Saturday PM - Looking back at the last post I said, in so many words, that I would post within 24 hours with more details. Would you believe within 72 hours? It's going to be very hard to put into words everything that has happened to get Adam home, and all of the feelings and emotions of the last week. But I'll try.
For the first time since July 8, 2006 I can say that I don't have a family member in a hospital. That was a L O N G stretch. Thanks to close friends and family, I wasn't at a hospital every single day, but it seems like I was. I'm very appreciative to those who stayed with Heidi during her hospitalization, and I know that she is as well. From August 25 until March 7, either she or I were there with Grant and/or Adam. Again, both of us had a lot of support from our friends and family. I can't imagine going through this without that support.
On February 27, I posted the news of Adam's infection. After that I was very brief because of all the crazy things going on. So for those who want some detail, here goes. After the central line was pulled, there was much discussion about what would happen once the two IV lines no longer were good. The attending (head) physician of his team wanted to place ANOTHER central line on Thursday to ensure they had some sort of IV access through the weekend. Placing of this line included general anesthesia (ventilator) and a risky surgical procedure to insert the line in the large vein under his collar bone. At first we were under the impression that this line was safer from infection than the other central line, but such was not the case. As I spoke to the pediatric surgeon who would place the line, it became crystal clear that this was not the way to go, and we refused to consent to the procedure. Fortunately, our physician/captain Dr. Stein agreed with us, and said he would not want to open another avenue for a possible infection. Dr. Stein is the director of the unit where Adam has been, and is consulting with Adam's primary pediatrician in The Woodlands for his future treatment. With Murphy's law being suspended, Adam's IV's stayed functional until Tuesday at which time it was removed. He required three more antibiotic injections on Wednesday, Thursday, and Friday which completed the regimen. And today is the first day of his young life that he has not had some sort of needle or IV poked into him.
So no more trips across Houston to the hospital. Adam still has a feeding tube in his nose which we replace once a week. Heidi is quite adept at this, but we have a home health nurse if needed. Heidi's mom is also here helping us. Adam takes 70 cc's (about 2 1/3 oz) every 3 hours during the day. Anything he doesn't finish in a half hour goes into the feeding tube. We're encouraged to see the bottle amount gradually increasing almost every day. At night he takes about 280 cc's over 12 hours with a pump, and this keeps him full and helps him (and us) sleep. The feeding tube is the last remnant of the hospital, and when that's gone he's a free man. At least until his next surgery which won't be for a couple of years at least.
When we first got home with Adam, Grant saw him and was immediately taken with him. We brought them close together, and Grant reached for him and held his hand. Adam was interested too, but Grant's attention was on another level. As they lay side by side, somehow they manage to make contact with each other without our help. Watching them bond and re-connect is just another reward for us.
The difference between Adam and Grant is fairly striking. Heidi says it's like having a toddler and a newborn in the house. First, Adam now weighs 9 lb 4oz (half or more of that is pure heart), and Grant is about 18 lbs. Just picking them up is telling in and of itself. For now Adam seems to sleep more, but that's good as he has a lot of catching up to do. Everyone tells us he will catch up, and that wont surprise us at all. Adam does remind us of Grant when he first came home, and there are some similarities between the two physically. And for now, Adam is wearing the clothes that Grant has outgrown. Temperment-wise, Grant seems to have a shorter temper than Adam, but Adam fusses more when he's hungry. Grant now likes to play hide "under the diaper", "giddy-up horse", and he also likes to be gently tickled. Adam is actually more vocal than Grant, and at times he really tries to carry on a conversation. He can grab things and hold them, some things as well as Grant. Grant is trying to hold his bottles, and Adam will put his hands on his bottle, but Adam's hands aren't quite as big as Grant's. We've taken a lot of pictures and I'm really trying to get them posted on Walgreens' web site.
Every 3 hours during the day (sometimes more often) we have an alarm to remind us to give Adam his medications. He takes 5 different ones at different intervals if you don't count the multivitamin. After 11 PM there's no more until 7 AM the next morning. Sometimes he wakes up to have his diaper changed or his pacifier replaced.
Many of you have sent email or posted comments voicing your support for us, or your amazement at how we've come through all of this, or especially how Adam has come so far and fought the odds. With regard to Adam, I can only say that to us it's a combination of things. His heart and tenacity, the skill level of his medical providers, and the prayers and support from all of you. For us, there were many times we asked ourselves why this was happening and how many more times would we have to watch him have another setback. Being in a place like Texas Children's Hospital, and living in Ronald McDonald House gives a lot of perspective. All it takes it to see a young child walking or sitting in a wheelchair, with no hair as a result of chemotherapy treatments, fighting leukemia or some other cancer. These are the children and parents who can ask these questions. Adam fought many tough battles, but I can't imagine dealing with anything the likes of which these other kids are fighting. I guess what I'm trying to say is that the saying, "You can always find someone in worse shape than yourself" is true. Adam fought through some very touch situations, we were just there to love, help and support him.
Now here we are at home, Saturday night being the fourth night the four of us are together. Adam seems to be proving his doctors right, in that he is beginning to thrive by being home with his family and not being poked and prodded every hour in the hospital. It's a lot of work with both of them, and we have to be very vigilant about his medications and the timing and administering thereof. Heidi has developed an excellent system to keep us on our toes, and it's amazing how she keeps us organized. But last Wednesday night was like Christmas for us. We have waited a long time for this and it was worth every minute and every tear.
For at least the next two months (through May) and possibly longer, we have to keep both boys semi-quarantined, meaning they can't be around anyone who is sick with anything nor can they be around anyone under the age of 14. Alone, Grant would probably be OK by the end of March, but anything he may contract would be a danger to Adam who has no immunity whatsoever and is still very vulnerable to any type of infection or illness.
This is by no means the end of the blog. I will continue to post their progress and give medical updates as they happen. Just so as not to lose any readers, I hope to continue posting at least once a week and I'll also upload pictures as often as possible. In the meantime keep the blog comments coming and email me or Heidi as often as you like...
