Look who has gained NINE pounds since February. NINE POUNDS!!!
I can't tell you how huge this is! Actually, I can..... it is as huge as having a whole team of doctors and nurses and dietitians working together, having to be on TPN and Lipids, many medications, and a whole lot of patience. THAT is how huge it is. It is huge and it is wonderful.
Over the last week, some decisions have been made regarding Liz's care. First, in terms of GI, we are stopping the TPN. There has been much talk about putting in a G-tube, and we went into yesterday's GI appointment ready to hear the doctor's plan about that. His plan, though, is not exactly what we thought. He would like to stop her nightly TPN (IV feeds) and give her two to four weeks to show us what her body will do. We are not expecting her to gain weight as she has been while on the TPN- that is just not realistic. BUT, she needs to be able to maintain her current weight.
TPN is risky. TPN is a band-aid for a patient like Liz, and we knew going into it that the team did not want her getting IV feedings for longer than 2-3 months. The GI team was trying to give her body a boost in nutrition and weight by using the TPN, rather than have the Gtube placed.
Her Prealbumin is still low and her doctor is watching that closely and that number will play into his decision in the next few weeks as to whether or not to go ahead with the Gtube.
I was SO happy to hear that we aren't going straight to the tub, but her doctor reminded me not to get too excited, and that we "still have a lot of work ahead."
Candidly, none of us are expecting Liz to be able to maintain her weight. Her TPN& Lipids add 900 calories a day to her diet. I don't see how she can keep up with that with only by-mouth calories. She has such a wreck of a GI system, but we all think that trying this before going to the tube is worth it. Even if only for her mentally. There is a tiny chance she can do it and miracles happen- so I am holding onto that! Gtubes are not awful and I know the good they do for patients. BUT, if we can spare her having to have one, I want to do that! She has been through so, so much- at this point I want to give her body every chance to be as "normal" as it can be. And while gtubes aren't the end of the world, they aren't normal. I'm holding out, and I am glad the doctor is too. Even if it is only for weeks.
It feels a bit overwhelming to balance the urgency and importance of her weight, with not letting her weight and food consume our thoughts. She needs to believe that she can do this, but at the same time, I do NOT want Liz to focus so much on her weight. Such a balancing act.
The team has told me to be prepared to not take this personally if she can't maintain this weight. That is difficult to grasp, as I am the one preparing her food, being educated and trained on how to increase her caloric intake, and caring for her.
Phew! That is a lot. In short, the next two weeks will be telling and we ae praying that Liz's body will hold onto the weight and we can avoid having the Gtube.
Her PICC line will stay in for another month, in case we need to use it for any reason. Please keep praying that her line stays safe and infection free.
And, other decisions-
*Liz will go to the OR Procedure Room to have another scope (Endoscopy) next week and have a bravo chip placed.
* I decided to stop IVIG. Eeeekkk! This was a big decision because there have been differing opinions from her physicians. After last month's infusion took such a toll on her, and because we need more testing that cannot be done while getting IVIg treatment, I made the call and cancelled this month's treatment. I am going to make a certain doctor VERY upset by doing this, but Liz is my child and I get to decide what I think is best for her, given the information I have. My back has been against the wall many times in the past two years when it comes to her care, and I am getting better at holding firm and making the tough decisions.
So, after IVIg, a patient must wait two months before testing (because IVIg is putting things into your body that your body lacks, so tests done while on IVIg will reflect that. You need at least two months without donor product in your system to give a true reading of what your body is doing). In May, she will get her Pneumovax vaccine (her body resisted it before). She'll have titers testing done to check counts (immune system counts, mostly). She will have specific white blood cell testing done.
Making the decsion to stop IVIg, especially during flu season, was not done lightly. I have to just pray I have made the right choice and pray that we can keep her safe from those germs now that her immune system is not getting extra help from the IVIg.
*We are leaving a specialist she has been seeing and she will now be seen by an Immunologist at CHLA. We saw this new doc for consult a few months ago, and I liked him VERY much. He is so respected by other Physicians, and his recommendations are what all of her other specialists agree with. I HATE switching specialists, but once again- I need to do what I feel is the best thing for Liz, even if it is uncomfortable.
*Liz will not go to school this year. Boo! I was hoping to get her back for May and June, but it is wise to keep her out of school, and we will just focus on the fact that we are getting her healthy and ready for the next school year!
Thank you for praying for our little (getting bigger!) Liz. The days seem to flow into each other as we go through the monotony of constant care for her and I sound like a broken record coveting prayer on her behalf, but we value each and every prayer!!
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