A pretty good day and a good laugh

Little Mav has had a pretty good day today.  They are still working on weaning his epi.  He got his 2 right arterial lines out today as well as his pacer wires.  They are giving him a trial of pressure support on his vent and hopefully he'll be able to come off the vent tomorrow.  His blood cultures are negative so far, so hopefully this infection is limited to his incision.  These computers have been busy, so I haven't been able to post when I would like.  Hopefully tomorrow won't be quite as busy - I'll post more then.  jc

PS  Ok, Dorraine, I hope you don't kill me, but I got a good laugh from your story.  Hope you don't mind that I posted it...

Two more weeks... :(

Little Mav has been doing well since his closure, but we got some disappointing news this evening. When they closed his chest they sent a culture and it came back positive for some type of fungus. They haven't isolated the type yet, but he'll have to be on ampho-b (a strong anti-fungal given IV) for 14 days... So, we'll still be here for awhile. Hopefully he'll stay stable and won't get septic with this - keep that in your prayers. His abdominal drain was removed today and they're removing his two right atrial lines tomorrow morning. If he tolerates the removal of the atrial lines without much bleeding they'll remove the mediastinal tube tomorrow evening. They've been able to turn his ventilator rate down to 12 breaths per minute, and they're weaning his epi. If he tolerates it, his epi should be off tomorrow morning. More tomorrow. jc

He's closed!

Dr. M came in this morning and said he was going to close Mav today. He finished up at about 10:45am, and he tolerated it well. He's been out of it today due to the meds they gave him this morning, but he's starting to wake up this evening. He's looking more and more like himself everyday. Now we should be able to get him off the vent in a few days and start getting some of his tubes and wires removed. We are ready to hold this baby!
Another bright spot in my day - my friends Cindy, Mary and Michelle came down from OKC today and saw little Mav and we went to lunch and browsed around Central Market for awhile. It's nice to get out and laugh a little. Thanks for coming (we missed you, Donna!).
Really, there's not much else new here. He's still on his epi drip - they had to go up just a little after they closed his chest, but they didn't have to add any other heart meds! He's on a lasix drip, antibiotics, TPN and lipids. He still has 2 chest tubes, one mediastinal tube and one abdominal drain. His pacer wires are still in place - I think they will be for a few days, and he still has his RA line and his art line. I'll let you all know as we start losing things. We're hoping this process moves along quickly. We miss the kiddos and are ready to get home. Thanks for all your thoughts and prayers - we're beginning to see the light at the end of the tunnel! jc

Still open

Little Mav isn't quite ready to have his chest closed. Dr. M is coming in the morning to see if tomorrow is the day - if not, it will probably be Monday. We are close. Once he gets his chest closed things should start moving along a little more quickly. He started on feedings yesterday and was tolerating them well. Today the went up to 6mls/hr (a little over one teaspoon an hour - it's on a pump going continuously) and his abdominal drainage started getting cloudy - then his chest tube drainage started getting cloudy. It's called chyle and comes from his lymphatic system and basically it means he's not tolerating the fat in the breast milk... So, they had to put him on a special formula called portagen that has a different type of fat in it. He'll have to be on this for awhile, but they tell me to keep pumping - he'll eventually be able to go back to breast milk. Other than that it was a pretty uneventful day - YEA! Dr. M said we are at a point where Greg and I can get out of the hospital together, so we went to Target to pick up a few things and went to lunch. It was nice. The weather was beautiful. Have a good rest of the weekend. We appreciate all of you - jc

Blue eyes

Mav has had a good day, despite not getting his chest closed.  I told Dr. M that we are not pushing to get it closed.  I want it done at the right time and don't want them to have to re-open it if it's done too soon.  He's actually two weeks old today - it's hard to believe.  All the days kind of run together.  Last night and tonight he woke up around 8:00pm and stayed awake for about 45 minutes.  He's very content during this time and just looks around with his big blue eyes and listens to whomever is talking.  He's looking much smaller to me - his head is even starting to shrink.  Hopefully in the next few days he'll be back close to his birthweight.  Love you all - jc

No closure, yet

Well, they want to wait a little longer to close his chest. Hopefully by Monday. They are going to start some feedings today via a tube that goes through his nose to his tummy. He is still having good output, just needs to have more. Thanks for all your comments - I enjoy reading them. More later today - jc

Steady progress

Mav has had a good day. He had some issues with his heart rate this morning, but they replaced some electrolytes and he hasn't had a problem since. He's continuing to have a lot of urine output. They are just waiting to see how he looks tomorrow morning to see if he's ready to have his chest closed or not. I asked Dr. M if the 24-48 hours after chest closure are another critical time (like after surgery and when he came off ecmo) and he said, "yes, but not as bad." Hopefully, if they close him tomorrow, things will go smoothly this time. Keep him in your prayers.

PS Thanks for your funny story, it made me laugh, Sherry - yes, I remember you.
PSS I still haven't seen the nurses that I gave the leftovers to. I think one of them is back tomorrow...

More tomorrow - jc