Marked Improvement

Over the past week there have been a lot of ups and downs. We never really knew if things were getting better or worse. The last 24 hours have been different though, Anellah has been showing continuous improvement. She has moved from miserable to calm-but-exhausted to just-a-bit-tired. It is so good to have her smile and her appetite back. I think she is trying to make up for missed meals because she has been eating a full meal in the middle of the night for the last couple of nights.

She has had a fever off and on since the procedure and has also had some mild issues with her breathing. Everything else is looking great though so if we can sort out those concerns we will likely leave earlier than planned. We MAY even be discharged today although I'm not allowing myself to get my hopes up too much.

Thanks for your prayers!

Procedure Successful Yesterday

Anellah had her TIPS procedure yesterday. They were able to get the shunt placed routing much blood around her liver. This was the main goal although there were plans to repair some vessels internally also. Since it took 6 hours and 2 minutes to place the shunt, the vessel repair was called off. There was some discussion about going back tomorrow to do the repair but the risks outweigh the benefit so we will not be doing that.

Anellah is recovering well enough to be out of the ICU this afternoon! She did have one complication during the night involving pretty extensive bleeding from the incision site but since she was in ICU there were 2 doctors, 4 nurses, and 2 techs there to help within minutes. She was very brave!

She continues to be pretty tired and not up to do much of anything other than watch a movie here and there but we are thankful she finally seems to be on the upswing!

Daniel came in this morning to be with her and I savored my time at home with Capper and Evelyn. I left so abruptly last Thursday morning without even picking Evelyn up from her crib I don't think she thought I would ever come back. I also finally got to see our ADORABLE baby goat and check on our chickens. I didn't realize how much I'd miss our animals! We were supposed to get baby ducklings today but our friend agreed to keep them for us awhile until we can all be home! It's too bad to miss the CUTEST fluffy duckling stage but I don't think the hospital would appreciate us having ducklings in our room. I hear they can be messy. :)

Seattle Children's Hospital

There are so many things I appreciate about Seattle Children’s Hospital I just had to make a list!

First of all, I’ve never met a staff member who was grumpy and didn’t look like he or she wanted to be at work. Everyone seems to come to work with a smile. Everyone is helpful and willing to go the extra mile. Seriously, I’ve never met so many nice people in one place before! Even the cafeteria staff are great! All staff also see the importance of letting parents advocate for their kids and are often asking, “is there anything in particular that is important or helpful for me to know about your child?”

They provide so many helpful services for families who are living in…err I mean staying in the hospital. Simple things like a place to do laundry, separate shower facilities with towels for parents, 20 minute massages for parents, a 24 hour Starbucks, a cart that randomly shows up on your unit with a smiling volunteer providing hot coffee, hot tea, and snacks, a swimming pool with certain times available for patients and families to swim, 24 hour family lounge with computers…and all of these things are free!

And the way they provide for kids, they know what is important! New rooms have a TV system called “Get Well Town” that starts with a short video just for kids about being in the hospital and how even though it can be a little sad or scary there are some cool things too like, “it’s never really dark” and “you are never alone because someone is always checking up on you.”The facility itself is beautiful and the décor is really kid-friendly. Everything from color-changing lights in the elevators to having each building named after a place (Ocean, River, Mountain, and Forest) and décor to go along with the theme. Each elevator has an animal name, like Frog or Salmon or Owl. Everything is kept exceptionally clean and in good repair.As with any hospital, there are always hiccups with communication between providers and departments but of all the places we’ve been I’d say it’s one of the best with keeping communication open and clear. Logistics run smoothly and staff members are kept up to date about current plans for the patients.I am so thankful to be receiving care here. Sometimes staying here even feels like a bit of vacation…ok that might be a stretch but it’s really a blessing to have the privilege for Anellah to be treated in this facility!

TIPS Tomorrow

Hello, just a quick update:

I found out this afternoon that Anellah will be having her procedure tomorrow. It's not considered "surgery" because, thankfully, she can have a type that is done through blood vessels in the neck or groin rather than an open incision (like a heart cath). Hopefully she will have it at 8:00am but it may have to wait until later in the day if the Operating Room is too busy since this was just scheduled today. The procedure will take from 3-6 hours so she will be in the surgery area from around 7:30am-noon or 3:00pm.

In preparation Anellah had an echocardiogram and a CT scan this evening. And if course, she will be back to "nothing by mouth" until after the procedure...she's not so happy about this.

We ended up staying in the ICU tonight rather than moving to a room for one night since she will be back here tomorrow night. We expect to be in the hospital about another week.

