The roller coaster was down today. (typed out 4-27)

Okay, here it goes. It's been a yesterday was one of "moments" so I knew this entry would be wrought with tears so I didn't have the heart to do it before bed but feel I need to "download" before I try to get back to sleep after pumping.

The day started off nice with a short bit of quality time with Lila, reading in bed before breakfast which is always a lovely luxury. Then off to preschool without a hitch. Then back home to meet with a contractor to revisit the structural fixes we need to do on our home. For those who've known us a while, it's long overdue and we just need to get it done. It will be a big can of worms when it begins but it's one thing in our life we just finally have to move forward with. We learned that the long process of permit pulling needs to begin again because it has been so long since the last time we attempted to begin. Oddly enough, the last of them just expired April 1st. How ironic is that.

On to Ian. I arrived with enough time to hold him for a bit before his 2 pm feeding, our scheduled time with the OT so she could work with me on giving him the bottle. Of course, as usual, it was fabulous holding him. When she arrived, he was in a mellow state, which was the point of me holding him first. So we began. He took the first 10 cc's fine but the last 5 of the 15 total took a while. He just seems to get tired and not as interested. We'll see how his endurance picks up as we go. It's just such a bummer though. It's so exciting when he starts going. I thought, this time will be different, he's going to take it all. It's okay, I don't want to push him too much with this. He's doing well just taking what he does.

I held him for a while after the OT left. This, I feel (and I hope) I'll never tire of. It's amazing how skin-to-skin holding escalates bonding. I'm really hoping it's mutual ;-)

Of course what interrupts it is that I've got to pump. I was also supposed to meet with Dr. A before she went off of her  XX so I didn't want to push the timing too late. This meeting is where we the ride begins to head down.

It was early evening by the time she was done and ready to meet with us. We were to call Mike on the phone to include him in her download.

She went over the goals she began her two week stint with, and the fact that she had basically met them all. Off Milrinone, up to full feeds, etc. This, of course, is a good thing. He's much better off as she exits than when she arrived. All good. Then we got into the million dollar question, when/how might he come home, which of course is the goal for everyone. This is the can of worms that took me by surprise.

It's not the when, but the how that is a bit overwhelming. We went over where he's at with all of his different issues.

He's still got Pulmonary Hypertension which I understood he was cured of before Dr. Devaskar left. The issue is he's not able to be weaned off Milrinone or it's replacement, Captopril. So he will go home on Captopril & Sildenafil 3 times a day. She said he could grow out of it or have it the rest of his life. This means he will just have to be careful not to go to high altitude or get himself into situations where his oxygen level is compromised. It also means he might have to go home on oxygen either ongoing or for emergencies. For this we'll have to have him followed up with by the Pulmonary Hypertension Clinic as well as the Pulmonologists.

He's been having arrhythmia on and off this last week, irregular heart beats. They've given him potassium and electrolytes to compensate for this but, again, we'll probably want to have the oxygen to keep his oxygenation up and he doesn't end up with heart failure. This is not really something that can be seen once he's off the monitor so I'm a bit anxious about knowing how this is going and when to help him out. For this he'll have to get regular echo cardiograms.

We have to make a decision whether to allow them to do the surgery to place a feeding tube in his stomach. Obviously, he's not even close to full feeds through mouth and we haven't even began to nurse. Even if he moves up on what he can take through his mouth, she didn't seem confident that it will be up to full. She also made the point that if he gets sick at all and refuses to eat, he'll end up back in the hospital relatively quickly due to dehydration if we don't have an alternate way of feeding him. This is something we've thought about. I'm for it, although of course I'd rather him not have it, we have to do what's in his best interest and I believe this is. If we give the go ahead, he might have the surgery next week and then it has to heal which might take a week or two. For this we'll have to have him followed up with by the G-tube Clinic.

They want to do a CT scan of his lungs to see how hyper-inflated they are. This will tell them if he has a fibrosis issue or lung disease. For this, he'll be on breathing treatments 2-3 times a day, like his sister, and will have to be followed up with by the Pulmonologists as well.

Then there's his brain malformation. She brought up a point about this that made me sad. Of course this has been on my mind non-stop. I've still not had the emotional strength to look up more info on the web, which is quite selfish of me. I have tried to contact, and played phone tag, with two different Doctors of Osteopathy and have done a bit of research on how this might help him. The thing that made me sad is we were discussing the fact that we didn't do another MRI because they really weren't expecting much change in the brain so quickly. She did mention that he'll probably have to have many MRI's in the future in order to follow his issues and make sure he doesn't develop Hydrocephalus from obstruction of his spinal fluid. When I asked about his malformation and how that might change relative to the size of his brain as he grows, she said that portion of his brain will most likely not grow. Which, I guess, will be the cause of his issues. Sounds like as his body matures, his brain will not and thus causing the symptoms we were told and read about.

Among the many therapies he will have, there will be OT, PT, Speech, and others I'm not aware of yet. He will need many follow-up appointments and a lot of one on one work with Mommy, which is to be expected. That doesn't even include any additional work we might end up doing with alternative medicine. In short, Ian will be a full-time job to take care of in order for me to give him my all to help  him thrive. I'm up for the challenge, I just need to work out how it will affect Lila. In general, she will end up having to "go with the flow" as they say. But having the whole summer off of her short preschool schedule (2 days a week, 3 hours one day and up to 5 hours another) and beginning in September on the same schedule,  is going to be tough for all of us. She's such an amazing girl and I don't want to end up depriving her stimuli and development in order to only focus on Ian. I'm afraid she's going to get lost in all of this. I guess I'll figure it out as I go but needless to say I'm quite concerned. I'm just "thinking/typing out loud" here. We'll work it out I'm sure.