G Button Surgery
Unfortunately nothing seems to be easy for my sweet Ellie. Ellie takes asprin daily to help prevent strokes and her neurosurgeons wanted her to stay on it for her surgery. She had been on asprin for her brain surgery and, although she received a blood transfusion during the surgery, she had no issue with continued bleeding after surgery. G button surgery however was different.
We celebrated Ellie's 2nd birthday in the hospital the day after her surgery. She was clearly not feeling well, seemed in pain, and spent the day in bed. We gave her a big race track for Little People cars and she did enjoy playing with it in bed, even though she was clearly not feeling like herself. Because they were still working her up to getting the proper amount of formula through her g button and since it was the weekend, we thought at that point that we would be going home on Monday.
In the middle of the second night after surgery, Ellie started bleeding out of her g button area. Then that morning Ellie began vomiting blood. She continued to vomit blood throughout the day, including large grape sized clots of blood that she would choke on as they came up. We were highly concerned, as were our nurses (we were still in our room on the rehab floor). Our nurses kept calling general surgery but no one came to check on Ellie. That afternoon Charles decided to hook Ellie's g button up to the tubing to see if anything drained out. Immediately blood started flowing out of her g button in alarming amounts. Finally a general surgery resident arrived. Having missed all the vomiting of blood, she dismissed the bleeding saying it probably just looked like more than it really was due to the fact that even a small amount of blood mixed with stomach acid could appear to be a lot of blood for "someone who isn't used to seeing blood every day". Basically she was condescending and didn't take our concerns seriously at all. Charles demanded that we speak to someone other than a resident and when no one came he ended up calling the "quick response" number that is posted on the hospital wall. That actually got us some attention as they sent several specialists to check on Ellie. While they did connect Ellie to monitors, they didn't have much to say about the bleeding. Ellie continued to both drain blood from her g button tubing and vomit blood. By evening we were feeling even more concerned.
Charles e-mailed our neurosurgeon and just said, "Ellie is bleeding. Can you give us a call or if you are here can you come see us?" It was evening but Ellie's neurosurgeon tends to work long hours and sure enough she showed up at our room soon after Charles sent the e-mail. She said she was about to pull out of the parking garage when she saw the e-mail, turned her car around, and came to check on things. She is so wonderful like that! She too was surprised by all of the blood and ordered blood draws to be done to check on Ellie's platelet levels since having her levels drop too low could put her at a high risk of having another stroke due to the already restricted blood flow in her brain. And she gave a number to the nurses that if her platelets dropped below that number that Ellie was to receive a blood transfusion. Our nurse requested that Ellie be moved to PCU (one step up from ICU) but they were full so our nurse assured us that Ellie was her #1 priority that night. Even with this reassurance, Charles and I didn't sleep at all that night. In the early morning hours her blood results came back as being too low and Ellie received a blood transfusion.
Monday morning they took Ellie down to radiology to check on the placement of her g tube. They found it to be in the correct location but she was continuing to bleed out her g button site and vomit blood. Later that morning they moved Ellie from the rehab floor to the surgical floor where she would be closer to the doctors in charge of her care. We talked with the doctors and they felt like if her platelet levels dropped again that they would like to go in surgically to try to find the location of the bleed. Even though this would be done with a scope, they said because of the chances of breathing difficulties she would have to have the surgery done under general anesthesia. We prayed she wouldn't need this additional surgery and that the bleeding would just stop on its own.
Early Tuesday morning, when the doctors came in to make rounds they informed us that Ellie's platelet levels had dropped again meaning she would need another blood transfusion and that they would work her into the surgery schedule for that morning. We signed the papers for surgery and felt that was the best plan. Then we got her g tube unclogged and instead of draining blood, what came out was mostly clear liquid! It was a miracle. So surgery was cancelled and we were so relieved.
That Thursday was Thanksgiving and I have to admit, I had a lot of mixed emotions that day. On the one hand I was beyond thankful that Ellie was improving and doing so well. On the other hand, I was sad that we weren't celebrating Thanksgiving with Payton at home as I had thought we would be. Let me tell you, Halloween in a children's hospital is about as fun as it can get being in the hospital...... people come and set up booths to let the kids trick or treat, there are Halloween parties, everyone dresses up....... Not so for Thanksgiving. Besides the sick kids, their parents, and the hospital employees, the hospital is EMPTY. We would look out the window at the usually busy Fannin Street and there wasn't a car in sight. We were clearly not the only ones not receiving visitors on Thanksgiving. And I get it completely, Thanksgiving is the type of holiday that you stay home and enjoy with your family, not volunteer to go cheer up sick kids or even to visit friends in the hospital. All the restaurants around the hospital were closed so we ate from the cafeteria. The turkey was in a dark gravy and I actually thought it was pork chops before I asked. The food was pretty awful but Charles and I had fun joking about it. I was really wanting a piece of pumpkin pie (which they didn't have) but the "pumpkin whoopie pies" weren't bad and made for a good laugh. Looking back, there will be many more Thanksgivings and even in our situation we had so very much to be thankful for.