A New Week

I've got a feeling this week is going to be a little less exciting than last.
Last week started with me and a stomach flu. That combined with both big kids coming down with a cold resulted in canceling a trip to visit my friend in Oregon which I'd been looking forward to for months. Next came a cycle of literally CONSTANTLY having someone in the house asleep. Evelyn would go down for a morning nap as Anellah was waking up and then someone else would nap as Evelyn was getting up. It sounds nice but I was feeling a little stir crazy. Then there were the flames in the microwave which erupted from Capper heating a cookie...What was I doing instead of watching him? Oh, just getting the goats off the porch! Of course what happened next is already narrated on this blog- calling 911, riding in an ambulance all the way to Seattle, hospitalization, medical procedures, ICU stay, birth of a goat (with only Daniel to be there and take care of that situation while taking care of a wild preschooler and a baby who had never been away from Mom for more than 5 hours), living indefinitely in a hospital...Things are DEFINITELY going to be less exciting this week!

Today has been pretty laid back. Anellah and I got up around 8am after having a relatively good sleep...although we did have a midnight session of Curious George and Popsicle eating since she was finally allowed to have clear liquids. Other than that we were only awake for blood sugar checks and vital signs every couple hours.

This morning provided the usual rounds of plenty of doctors. The best part being an order for her IV medication to be stopped and authorization to eat soft foods!! She is a happy camper now that she can eat!

Her usual liver doctor is back today and had already discussed plans with the surgeon. He agreed that the less invasive procedure called a "TIPS" procedure will be performed. She won't have full blown surgery at this time. It is likely that she will have the procedure during this admission so I think we will be here until the weekend. That is better than going home only to come back for a full week if the larger surgery was still the plan!

Anellah is excited because Grandpa is coming to stay tonight! I am excited to kiss my bug guy, hug my little guy, nurse my little girl, and pet my baby goat this evening!

Time Warp

I have officially entered the hospital time-warp. In a sense every day feels like you just arrived since you haven’t really slept for more than 2 hours at a time and “breakfast, lunch, and dinner” are foreign concepts so everything blends into one long day. At other times I feel like I blink and hours have passed. Can someone please tell me what day it is? When answering or asking questions with doctors and nurses I’ve stopped using the words “yesterday” and “tomorrow” but rather use the day of the week since I’m never exactly sure if I’ll use the right term. For instance I thought I posted my last blog post yesterday, but nope, it was the day before.

Enough of my ramblings, what you really want to know is how Anellah is doing. Thank you for asking! I had to re-read my last post TWICE to figure out where I left off…but here is my best synopsis. After her procedure on Friday she returned to the room and slept on and off for hours. I think I slept too, I’m not really sure. She was not happy that she could still only have clear liquids but we made popsicles work. Eventually she was able to eat some real food and had graham crackers, what a treat!! For dinner I ordered her everything I thought she might like. But she wasn’t very hungry by then and just had a few bites of grilled cheese. As the night progressed she seemed to be getting restless, her stomach started feeling full and hard and within a couple hours she was exhibiting terrible pain. She had started to bleed internally again. The doctors on the floor were consulted, plenty of doctors and nurses came in and at one point I said to the nurse, “yeah you just need to get blood ordered because she is going to need it.” The “Rapid Response Team” was called and an A-MAZING nurse from the ICU came along with a fabulous doctor. They took control of the situation and although there was still a lot going on, it felt so much calmer once they took the lead. Once she was stabilized, calmed down, no longer in pain, and was receiving blood and a quadruple dose of the medication she was previously getting in her IV we moved to ICU. The ICU nurse stayed for the first few hours finishing getting things in order and making sure that the nurse who would be assigned to Anellah felt comfortable with everything. My favorite thing he did was put in a big IV that would be used exclusively for blood draws. No more phlebotomists rooting around in Anellah’s arms and feet!

Morning came and Anellah got a bit of rest here and there between tests and assessments. We have been in the ICU ever since. The ICU room itself is like a fancy hotel! It is huge and the TV system has on-demand movies, games, and TV. Being in the ICU, though, means constant interruptions (even more than on a medical floor!) and more “rules” like the fact that she can’t have balloons in her room. The biggest bummer is that Anellah is in isolation since she had a cold when we were admitted. This means she can’t leave the room (not that she has the energy to do much but she does keep asking to go on a wheelchair ride down the hall or to the playroom). Isolation also means that I can’t use the family lounge which is the only place I’m allowed to eat on the ICU so I have to leave the unit in order to eat…(not that I always obey that rule)…and the last important thing it means is that Anellah can’t have any visitors under 10 years old so I haven’t seen Capper or Evelyn since Wednesday night except for the 10 minutes I saw them Thursday morning. Anellah and I really miss them. The second big bummer is that the medication Anellah is getting in her IV means that she cannot eat anything. She is very sad about that and I can’t even count how many times she has asked to eat. Other than one meal on Thursday, 3 graham crackers, and a few bites of other food on Friday she hasn’t eaten since Wednesday.

