Liz just said these words to me as I was "making" my chair bed for the night. A half hour earlier, our friend from Child Life came by to talk to Elizabeth about the G-tube, heading to the OR tomorrow, and shared a YouTube video of a 14 year old girl who talked about life with a tube.
Our girl is so very smart and aware of her body, and she knows it is time to do this in order to get stronger, and maybe even much better in terms of her bone marrow, cells and ability to fight infection. Today I had further confirmation that this is the right choice, as her Prealbumin is now the lowest it has ever been. Her body needs the nutritional support that only the tube can safely give Liz at this time. Severe failure to thrive is a tough diagnosis to see for your child.
It is important to me that Liz always feels informed. I don't sugarcoat things and I have always been honest with her about her health or things that her care team wants to do to her. I respect that some parents don't share the same with their "sick" kids, but for me, it is what has always felt right; I just want her to feel as in control as possible, and informed and involved.
Last night Liz actually slept well. She didn't start needing to, um, run to the bathroom until 7:30am. She has been going through the clean out process all day, but it seems to be more gentle than other clean outs have been and she is not as uncomfortable as some times in the past- definitely a tender mercy.
At 11:00 pm, she will get xrays done to confirm that she is cleaned out enough for surgery. Her GoLytly will run until midnight, a full 24+ hours of clean out for poor Liz's bum and gut. She is amazing and has done such a great job.
If her impaction has cleared, surgery is a go for tomorrow. She is the fourth case for her surgeon, so she should have an OR slot in the afternoon, we will hear the time later tonight.
Elizabeth's platelet count has dropped and so she'll have her counts done tomorrow morning to check again. The surgery team said that they are more comfortable having blood ready for her in the OR, too, so that will be available in case it is needed. I was very upset today because I didn't donate blood to bank for Liz last week. I have always donated blood (Meg and and Charnold have too) for Liz before her surgeries, just in case it was needed. I am losing my mind and didn't even think about doing it last week. I couldn't donate for her today because it is a three day process. I seriously messed up.
I am a bit nervous about the surgery because it was explained to me again today that her surgeon may not be able to place the G-tube laparoscopically. Because of all of her previous surgeries, she has tons of scar tissue and her stomach has been manipulated so many times that she is kind of a mess. Dr. N will try his best to do the least invasive approach, but if he feels it is safer and necessary, he will open her and place the tube that way. It would be a more difficult recovery, so we are praying for the laparscopic approach.
Walter is off tomorrow and will be here with us. Jackson has his Kindergarten orientation and I am sad to miss that with him, but Walt will try to be there and if he cannot, my sister will attend on our behalf with our big Kinder boy.
Tonight I am proud of Liz and myself. The last years of this difficult stuff has made us a good team and we remind each other to hang in there and focus on just getting her through each tough day and closer to home. She can do this. We can do this.
Liz is right, it is time. Please hold her in your prayers tomorrow.
 |
| Lola is a favorite visitor for Liz! She came by yesterday as we were getting settled into our room/ |
 |
| Liz got her own cell phone as a reward of sorts. She and Kate have shared one, but given that Liz didn't go to school or to a practice of any kind last year, Kate had the phone the majority of the time. |
 |
| Laurel, the amazing music therapist here, came by to play and sing with Liz today. I am always impressed at how Liz remembers to play even though she doesn't practice in between hospital stays. Playing with an IV in is impressive too : ) Laurel's sarcasm and sweetness reminds us of Kate, so it is always fun to hang with her in here. |
No comments:
Post a Comment