Time for a visit!!

Nanny Sue and Papa are here for a visit!!! Isaiah is very happy about that, obviously, and his sisters came for a visit too. This is the first time they have seen him since he was admitted on Feb. 15th.

Fever is gone, but lots and lots of stuff going from the Nasogastric tube into a drainage bag. It should be coming into the other drainage bag coming from his abdomen. We don't know why it isn't but THE TEAM is going to discuss it Monday. What to do, What to do...

I am so glad I got to see my boy, he is sleeping right now like an angel, so I'm trying not to bug him too much. Sad to go home today and I will miss him so much BUT someone has to work and that is me. That is the beauty of being a nurse-no shortage of work and we are trying to save every penny for the upcoming transplant.

I spoke too soon...

things are not quite as great as I thought they were. Temp is steady at 38.0 and according to Aaron, the drainage is coming out of his Nasogastric tube without suction. That means that there is enough pressure to push stuff against gravity up through the tube and out. Also, he said that there is a lot of blood coming into the drain from where they drained all of the fluid out of his abdomen. He has requested a new CT scan but I don't think one has been done. Some of the staples were removed today from the incision, it doesn't look like there was much underneath, which is good.

So, Aaron thinks he is still bleeding internally and something else is wrong. I will be with my boy this weekend, so we will see. I've got to get my eyes on him and check it out for myself.

Isaiah is never simple, we've known that for a long time...

The team says that if we could get his drainage under control, he could possible go outpatient next week. That means he would still stay in Omaha, but not in the hospital. We would stay at the Lied Center-a hotel for patients and families attached to the medical center. Let's hope it's not for too long...

Homesick...

Isaiah is reading through cards and pictures sent by his school. He is missing his classmates and is wanting to get home. He just wants his normal life back. I don't think he realizes that it's not going to be normal for a very long time, if ever-but we'll do our best for him...

In the picture, he has on a mask and gloves. This is how he goes around outside his hospital room because he is immunosuppressed and he is also in isolation. His incision culture is positive for VRE. VRE is an equally bad cousin to MRSA, you may have heard of that. VRE stands for Vancomycin Resistant Enterococcus. Enterococcus live in your gut normally, but it can overgrow and cause infection. This particular bug is resistant to Vancomycin, a strong antibiotic that would normally be used to treat the infection. Isaiah had blood infections so often when he was little. Each time, he was treated with Vancomycin, the drug of choice. That is why he is resistant now.

On a happier note, his fever is gone!!! AND his liver enzymes are ever so slightly improved AND his bilirubin level is down. My husband says he is not so yellow anymore. YAY!!!!!!!!!!!!!!!!

Now if we could just get his stomach to stop producing so much stuff, we would be in good shape.

Still Smiling

So, Isaiah's temp has been steady now at 38.0 degrees since the "great draining" took place. That is 100.0 degrees in fahrenheit. It had been at 101.0 degrees before that (38.5). I'm so sorry-it was pointed out to me today that a fahrenheit conversion would be helpful. I hadn't even thought of that.

Since he was throwing up yesterday, they put in a big ol' post op nasogastric tube to suck anything extra out of his stomach. It is very uncomfortable and not fun to put in at all.

The good news is that today was free haircut day at the hospital. There is a group of volunteers from salons around the city that come and give haircuts to pediatric patients. Isaiah loves to experiment with his hair-after his transplant in 2007 I let him get a mohawk and we dyed it blue. He's still smiling in spite of everything....

Feeling a little better today, I think. It just takes so long to get him better and I want him home with me!!!! He's been in the hospital since Feb. 16th...

He's gonna blow!!!

So, The Team was concerned enough that they decided to drain the fluid off little man last night. Still don't know the exact volume. My husband said it was A LOT and that it was gross and bloody and nasty looking. THEN, the boy's intestines starting working and everything started coming out the other end. So, it looked like his remaining gut had awoken magically after taking the pressure off.

Today, he hasn't stooled again and he has thrown up now 6 or 7 times. He had to go throw up when I was on the phone with him. Aaron promised me that he checked Isaiah's tummy drain and that it was not in a bad position. I will be very interested to know what his lab results look like today.

He's on two different IV antibiotics and an IV anti-fungal now for at least 10-14 days.

This is where things are going to start getting complicated, I can tell.

Finally...

Something reared its ugly head and now we know what else is wrong with our boy. He had a couple of red spots near his incision that we had been watching. Not much happening with them. By last night, he had drainage and blistering the entire length of the incision. He had a CT scan today for a closer look. Fever up to 38.9, feels crummy, laid in bed, lots of pain.

He has ascites (fluid accumulation in the abdomen from the liver malfunctioning) and also what appears to be an abdominal abcess (bag o' pus). He is going to go down to "Specials" in the radiology department tomorrow where they will attempt to drain the fluid and pus from the abdomen with a needle guided by pictures of his insides.

I think this picture is an appropriate expression of his feelings today, whaddya say??? Note that he still got out of bed and tried to do something fun. What a kid!!

Yellow is the color of sunshine and happiness...

So, we made it through the night without anything crazy happening. Fever still there, not better, not worse, at 38.6. I was speaking to a resident this morning about him. The problem is, even when something is going on with Isaiah, his lab work typically does not look horrible. Abnormal, but not horrible. When he was in rejection his lab work was normal, even his immunosuppressive drug level was normal. Yet he was in rejection. With the vomiting that started in January and led to this surgery-lab work, all normal. Not a single sign that something is going on except what I can see with my eyes and my intimate knowledge of my son. Normal kids lay in bed-not Isaiah. If he is laying in bed, something is seriously wrong. But I digress...

The resident was explaining to me that his lab work is abnormal but not significantly horrible. I exlpained about how everything looks OK when it's not. I really believed that the vomiting he was having was because everything was backing up into his liver again, but I don't think anyone believed me.

When I bathed him I realized that the swelling has gone down in his abdomen. Since his abdomen is basically hollow now, the drain tube (from the picture yesterday) is tilted downwards instead of being straight. I cleaned it and put a piece of gauze under the round plastic guard. Guess what?? A ton of drainage came out. Then suddenly, my boy felt much better. So, I think we have taken care of the pain issue, maybe. That would have been enough to cause the vomiting because the fluid in his gut would have backed up into the liver.

When the team came for rounds, we talked about the fever and jaundice. It may never go away. We just don't know yet. It could start to resolve slowly OR this is the start of a very rocky road to liver failure. He's not even officially listed for transplant yet. He has to heal for 6-8 weeks first. So, we will have to learn to love yellow, I'm trying to make myself really like it right now. I think I will go straight home and take anything yellow out of his closet. Definitely not flattering at this point. It reminds me of when his big sister, Boo, was a newborn. She had the newborn jaundice and it really ticked me off-we had received some darling clothes for her at a shower and most of the items were yellow. You never saw a less flattering look on a newborn.

I am about to leave for home again and hated saying goodbye to my boy. My husband had just left for church services when the team came for rounds, so I need to update him ASAP.

Back home to my girls!!!