Ellie continued to improve and Saturday we were all packed and ready to be sent home when Ellie started vomiting again. This time it wasn't blood but she couldn't hold anything down and spent the morning bringing up stomach acid. Thankfully by that evening she was holding down food again.
Home
Sunday, November 30, 2014, after being in the hospital for 69 consecutive days, Ellie was discharged from the hospital. It was an exciting day but also an exhausting one. It was actually a bit like moving because we had accumulated so many things while in the hospital. Ellie got home and she was thrilled to see all the toys to play with. In fact, for about 24 hours it was a struggle to get her to eat or sleep because she would throw a fit that she wasn't getting to play instead.
The next day Charles met my parents halfway between here and their house (they live 4-5 hours away in Central Texas) and picked up Payton. Words can't express how thankful we are to my parents for taking care of Payton and providing her with a stable living situation among all of the chaos in our lives during this time. My mom drove to Galveston most every week to allow Payton to attend school and to visit us at the hospital. It made things so much easier for us knowing that she was happy and well taken care of so that we didn't have to worry about her. We are also grateful for Charles' mom and sister Debbie who took care of Payton during the week that my parents moved into their new house and for all those who have offered to help if we should need it.
Payton was excited to be home and excited to have Ellie home again. Despite being home, Ellie had daily followup visits with doctors at Texas Children's and therapy evaluations so at first there were no days of just being at home resting. And actually, those days are still very rare in our lives.
Birthday Party
The following weekend (the first weekend in December) we finally got to celebrate the girls' birthdays with friends and family. Payton had been talking about having a party at Jumping World, a trampoline park in League City. So we let her invite a few close friends to that and also my mom, sister-in law Erin, and my nephews Hank and Hudson made the drive here to attend as well. It was a lot of fun and was the perfect party for us under the circumstances because it required almost no work or planning on my part. We also got to attend the Moody Garden's festival of lights with my mom, Erin, Hank, and Hudson. Payton and Hank had a blast running through the trail of lights together! And it was about 80 degrees even at night so we didn't have to freeze.
Christmas
After spending Halloween, Thanksgiving, both girls' birthdays, and Charles' birthday in the hospital, we were so very thankful to spend Christmas at home. The week before Christmas I started to say, "I'm so glad we get to spend Christmas at home!" when Charles told me to be quiet so as not to jinks things. The weekend before Christmas we went and visited Santa at Moody Gardens and Payton told him she wanted roller skates for Christmas. This was the first year that Payton actually liked Santa. Ellie, on the other hand, wasn't a fan.
Christmas Eve we made a traditional Thanksgiving type meal to make up for the meal we missed having on Thanksgiving. It was delicious. Christmas morning the girls opened their presents from Santa and then later in the morning Charles' mom (Nana) came over and we opened the rest of the presents given to us by family and friends. Then later we ate tamales from one of the best tamale places in the state, Texas Star Bakery. It was a quiet Christmas but nice.
Kidney Check
The day after Christmas we headed up to Texas Children's Hospital early for a scheduled CT Angiogram of Ellie's kidneys. Ellie has very high blood pressure for someone her age so her nephrologist wanted to be sure that it wasn't caused by restricted blood flow in her kidneys which is a problem for some people with moyamoya. Thankfully her kidneys looked great! The genetic abnormality that Ellie has causes hypertension so that very well may be the cause. Right now her neurosurgeons would rather her blood pressure be too high than too low so they don't want to treat it. The reason for this is because a higher blood pressure encourages good blood flow through the brain whereas having her blood pressure get too low could be very dangerous for someone with Moyamoya. Eventually they may choose to treat her blood pressure issue but for now they label her as having "permissive hypertension" since they allow her blood pressure to remain elevated.
The CT Angiogram was a bit of an ordeal, as we suspected it would be because Ellie is very difficult to get an IV in, even with the help of ultrasound. After 3 separate attempts by different people, they finally did get an IV in her and thankfully after that the test was a quick one and didn't require anesthesia.
New Years
We had decided we didn't want to travel for the holidays for a number of reasons. But then New Years Day rolled around and we were sitting at the breakfast table trying to figure out what we were going to do for the next 4 days when we decided maybe we were up for a trip to Georgetown. My parents, both my brothers, my sister in law Erin, and my nephews Hank and Hudson were all in Georgetown so it was the perfect opportunity to see everyone. The trip there was pretty rough. Ellie screamed and cried all the way to Bastrop. We decided maybe it wasn't just the fact that she hates car rides but that it might also have to do with her car seat. We came to this conclusion because Payton used to act the same way when riding in that particular car seat. So we stopped at the Walmart in Bastrop and bought a new car seat. 10 minutes later she was sound asleep! We had a nice visit with family and we were glad we made the trip despite the difficulties getting there. The drive back was peaceful as both girls slept for some of the trip.
