Tuesday PM - Just a quick follow up. The doctor decided to remove the central IV line based on the results of the lab tests. They believe the infection was from that line, and now he has two IV's (one in each arm). He doesn't maintain those very well, but the hope is he can keep them in for 2 or 3 days until the antibiotics can knock out the infection.

Overall a better afternoon than morning. He's back to his full amount of formula and seems to be tolerating it well. We also got a good report from an MRI that was done on his pituitary gland. Check by tomorrow for the latest...

Tuesday AM - It is with a huge sigh (not of relief) I begin today's post. Adam developed an infection yesterday morning, so all bets are off for now as to when he will come home. This is obviously not a good development, and we are waiting to see what happens next. This morning was really rough as he was not able to hold down his formula. As I'm posting he's getting a reduced amount of formula to see if he will be able to keep it down. They've started him on three different antibiotics to treat the infection. Until today, he really never seemed to feel sick. His temperature, then blood culture, was the only indication that something wasn't right. But this morning it was easy to see he wasn't feeling well. He's been sleeping for about 2 1/2 hours, which I think is good because he needs the rest.

Now we are waiting for the next blood culture, which should be in by 4:00 this afternoon. The doctors have to decide whether to remove his central IV line because it may be the source of the infection, or to leave it in because of the uncertainty of his heart rhythm that may require IV medication. They'll decide based on the 4:00 report. So for now we don't know what's in store for the short term. It's another fight for Adam to take on. We'll know more in about 24 - 48 hours.

On the good news side, he weighed 8lb 10oz yesterday and will hopefully keep up the trend. I just spoke with Heidi who has Grant at the doctor's office for his immunization. He weighs 17.8 lbs. and has been cleared to start solid foods.

Our wild ride continues, with bumps in the road included. We're anxious to get to the end, with Adam and Grant at home making us crazy...

Still Sunday - After I posted I noticed I should have addressed the situation regarding blood for Adam. Fortunately, he hasn't needed blood for quite some time. Your offers are greatly appreciated, and I hope that we don't have to take anyone up on them. Just the same, everyone of you are the best. Thanks...

Sunday AM - Today marks a couple of milestones. First, the boys are 6 months old. Hard to believe it's been 6 months. At times it seems it hasn't been that long, at others it seems it's been longer. Second, this is the 70th post on the blog if I read the numbers correctly. That's more than 10 posts per month. Not bad, considering everything that's been happening.

But enough about that. We also accomplished another milestone last night. Grant decided it was time to roll over from his back to his front. It took a lot of effort but he made it. So what did we do? Got the camera, put him on his back, and made him do it all over again. It reminded me of the time when we would catch turtles, put them on their back, and would see how long it took them to roll back over. Of course he doesn't remind me of a turtle, but you get the picture (don't you?). He really gets into it with lots of grunts and yells, and I'm sure he's burning lots of calories.

We hope to hear something good for Adam by Wednesday of this week. He has an MRI scheduled and a few other minor tests as well. If all goes well and he behaves himself, there's a chance he could be home by Friday. Lots of ifs, but it has to happen sooner or later. Sooner would be be better for obvious reasons. Not so obvious is that our last day at Ronald McDonald House is this Wednesday. They have a 45 day limit per family due to the high demand, which means we have to check out for 7 days then go back on the waiting list. Wouldn't it be great if that was a non-issue?

