So many things have happened since my last post. I apologize for not updating everyone much sooner but this has all been very overwhelming. She is doing much better than she was two weeks ago. While on ECMO she nearly tripled in size and had tons of fluid retention. Her kidneys were still functioning but not enough to remove all of the fluid. So we introduced a new machine to the mix called a CVVH (Continuous Veno-Venous Hemofiltration). This machine was hooked up to the ECMO circuit on the venous side (which is the blood leaving her body to be oxygenated by the ECMO machine). So before the blood would go to be oxygenated it was re-routed through the CVVH for ultra filtration (removing fluids from the blood). We were able to set how much or how little fluid was removed. In one day the machine removed 750cc of fluid. This is more than Juliana weighed at birth. It was completely amazing to see your little girl go from this huge baby that was almost unrecognizable to this shrunken baby that was even smaller than when we brought her into the hospital. Soon after all the excess fluid was removed her left lung opened up and then shortly after that her right lung began to open up as well.
Since she had lost so much fluid the endotracheal tube placed to assist in ventilation now had a huge leak. You could actually hear all the air escaping and resonating in her nose and mouth. So now we were faced with the dilemma of an inadequate tube for ventilation and Juliana was in a position that made it nearly impossible to replace the tube safely and there was no way to move her into a position that would work without the risk of the ECMO cannula becoming displaced. The only other option left was to do a bronchialoscopy to safely replace the tube. So the new larger size tube is threaded onto a long thin scope (camera) and sent down alongside of the tube already in place. This is the first time I actually saw the inside of Juliana's lungs. Overall she has a great airway and vocal chords. Her right upper lobe has been problematic and the pulmonologist was able to suction out a nice chunk of mucus. The tube was replaced and a trial run of ECMO was done later that night.
On Tuesday May 5th she was scheduled to come off ECMO and since the trial run went smoothly the night before everything went according to the plan. She had a great first night of ECMO. Her blood gases were amazing and everyone thought she would be extubated the next day. Some changes were made to her ventilator settings in an effort to wean her off for extubation. Her blood gases weren't looking so good any more and she started to require more oxygen. Another chest x-ray confirmed that there was some atelectasis (collapse) on the right side again. Yesterday she had another bronchialoscopy done to try and reopen the right upper lobe. Her pulmonolgist was able to remove some mucus from that area and it seemed pretty open but the x-ray following the bronchialoscopy still showed that the lobe had not opened up yet. The x-ray however can be deceiving because in order to clean out the lobe, saline is sent down the tube to loosen things up for suctioning. So it is still possible that the lobe opened up but we are just not able to see it yet.
She is back on her formula again after two weeks of an empty belly. We started her off very slow with only 2cc per hour and gradually increased to 6cc as of yesterday. Her belly was feeling a bit firm to me which really concerns me. I asked to the doctors to hold at 6 to see what she does before moving on to 8. She has some but not a lot of bowel sounds so I don't want to overwhelm her with too much too soon. She has gone through a lot in the last two weeks and not all of her bodily functions are up to par yet.
She is definitely starting to feel better. I was able to get a little smile out of her yesterday but it was the kind that only I can see through her eyes. She is very perceptive and extremely expressive in her eyes especially now that her sedation is being weaned. She has a little more awake time than before but still spends the bulk of her day sleeping. While on ECMO and the CVVH she was on extreme amounts of pain meds. To avoid withdrawal symptoms she is slowly being weaned to a dose that is more suitable for her weight.
I have lots more to talk about but I will save that for later. Thanks again to everyone for all the prayers and support. It's great to know how much people really love and care for Juliana.