Saturday, July 30, 2011

We Made It Through The Night

Aaron is very much on the fence post deciding whether or not he wants to stay with us or return home. We were told yesterday or was it Thursday (honestly I can't remember the days) that the next 48 to 72 hours were critical and we would soon find out what side Aaron wanted to be on. Yesterday afternoon I was asked to give them orders on what life saving measures we were willing to do for Aaron and when we would allow him to go. That was a very difficult conversation and one I obviously need to make with Ronny. We had talked about it vaguely at breakfast yesterday but I didn't expect it to come into play that afternoon. The nurses scheduled one of the parent rooms for us during these next crucial hours so we will not have to leave the hospital. They have pretty much allowed us to stay at all times and come and go as we feel comfortable.

Yesterday Aaron had another echo done and the cardio team came over to check on him without being called over (I think my message was taken seriously this time!). The echo showed good heart function, bi-directional flow through his PDA, and fluid around his heart. They did not feel the fluid around his heart was causing any adverse function to the heart. Two days in a row the echos showed promise that his heart was working. The problem now is that as they are pumping him full of fluid to get his blood pressure up the fluid is not staying in the vascular system, its what they call third spacing, staying in the tissues where its not helping his blood pressure and not being able to be peed out so he body is swelling. That fluid is also making it hard for him to breathe and is very painful.

When I arrived at the hospital I was asked to join a meeting about something that happened overnight. I will explain more about this at a later time. After that was over we held another mini-round session with the night Attendings. Another drug was added and the plan was to try to wean him off his dopamine. We were told his blood pressures would be erratic but that we needed to get his heart rate down. Aaron seemed to be doing really well with the new drug and the weaning process.

In the early hours this morning we felt like Aaron was doing well enough that we could try to get an hour or two of sleep. I came to check on him about 5:45 and he was doing well so I told his nurse that if nothing happens to just come and wake me up when she is getting ready to leave so that I could say goodbye. About an hour later I woke up feeling as if I was having a panic attack and couldn't seem to get my heart under control. I went to check on Aaron and knew something had just happened. Apparently Aaron was having the same panic attack and his heart rate shot up to 258 and just as I asked what was going on the masses arrived with the crash cart. I whispered to one of the RTs to go get Ronny. After she left the Attending arrived and very excitedly looked at me and said, "Don't worry, I expected this, this is a good thing!" I pretty much thought he was off his rocker but Aaron quickly stabilized and the new Attending who also had just arrived and the "excited" one conferred and decided it was now time to start weaning another drug. So two of the drugs Aaron was maxed out on yesterday are half of what they were before and coming down. His bp is maintaining a mean of between 35-45 with no shunting issues, his heart rate is slowly coming down and is averaging between 175-190, and his O's are anywhere from 29-35. 29! We haven't seen that number in a month! He is not out of the woods yet and we really need to get this fluid level under control but he is slowly improving. Ronny and I plan to stay at the hospital until he is out of the woods and we feel comfortable not being there all 24hrs a day.

In rounds today we were discussing possible reasons why this has occurred. The cardio team is positive its an infection or fungus, yet we can't seem to get any cultures to grow nor are his white cells or crp elevated. The Attending on today feels as if it may be an inflammatory response to something we haven't found yet. This makes sense to me as the reason Aaron was so severely IUGR was because I had an inflammatory condition that caused problems with the placenta. Today's Attending happens to be doing research on inflammatory conditions and abnormal immune responses in NICU babies. (Hmmm, how ironic!) After rounds the n.p. stayed behind to talk with us and his nurse. Ronny and I were commenting on how this seems to be a pattern with Aaron. He goes to the very edge, to the point the doctors are saying we've come to the end and then all of a sudden he has an "spontaneous resolution". His n.p. laughed and said today was a great day to have a "spontaneous resolution"! She looked at us and asked if we could order one of those up from the Lord. We told her we would get right on it! So friends and family, that is what we need today. Pray for a spontaneous resolution! :)

Before I sign off I just want to thank you all again for, your notes, packages, meals that have been brought in, taking and picking our big kids up at a moments notice, your kind words, and hugs. Mostly I am thankful for your prayers. Those are truly what matter most to us, for those prayers are really what has taken us so far. I have no doubt the Lord is hearing and answering our prayers and has blessed our family on behalf of you.


Cindy Lou said...
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Cindy Lou said...

Thank you for this post. I loved a comment on the last post about the NICU being a scared place, I believe that. Even the NICU's that are not visited by mostly LDS are. I believe these small angels are each watched over and comforted by an unseen source. Each of these miracles have a special purpose and touch other lives in ways "we" may never know. I know how this experience has and I'm sure will continue to touch me. I am even more grateful for our family's NICU miracle and realize even more how blest we were and are.
Know that Aaron and your family are never far away in my thoughts and prayers.