Finding the good.
I am sorry for my silence the past several days. It’s been a very rough and exhausting week and I really needed to wait to see some good in all of this before writing. Last Tuesday Lizzie’s respiratory status deteriorated very quickly, almost to the point of having to be put back on the ventilator. She was put on a CPAP machine and thank God she has tolerated it well. She does have to wear a mask that forces pressure into her lungs. Whatever it takes.
Wednesday night Lizzie started the beginnings of withdrawals from her pain/sedation medications. Because she was in respiratory distress the weekend and days before, a few of her medications had to be held and decreased. It all caught up to her and she was in bad shape. By Thursday afternoon she looked like someone you see in a movie going through detox. Her eyes were sunken, she shook, she did not want to be touched, held, or even looked at. She could not be still. Her heart rate was elevated and she only slept for 30 minute bursts here and there. This continued through Saturday morning, she’s still not quite her self but she’s needing less and less meds to calm her down now.
On Thursday we also transferred to a different hospital. I cried the entire way to the ambulance. We seriously had formed a bond with so many people there; with housekeeping, the cafeteria workers, therapists, respiratory, nurses, childlife, secretaries, monitor techs, dietitians, parking lot guy, gift shop ladies, security, other parents, etc. I had been told, or perhaps I just misunderstood though nobody corrected me, that a new children’s building had been built and that was why the doctors were moving. Turns out, that is not quite the case. It is not a children’s hospital, or even wing, it’s not new, and it is enormous. Oh well. It is an excellent hospital and it is where Lizzie needs to be. We were greeted by a team of very nice nurses and respiratory therapists. And even in the midst of her withdrawals Lizzie started to work her charm on them.
On Saturday, Lizzie was put back on isolation for a reoccurrence of C.diff, the world’s nastiest stomach funk. It nearly did me in. I kept thinking, “nobody wants the patient with highly contagious diarrhea and withdrawals, I don’t care how cute she is”. I voiced my concerns to her nurse and respiratory therapist. I cried all day and I was mad. Why can’t she catch a break? Why all these stumbling blocks? But then…. Lizzie’s nurse and RT loved on her all day. And they encouraged me. She was given a fantastic night shift nurse and another excellent one today. It’s going to take some time, but everything is better with time. Today Lizzie seems better as a whole. Her tummy issues have slowed down, she’s doing well on the cpap and her lungs sound better. She’s even napping soundly right now for the first time since Wednesday.
I did get to trick or treat and carve pumpkins with my boys this past week. It was nice to have a little something different going on to take our minds off stuff. It was sad our Peterpan and Tinkerbell couldn’t be together this year, but they both looked stinking adorable in their costumes! We decided to dress Lizzie up and take her picture early, I’m glad we did because she was not in good shape on Thursday. Plus her nurses and everyone who watched me make the costumes wanted to see her cuteness. Our new goal is to be home for Thanksgiving, but if she still needs time then we’ll do what we have to do.
Last night as I struggled to find the positive in this situation, it dawned on me Lizzie’s story has reached so many people. Literally thousands of people. If just one family responds to the call to adopt and there is one less orphan, then there’s the good. Or if just a handful of people decide to help the orphan crisis in other ways, through prayer or financial giving or whatever, then there’s the good. Lizzie’s situation is unique. While there are several very sick babies out there who need a forever family, don’t let her case scare you. We weren’t duped or tricked, we knew she had a complicated heart problem. We did not know the full extent and honestly we didn’t start the process with this sort of special need in mind. But when God makes something clear to you, you do whatever it takes. There are children out there who’s “special need” is simply being the age of four. Or maybe they are hearing impaired, or have a cleft lip, or a club foot, or asthma. Often the children have already been treated for whatever issue they had and require little to no followup care, but they have been “branded” as an orphan. So yes, if there is just one less precious child alone in this world or if someone is just a little more supportive to a family adopting or fostering than they might normally have been as a result of Lizzie’s story, I can find good in this.
Thank you all for loving our little girl and our family the way you do! Your prayers, support, and encouragement gets us through these long days! I’ve got some pictures to make up for lost time. As time permits I’ll try to blog more. If you don’t hear from me know I’m done with my pity party (for now) and it just means we’re busy with kiddos.