Update

It has been a while since my last post because of two reasons:
First, I was waiting for fantastic news to share with everyone.....but that didn't come.
Second, I have not felt as though I have much to share and I have absolutely not felt inspired to write.
Tonight is no different, but because we need prayers to continue for our Liz, I will share an update at least......

Elizabeth  has had a rough week. She is sick with the cold/cough/congestion that the rest of us have had, and her bug is making us all nervous as we hope and pray that she can remain free of it turning into a sinus infection or pneumonia as is common for her. We are maxed-out on preventative meds and measures for keeping it from turning into infection, so all we can do is keep up with those and pray for the best.
Friday, I took her to the doctor late in the afternoon because for two days she had symptoms of a UTI. Her urine was clean for infection (thankful!!), but it showed ketones (she was dehydrated enough to have ketones...not good!) and also showed that she continues to spill protein into her urine. This has been going on for months, and so GI thinks we should see Nephrology to check her kidneys again.

Tuesday of this week Walter, Liz and I had an appointment with her Pediatrician that lasted an hour an a half. Dr. Lee is amazing at going over things with us and she had a heart-to-heart with Liz about a few things....including a very real threat to send her to the hospital because of her dehydration.
At that appointment, we knew Liz would get the Pneumovax vaccine (pneumonia vaccine). It is super complicated, but there are different sterotypes of antibodies (I think this is how to word it.) and Liz did not show antibodies to the vaccine given before called Prevnar. We had to wait until two months after stopping IVIg to give her the Pneumovax, and Tuesday was exactly two months. All of her doctors wanted her to have it so badly, that three specialists had their offices holding a vial for Liz, just to make sure she had it on the 15th.
Dr. Lee then told me that Liz should have the whooping cough vaccine on Tuesday as well. I questioned her because I was worried that Liz was already sick and I didn't want to give her too many things. She assured me that we should do it, so we did.
By 11:00pm Tuesday night, Liz had a fever of 102 and was miserable with a headache and nausea.
That continued through the night and into Wednesday, and by midmorning Wednesday, she was making me nervous with how lethargic she was and I could not get the fever to go down at all with Tylenol. I know children can react to vaccines, though Liz never has, and so I attributed the fever and other things to that instead of taking her to the ER, thinking it may be a PICC line infection.
I was sick to my stomach thinking that I agreed to the tdap vaccine and now she is suffering.
Turns out that she is actually reacting to the Pneumovax vaccine.
This severe reaction is awful, but Dr. Lee said that the good news is that her body is reacting at all, and we can surmise that her body does have antibodies to fight that viurs...a good thing.
Still, it is worrisome that she is so sick from it, and so we will see Dr. Lee tomorrow morning.
And, because I am Mother of the Year, I told my Liz to "hush please, you have been through much worse than a shot, it is normal to have some pain!" when she complained about the horrible pain yesterday.....

Clearly this swelling is not normal. I feel awful. Her arm is 2 inches than the other one and this is a bad picture, but it is deep red and hot to the touch : (
I can't believe I asked her to not complain.

Today we added to her misery by going to her scheduled GI appointment. Some good news (because we LOVE good news)- her scope shows that her Fundo is intact. This is very good to hear. If I had to send her back to surgery again right now for a 6th Fundoplication, I think I would lose it.
Not so good news- her weight is down. If she loses even a half-pound more in the next four weeks, we are placing the G-tube. What this means is....we are placing the G-tube. I never say never, but realistically, there is no way she can maintain this weight given that she has already lost. I can appreciate that her GI doc said that a Gtube is a major lifestyle change and so we want to be absolutely sure we've exhausted all chances of letting her body prove itself. And, we want Liz to know that we respect her efforts to try at gaining. If she was crashing in weight, of course our hands would be forced to do something now, but though she is losing and her prealbumin continues to decline, she is stable. Having said that, Dr. T. explained again to Liz that needing the tube is in no way proving failure on her part. There are reasons she has trouble with her weight not the least of which is the size of her stomach. A Fundoplication requires literally wrapping the top of the stomach around the bottom of the esophagus. You can picture that each of the five times the surgery has been done (after her Fundo knot has slipped undone), more and more of the stomach has been pulled into that knot.
Walter expressed passionately that he wants to wait until after our trip to Maine the first week of July, to have the surgery for Gtube placement. We want her to be "normal" (no tube feedings) and to be able to swim and play in the ocean during those ten days. So, that is our goal.

As for the PICC line which I thought may be taken out this week, it is not. She'll have it at least another month. Boo! I want that thing out of her because it is an infection risk and infection is the worst thing that could happen for Liz. At least we know that it will be out by July 1st..... Dr. T and the team said she cannot travel out of state with a PICC line, so he has agreed to get it out by July. Yay!

I wish I had it in me to express everything I would like, but I do not.
We need prayers to continue, for the obvious concerns and sufferings of our girl, but also for her precious state of mind. I am so worried that as we run in circles putting out fires, she is going to give up. She is strong and not a quitter, but she is tired of working hard and not having a firm plan towards.getting well. One day at a time, Liz. One day at a time.

"Be strong and courageous. Do not be afraid, do not be discouraged, for the Lord your God is with you"