You may think that every day is the same for us and we wouldn't care which day of the week it is. This is not true at all. The weekends are terrible if you are not in PICU. Nothing happens over a weekend on the ward and you would think the entire hospital was closed. If you happen to find a doctor, you should win a prize. It's almost like a treasure hunt to find them on a Saturday or Sunday.
Every other Monday is the worst day of all. That is when the new cardiology rotation starts and you start your fight over. I have found that the majority of the doctors come on with extreme arrogance and give you the impression that they are in ultimate control and you mean nothing. It's a good thing I knew that this morning, when rounds began.
The doctor introduced himself and went through rounds on Hope. I voiced the fact that I wanted her feeds to continue slowly and he agreed that we were on the right path and to continue slowly was a good idea. I asked about a few of her medications that we wanted changed, he also agreed to do this. Apparently it was a two request kind of morning. He said that he planned to change Hope's status so that she was no longer on close observation. I told him that I didn't feel that was a good idea with her history and the location of her PICC line. There is a high risk of infection and losing the PICC line would absolutely leave us with no options currently. His response...He told me that I need to think about the other families, that every parent wants close observation for their child, but not everyone can have it. I bit my tongue today, I don't want to start a war on his first day of a two week rotation. I was not happy though.
Selfish, that is the only attitude that works in fighting for the best for your child. I am aware of the other families, I am friends with a number of them. We all want more staff so that our children can receive the care they SHOULD be receiving. It's not about what we want, it's about what our children need. I am aware of the other families when I have to wait 7 hours for a doctor to come see me and when we are moved to the ward and should still be in ICU. We were bumped numerous times from our first surgery for other families and we have waited to be airlifted for other families as well. I am 100% aware that Hope is not the only sick child. Hope is the only sick child that I am responsible for though. I am going to continue to ask for things that benefit her, that is the only way I know how to care for her.
The doctor returned with another snarky remark after not hearing my original question. He completely missed what I had asked and started to lecture me. He was then interrupted by one of the nurses, who informed him that he was lecturing me when I had the exact same opinion on the matter that he did. Mondays are exhausting. I already feel like I've been fighting extra hard this week, and I'm only through the first day.
There is also a positive side to this Monday. Hope is starting to have small amounts of food trickled into her stomach. She is tolerating it beautifully and is already down to 41.5cm in her belly! She is so much happier and is smiling again. I am hopeful that this slow pace in feeding will give her the opportunity to start eating normally again. The heart surgery will set us back, but we have a plan that is working and can be used post operatively.
The comment we heard all day from the medical staff, was that Hope looked so much better. It's so much nicer than constantly being told that she looks unwell. Hope has lost a lot of weight as they've worked to bring her stomach back to a normal size. Some of the weight needed to go and was purely fluid weight. On the other hand, some of the weight was not fluid and they are hoping she will not continue to drop in weight.
Hope needs to be 10 pounds for her surgery and is currently 11 pounds. If she continues to drop in weight over the next 9 days, this could be a problem. Please join us in praying that Hope will stop losing weight and will at least maintain her current weight. Please also pray against infection as we wait for her surgery.
Sadie was such a brave big sister today. She had to have her flu shot in order to keep Hope and others safe. She watched them draw up the vaccine and is very familiar with needles. She asked me if it was going to hurt and I told her that it would hurt a little. She sat completely still while the needle was given. After it was over, she looked up at me and told me that it had indeed hurt. Nothing a new sticker and a piece of gum couldn't heal! It was almost as if she understood that the momentary pain was going to benefit her little sister. She has the most beautiful love for Hope and never seems to resent her.
Thank you for continuing on this journey with us. We let ourselves dream about being home in November, but are trying to be careful. We know that if things don't go well in the Glenn, we could be here for much longer than we'd like. God has given us the ability to get through each day, and we know that he will continue to be faithful.