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.

KIDNEY SURGERY...NOW RECOVERY

No this isn't the bed Elijah has at Children's Hospital! He is still recovering from his surgery to remove the blockage in his kidney. The surgery went well. It has been 2 full days in his recovery and everything is moving in the right direction.

We hope to have his breathing tube removed and then everything else will follow. Elijah is slowly getting he sedation medication reduced. The doctors tried taking it away today, but he was pretty restless and the number 1 priority is to keep him comfortable.

He is pooping & peeing freely so the plumbing is working. Just got to make sure he doesn't get fluid build up in his lungs as he breathes more on his own. Not sure on when he will get discharged, but as of now it looks like Monday.

We want to thank everyone again for your kindness, thoughts, prayers, and continued support. Take care, talk to you soon.

TRAVELING MAN

As of Monday Elijah is now 12 lbs. 6.5 oz. The doctor is happy with his weight gain, but we are increasing his feedings which should help put on the extra pounds as long as he can tolerate the extra at feeding time.

Tomorrow, Thursday Sept. 17th, we are headed to Children's Hospital. Elijah needs to have some x-rays done of his heart. The plan as of now is he will have surgery at the end of October to correct those holes in his heart. It sucks that he will need ANOTHER surgery, but hopefully after this we can get rid of the oxygen machine he is on and won't have the oxygen tubes taped to his face and in his nose or have to carry the portable oxygen tanks where ever we go!

Also, originally the doctors thought his kidneys were cystic, but after having a Renal Scan of his kidneys at our last visit to Children's Hosptial the doctor there confirmed he had some obstruction causing the back-up in his kidneys. Once we get the heart issue taken care of the focus will shift to getting his kidneys fixed up.

Even though he has gone through a lot, and will have a couple other things to take care of the next couple months, Elijah is doing great! He is sleeping at night from about 11-12 at night until 5-6 in the morning! During the day he is more awake and alert which makes for some great conversations! Although we haven't heard his first word...yet...Michelle is putting in overtime to make sure his first word is Mom or Mumma!

Back to Children's Hospital

Last week Elijah went through a series of tests and the results came back good! It was a long and draining day for all of us. We spent 8 hours at Children's Hospital with not a lot of down time as we got taken from appointment to appointment.

At first Elijah got a little excited which caused his heart rate to climb and he oxygen levels to dip. It was enough cause for concern for the nurse at our first appointment to contact a cardiologist specialist to make sure everything was OK. He had to get an X-ray taken of his chest/heart...which everything looked fine. They wanted to make sure it was fine before we went home not knowing if it was something worse.

His kidney exam came back more encouraging. The doctor thinks there is a blockage causing the back up of urine/waste and enlarging his left kidney. Originally the diagnosis was cystic. Tomorrow, Tuesday, August 25th, we are going back to Children's Hospital so the doctor can run a more extensive test on Elijah's kidney.

The hardest part of last week's trip was when Elijah had to get his chest X-ray. He had to be restrained with sandbags and masking tape so he doesn't squirm when they are taking the X-ray. This caused the boy to cry and scream hitting noise levels Michelle and I never heard. Michelle was about to break down and I almost started kicking the crap out of the entire nursing staff! It was tough to watch and listen too, and then we have a crying baby in a diaper and they are trying to get us to leave the X-ray room. So much for being tactful, we understand they have a schedule to keep, but come on!

We will find out more in October about his heart. We have some tests scheduled to tackle that issue next. Thanks again for everyone's support. Take care, we'll keep you posted.

Look how cute I am!!!

Yesterday Mommy was drying my hair after my bath......what fun!!!

Mommy changed out my nasal cannula(nose hose) the other day and took this picture of me. Since I am getting bigger and stronger I like putting my hands up to my face more and peel off the tape that holds the nasal cannula in place, so Mommy and Daddy are constantly changing it. Hehe!

S'up my peeps

The last couple of weeks we have visited Elijah's pediatrician and cardiologist. The visit with the pediatrician resulted in the doctor recommending Elijah not be placed in day care. He had some tests done while in the NICU that showed him having a weaker immune system than most.

The doctors main concern is if he were to catch the cold/flu from another child it could effect him even worse than most. We have to visit the immunology clinic down at Children's Hospital in Milwaukee and have him retested. We are hoping that since he has grown so has his immune system.

While we are at Children's Hospital we were to schedule a cardiac catheter procedure that they think would help figure out why he has high blood pressure in his heart. After numerous days of Steve playing phone tag with Children's Hospital, they finally got a hold of Steve to inform us that they have scheduled him for heart surgery. Elijah will still have some tests done locally to confirm that surgery is needed, but with scheduling so difficult we went ahead and got him schedule...we can, and hope, that appointment can always get canceled.

The plan is to have it scheduled when he is at least 6 months old which he will be in October. The plan is to go down there on a Thursday to get his labs done and then on Friday they would perform the surgery. The surgery caught us off guard, we know that it was a possibility but we weren't expecting him to have another surgery so soon. If this is going to correct the high blood pressure and allow us to get rid of the oxygen machine than that is what needs to be done.

His kidney's are doing good. The question is as he grows will his kidneys be able to process the increased amount of fluids as he gets bigger. This will be ongoing and something to monitor as he grows.

We also had to visit a Ear, Nose and Throat doctor to have Elijah's hearing retested. They tested him while he was in the hospital and he failed their test in his left ear. They think it may have had something to do with his narrow ear canals. He was retested and failed both. The doctor had suggested we wait and get him retested in 6-8 weeks or we can make the choice of having tubes placed in his ears. These tubes would help drain any fluid that may be in his ear. We are hoping his test was a false positive because he responds to our voices and noises around him... we will just have to wait and see.