Monday, August 29, 2011

Day 2-Discharged from the hospital

Well today was an eventful day for us. Essentially we could have stayed in the hospital until Tuesday, but our situation is different. If I had to go home, which is an hour away, I would have definitely stayed admitted until Tuesday. We, however, have decided to stay in the city to be close to Parker. Ochsner's hospital actually has a hotel connected to it so it is extremely convenient. Although it will get expensive, we have decided this is the best option for us. No matter what the cost you could not pry us away from our son at this time. There is no way I could be an hour away from him! So when we told them that we would be staying here at the hotel, they told us we had the option to be discharged today so we could come here, get settled in, and get a little more rest. Let's be honest, the nurses coming in and out at all hours of the night, the hard sofa Jason was sleeping on, and the tiny room to move around in was not "comfortable". Plus, it's probably cheaper for us in the long run to be admitted for 2 days instead of 4. So around lunch time we packed up the tons of stuff we somehow accumulated and moved into our temporary home.

Parker's update for today:

Around 3:30 a.m. I couldn't take it any longer. I really wanted to go up and see Parker, but Jason was sound asleep and I'm still limited on mobility; therefore, I decided to call Parker's nurse instead. It is the next best thing after all. She told me that his blood pressure average has been staying in the mid 50's (88/40 overnight), which is a really good improvement for him. Also, they have started doing his blood gases (that determine lung function) every 12 hours instead of 6 since they have been so good. From now on they would be running all of his labs at 5 a.m. every morning unless something changes. This is a good thing for Parker. The less they have to use his blood line, the less chance for infection. Since I had heard good news I was able to finally get some rest. Actually we slept in until almost 10, so that was the most rest I have gotten in a few days. 

When I woke up and realized how late it was, I immediately called up and talked to his nurse again. I knew that his labs had been run and I am too nosy not to know what is going on. His day nurse is amazing! On Parker's first day she signed up to be his primary nurse. This means that any time she is here, she is assigned to him and he is her only patient. He is being spoiled already. He is a nurse hog! :) But we like it that way. This is what she told me:
1. The platelet transfusion from yesterday was a success. This was my main concern all night. Yesterday, before transfusion, his platelets were 36,000 and this morning they were 104,000. They have over doubled! I could have jumped up and down on the bed, but lets be honest, at this point I have trouble sitting up in the bed. So I definitely can't manage anything more, but you get the gist of how excited I was. 
2. His sodium and potassium were relatively the same. His sodium still only went up 1 or 2 points, but Dr. Lunyong was happy with these results.
3. He was taken off of the bili light because his bilirubin went down to 10. So no more beach time for Parker and we hope it stays this way. 
4. His BUN and creatinine were slightly increased, but this is something we expected to happen. His BUN is still within range and creatinine is a little elevated but Dr. Lunyong is happy with where they are. Like he said, we expect a small gradual increase. We just do not want a rapid jump. 
5. Some of his liver enzymes have come down. YAY! 
6. The amount of pressure the vent is giving him with each breath has decreased. He is initiating each breath on his own. The vent is just giving him a little extra support. 

 I love waking up in the morning to such good news. All of this was enough to make me a happy woman, but the good news just kept on coming. 

Dr. Lunyong had today off. He was not supposed to be here at all, but being the great doctor that he is, he came in today just to see Parker. How lucky are we? So, before I hung up with Parker's nurse she suggested that we go up there as soon as we could. Dr. Lunyong told us that he is happy with Parker’s progress. Oh, and they saved the best news for us until we were up in the NICU. He had a very small amount of urine in his catheter line this morning. It wasn't enough to be measurable, but it was a happy surprise for everyone. It is a small glimmer of hope. They didn't expect anything to come out. I've never been so happy to see pee! :) Also, his lungs are stable enough right now for him to start making a plan of action. Dr. Lunyong has consulted with both nephrologists (Dr. Aviles at Children's and Dr. Cunningham- who is on vacation and still monitoring Parker’s progress via computer). He also consulted with the Pediatric surgeon. We now have a couple of options BEFORE we would face kidney removal. At this point I felt like the news was so good I needed to knock on wood or pinch myself. On Monday they are going to do an ultrasound of his belly. They are looking to see if there is any fluid around the kidneys and bladder that could be causing added pressure and essentially making it harder for these organs to work. If there is they will put in a catheter in his belly to drain this fluid and see how he progresses from there. If there is no fluid, then we can start very small amounts of dialysis when the time comes that he needs it. This was not an option before because of his unstable lungs. So all very good news at this point. Dr. Lunyong said,  "As of now we are in the "holding stage". There are many different scenarios that could happen, but we have to wait and see and we will know much more tomorrow".  

Later on, when I went up there to drop off milk, he was fussing over his vent again so I was able to hold his hands and calm him down. This is not something we get to do often so I was elated. Then, out of no where, he opened both eyes for me for the first time! My heart melted when I saw this. Jason was not with me and did not get to see it, but he will soon. :(

I have had a smile across my face almost all day long!

I was also able to leave the hospital this afternoon. I told Jason I felt like I was breaking out of jail. I haven't seen the sunlight in a few days. We picked up my prescriptions at Walgreens and went to dinner to celebrate all of today's good news.

All of our prayers are working so please, please continue them. Sorry I do not have any new pictures tonight, but hopefully tomorrow.  Thanks to everyone for everything. Your continued support is amazing and is helping us through this. We love you all! 

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