I realized I have posted some pics lately of us in ER without many details so thought I would send out a little update. Since late October, Teagan has continued on a puking streak of about once a week. We had thought we had figured it out with Endocrinology in November from the lack of cortisol contributing to her being nauseous but unfortunately it returned. Everytime this happens we end up going to the hospital where they do their obligatory imaging of her ventricles in her brain as well as a shunt series x ray. These two things are checking to see if her shunt (aka brain drain) is functioning properly. Thankfully no images or x rays have shown any indication of anything with her shunt not working. Typically we try our best to time it right when we go to the hospital so we can do a haste MRI in outpatient because if we have to go through ER they only offers a CT scan which means more radiation unfortunately to Teagan's poor head. We have unfortunately been at the hospital quite a lot lately and are becoming frequent visitors of the ER as well. I cannot tell you how much I do not like going to the ER. Talk about every ounce of my body remembering the first day we came there to find out Teagan had brain cancer. Bodies and brains do not forget such stuff so naturally it always brings up a lot of feels on many levels.
Recently Teagan's puking episodes have unfortunately gotten a bit worse. Two weeks ago she did not sit upright for three days, did not eat, and everytime she sat up she would puke over and over again. She told us her head was hurting. We took her to the hospital and her ventricles seemed not to show any concern with her shunt but unfortunately her symptoms were so incredibly similar to when her shunt was overdraining during chemo (extensive puking, no eating, not sitting upright as sitting upright makes her shunt (brain drain) drain more and leads to more puking). Imaging does not show overdraining unfortunately.
I was at work so Jeff took her in and convinced them to adjust her shunt setting from 1.0 to 1.5. They adjusted it with their super magnet outside the valve and sure enough the next morning she popped back up and was back to herself. Typically a shunt adjustment would not work that quickly but something worked. I cannot tell you the incredible relief which washed over me when I was able to see her when she woke up and was talking and back to herself for the most part. The incredible relief in and of itself is beyond draining but thankfully in the right direction. We hope in the back of our minds that this adjustment was correct for her shunt and we will be able to check at the end of February during her next scan if this adjustment was not a correct adjustment (hopefully we don't have to check this before then with any issues).
Last Sunday, we ended up in ER with Teagan again the entire day. She woke up in the middle of the night screaming her head hurt and then she went back to sleep. That next morning when she woke up it was obvious she was not feeling good. Sure enough she began puking just after waking. Puking is complicated now that she has to take hydrocortisone (steroid) to make up for the lack of cortisol she produces from radiation damage to her pituitary gland. Hydrocortisone regulates Teagan's blood pressure. Without this medication on board it could kill her. So unfortunately she threw up Sunday morning right after I gave her hydrocortisone. I then administered her another dose and she puked it up a second time 10 minutes after giving it to her. I tried a 3rd time to give her meds and again 10 minutes later she puked it up yet again. If after trying to give this medication three times and it is not able to be kept down, you have to call the on-call Endocrinologist. I did so and she instructed us to give Teagan the injection in her leg of Solucortef which allows this medication to get into her system. Immediately following this, we must take her to ER. Since I was already going to ER, I decided to let them give her the injection there and then monitor her. Teagan continued puking every 20 minutes on Sunday for about 12 hours. At ER they gave her the stress does injection and then had us stay there until her afternoon dose to see if she could keep it down. If she was able to keep it down, we could go home. If not, they told us we would need to stay the night to monitor her. Thankfully after they gave her some Zofran (anti nausea med), she was able to keep down her afternoon dose for 40 minutes before puking again. Thankfully she only needed 20-25 minutes to keep it down so we were able to go home. She continued to puke on the way home and then all night at our house. The next morning.....she popped back up saying, "I feel better Momma".
Man oh man this is a tough road. I'm not going to lie. Sunday night I put together a big email to our previous Neuro Oncology team searching for some ideas of what we can do to figure this out better. The amount this is impacting poor Teagan's quality of life let alone our whole family's is extreme. Settling has never been an option for us and if I do one thing as her Mom is to try and help improve the quality of the life she was left with after much of the damage done by many of the treatments we allowed to be given to her to save her life. Two days later I scheduled GI testing we will begin next week and then we have a laundry list of additional tests and testing to do in an effort if nothing else to begin to rule some of the potential reasons for the puking out. Living each week waiting for her to get sick has left me a little skittish I won't lie. Thankfully she has consistently been perking back up after these puking/sickness spells so I am learning to talk myself through it with this reminder as best I can.
One highlight recently is Teagan got some new ankle foot braces that go all the way up her calves. She also has matching shoes that are wedges to fit braces so that her body and bones stack correctly for her to more effortlessly stand. For the first time since brain surgery two years ago, she was able to stand last week for 10minutes!!!! This is huge because in order to walk you must stand first! So grateful for finding out about these new braces through another Mom I met at Teagan’s preschool last year.
Recently I was also asked to talk on behalf of a caretaker perspective. I have never thought of myself as a caretaker. Mom, yes, which is what I am most proud of in life. Caretaker is something I imagined doing when taking care of my own parents when they get old. Through this experience it became blatantly obvious that caretaking is a new part of my identity. Our daughter still cannot walk (but we are still hopeful) and started with one potentially terminal condition and after treatment now has three potentially terminal conditions which could take her. The amount of side effects from the treatment designed to save her life are incredibly extensive. But yet I still didn't consider myself a caregiver.
I guess I am a caretaker after all in addition to being a Mom first. I'm doing what any Mom would do which is to be the best Mom possible to their child who unfortunately got a brain tumor. So we continue to care for Teagan as best we can as we know that the care we provide her amounts to her quality of life. We continue to be grateful for caring for her and continue to try and improve the care we are giving her. For today, she got to play in the snow with her brother, have hot chocolate by the fire, and just be a kid while being healthy enough to throw a solid 4 year old fit while leaving Starbucks. One day and moment at a time is the only way to live and be grateful for this life of ours:)
Thanks for everyone's continuing support and love sent Teagan's way!