I know those of you who are watching this post, and are looking for good news (which is what I would be doing if I were looking as well) are hoping to find it here. While yesterday's news wasn't all bad, it wasn't all good either. I kept in touch with Mike (who was at UCLA) and Vladana all day and Ian's numbers seemed to be going up, which is a good sign. Unfortunately, later in the day, Dr. Devaskar stopped by my hospital room to check in with me. I always say to anyone delivering me news, give me the bad news before the good, as I like to end on a good note. We'll that's exactly what he did.
They did an ultrasound on Ian's brain in preparation for understanding if they could do ECMO therapy on him if it came down to it. If I understand it correctly from the explanation, ECMO is where they put a cannula in his neck and a machine works 100% for his heart and his lungs to give them a break from the stresses they have been under. This is a very serious therapy and is only done as kind of a last resort. I guess they needed to make sure his brain was free of blood first, which the results showed it wasn't. Dr. D showed me the difference between the scan they did on him when he was here @ SM and what they did on him yesterday @ UCLA. There's some bleeding in the left ventricle that has shown up.
What does this mean? Well he said it all depends on if it gets worse. As it shows so far, if it gets better, there could either be no long term problems at all or, if there were, the part of the brain that is currently being affected is the portion that controls the strengthening of the lower extremities. He said this could be helped out with physical therapy. Let's hope that it doesn't get worse. Very scary to look at.
When he returned to stay with me for our last night @ SM Hospital, Mike reported that the most of Ian's numbers were much better. As Mike is familiar with what he's looking at, I listened and took his word for it. I'm sure once I'm there also looking at the results, I'll understand what they all mean much better myself.
Unfortunately, when we called to check in on how things were going after the 8pm reading and then again at 11pm, they had gone up a bit again. But the nurse on said to us, this is a different baby than was here last night. He's in much better condition. This gives us a little glint of hope. As we have heard in these cases, we need to just take each day at a time and celebrate the positives. We also need to realize there are ups and downs and to not hang too dependently on to one bit of good data, just to take it as it comes.
So, back to it being a big day for us as a family. I am finally being released from the hospital after being here since Feb. 25th, 27 days to be exact. My parents will take Lila (our beautiful little princess who will be 3 in May) to preschool @ 9 and Mike & I will head up to UCLA to see & talk to Ian & meet his medical team face to face. It will be the first time I will have seen him since Saturday. I will spend time talking with him and meeting his team of doctors for the first time in person.
The other thing I'm going to try doing is playing a couple of videos Mike has on his iPhone of Lila singing and dancing. A very dear friend and neighbor let me know that when she brought home her youngest daughter from the hospital, the sound she reacted to most was her toddler's voice. Since Lila has been speaking to her brother for 9 months now, I'm hoping it will have an effect on him as well.
After a few hours, Mike & I will head home to meet Lila after school. Mike has not seen her since Thursday of last week and I've not since Monday of last week. It will be a fabulous homecoming that I can barely stand to wait for!
I'm going to try to handle all of this on one Darvocet and a Motrin if I can. I'm not sure if it's still the Magnesium in my system flowing together with the pain killers but my head is so often in a complete fog and I want to be as clear headed as possible for this very special day.
The pain from the C-section has definitely gotten better over the last few days, as expected. At least something in my life is as expected at this point ;-) (knock on wood) Dr. T is sending me home with the drains still attached to my incision because I still have bleeding. While they gross me out, it's much better than the alternative of infection. After my delivery of Lila, which was also a C-section, my incision didn't heal up for 6 weeks due to infection. It was miserable! I'll come by his UCLA office next Monday to get them out. Until then, the bit of nurse in me that has come out through this whole experience will have to deal with draining and taking care of them. (Normally, I do not even like to look at a serious cut of my own. I'm an "ignorance is bliss" when it comes to my body functions ;-)
I must touch on this... the overwhelming response to my email sent has been quite mind boggling. Between the power of so many friends and family members that both Mike & I have, and the lightning speed of the internet to spread the news, we have truly been shocked by the amount of people anxious and willing to help us. It's been a job just trying to get back to everyone and we have both tried to be as diligent as possible. I know it's so hard when people want to help and they feel they can't get through to us. We're doing the best we can, it's just with all that's going on we are more than a bit delayed getting back to some people.
We will continue to respond and try to send the list out to as many doctors that feel they might be able to recognize the myriad of Ian's issues and give us any advice at all. As I mentioned in previous posts, we are trying to field the responses in order to allow the team working with Ian to keep focused on his care, rather than returning phone calls or emails. While we know it's all in the best interest of helping, we need to help them keep his care their priority.
What it has shown us, by most accounts, is that what they are doing is all that the top in the medical community would do. Seems that every time something is suggested, we are already familiar with it because Ian's team has told us step-by-step what they are trying.
While this is the case, we are still constantly sending his list of issues out and are hopeful that someone will recognize a pattern in order to put a finger on what exactly is causing his problems. Until we have that answer, we will continue to talk, email and text with doctors from all over the world.
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The power of a mother's touch and voice can do amazing things - good luck.
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