One thing I haven't mentioned regarding Adam's homecoming. As Grant has been on a quasi-quarantine since he has been home, so will Adam. The difference is that Grant's was only until the end of March, give or take. Due to the number of health issues that Adam has, the pediatricians tell us that he will have to be on house arrest, quasi-quarantine, etc. until this time next year. The two things that are the biggest threat to him for the next year are heart arrhythmias and infection. Infection has to be controlled for Adam the same as with Grant. We don't have all the details yet, but it may also mean that Grant has to continue with his current isolation as well. Fortunately, healthy adults who, in flu season, have had their flu shots, can come around. Unfortunately, children below the age of 14 (I think) won't be able to. While this is not the ideal situation we had in mind, it's the only way we can get Adam out of the hospital and ensure his health and safety. It's going to be tough waiting for another year but we don't have another choice, and nothing is more important than getting him home and growing and thriving. We know that everyone is waiting to see these little bandits, and we are going to do whatever we can to allow that to happen as long as we follow the doctors' orders and protect Adam. We ask that everyone be patient and understand what is at stake.

Thanks for reading. Happy 6 months to Adam and Grant, happy 70th post to me, happy birthday (belated from yesterday) to my sister Cara, and happy anything to anyone that I may have missed or overlooked...

Thursday PM - Adam was transferred back to the Progressive Care Unit last night at 10 PM. He's doing better, just some periods of rapid breathing and a diaper rash I wouldn't wish on anyone. We're not sure when we'll be talking about going home again, but I would like to think it would be sometime next week. That is, if he behaves himself. It only takes one look at the archives of the blog to see that he keeps everyone on their toes. But for now, he's doing well and up to 2 1/3 oz of formula every 3 hrs. Weight gain is still a slow process, but it's getting there (8 1/2 lbs). He gives us a smile when we first come in after not seeing him for awhile, but after that he's mostly all business.

No change on Grant, just getting bigger and smiling and laughing and trying to talk.

Time for bed, I hope to have more good news soon...

Monday AM - Possibly the blog's shortest post. I just spoke with Adam's nurse in ICU. His heart rate has decreased to near-normal levels. This is great news and I can only hope and pray that he continues to do well. That's it for now. If you're reading this and have no idea of what I'm posting, check the previous blog. More later...

Sunday PM - This is by far the longest roller coaster ride we've ever been on. Since the last post, we had spoken with the Chief Pediatrician of the Critical Care Unit. He wants to get Adam home and the plan was to set everything in motion for him to be home no later than Friday February 23. We were nervous but very excited at the prospect. This conversation actually happened yesterday (Satuurday). Comes today, and I go to the hospital after work. I waltz in to Adam's room only to be met by the nurse who tells me he's doing OK BUT... he's having a rapid heartbeat. He looks and seems to feel just fine, actually in a pretty good mood, but that pesky heart monitor says his heart is beating too fast. Fast forward to six hours or so later - reluctantly the doctors are transferring him back to ICU to have the hands-on monitoring he was getting before. In 24 hours we've gone from talking about his homecoming to shipping him back to ICU. From the "things-could-be-worse-department": His blood pressure, oxygen level, and overall general demeanor are unchanged. I left him tonight in a good state, and if it wasn't for the monitor, no one would no any difference. The plan is to check and adjust his medication, and also a central venous line was readjusted that may or may not have been causing the problem. We should know more in a day or so. He doesn't seem to be in any immediate danger, but this is why they monitor and get an early jump on any problems.

On a lighter note, I spent the afternoon and evening with Grant yesterday. He gets to be more fun every day. I think I'm going to have to buy a hoist to lift myself off the couch when I'm holding him. It seems I pulled one of those ligaments in my right knee while trying to stand up. He's not getting any lighter.

Keep Adam in your thoughts and prayers, and I will post his progress NLT Wednesday...

