Thursday was a very special day for Remy. Though she does not know it yet, it was a day that Mary and I have been awaiting and envisioning since before Remy was even born. My Grandma, ‘our’ Grandma, Remy’s Great Grandma Theresia Dombrofski, got to meet her great-granddaughter and it was a healing experience for all of us. It was a healing of the soul. It was just one of those moments that you cannot really quantify in numbers or in theory or as to what kind of effect it can have; it just does! Standing tall and proud at 91 years old it was instantaneous joy. She showed concern and worry but did not cry or wince or display discomfort from what she had witnessed. This was a monumental moment. My grandma, who traveled from Czechoslovakia at the age of 16, due to the onset of WWII and Nazi Germany, who left behind several of her 9 brothers and sisters, who never again saw her mother and much of her family, stood over my child. Without her great sacrifice and her great contributions to our life neither me nor Remy would be here today.
Overall, Monday through Thursday was a stretch of progress for Remy. Everyday she improved; her edema (unhealthy water weight) decreased, her collapsed left lung got better, her blood pressure, heart rate and oxygen levels, all either improved or remained steady. We were excited for the next step and were hopeful she would soon be moved to SIPAP! We said goodbye to my parents and Grams. My Grandma told the nurses she was so in love and wanted to take Remy home with her. After they left Remy again began to seize. This would go on for over 24 hours.
Her seizures were again very intense. They took a while to control. Her meds were increased to heavy dosages and she was hit with everything. This went on until 9 pm on Friday evening. Sparing myself from having to relive the experience by writing in detail, I will just say that the second half of the day was not a good day for Mary or I and most of all, not for our little angel! Saturday came and it was yet another rough day. Remy was barely peeing again. Her edema had increased. Her blood pressure was low and she had to be put back on Dopamine. The Dopamine was also quickly increased. Again came fear of a possible infection, so she was put on antibiotics once again, Vancomycin and Zosen. Our baby has lived more days on antibiotics than without. Her leg was starting to bruise near her picc line in her leg, so it had to be moved to her arm. Thankfully, for the second half of the day and throughout the evening Remy started to improve once again. Through all of this, for the most part, her respiratory functions were steady and stable, though her left lung was still experiencing collapses it seems every other day.
Sunday morning we arrived to an entire staff gathered around Remy. For a moment we freaked out in fear. It turned out to be a very good thing. Despite the fact that Remy’s left lung had been collapsing and expanding over the past few days, Remy was extubated and re-intubated and moved onto a conventional breathing machine. It wasnt the SIPAP we were hoping for but it didn’t matter. This was the right step and it meant improvement. Rather then pumping several puffs of air in and out (about 400 a minute), she is now being given air at her normal breathing rate, and when she is able to breathe on her own, the machine recognizes that and her breathing assistance is decreased. This was a tremendous step for Remy. We had been waiting for this and hoping for this for so long now. One of the greatest rewards was that Mary was finally able to hold Remy after waiting for 36 days. It was not skin to skin like kangarooing, but the joy and feeling that it brought to Mary was priceless and for Remy we know it is important that we hold her as often as we can. Sunday was a great, great day!!
Sunday night we were excited to find out that Remy had peed 190 cc’s in one sitting. Are you kidding?! I mean she doubled her 10 hour record in one diaper in one diaper. This was fantastic and has continued through Monday with record-breaking urine counts. My god, I never thought I would even care about something like that, yet alone write about it! Backtracking to Sunday evening on the opposite spectrum Remy had developed a fever of 102.1; the highest temperature she has ever been. This was needless to say a big scare. The fever would decrease throughout the night her temperature was back to normal by morning.
Back to the respiratory situation. Now that Remy is on conventional ventilation, she will be able to get a brain scan, better known as an MRI. This should happen any day now. I have been out in the field the past few days and unable to visit, but I cannot wait to be back in the hospital tomorrow. We are very anxious to get the MRI results and see if there is anything to be found. At the same time we are extremely scared! We have been told by more than one doctor that there could be terrible results which may be irreversible, and we have been told that she may be absolutely fine. As always everything surrounding our and Remy’s life becomes a double-edged sword. We have strong faith that our Remy will be okay. Through all of this we have seen too much from her, that it makes us believe she will be okay. Until we have the results from this long-awaited MRI, our heart rates will be increased and our minds will be focused on one thing. To her I say, “Please sweet little lady of mine, show me that you are okay and stronger than anyone could ever imagine, that you are healthy and will get healthier and I promise I will continue to do everything in my power to give you the best life I can give you.”
Below pics of Mary finally getting to hold our Remy once again after a 36 day wait and Grams with Remy.