Unexpected Results

Today we went to Ethan's cardiology visit and got some very unexpected results. We saw Dr. Altman and she is concerned about his saturations being all over the chart. She was going to admit him pending an inpatient MRI (so we wouldn't have to wait as long for one - she didn't feel comfie waiting) but, since they can't get an inpatient MRI done until next Thursday, she is sending us to an ear, nose, and throat doc tomorrow instead. This is for the other concern she has. I have noticed since having his saturation monitor at home that when Ethan lays down, his SATS go down into the low 70's. When he is being held up or is on his tummy, his SATS go up as high as the low 90's. This is confusing and we are going to the doc tomorrow to make sure that his brochioles (spelling) are not restricted or the circulation compromised. We will go in for another check with Dr. Altman on Tuesday and be admitted for his SATS then so that we will not have to stay at the hospital for a week before the procedure on Thurs. The Monday after the MRI, the entire cardiology staff and surgery team will have a conference over his MRI results to best decide which course of action to take for surgery. Most likely, but depending on MRI results, we will be looking at a Glenn shunt within the next few weeks. I am scared to death. I am staying with my sister until Tuesday and am so grateful to her for willingly opening her home. Richard and my dad have planned to take Elise and Craig to an Astros game for weeks and have tickets for tomorrow's game. Mom and I are going to pick Nolan up tomorrow evening before the game starts so that they can have the game they have been looking forward to. I already miss my older kiddos. There is no telling how long it will be before our family is back together again. Best case scenario is a week. Those of you who know my cell number please fee free to call. If I don't answer it is because we are in a doctor office or we have bad reception. Until tomorrow!

Tune Up #2

We were back in the hospital for five days over hurricane IKE...that's right...I weathered the storm on the 15th floor of Texas Children's Hospital in Houston. Ethan started getting bluish around his mouth and eyes and i called Dr. Altman and we were admitted Thursday before the storm blew in. A little scary during the hurricane but we were one of the few buildings in Houston that never lost power. They did an echocardiogram and noticed that ethan's blockage to his pulmonary artery is getting a little worse. The ER cardio team wanted to do a cath lab on him, but did not (thank goodness...it would have blown his heart out of balance). We are going to have an MRI in October to get a better look at his heart and hopefully get a more informed game plan for his long term care in place. He is back at home on an O2 monitor and is actually asleep right now. He's doing well and we are very grateful to have him home.

The day after he came home from the hospital he had his two month shots and he handled those really well....just like the little fighter he is! Our next appointment in Houston is Thursday to see Dr. Altman, schedule a definitive date for the MRI and check up on his progress. On another note...he was extremely cranky yesterday and I was starting to think that he was having chest pains or the like (it's always in the back of my head and I am trying very hard not to overreact). I put my finger in his mouth because I couldn't find a pacifier and was about to call Houston when he started chomping that finger like there was no tomorrow...the little stinker is teething!!! Not even ten weeks old yet and he's teething! You can see where his little teeth will be coming in on the bottom. It's bubbled up and giving us both fits at this point!

Again, I will try to be better about updating the blog on time...it's been a week since he was discharged today and I've just now gotten time to tell everyone that he was even in the hospital!

A Tune Up

This week Ethan had his first “tune up.” At least that’s what the 15th floor pediatrician at Texas Children’s called it. Last Sunday while I was at church I noticed that Ethan was looking a little blue around his mouth and that his respiration had gotten faster. He usually has a respiration rate of about 40 – 45 breaths a minute. On Sunday he was around 56 every time I checked him. Craig and Nolan have both had a stomach virus but I immediately discounted that in Ethan. He wasn’t vomiting and he didn’t have diarrhea…yet. He never threw up but his poo got orange instead of breast milk yellow like normal. He got dehydrated. His heart had to work harder which threw his balanced defected heart out of alignment and made his sats get bad. When we got him to the Texas Children’s ER his oxygen sats were 59 – 62…His normal is 75-85. They terrified him by holding him down while they repeatedly tried to get a viable blood sample from him…his blood is thicker because of his defects (he has more red blood cells than normal so he can survive at 80%saturation) and it made it difficult to get a blood sample without it clotting. He was on oxygen until Tuesday evening and he got to come home yesterday. It could have been much worse and now we are more aware of the type of almost unnoticeable cues to look for that will cause him major trouble. I know that this will not be the only time that he has to have a tune up, but I am feeling very blessed in the fact that it could have been much worse and that we have survived a major hurdle with his with sanity in tact.

