Continuing on from where the last post left off, it was the following morning (Wednesday). Dr. Beck was now on his days off and Gracie's new intensive care doctor was Dr. B************ (who we called Dr. Jeff because it was much easier). After the morning shift change and Gracie's assessment was completed, I went in to the PICU to stay with Gracie and got to meet Dr. Jeff. He seemed very kind, but I remember standing there beside Gracie's dad and being told, "your daughter has a significant chance of not making it through this". I remember kissing Gracie's hand and walking out of her room and in to the clean-up room. Gracie's dad and I were very upset at this news, and I tried so hard not to believe those words. My baby girl HAD to come home with me.
I think Gracie must have heard those words, because from then on she fought and fought so hard; I think she was determined to win her fight and get better. Most days were up and down, she would improve in some way, but then take 2 steps back; it was like that alot.
My parents came to visit us in the PICU on the morning of Halloween; I asked them to stop at our house and bright Gracie's halloween costume back with them. So I got to dress Gracie up in her bumbleebee costume, well not the dress part of it, but the antennas and her want; she looked beautiful as a pretty yellow bumblebee. She was extremely puffy because of all the fluids being pumped in to her; at that point she had 14 pumps of medication and fluid being carried in to her through the IV lines.
On Friday the 6th (November), I was getting ready to head back to Nanaimo until Sunday. Dr. Jeff decided to do a CT scan to look at her abdomen because he was concerned about the fluid building up and her edemic condition. I followed her crib down to the first floor where they took her to do the scan. It seemed to take forever as I stood waiting outside the large double doors for Gracie's crib to be wheeled back out. This was Gracie's first time out of the ICU in 10 days. After the results came back, Dr. Jeff said that there were some pockets of fluid and that they may need to be drained. Gracie was on diuretics to help drain the fluid, but it wasn't catching up enough for her body.
It took 3 nurses to bring Gracie to the Imaging Department - Two to push her crib, and one to make sure all of her pumps were moving along smoothly with it.
I left the hospital at 3pm when Gracie's dad came to stay with her, and headed back to Nanaimo. At 10pm, I received a call from her dad. He told me that the surgeon had come to see Gracie about the fluid pockets and that he was worried that he if he made the incision in to her abdomen, that he would not be able to close it up because of the swelling. I remember feeling like I needed to get back to Victoria as soon as I could; I did not want to leave my little girl there like that and I was scared to death. He assured me not to worry and that he would call asap if anything changed. I don't remember sleeping much that night. Possibly a surgery could take place the next day; I would wait for her dad to contact me.
I got back to Victoria on Sunday morning (the 8th) at around 9:00am, just as we got the news that Gracie would be taken to the OR for her sugery. Not a nice way to come back to the hospital and hear that news. They prepped Gracie and got her ready for the trek to the OR. I tried to give her a kiss on her way out, but I was too short to reach her up the crib; I followed her to the elevators and then she was gone. The surgery was to take about 1.5 hours; my parents were so worried that they decided to drive up and stay with me. While we were waiting for news, I went up to the PICU to ask the nurses if they had heard anything. They told me that they didn't really know anything, except that Dr. Jeff called up to them asking for a camera because "something" was interesting. We waited and waited, for what seemed to be eternity. Finally Gracie's crib was brought back up to the PICU. Dr. Jeff explained to us that what they found was a necrotized piece of the bowel, meaning that about a 4-5" piece of her bowel had died inside of her. They removed it, drained some fluid pockets, and attempted to stitch the incision back up. Dr. Hayashi (the surgeon) had to put a vacuum seal in her abdomen because he could not close it up; Gracie would have to return to the OR in a few days to have the seal changed, or her abdomen closed. Gracie had a colostomy bag now because the bowel was split in to two temporarily; it would be resected at a later time when she was healthy again.
The first picture is the nurses prepping Gracie to take her down to the OR; the second is recovery back in the PICU afterwards.
