5 weeks in the hospital, 5 weeks home and then back in the hospital for 4 days

The past week and a half have been busy! Two weeks ago, Alexander had his pediatric appointment. All was well until his doctor tested his oxygen saturations using a Pulse Ox machine (a band is placed on either hand or foot to gain a recording of the oxygen saturation) and the results showed 72 (oxygen level was at 72%), in which Alexander's levels are typically in the high 80's. The pediatrician wasn't concerned because Alexander was healthy and his color looked great. I, on the otherhand, was not comfortable with that, so I emailed his cardiologist to inform her of the results. I didn't hear back from her, and since she wasn't concerned, I relaxed...

A week ago, Alexander had his cardiologist appointment. When we arrived, Alexander was sleeping in his car seat and so the nurse suggested to leave him in the car seat and that the pulse ox would be placed on his hand. The test showed a 58%! So, the nurse placed the band on his other hand (we don't always get a good reading the first time), and the results showed in the 60's. So she suggested to place it on his foot, well that required him to be woken up, which was fine with me, because I was beginning to worry. Waking him up however, upset him, so now the readings had been taken from both feet, several times, and were jumping around from the 70's to the 80's. The nurse then wrote down 82, because that was a number she was getting more often. When the cardiologist came in, she stated that she might check his oxygen again at the end of the visit because it was varying. After she completed her check up, I asked her if she received my email about Alexander's oxygen sats being at a 72% at his pediatrician appointment. She replied she hadn't received it and that in the future, if I don't hear back from her, it means she didn't get it and to email or call her because she always responds back. She replied that his oxygen sats shouldn't be in the 70's because if they are, then he is ready for his next surgery! (I'm not ready for that by the way!).  We (Grandma Jeannie & I) then left the visit and went downstairs for lunch. As I was eating my lunch and watching Alexander sleep in the car seat, I felt a little unsure about his oxygen levels and decided to get another test done. I went back into the cardiology office, talked to his cardiologist, who said that we could test his oxygen levels again. Sure enough, he was bouncing from 60's, to the 70's to 80's, to 60's. With that, she suggested for him to be admitted  overnight for observation.

Alexander was placed on oxygen, had another echo cardiogram done (which he didn't like and screamed loudly because the tech was pushing on his pacemaker, trying to get a clear view of his Pulmonary Artery). The echo cardiogram showed that Alexander's blood flow going through the Pulmonary artery, where his PA band is, has slowed down because a muscle behind the heart is somewhat blocking the blood flow. They suggested to put him on beta blockers, but to wait until a baseline was retrieved of his oxygen levels.

Friday came with still no answer of why his oxygen and pulse rate were fluctuating. The talk of going home with an oxygen tank was discussed or possibly having his Glen procedure sooner than later-which began to freak me out! The doctors took blood and did a chest x-ray to rule out other possibilities. The blood test showed that he was slightly anemic and needed a small blood transfusion ( I believe this would be number 7 for him). As you know, Alex has had several transfusions, all which have helped his oxygen level increase during our previous stay. When preparing for the transfusion, a lab tech came in and took blood using a needle and then an IV line was placed in his foot (which he screamed). The transfusion happened over night and on Saturday morning, I woke up to a lab tech waking Alex up to take blood to test his blood count. As I watched, the  lab tech had pricked Alexander's heel and was squeezing the blood out, making Alexander scream! When I asked why she couldn't just use the IV line that was in his foot, she said that wasn't possible and "how else should she take blood, by a needle?" UM YES!!! I told her that another tech did yesterday and he barley cried. She just continued with what she was doing and said this was the way it had to be done. I then find out, that  using a needle to pull blood is a better procedure than what she did! I was one upset mommy! After that mess, Alexander's oxygen saturation were in the high 80's to low 90's and the talk of heart meds and going home with oxygen was off the table. We were discharged Sunday morning and have being doing good since!

So happy to be home!

We are trying to get back into a routine now. The routine that was in place was more because Alexander's oxygen levels were low resulting in him sleeping more and eating less. Even though this was occurring, he was still gaining weight and as of Tuesday, he finally hit 8 pounds! He weighs 8 pounds 3 ounces yesterday! I'm so happy he has finally reached 8 pounds, that he is much more alert now, and I hope it continues for the next couple of months. We did ask the doctors if a blood transfusion was going to be needed again next month an they said that most 2 month old babies have low blood count and that the next couple of months his red blood cells should be maturing. We are working on getting a pulse ox machine to have at home, to check his oxygen sats when we see a change (which I did a few weeks ago but thought it was just him being a baby and constantly changing).

I've learned to always have an overnight bag in my car (as i was in the same clothes until Friday night) and to follow my mommy instincts. Hopefully we get it the Pulse Ox machine soon and before our visit to the cardiologist next week.

Sleeping with a smile!

Smile starting to appear!

Alexander is beginning to smile when he is awake! (he always smiles when he is sleeping). Looking forward to seeing more of that! 

Positive thoughts and prayers for a healthy Alexander are always needed!