds (late morning) about his tube. He stabilized well after his procedure last night. I tell him, "stay strong little buddy. Keep fighting!" He's a strong little guy.

July 23rd 2011

They are discussing the possibility of taking his breathing tube out today. We have to wait for rounds which can take several hours to get to. It was almost noon yesterday when we did rounds. God speed. Josiah is so sick of that tube.

I get to see my other little blessings today. I miss them so much! They will be able to come back to the ICU to see Josiah.

July 23rd 2011

Today Josiah was able to get his breathing tube removed! He was also able to nurse for the first time since Tuesday morning.

I know he is still in need of surgery but it has been so great to see him take a little break from his misery. He will endure so much more next week but for now he's a pretty happy boy.

July 26th 2011

Out of ICU
Josiah has been stable for a couple of days so last night they moved us out of the ICU. He got all his IV & PIC lines taken out. The only down side to that is now the nurses have to bug him to get all his vitals every four hours.

They had to draw his blood this morning. It was an agonizing experience. After 30 minutes of poking him and failing to hit a vain they finally called someone to come and do a scalp draw.

He's off all his meds now except for the loganox for the blood clot that is in his leg. That is a shot that has to be given twice a day for a month. They will teach me how to give it before I leave.

SURGICAL PLAN

Because his surgery is so complex they want to give his little heart a chance to grow. He will be monitored very closely while we wait. They are estimating to do the surgery in one to two months depending on how long he remains stable.

This will require frequent doc appointments until then.

7-26-2011

Today was a hard day for Josiah (and mom). He started the day with a blood draw. They poked him for 30 minutes and were unsuccessful. They called someone who was able to give him a scalp draw. NOT FUN! I think he did better than me though. The rest of the day just seemed to be one interruption after another and the poor boy never got any good rest. He was crying and for the first time in his life I was unable to console him. He's finally sleeping soundly about 7:30 pm. Lord help us get through the rest of our time hear.