We had some issues with Gracie later that evening. Her stats were very unstable, and her heartrate was jumping between 195-205. Extremely high for a 3 year girl whose heartrate should be around 110-115 normally. I got a nice text message from a friend, and then a few more friends, that Gracie was all over the news. I ran to the parent room to see, panicking, because I was trying to avoid the press putting Gracie's story on the news. Sure enough, there was a short story and some pictures of her that were taken from a facebook group that my friend organized for her (3,000 members of support and encouragement for her fight). I was pissed off. Pissed off that they would go behind our backs and do this, especially because I had told them no. It pissed me off that I was now worrying about the press instead of worrying about my little girl laying in her room with an excessively high heartrate.
Gracie went back in to the OR three days later to have the vacuum seal removed, and Dr. Hayashi was able to close up her abdomen. Her post-op was scary; I remember sitting there looking through the glass of her room and seeing her heartrate drop to the 40-50s and her stats were very unstable. Dr. Jeff was called to come in and check on her. It was about two hours before she was stable again, and she seemed to do ok. The incision was pulled together from the middle, kinda like a diamond shape, and brought together and stapled. The ends were left open to heal from the inside out. It was scary looking; Gracie would have one hell of a scar eventually. I only saw it the one time, when it was being cleaned by her nurses.
Post-Op #2 - My brave brave little girl
After the surgery, Gracie seemed to keep moving upwards. Her doctors were thrilled with her progress. She was taken off of most of her medications, although she was still kept asleep and ofcoarse kept on the pain medications because of the surgeries. Dr. Beck left for Israel, so it was mostly Dr. Jeff looking after Gracie at the time. Three days after the surgery, the nurses began trials of turning the ventilator real low so that Gracie could try breathing more on her own; they also started lowering the paralytic to begin waking her up. Dr. Jeff's estimate was about another 6 weeks for Gracie to recover; 3 weeks of trials with the ventilator and about 2-3 weeks of recovery in the regular pediatric ward (and may even get to transfer back to Nanaimo's pediatric ward that we were comfortable with). Although a lot of things cleared up after the bowel removal, Gracie did develop a fever that wouldn't cool down; Dr. Jeff tried to treat it with a very high antibiotic.
Usually when Gracie developed a fever, which was often in the ICU, the nurses treated it with tylenol and the bear hugger blanket. The blanket was a big puffy thing that had two settings, warm and cool; they would be used interchangably depending on the patient's temperature. It looked really comfortable, and usually it helped quite a bit.
I went back home to Nanaimo on Saturday (the 14th) and returned to Gracie on Sunday. I got there at shift change and waited to go back in to see her. It was so stormy that night and the family back at home tried to get me to stay until early Monday morning and let the weather get better, but I missed my baby girl so much and needed to get back to her.
I sat in with her and read Dr. Suess Hop on Pop. She was no longer on the paralytic, but was still on the chloral hydrate to kind of keep her sleeping but kind of aware; she had restraints on her arms to keep her from attacking the tubes if she woke up too much. Dr. Jeff wanted it this way though, to begin slowly waking her up. Such good news this night. Gracie had been off the ventilator for 8 hours this day, and 6 hours on Saturday; the new estimate of getting home would be around Christmas time. Dr. Jeff expected Gracie to remain attached to the ventilator for about 5 more days, and then begin recovery!
While I read Hop on Pop to Gracie, her eyes fluttered and she was so aware that her mommy was with her; she tried to open her mouth and cry. I was so happy to see my little girl coming around, but yet worried that she would wake up too much. I held on to her finger and she held tighter. I was so proud of my little fighter; she was so brave, so courageous.
I did not know that this would be the last time I would have with my little girl, just the two of us spending time together.
(((((Hugs)))) Gracie was an unbelievable child. She had amazing strength and courage. Gracie will continue to touch my life for years to come, even though we never met....
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