Finding a moment to do anything is becoming increasingly difficult. I try to get some sleep when I can, but most of the time Tessa is gripping my hand. She has become more fearful, not wanting me to be farther than wrapping my arms around her. Last night she would jolt awake calling for me; when a nurse or doctor comes into the room she begins to whimper "what are they going to do?", like everything else it's heart breaking.
We were discharged from the hospital on Saturday, and Casey and I decided it was time that we took control of her med schedule. We messed around with it until we found a formula that seemed to keep her pretty comfortable. Saturday night we got to see Auntie Dee Dee, who had her magic book bag with her (love that Dee Dee!), Uncle Mike and Dylan. They brought us a wonderful dinner, and hung out. Later Katie, Marc, Sam and Elle came over much to Tessa's delight. She thinks the sun rises and sets with all of her cousins (I kinda agree).
On Monday we were supposed to get a bone biopsy. All that we knew was that we were going to be squeezed in at some point that day-probably later than earlier. Casey spent all Monday morning and early afternoon on the phone trying to find out when we were supposed to be there. The biggest hitch was that Tessa had to fast from the previous night-no food and only occasional sips of water. The fabulous Sam, Elle and their friend Jennifer (who Tessa is still talking about) entertained her for most of the day, for which we are so grateful. They finally called us in at 3:30. We got to the hospital at around 4 where we waited until 6. They finally brought us back to get Tessa prepped. Sadly, the premed that they give to kids before the sedation (to make it easier and less traumatic when they are laying on the bed with the gas mask on) no longer works for Tessa thanks to the huge amount of opioids that she takes on a daily basis. So we wheeled her back to the OR where we have to restrain her while they hold the gas to her face. Then they tell you to give her a kiss goodbye. Why do they do that?
This biopsy was different than the previous procedures which were aspirations-poking a big needle through the bone and trying to suck stuff out. This one was an actual surgical procedure. They made an incision in her left femur, cut out a piece of bone and scooped out as much marrow as they could; think melon baller. When we got to the recovery room it was 8 and she was waking up with doctors and nurses scrambling around her. We were pissed because we had always been there with her before when she woke up and we had been very clear that this was something that we were adamant about. She was crying and screaming from the pain, and they loaded her up with dilaudid and fentanol. She was still miserable a half an hour later and she got a big dose of oxycodone. She was finally able to calm down and fall asleep, but she would stop breathing and had to have the oxygen on blow-by. They didn't feel comfortable releasing her, and at about midnight she was admitted for the night. So Tessa and I had another night in the hospital.
We're back at Noni and Papa's house now, she's hurting badly and getting loaded on pain meds. We are just trying to keep her comfortable. Life is lived minute by minute, dose by dose.
We're hopeful that we will have some information from the biopsy sometime in the next couple of days and that it will yield something informative if not conclusive.
Thank you all for your prayers and support.
No comments:
Post a Comment