A very thankful Thanksgiving

This Thanksgiving Michelle and I have even more to be thankful for. Elijah had his breathing tube taken out of his nose and he is currently on a nose cannula for his oxygen, similar to what he had at home.

When we got down to Milwaukee this weekend to see Elijah, we finally got to see him awake! His eyes were open, his arms flailing, his legs kicking. It was awesome to see! For almost two months he had a breathing tube in to help him with his breathing, hooked up to all kinds of IVs, cords, wires and machines, which was pretty intimidating being in his room. Now he is slowly being taken off those same IVs and machines as he is getting back to functioning more and more on his own. It is so great to see him up and alert...for the record he is not a fan of Sponge Bob and was calmed by the football game that was on...football good, Sponge Bob, not so much...I know my son!

He has one last major hurdle left and that's his heart surgery. Assuming Elijah continues on the path he is on, that will take place in the next couple of weeks. We hope to have him home in time for our 1st Christmas together, but if we have to celebrate in Milwaukee then so be it, that's what we'll do.

Friends, family, co-workers, and even strangers always ask, or make the comment, "I wish there was something we could do"...there actually is. During the holiday season we deal with the "hustle" of many organizations looking to raise money for their cause. The next time you see a Children's Hospital collection area drop in a $1 or $.50, or whatever you can, this is an absolutely incredible facility with so many talented doctors and nurses. Without this facility who knows where we would be...and not just our family. Walking through the halls of the hospital there are so many kids of all ages and families that rely on this place to get their loved ones back to health so they can go home.

So, the next time you walk past a Children's Hospital donation area, drop in whatever you can because getting him the care and having this facility in Milwaukee is doing more than we can ever ask in helping us out.

You have no idea of how thankful we are for the progess Elijah has made and to have you in our lives. We truly appreciate the continued prayers and support. Have a wonderful Holiday season, we will keep you posted.

Elijah is doing great!

This was the best visit so far. Elijah's numbers are consistently strong. His oxygen levels are consistently high and he is coming off his sedation medication and is getting closer to the oxygen levels he was at while at home. He is up a more and more, he is kicking his legs and trying to move his arms, but the nurses have to keep his arms pinned to his bed sheet so he doesn't mess with his breathing tube and IV's!

The plan the next couple of weeks for Elijah is to continue to get healthier. He will have all of next week to continue on his progression. The following week sounded like he will have his cardiac cath so the doctors can get a good look at his heart and make sure they aren't missing anything in preparation for his heart surgery. Depending on how Elijah is doing, and scheduling, his heart surgery would follow.

Elijah won't be coming home before his heart surgery because we don't want to run the risk of him getting sick again before his surgery. Also, it becomes hard to get back into a schedule and then have to head back to the hospital. This way when he comes home he will be in the best possible condition he can be in....and we can't wait!! We hope that he is home before Christmas, but after going through all this we have learned to just deal with what's in front of us. If that means we spend Christmas at Children's Hospital than so be it, as long as we are all together we'll make the best of it!

We want to thank everyone again for your thoughts, prayers, and support. The phone calls, the e-mails, the cards, and a special thanks to those that have taken the time to make food for us...it is a great help and very much appreciated! Have a wonderful Thanksgiving weekend if we don't talk before. We will keep you posted, take care.

Elijah means the Lord is my God. In the Hebrew Bible, the Book of Kings describes many miracles performed for him and by him.

A day trip

Steve and I went to visit Elijah at Children's Hospital yesterday and were surprised to see him moving his arm and kicking his legs. As stated before they are slowly weening him off medication, one in particular was a paralytic. They did have to restrain his arms because they were worried that he would start pulling or yank out some of the tubes. It was only for a short period of time, but it was nice to have him hold onto our fingers and squeeze them. He had to be sedated again though because it became clear that he was having some pain. The nurse informed us that they did run his blood cultures and some swab twice and both came back negative for the H1N1 virus. Even though he is no longer infected with the virus he still has quiet a ways to go to fully recover and become "healthy" again.

We also spoke to the on call cardiologist to discuss his heard condition and his upcoming heart procedures. He is scheduled to have a heart catheter done on November 19th followed by surgery on the 23rd. As of this point the cardiologist feels that we can keep those dates as it would give Elijah almost two weeks to recover enough to safely perform the procedures.

It is very hard to walk into see him hooked up to so many machines, but we know it all will make him better. He is a miracle and a fighter!

Elijah doing good

It has been a week and a couple days since Elijah has been at Children's. Every time we talk with the nurse he is doing good. He numbers continue to improve, but they are trying to ween him off his sedation medication. The first step in his recovery is to clear his lungs of the "crap" that he currently has.

