Saturday was my 34th birthday and my original wish for my birthday was to get to hold Max again. Unfortunately that wish didn't come true but I did get to spend time with all three of my kids which came in a close second. My mom bravely flew up with Molly and Luke for the weekend after we were informed that we would not be heading home with Max anytime soon. This weekend has been such a blessing and a much needed distraction. It was wonderful to step outside the walls of the hospital and to just be mom and dad for awhile. Molly seemed to have missed us a lot and has been showering us with lots of snuggles and kisses. Luke on the other hand seems to have had the opposite reaction and wants nothing to do with us after leaving him for the last two weeks. As hard it is on the whole family I know someday he will understand and realize why mom and dad disappeared for awhile.
As for Max things have been up and down. He has good hours and bad hours. The doctors just can't seem to figure out Max's heart and oxygen saturation levels. The plan is to go into the catheterization lab on either Monday or Tuesday so they can directly measure blood flow and pressure differentials in different parts of his heart. Although this is not a major surgery it still has risks and we hope that this procedure will give the doctors the answers they have been looking for. There has also been talk of doing a balloon procedure during the catheterization pocedure to create a larger atrial septum defect (ASD or hole between the top two chambers of the heart). The doctors hope that a larger ASD will allow for more blue (deoxygenated) and red (oxygenated) blood to mix so that more oxygenated blood perfuses to the rest of his body.
We hope and pray that the cath procedure gives the doctors answers and allows Max to move forward with his recovery. Once he is stabilized then they can try to extubate again. We will probably be in the hospital at least another week if not longer. I'm not going to lie that sometimes I just want to pick Max up and run out of here.
I have also contacted Dr. Emani (cardio thoracic surgeon) at Boston Children's for his opinion on Max's long term surgical plan. At this point in time we have to get Max stable here at Stanford but Brad and I want to make sure multiple surgeons are on the same page about what is best for Max. Monday we will begin the process of getting the teams at Boston all of the relevant studies of Max's heart.
Please keep mighty Max in your prayers. We hope to have more answers and a better plan to get Max out of here over the next couple of days. We are hanging in there... Some days just barely... But we are trying to keep focused on being Max's advocates and getting him healthy and home!
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