Each day Anellah has spent a tiny bit more time awake. Yesterday she was willing to do some coloring and paint her nails. Today she was willing to play with play doh for a few minutes. These seem like little things that before that she was so tired and miserable even doing a fun activity was too much.  Today I made her get out of bed and look out the window which she didn’t want to do but didn’t protest TOO much.

I was finally able to talk to the surgeon today (yes actually today not Saturday as I’d originally been told). He said that he doesn’t actually recommend surgery based on the options we have with Anellah’s body. He had to take into consideration her complex medical needs and also the anatomy of her organs/vessels. He thinks the best choice is to do a procedure that is actually less invasive than overt surgery. It sounds like a good option but I’ve learned not to count my chickens before they hatch and I am waiting to bank on that procedure until he can discuss it with the doctors (interventional radiologists) who would actually perform it. He plans to talk to them tomorrow.

Well I have much more to write but I need to get back to our room before Anellah wakes up. Not only does she hate to be left alone but since she is on an insulin pump she is supposed to have a parent with her (though the nurse has my phone number if she really needs me.)

Oh, also, at some point, our goat Barbara had her kid which is super-exciting but I was dying that I missed it! After all, one of the reasons we didn’t go out of town was so that we could be there for the birth. Yes, I know I am grateful that God kept us near Seattle rather than heading to Oregon and that outweighs me being sad I missed the kidding but just being honest I am still disappointed.

Thank you all for your prayers and for asking about her. I’ll try to keep you all more updated. I have some specific prayers requests I’ll try to post later but Anellah’s nurse just called so it’s time to get back to the room.

Not The Spring Break I Planned

**Please forgive any typos as I am writing this on my phone**

 started Thursday morning with prayer, peace, and coffee. After spending 4 entire days at home only leaving to take Anellah to the doctor for an ear infection, I was excited for the day. Antibiotics would be kicking in and we MIGHT even get to do something fun for Spring Break since all our other plans had been cancelled.
Capper got up and went straight to playing with his trains. I was about to start fixing breakfast when I heard Anellah coughing. Ok, I guess she was still a bit sick, but a cough didn't need to dash all our plans! Then she called out for me. I went to check on her (in all honesty a bit annoyed that she was waking Evelyn up). I was immediately thankful and praised her for calling to me because she had just thrown up a large amount of blood.

Within 15 minutes the fire department had arrived, my Dad was there to take Capper and Evelyn, and Daniel was in a taxi to pick up his car from the Park & Ride. I grabbed a few essentials (charging cords, wallet, phone, and snacks), gave one last look at the microwave on the porch which was melted from flaming cookies the day before, and was off to Seattle with lights flashing.

Our experience in the emergency department wasn't terrible, it helped that Frozen was one of the movie options! Of course we saw plenty of doctors, nurses, and other staff before finally heading to our own room around 1:00pm. We spent the next 20 hours trying to rest with literally constant interruptions. She fell while going to the bathroom which meant a bunch of extra assessments every hour but I refused to allow a CT scan because it seemed like overkill. Anellah continued to have some internal bleeding through the night and needed a blood transfusion. By morning she was still being a good sport but was having a harder and harder time settling back down after each interruption. She has been an incredible sport through everything including the 7 attempts to get a blood sample. At one point she said, "I want my surgery NOW!!" In other words "I know you won't let me eat or go home until the surgery is over so let's get this show on the road!"

Finally, at 11am this morning she was taken into the operating room. The scope didn't take long as they put the camera down her throat and treated the bulging vessels. She had a slight complication as she was waking up because she is getting over a cold so she had some wheezing but eventually she was brought back to her hospital room calmly asleep. One blessing is that she did not have the fear and anxiety while waking up from anesthesia that she normally has. Now we know, for future, what kind of anesthetic can be used for her.

It's important to know this detail about anesthesia because there will be plenty more of it to come. This complication was the last "hopefully she won't need surgery" step. If she didn't have a cold right now it sounds like we would likely be having surgery during this hospital admission. As it stands, however, we will probably be here for a couple days, go home for a couple days, and then return for a week-long stay involving surgery. I should have more details on that step after talking to surgeons tomorrow.

Thank you for your thoughts and prayers. It has been hard and tiring but in each moment I have been choosing to say, "blessed be Your name." Please continue to pray for our family as we process these next steps and for rest and healing for Anellah. Thank you!