Mac had his MRI yesterday and then we came back to the second floor. They are happy with how it looks and clinically he's showing signs of recovery. These rooms are much quieter than ICU - there's a lot less beeping, lights, and constant monitoring so it seems more peaceful. He had an ultrasound this afternoon to see if his abdomen drainage tube can come out soon. (He's still got about 12 pounds of fluid in him according to my calculations.) They are also looking at his organs - gall bladder, liver, kidneys, colon, lungs. He was assessed by PT this morning and we are doing what we can as far as moving him around in bed and to a chair, very carefully. They feel like once all the fluid drains he'll make a fairly quick recovery. The skin care team is keeping an eye on him for bed sores. The respiratory people come in regularly to work his lungs. His TPN (nutrition) will not be reduced until he shows he's eating enough - not there yet.

So that's where we are today - more tiny steps toward recovery. Back on the second floor, thank goodness! Everyone keeps telling us this recovery will take time... so we're still being patient.... again. Mac is getting back to his old self (hindsight showed me how the seizure affected his personality.) He's still got lots of discomfort but he's calm and polite again.

I'll update again soon. Thanks for keeping Mac in your prayers!

It's Thursday night and this afternoon we moved back into a Step Down room (remember this is where we started early last week). We have pretty much taken the full tour of the ICU now. But we're one step closer to the second floor....

Mac is slowly making improvements: He is down to the lowest amount of oxygen and he continues to do his breathing exercises like a champ! They want to slowly start weaning him from the IV blood pressure medicine and get him on an oral one - this will take days. He has been cleared to start slowly eating food as he can tolerate. He had some toast today. The fluid in his upper torso is greatly decreased; his bottom half, legs and feet are still puffy. No fever. Tuesday's EEG showed no more seizures. He still has the tube in his abdomen for draining, but the chest tube came out yesterday. We will not start physical therapy until after next Monday's MRI. But we can do little things like help him move his legs and feet around. (He is physically capable of moving limbs, it's just that he is sore in different places b/c of his drainage tubes and IV lines. Plus he's been in a bed for a long time...) He's still tired and little confused about things, but I think overall the seizure will be 'reversible'. His vision seems ok.

Those are some of the teeny tiny steps toward improvement. But he seems really sad and I know he is so over this hospital stay. Some of this can be attributed to the new medications and some of it is just reality - he's tired of feeling bad and tired of being patient! But we are trying to remind him every minute that we are moving in the right direction and he will be better soon. Once again we have nurses fighting over him because they love him and want to see him get better! The staff here is so amazing as I've mentioned before.

I'll write again soon with hopefully more tiny steps in the right direction. Thanks so much for keeping up the prayers!

It was a rough weekend for us, but Sunday afternoon things got calmer. Today Mac had an MRI to see what was going on in his brain. We'd heard grumblings all weekend about PRES syndrome, which is what the MRI confirmed. This basically means the seizure happened because of the steroid, the cyclosporin, and his elevated blood pressure. So now he is on a BP medicine through his IV as well as an anti seizure medicine. They are taking him off the cyclosporin for now. His demeanor has changed - he's very irritable and sensitive to light and touch. However, the R in PRES stands for reversible, so it will take time but the real Mac will reappear. I assume we'll be in ICU for a while now. They are doing another EEG tomorrow just to make sure he is not having anymore sub clinical seizures and will do another MRI next week. There are still other issues, but they are being maintained and have taken a back seat to his brain - his very funny, very smart 11 year old brain.

Mo and I are hanging in there. The nurses in ICU make sure you take care of yourself while they help take care of your child. The doctors here persevere no matter where the path takes them. The deacon and priest from St. Mary’s have been a tremendous source of strength. But, our long road just got longer which means your prayers just got even more needed. Thank you as always for thinking of us, praying for us and checking in.

It's Friday night and we are still in the ICU. We thought we were taking a turn for the better Thursday. Then this morning Mac had a seizure while Mo & I were in the room with him. This led to a CT scan (which showed no bleeding in the brain) and he's been on an EEG all day. It showed two more little seizures even though it wasn't visible to us. He also got the fluid drained from his abdomen to see if that would help his blood pressure go down. He has been very uncomfortable and drowsy all afternoon. So here we are again, a huge puzzle to the doctors and running another series of tests over the weekend and giving him more medications. The neurologist thinks it is related to his blood pressure, but of course, each specialist has his own take on the matter. Once again we are exhausted and scared. Ana and I brought Mac in 3 weeks ago today for a pain in his side. I never envisioned I'd still be here with him. Please continue to light the candles, say the prayers and think positive. Mo and I are in agreement that it is your prayers that are getting us through this.

Yesterday afternoon Mac had his chest and abdomen drained of fluid. They left a drainage tube in his chest so it can continue to drain today. Unfortunately, the abdomen is filling up again. His breathing is easier because his lungs are clear. Today they are waiting to see what happens. They may have to drain his abdomen again tomorrow. The GI doctor thinks alot of this can be explained by C Diff. We're still waiting for results from the nephrologist because it could be kidney issues. He is still having fever. The early results of the fluid studies do not show bacteria. It's good to keep ruling things out, but it's also frustrating to not know what's going on. Please pray that God guides the doctors through this puzzle to bring Mac comfort, relief and healing. More later...

We are in the ICU (they call it a step down room. I guess there are some rooms that are for worse cases; we're just sort of bad.) Mac is on more monitors and they are trying to help with his breathing. He's still running fever. The CT scan showed tons of fluid build up in his abdomen and between his lung and chest wall. They gave him more lasix over night to start getting rid of some. (Mo was on the night shift last night and they were up most of the time. But in this game, being nocturnal comes with the program.) This afternoon he's going to get the rest of it drained by an interventional radiologist. He will be sedated. They will study the fluid - that may contain some answers. This will also relieve a lot of his discomfort and he will hopefully feel some relief with his breathing. They didn't see any major fungus issue which is good. The other organs are still having various issues, but they are maintaining the balance with IV fluids of all combinations as needed. Like I said earlier, it's very complicated and we just have to trust the doctors here.

