Tuesday, September 30, 2008

Back at Texas Children's

We are now admitted to Texas Children's for the fourth time in Ethan's not quite eleven weeks. He is having a bit of a fussy day. He just wants to be held and look around. He is getting used to being here again and is playing now. Richard was able to borrow a laptop for me to take to the hospital and so I am able to update blog and email more regularly. Ethan is on the MRI schedule for Thursday afternoon and will be under general anesthisia (I know I didn't spell that right) for the procedure. Richard will be coming down tomorrow evening to help me through the procedure. I am more calm about this than I have been for the past few days. I know that Ethan will be okay through this. I'm just a helicopter when it comes to him. I sound like a broken record bt thank you to everyone who has continued to keep my family in your prayers. They are felt daily.

Saturday, September 27, 2008

Ears, Nose and Throat Doc

So we went and saw Dr. Duncan yesterday and he wanted to do two procedures to look at Ethan's airway. We did one only because the second one is done at the hospital under anesthesia so that we can get a look at what is going on beyond his vocal chords. The upper airway was checked by putting a camera down Ethan's nose. His upper airway is fine. On October 6th we will check his lower airway at Texas Children's. So...just to recap...we will be admitted for his crazy off the wall sats on Tuesday, MRI Thursday, Cardiologists and surgery team will review his case in the conference room Monday and he will also have the lower half of his airway checked on that day. October 7th is Nolan's speech and hearing evaluation so I figure I'm going to live at Texas Children's for the next few weeks best case scenario. Today Ethan's oxygen saturations have been in the upper 70's and he has rested comfortably. He got way too much stimusation yesterday and has had a full day of recovery. We're planning on another one tomorrow.

Thursday, September 25, 2008

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!

Tuesday, September 23, 2008

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!

Thursday, September 4, 2008

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.