Thursday Midnight - Everything is relative, but the last 36 or so hours have been crazier than usual. On Wednesday morning the doctors decided Adam was well enough to go back to the Progressive Care Unit (PCU), but at that particular time there were no beds available. What's more, his ICU room was needed by another patient, so we were moved into a semi-private room to wait. The wait turned out to be just over 24 hours. We're not sure why but Adam was extremely fussy to the point of being inconsolable. His breathing rate went up beyond normal, and the doctors decided to wait for his transfer. This morning he was still somewhat irritable, but not as bad as yesterday. He was transferred around 5 this afternoon, and is resting comfortably. I just came from visiting (and feeding) him, and I'm happy to report that his room is quieter which seems to make a difference for him. I'm just a Dad, but it seems that he may not have liked the room we were moved to while waiting. It was noisier, smaller, and just all around aggravating. I felt it and I believe he did as well. He is being fed 1 1/3 oz of formula every 3 hours and has FINALLY broken the 8 lb barrier, weighing 8 lbs 2 oz. We've been waiting a long time for that. It will be great if he can continue to improve without any further setbacks, and the doctors are going to increase his formula volume very slowly from this point on to hopefully avoid any problems.

I'm very tired and won't take the time to proofread this until tomorrow. Feel free to point out any mistakes, and I'll catch you on the next post...

Monday PM - Once again I'm later than I wanted to be but it's really tough for me to post over the weekend, including Thursdays and Fridays. My weekend is Tuesday and Wednesday as most of you know, so that's when I can post. If something monumental happens, I'll break a leg to get it on the blog sooner than my weekend.

That being said, Adam started eating right after my last post from last Wedneday. He started slow at 5 cc per 3 hours, and as of today he's at 35 cc every 3 hours. He looks and acts as well as ever, and is starting to smile and make cooing sounds. Now I don't believe in jinxes, so I'm going to state a fact, and that is we've been down this road before. Many times he's done well only to have a relapse with his G/I tract. One of these times will be the time that he pushes past the barrier and never looks back. We're hoping and praying that this will be that time. If not this time, then the next.

He's still in ICU for monitoring purposes. They haven't switched the smurf medicine from IV to oral yet, but that will likely happen within the next day or two. Once that's done he will probably go back to the PCU (progressive care). Just as before, it's a sign of progress, but we lose the patient-to-nurse ratio that we have in the ICU, which means we have to keep a closer eye on him ourselves. Hopefully it won't be long before we're all at home and won't have to worry about any such thing.

Grant is unbelievable. He's getting so big, and loves to play and be held. He changes from week to week, and it's hard to believe that he and Adam both will be 6 months on February 25. They are very different right now, but I believe that Adam will shoot up in size once he gets home just as Grant did.

Hope this gets everyone up to date, I'll be posting more over the next day or so...

Wednesday PM/Thursday AM - A quick post to catch up with Adam's situation. Since he was taken completely off any feeding or medication through his G/I tract, they converted all of his meds to IV. The "smurf medication" requires closer monitoring of his vital signs, so he was transferred to the Pedi ICU on Monday evening. Tuesday was a resting day as he seemed to be worn out from all of Monday's activities. He slept peacefully most of the time and didn't seem to be having any pain. His fever has gone away and there are no signs of infection so far. Beginning Thursday they will try, once again, to introduce a small amount of formula with gradual increases. This is the same cycle we've been seeing for several months, but the doctors say that we keep trying and as he gets older he will be able to rebound from the setbacks. It looks like we may be fighting this battle for awhile. Today he was somewhat fussy and agitated, and popular opinion says that he wants something in his stomach now that he's feeling better.

Too tired to go on any further for now, will post more as we march on...

Monday AM - Unfortunately our smooth sailing has come to a temporary halt. Over the weekend Adam's abdomen became bloated and he started running a 101 fever. His digestive system has basically shut down, meaning nothing is moving through when he eats/drinks, so all feeding has been stopped. Possible causes include infection or pancreatitis. Several tests have already come back negative, and we're waiting for blood culture results. I stayed at the hospital with him last night, and he had a surprisingly decent night. His temp goes up and down between 99.5 and 101. He rests and is comfortable with the lower temp but he seems to have some pain in his abdomen that they are treating with medication. They've taken several x-rays, and he's scheduled for an ultrasound this morning.

That's about all for now, just a wait-and-see situation. I'll post more information as soon as I get it. We've had better days, but we've also had worse. The fighter fights on...