Ellie Update
Ellie made a lot of progress while in inpatient rehab and has continued to make progress while at home and attending out patient therapy 4 times a week.
Physical Therapy
Ellie's walking continues to improve and she wants to walk all day long. She is still unsteady and we have to watch her close, especially on hard floors and around things she can hit her head on. She does wear a helmet when walking and a wrist brace, which is mostly to help keep her wrist/hand from curling, but also serves to keep her from breaking her wrist when she falls. She also she wears an AFO (leg brace) to give her leg some additional stability.
For the most part Ellie doesn't know how to get herself from a sitting to a standing position. A handful of times now she has managed to pull herself to a stand but it's not something she remembers how to do from one time to the next. That is one thing she is working on in therapy. Her problem with trying to stand up is that she's learned to lean herself backwards against the person helping her stand and this strategy just doesn't work when trying to stand up without help. She does the same thing (leans backwards) when trying to go up and down stairs so that's another thing she's working on with help.
Occupational Therapy
Occupational therapy is directed the most at getting back function to her right arm and hand. Currently Ellie has no use out of that arm and hand. She will lift it up when walking to help with balance and when rolling over her arm usually comes with the rest of her body instead of getting stuck under her like it used to. When sitting or standing it either hangs limp at her side or she just holds it up against her body, but she doesn't make any attempt to use it even when encouraged to do so.
Right now our goal is to continue to bring her awareness to that arm/hand. We show her the hand, rub different textured things on her arm/hand, hold things in her hand for her, tell her over and over again to "use both hands" and then assist her in doing so. Her occupational therapist puts kinesio tape on her arm/hand which also serves to draw her attention to that arm.
One way to tell the brain that a limb exists is to be weight-bearing on that limb. So the therapists try to get her to crawl or to play while supporting her body with her arms. Ellie hates this and oftentimes really resists, trying to hold that arm up so that she doesn't have to be weight-bearing on it. They had hoped that at home she would eventually find crawling to be a method of getting from place to place so that she would weight-bear on that arm, but Ellie has taught herself to do a one armed scoot across the floor on her bum. As a baby she always bum scooted instead of crawled so it doesn't surprise me that she would go back to it.
Speech Therapy
Ellie is making progress in her speech but she still doesn't have any true words that she uses correctly. She loves to babble "nay-nay" and "mama" but it doesn't mean "mama". Her best form of communication comes from her nodding "yes", "no", and signing "all done". Ellie is constantly "all done" with everything! A lot of the time when she signs "all done" she also says "mama", but a few times she has said what actually sounds like a muffled version of "all done". When Ellie sees pictures of horses or toy horses she says "Ney" and when she sees cats she says "Mmm". When reading books she will sometimes attempt to find objects that you ask her to find. But if you ask her, "Where's Mama? Where's Daddy? Where's your ball?" she won't point to us or to the object. She is sometimes focused enough to match up simple puzzle pieces on a 3-5 piece puzzle but not coordinated enough to get the pieces in their spot properly.
G Button
Ellie has gone back to being a really good eater. She oftentimes eats twice as much as her big sister. Because she had so much trouble swallowing thin liquids for such a long time, she is still somewhat resistant to drinking. She will take a sip here and there for praise and sometimes if we introduce a new cup she will drink for a day or two but once the cup novelty wears off she goes back to refusing it. Because Ellie has restricted blood flow to her brain, it is extremely important that she stay well hydrated. It's possible that lack of proper hydration was a contributing factor to the major stroke she suffered. So we put water/Pedialyte in her G Button 5 times a day and then she gets a continual formula feed through the night. We also put all of her medications, except Asprin that she takes by mouth, into her G Button.
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Our Daily Lives
Ellie is now attending therapy 4 times a week at Texas Children's Clear Lake. In addition to therapy, there hasn't been a week that has gone by yet where she hasn't had some kind of followup appointment with a specialist. She sees something like 10 different specialists. And on top of that, I'm now in my 3rd trimester of pregnancy so I have my own appointments to attend as well. So we are always on the go. Besides doctor's appointments, in Ellie's free time she enjoys playing whatever Payton is playing, walking, coloring, playing outside, and playing with toy cars, small balls, and baby dolls.
MRA/MRI
This Sunday Ellie will have an MRA (MRI with contrast) done on her brain. This will be her 10th time to go under anesthesia and you would think it would get easier for me but so far that isn't the case. I think because of the time she woke up from anesthesia and then stopped breathing right in front of us, I'm very much on edge during these things. The MRA is being done to make sure she hasn't suffered any additional strokes since her last MRA (we have no reason to believe she has), to check on how the stroke affected area looks now that the swelling has had a chance to go down, and we also might be able to tell how her blood flow is looking post surgery, although she will undergo an angiogram next month to get a better look at her blood flow situation. We will keep yall updated on how things go and appreciate all prayers for the procedure and for positive results. Thank you all for the love and support!!!