I guess my gut feeling is that alot of these things will eventually correct themselves if the real problem is taken out of the equation. The ICU doctor for this week is from Baton Rouge (she grew up in NO) and works here 1 week/month. She recognized Mac's Lafreniere soccer tshirt right away.

Please keep praying as I know you all are. Will update again soon.

Today we are being moved to the ICU for closer monitoring of Mac's situation. They are doing a CT scan this morning and looking for more clues. He's continuing to get fever and his breathing is labored. We will update when we get results.

Thanks to everyone for the prayers and messages. We are still battling something. With all the medicine Mac is on, he's still getting fever and this has the doctors puzzled. Are they missing something or is it just that the medicines need more time to do the job? Unfortunately it's a tricky game b/c different organs need different things and there's a fine line to keep the balance. It's all very complicated and we're trying to keep a handle on it but the bottom line is we have to trust the doctors here. Mac is an incredible trooper. Our nurse today has been here for 19 years and said 'not too many things amaze me, but your son amazes me'. He's feeling miserable and we're just ready for this to subside so he can feel some relief.

Please keep praying. We need to find the source of the fever so it will go away! And then we can begin to recover from this.

We’ve been hesitant to update the blog because we keep thinking each day Mac’s going to get better so we can write something positive. Unfortunately, these past few days haven’t really been positive. We came in 11 days ago for a pain in his side which they said was probably just constipation. He quickly developed hematuria and fever. Now we have an infection in his gall bladder and possible issues with his liver and kidneys. He's retaining fluid. He also has pneumonia in his right lung. He’s still positive for C Diff. He’s on 5 different antibiotics along with the rest of his medicine. Right now they’re throwing all the antibiotics at him to wipe out anything they suspect. It’s been quite a rollercoaster and we are scared and exhausted. He is still such an amazing patient - when he’s miserable he’s just really quiet. The nurses have told us many times how great a kid he is and how they all want to get him back home soon.

Annie is with us and since today is her birthday, the nurses gave her balloons and a tshirt and necklace, and Katherine (the child life specialist) took her to do a craft while we talked to the doctor. She’s been a nice distraction to have around.

The deacon from St. Mary’s Catholic Church nearby came to see us tonight and spent some time with us. It’s hard to understand and watch a child suffering. So tonight I’m asking again for more prayers for Mac to get through this big hurdle. We are very thankful to you all for taking time out of your busy schedules to think of us.

It’s Saturday night and it’s been great for us to all be to together. On Thursday when Peter, Annie & Mo got to St. Jude, I was sitting in the main lobby reading and waiting for them so Mo let Peter and Annie out of the van. They ended up sneaking up on me and surprising me, causing quite the commotion downstairs! The security guard ran to get them toys and coloring books and they ran up to Mac’s room to see him and Ana who stayed one more night with me!

We’ve made some more progress with Mac. It’s been a roller coaster because it seems there were always 2 different problems going on. Something viral definitely played a part, but the last result is that Mac has contracted C-Diff which is a bacteria in his intestines (we actually all have it present in our intestines, it's just when it gets out of control that it's a problem.) It’s very common in hospitals and nursing homes because people with low immune systems are very susceptible, as well as people who are on antibiotics. It really got a handle on him and his recovery will be one day at a time. He’s eating a little, but not because he has an appetite. He’s still feeling bad, but his fever seems to be subsiding. It was crazy this week as we’ve gone through several different possibilities and had to rule each of them out.

It has been good for him having Peter here to play games with and Annie to entertain him and be his nurse. And P&A have had a good time because if you aren’t actually sick, St. Jude can be a fun place. They have met our favorite nurses, visited the the gift shop several times and they love the cafeteria (or food court as Peter calls it - it really is nice.) I told them they couldn't leave Memphis until Mac gets discharged and they agreed - we're all in this together. Peter wants his buddy to feel better and Annie just hates to see him sick!

Thanks for checking in with us. Now we need double the prayers - first for recovery from this setback and second for recovery from the big thing!! But I know there are lots of you out there and we'll be heard if we just pray enough! I hope you are all having a good weekend.

It's Wednesday afternoon and we're still in the hospital. When we're inpatient, the days feel like weeks! We got here Friday in the middle of the night b/c Mac was having pain in his side and a fever. Because the medicine he's taking is so hard on kidneys, we were suspicious of something in that area. He progressed to having other symptoms and lots of tests were run. The current thought of the day is that he has a viral infection. But when your immune system is being suppressed, it's hard to fight things. I think we have turned a corner and are taking small steps toward recovery. He's eaten a tiny bit for the first time since Friday. He's still exhausted and feels uncomfortable, but he's not in pain. And he's still running a low grade fever which will hopefully go away soon! This has been a huge reality check for me; as much as we can't wait to get home, it's also scary to expose him to the real world. What other people can fight off with a little tylenol lands us in the hospital for a week. But I feel confident our team here won't let us go until they know he can handle it.

We are looking forward to having the rest of the crew come see us this weekend. Because of our situation here, they are planning on staying with Gail and visiting as much as we can during the day. My sister Ana is going back home for now, I couldn't have gotten through these last weeks without her!

This week has been a bit of a disappointing set back. But I'm sure he'll bounce back as only an 11 year old boy can and get back on task of getting his bone marrow jump started!! Please continue to pray as I know you all are!!! Thanks as always!