It always seems to be something

Life post Glenn is suppose to be easier. I'm hoping it will be once we get out of the hospital. As of last Thursday, we have moved to the lower unit, CV Acute. However, since my last post, we have seemed to be in an idle position with everyone providing different reasons for the events occurring.

Just hanging out, waiting for answers!

While we were waiting to move to CV Acute last week, minor issues began arising. The first one began on a week ago around 6 pm, when I noticed that Alexander was getting a rash on his face. When I brought it up to the nurse, she replied it seemed as though he was getting "flushy" (a side effect when recovering from the Glenn). I informed her that earlier when he was having a "flushy" moment, it didn't look like that. The next day, the rash was still there and Alexander's doctors began to believe that it was an reaction to one of his medications but unsure of which one. As the days went on and his medications began to be weaned, his rash continued to come and go. It finally faded away over the weekend when his last pain medication ended.

Last Wednesday, Alexander was assessed by an Occupational Therapist (OT) because he wasn't taking the bottle and when he tried, he drooled out the milk. The OT suggested to try nursing him and sure enough, he latched! So she suggested to weigh him before and after each feeding, then what ever he didn't get from me, to provide through his NG. Therefore, I have been sleeping in the hospital for a week now. Alexander's feeding schedule is set similar to our home routine. Instead of one bottle in the early morning and two bottles at night, the plan was to feed him through NG in the morning and two times at night. Well...that doesn't always work when you  have nurses that take care of your child by providing them with medication. Two nights ago, we stepped out for dinner during the change of shift. When we returned about 8:30, (so that I could feed him), the night nurse said she gave Alexander Tylenol because he was inconsolable and had been crying for 10-15 minutes! Um...Hello! I think any baby would have a difficult time calming down if they had been crying for 10-15 minutes and giving my son drugs is not the answer! Needless to say I was pretty ticked off about it. She then informed me she was heating up a bottle for his feeding. I reminded her that he was not being bottle fed and he was to get the NG feeding at midnight. Well, when I went to feed him, he was so doped up, he didn't want to eat. I then asked her to reheat the milk and informed her that I would feed him at midnight, and the following would be an NG feeding. Well, the midnight feeding went fine and at 3 am I began pumping. Alex then began crying and so Wes got up to console him. While holding Alex, Wes realized that the milk going through his NG tube was leaking all over his bed and the floor! Now I was really ticked off! I walked out and told her what was going on and she told me she thinks it occurred when her badge got a hold of the opening where the milk passes through and was leaking at. She then said she would throw it out and start over. I thought to myself "well, we don't know how much he actually ate and we don't want him to over eat, so how much would you know to put in!? I told her not to worry about it and that I would just feed him. On a positive note, Alexander is gaining weight little at time and has started to take a bottle again. We are hoping that tomorrow the NG tube can come out.

Before being transfered to CV Acute last Thursday, Alexander was down to .5 liters of oxygen. Once we got to CV acute, his oxygen began dropping again and he became much more irritable. So they increased his oxygen to 2 liters and have him taking Ibuprofen and Tylenol for any pain (e.g. teething, headaches). Then Thursday night, Wes picked Alex up and the connection of his O2 tube was lying on the ground. When the nurse put it back together and turned up the air, it popped! At that point, he had NO oxygen coming in. There was a quick scramble to get him a new nasal canala on before he oxygen levels dropped even more. The doctors thought think there was a hair line fracture in  the nasal canala resulting in the constant decrease in his O2. But that doesn't seemed to be the case now, as his oxygen levels are still going up and down.

From Thursday through Sunday, the nurses began weening Alexander's oxygen. By Sunday morning, the nurse attempted to put Alex on room air because he did so well on 1/4 liter over night, however that didn't work out. Alexander's doctors are not sure why his oxygen saturations keep dropping but they have their suspicion and believe he may need to go back to the cath lab later this week! We really DON'T want Alex to have to go through that again (because he coded and was reintubated during his first heart cath). However, I also don't want Alexander to be sent home on oxygen or for something to go wrong and we have to rush him to the hospital.  We have been, once again, taking it one day at a time, hoping to see some improvement somewhere and get some questions answered.

His oxygen saturations aren' the only thing issue we have been dealing with. Alexander had also been fussy and extra sensitive to everything. He is currently teething, having gas issues, and dealing withe the ferocious "glenn head". His nurses would ask if we want to give him tylenol and I always want to say no because I want to try to figure out why he's upset, not just drug my child and blanket the problem. But when your child gets upset and can't be consoled, what do you do? However, he seems to be turning a corner with his fussiness, as yesterday he was a much happier baby boy. I'm hoping today is the same!

From what we've heard, post Glen is suppose to make life so much easier. Wes and I have yet to see that and if anything, it seems as though we've taken a step backwards from the pre-Glenn stage. Before the Glenn, Alex didn't have problems eating and he didn't have problems with keeping his oxygen saturations at a nice level, he was a happy baby! Now Alexander isn't as happy, cries a lot, is having a slight problem with feeds, and is on oxygen. It is so very frustrating at times! Wes and I are trying to stay positive about the whole thing but some days are tougher than others. Today, Alexander is scheduled to have an Echo , to determine if a visit to the cath lab will be happening this week and what the plan is to get us out of here. Our Superman and his parents needs lots of positive thoughts and prayers for questions to be answered and issues to be resolved so we can get home sooner!