First week of school!

Well, we have survived the first week of school. Elise started third grade on Monday and Craig is in Preschool. so far they have had a really good start and made some good friends. Nolan is talking more and catching up with his communication. When I was leaving with Ethan for hsi cardiology appointment on Wednesday, Nolan waved his little hand and said bye!!! This is the first time he has done this and the first time he has said anything that clearly. He has continued to do it for the past couple of days and we are thrilled. Ethan went to Houston for another echo and chest x-rays. After 2 1/2 hours of tests and doctor evaluations, Dr. Altman came in and asked how he was doing. I told her he was doing fine and that he was our little miracle man. She said that after looking at his echo and x-rays and going over all of his data, she had to concur. Needless to say it has been a really good week. I am so grateful. Please continue praying for Ethan and our family. He is doing well because of the faith of those praying for him. Our next appointment is September 26th...a full month away. I can't believe that they are comfortble enough with his condition that he can go four weeks without an appointment. Prayer is amazing!

First Panic Attack

Ethan is fine. Just thought I would get that out before the rest of this post. Last Thursday he started running a low grade temperature and so we took him to the Dr. Fidone Friday morning. The checked his blood count and did flu and RSV tests just because he is so little. Those both came back negative as we thought they would but had to check and make sure. He has boogers. That's our final diagnosis. The only concerning issue for the Dr. was the fact that Ethan is coughing. So, we get sent over to the hospital imaging center for chest x-rays becuase he doesn't have the immune system to fight off pneumonia...as if any 4 week old would! Anyway, he's fine but at home with Momma this Sabbath morning to stay away from germs. I sneaked him up to the church yesterday for a few minutes so I could watch my other kiddos play at their Primary Activity water day. They had so much fun. I am so grateful for their primary teachers and leaders. They are really great ladies who take their callings seriously. Today I've been able to put Ethan down for about 10 minutes. He wants in my lap. I did get to go to the bathroom which I am calling a luxury at this point. Texas Children's has some scheduling conflict with the Echo Lab and my cardiologist this week so his next cardilogy visit will be put off another week. We go back to Fidone in the morning to check up on his cold.

On another note, Elise was very excited at Ballet this week. She has been assigned a spot in prologue (spelling) for the company's performance of the nutcracker this Christmas and she is so over the top excited about it. We are very pleased with her progress. This is her third year of ballet company but her sixth year of dance. She is such a good girl and big sister.

The rest of the crew is doing fine. Craig started preschool this week and Nolan is just being Nolan. He is starting to talk more but we are really pushing the issue with him. He jsut doesn't want to communicate. I can't wait until his speech lab/audiology visit at TX Children's in October. I just want to make sure that there isn't anything physically wrong that is delaying his speech and get him into speech lab so he can catch up to his milestones. I just want to be able to talk with him and cut his frustration level.

I'm Awake!

Ethan is doing as well as ever. He had another cardiology appointment with Dr. Altman last thursday and she is so pleased with how he is doing that he gets to wait two weeks until his next appointment. His personality is starting to present itself. He is amazing...and wide awake. He loves to cuddle. He loves to look around and watch the world. He expecially loves watching the wind blow the trees and looking at the ceiling fan. He gets a concentration wrinkle in his forehead when he watches. It's like he is trying to figure them out. I feel so blessed to have him with me and that all of my kids are together. One thing has come out of this experience. I am enjoying my kids more than I ever have. Every minute I can spend with them I do. I'm almost scared to let Ethan out of my sight. Elise has asked that I also mention that he loves music. He likes to sit in his bouncy and listen to the jungle sounds that are programmed in (it's a jungle themed bouncie). He hates the vibrations though. Wake him up and overstimulate him every time! Until next time...keep up the prayers!

A week at home

Ethan has been home for a week now and he is doing beautifully. he has seen his pediatrician, Dr. Fidone twice for weight checks and he has made the trip back down to Houson to see his cardiologist, Dr. Altman once. Last Thursday he had an EKG and chest xrays to check for any progress of heart failure symptoms. So far so good. There has been no change. He was places on a Holter monitor for 24 hours and we should get the results from that on Thursday when we go back to Houston for another EKG, xrays (maybe) and an Echocardiogram to check for progress. He is up to 7lbs 6 oz as of yesterday morning. We are truly blessed! I'll try to keep it updated better since we have aclimated to being at home a little better now. Elise has Little Drillteam camp this week and Craig starts preschool next week (on Wednesday).