and so it all begins again...

Lots of things have been going on again. Monday my Milwaukee doctor said he doesn't really feel comfortable working with Jacob, because his condition is so critical he wanted us to go back to Ohio. So we are going to be here until stage 2, whatever that will be.

Once arriving to Ohio, Jacob's cardiologist agreed with Milwaukee Doc. Things apparently worsened a lot over the past 2 weeks where Jacob's heart function is not looking good. It is so bad that he doesn't even know if he is a candidate for the surgery we were planning. He thinks he may be too weak to make it. And even if he makes it past the surgery, he is not sure if his poor heart function will even get much better. So his recommendation was for a heart transplant for Jakey.

Our surgeon is actually in Australia until the 6th of July. :( So no major decisions will be made until than, unless there is an emergency. All the doctors and surgeons that are here met yesterday, and they are all very concerned. They went over a few possible options, like splitting the second surgery into 3 different stages, but they all think heart transplant may be his only opition. But they are all sounding like no matter what our choice is, things aren't looking the best.

So we just really need to pray and have faith that Jehovah will help Jakey's surgeon to have wisdom and be able to get him through these hard times.

We were told to stay close to Ohio until stage 2 in case there is an emergency, but don't need to actually be in the hospital since they aren't doing much for him here.

So here we will be.....

Milwaukee doctor is scaring me...

So we had our appointment yesterday and my doctor in Milwaukee is very, very concerned about Jacob. He couldn't have stressed more how critical his condition is and that he is very high risk. He was shocked that Ohio let us leave..... He says clinically he looked good.. gained weight, blood pressure, stats etc., but that his heart function is very poor and he doesn't even know if Jacob will qualify for the second operation because it may just be too dangerous for him and we should start to think about heart transplants.

So naturally he scared me a lot! But on the other hand, 2 weeks ago he wanted to take Jacob on the flight for life to Ohio, but at Ohio, they said Jacob looked good. So who knows?? Either way it is scary because stage 2 is coming. And we don't know what is going to happen. It is a big surgery and he is just a baby. My poor little guy.. :(

Oh, so Milwaukee doc goes, "if Ohio dosen;t do something soon, I am going to make the decision because I am Jacob's doctor." And I'm thinking what does that mean? So I say, "But I am the mother, so I ultimately make the decision right?" He said yes. But seriously, the way he made it sound is that he believes our child is in danger, and that he will intervene and get him medically care in Milwaukee by whatever means necessary.

So Alex and I have been talking and we think it may be best just to camp out in Ohio again for awhile. At least go there weekly for our echos and see what the doctor there says. Thankfully school is over, so I can take my boys with me this time. We will probably be going on Thursday or Friday next week, hopefully, for an appointment and see what they say. And than we will see what happens.

Please pray for our baby. This summer is going to be so hard on him. :(

part 2

Okay, so on with our adventure....

What the doctors saw with the catherzation looked good. The pressure of blood flow was good. The stent looked fine. So nothing else was needed. One of his bands were a little loose though and the stent was closing just a little bit. Afterwards in the ICU he developed an allergic reaction to something. His head and upper body was really red and swollen. And he had a fever of 102. Which for a heart baby is very high and dangerous. No one is really sure what caused the reaction, but thankfully the nurses gave him benadryl and the next day he was fine.

The surgeons said to just watch him closely again. The goal is to make him last for another 4 weeks and than he will be able to have his second surgery. So it looks like July will most likely be his 2nd surgery. We also got instructions for the summer, to keep Jakey out of the heat. They don't even want him to go outside during the day in the summer, only mornings and evening because he won't be able to handle the heat.

Since we have been here they also did some tests to check his liver, kidneys and everything was okay. They changed his meds a little to hopefully make all the organs work better.

Now again holding us back is his eating. The doctors decided he has silent acid reflux. So he is on medicine for that now. Which I think is helping already, but will take up to 2 weeks or so to completely clear.

Hopefully we will be home Saturday. That is the goal. I love the main doctor on Jakey's case this past week, so that makes everything that much better.

our new house

So you can see where we are living... its funny because when we walked back to floor C5 all the nurses knew us and Jacob by name. So it really is like our second home now.

Sorry I haven't written

Okay, so a lot has happened since my last post. I will try to explain everything simply and to the point.

First off, last week, on Thursday I had Jakey's routine doctors appointment and all looked ok. Jacob lost some weight, but at that time the doctor said we would just monitor him. Than about 2 hours later I get a phone call from my Milwaukee doctor in a panic saying that I need to get to Ohio asap. He was even talking about taking Jacob on the flight for life helicopter! At this point I am like "What??? What is going on? I was just in your office and everything was ok?" But apparently thinking over things and talking to some other doctors, they all decided it was urgent for Jakey to be in Ohio and to have a catherazation done because they thought his weight lose, extra sweating and such had to do with the stent in his arch closing up. So off we all head to Ohio.

Friday at 8:30 am we had an appointment for Jakey's echo and than with his cardiologist from Ohio. Of course Jakey put up a fight for the echo! The results came back looking pretty good. There was no need to urgently run him to the cath lab, but the doctors decided it would be best to keep him over the weekend to monitor him and be on the safe side.

Than the team decided they were going to do a catherzation on Monday to look around and if they see anything wrong they will fix it.

In the meantime I was going through an emotional delimia. Because I wanted and needed to be with jakey at the hospital, but at the same time I needed to be with Isaac and Nico for their last 3 days of school. Isaac was crying that he needed me to be with him. And after much thought and prayer, I decided to go back to WI with the boys for those 3 days to do all the school stuff I promised them a long time ago I would do. Bottom line was that I needed Isaac and Nico to know that they will ALWAYS be very important to me and that I will still ALWAYS be there for them too. I didn't want any resentment to Jacob for taking their mama away from them. (We are now all back in OH- we dr0ve right after school Wednesday.)

this is to be continued....

I am falling asleep writing this so I will share all the finding of the tests and what we are still doing here with you tomorrow!