Mostly, the issues he has with the dips in his oxygen levels have to do with his heart. Once the issues with his heart are corrected than a lot of the things he is dealing with now go away...but, he has to be healthy before they can perform the procedure.

Its been tough to figure out how to spend our time. We both want to be with Elijah and miss him because he's not home. There isn't a lot we can do while we are at the hospital because he is sedated and if you have ever spent time at a hospital's ICU you can drive yourself nuts with everything going on. Michelle and I have spent our fair share of time with him at the hospital but the tough part is he is in Milwaukee and its 4 hours round trip. Plus as Michelle recovers from her back surgery, its not the most comfortable place to be, much less riding in a car.

We want to thank you again for your kindness, thoughts, prayers, and continued support. It really means a lot to us and helps us get through the rough spots. We will keep you posted! Take care.

A long road ahead

On Friday the 30th I received a phone from St. Vincents letting me know that Elijah was not doing so well. They had consulted with some doctors at Children's Hospital in Milwaukee and though that he could get better care down there. The hospital up here just did not have what Elijah needed to be treated. They said they were going to air lift him, but it was too foggy so they sent a transport unit up along with a team consisting of an ICU doctor, and ICU nurse and a respiratory therapist. At 3:20 pm I received a phone call from the ICU doctor from the Milwaukee transport unit and he informed me that they were having a hard time stabilizing Elijah for transport. His oxygen stats kept dropping into the 70's. He said he wanted to let me know the severity of his condition and if they needed to on they way down to Milwaukee, if he worsened they would perform CPR on him and even had to tell me that there may be a possibility that he may not make it. I did not hear from them for a while so I called Milwaukee at 6pm to see if they had made it down there and they had. I was told that they just arrived and were in the elevator on there way up to the ICU unit with a team standing by. They advised me to call back in an hour to give the staff a chance to do what they needed to do.

At 8 pm they said that they had to perform a surgery on Elijah to hook him up to a bypass machine for his heart and lungs called an ECMO machine. They said his ride down was very hard and he became critical with his oxygen stats dropping into the 50's and they also had to pump him full of blood pressure medication. They did get him stable and having been taking fabulous care of him.

As of 30 minutes ago, the update from Children's Hospital was that they slowly weaned Elijah off of the ECMO machine and he is holding his own. His heart rate is a little low, but they are going to watch that, his blood pressure is good as well as his oxygen stats. He is a tough little boy, but has a long road ahead of him.

Thank you to all for your continued support through this very difficult time. Steve and I are very, very lucky to have great friends and family!

The flu season begins.....

On Sunday October 18th Steve started to feel sick and that was when Elijah had developed a cough. Over the next few days the cough seem to have gotten worse. We started to take his temperature and the highest it had ever gotten was 100.6 but it had gone back down after we gave him some Tylenol and that continued through Wednesday. In the mean time we placed a few phone calls to his pediatrician letting them know about his cough and temperature and that he was becoming more irritable, we even told them that his breathing had labored at times. They had advised us not to come in because they were worried that if we brought him in we might infect others that may have been in their office so on Wednesday they just prescribed him some Tamiflu and told us to call if he got worse. On the morning of Thursday the 22nd his dressing around his mickey button had been changed and his temperature taken. His temp was 101, so we gave him dose of Tamiflu and some Tylenol to help his temperature. About two hours later we noticed that his mickey button site was bloody and had been slowly bleeding so the front of his outfit was full of blood. We called his pediatrician again and of course our doctor was out of the office so they said they would squeeze us in to see another physician. Since Steve was sick my dad and I took him. The doctor spend about a minute with him and advised us that she was going to call the emergency squad to transport him to the hospital because she could see that he was not doing well.

They strapped me to the gurney and I held on to Elijah while they took us into the ambulance. We had gotten two blocks away from the doctors office when they said they needed to get us to the hospital immediately because his stats were not looking good, so they flipped on the lights and siren. We arrived at the ER and there was a team of people waiting for us. They took Elijah and started to work on him right away. They wound up intubating him immediately to help get his heart rate and breathing under control and then they sedated him to keep him calm. He spend a little over an hour in the ER and then was transferred up the Pediatrics ICU unit. They worked on him up there for about an hour and he had become stable. They did some blood work and culture swabs on him and confirmed that he had Influenza A(H1N1).

Needless to say we are very upset with his pediatrician. I am sure the office advised a lot of other parents to keep their children home to reduce the risk of infecting others, but we believe that they overlooked that fact that Elijah is not a "normal" baby. He has a compromised immune system and a heart condition that puts him at a MUCH, MUCH higher risk than others. The staff at the hospital had told us that he was the most critical child in their unit.