Sunday, March 1, 2015

32 months old & finally home!


Phew! We are all together under one roof. Maisie was discharged today with amoxicillin, albuterol nebulizers and oxygen. She was doing pretty well on room air but at home Maisie needs between 3/4 to 1 liter of oxygen due to our altitude of 9,000 feet. 

Maisie is nearly back to her usually feisty self. She is a little short on energy and and only wants to eat junk food- but we will take it. James is doing great and had an awesome time with Jimmy's parents. They were so helpful with James, allowing us time to be with Maisie while attending to work and home obligations; during lots of crazy weather and many unknowns day to day at the hospital. The little dragons are both very happy to be home. James is enjoying playing with Maisie's Elmo balloons and Maisie is trying to not get caught up in the oxygen tubing. 

This was such a long week; actually, nearly two weeks now if we count when James came down with what we now know was RSV. We are thankful for flexible work schedules and family who was able to pitch in at a moment's notice. We are tired and fighting off the same infection that made both of the kids so ill. We are thankful for the many thoughts and prayers and well wishes for our family during this time. We feel loved and cared for, and we are very glad that Maisie has recovered enough to be treated at home. We are ready to sleep in our own beds, clean our house, and find normal again. 

***
Maisie:
Book: Berenstein Bears go to School
Song: She loves the songs from Frozen
Words: No, mine. She also has started to say some interesting words/phrases like "it's complicated" and "it's dangerous". Sometimes we have no idea where she comes up with things. 
Toy: Little people, dinosaurs, baby doll. 
Food: cheese, cookies, pancakes, waffles, eggs, avocado, fruit snacks, blueberries, beans, rice, tortillas, quesadillas, Indian food, chips
Animal: dog, kitty, monkey
Time of the Day: taking a "blath"
Activity: climbing and running
Color: blue
Clothing Size: 12-18 months, 18 month PJ's. 
Shoe Size: 5.5-6
Weight: 21lbs at last checkup on 12/11/12, but she probably lost some during this last hospitalization. We will see during the checkup. 
Height: 32 inches
Number of Teeth: 19+



James:
Book: ABC by Dr Suess
Song: "Stompy the Bear" by Caspar Babypants, Anna's songs in Frozen
Words: James is pretty talented with learning other languages. He can say "please", "thank you", and "yes" in French. He can say "hurry up, sister" in Italian. 
Toy: Currently James likes the click-clack ponies, his num-num balls, and any football. 
Food: pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta, rice, pizza, chili, tortillas, cheese, Indian food. 
Animal: dragon or bear
Time of the Day: bathtub time.
Activity: putting away toys
Color: green
Clothing Size: 12-18 months. James is wearing 18 month PJ's now, and we are getting to 12-18 month pants due to length. 
Shoe Size: 5.5, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 6.5 extra wide. 
Weight: 20lbs at last checkup on 1/22/2014
Height: 31.5 inches
Number of Teeth: 19+




Friday, February 27, 2015

Waiting

Maisie is still in the hospital. She was admitted Sunday night with a confirmed case of RSV and bronchiolitis. We thought for sure by now that she would be home, and while we had a few close calls to discharge, Maisie is still here. She is where she needs to be and we are confident in that. 

She spent the beginning of the week with high temps and 3 liters of oxygen and they were able to wean the oxygen down to 1-1.5 liters. At times she got down to 1/4 liter but that was short lived. Her temperature has been hovering around 99-100 and everyone expected it to be gone by this point. On room air, Maisie drops to the low 80's within a matter of seconds; and at this rate Maisie is not able to go home even with oxygen. She would need to have consistent saturations in the 90's and oxygen less than a liter here preferably before we are released. Today they started steroids in addition to albulterol and CPT to help Maisie overcome the roadblock she is at. We discontinued Hypertonic Saline as we can't administer this at home. 

To top off her respiratory complications, Maisie became very dehydrated over the last few days due to her RSV and the fevers associated with it. Dehyrdration causes Maisie to have trouble coughing and loosening the secretions in her lungs, which causes breathing trouble and low saturations. She was drinking moderately well enough but her fluid intake was not sufficient to compensate for the fluid loss. Her intake decreased over the week and yesterday we opted for an IV to help improve Maisie's hydration and help move the secretions from RSV. 

Finally, we found out that Maisie now has an ear infection so we started antibiotics. They are watching her closely. 

All of this combined means that we are still in the pediatric wing, at least for tomorrow and perhaps maybe longer. We really have no idea. 

And James? He has been having a ball with his grandparents all week and is feeling much better. It still floors us to think that his lungs are so much better than Maisie's, given his history.

Tuesday, February 24, 2015

RSV

After two years of Synagis shots and doing everything we could to keep our former preemies quarantined during flu season, both came down with RSV or Respiratory Syncytial Virus. 

We thought they had just acquired a bad cold, most likely exposed at some point during James's MRI at PSL late last week. James came down with symptoms first and was treated first. He then passed it along to his sister, who unfortunately has the more fragile lungs of the two. 

Maisie went downhill late Sunday night. She was unable to uphold her oxygen saturations during nebulizer treatment and would go into the 60's, requiring more oxygen to get her oxygen to sufficient levels. Her hands and legs were ice cold, a sign that she was not perfusing effectively. Maisie went from needing 1 liter of oxygen to 4 liters in a matter of an afternoon. 

We made the decision to go into the ER late Sunday night. We prepared our things and got James ready to spend the night with Jimmy's parents. Jimmy did a quick run of the driveway with the snowblower, and after buckling the kids in their car seats we were off. 

The roads were manageable but icy so we took our time heading to Denver. The closest pediatric ER was Swedish and we were on our way. Maisie started out fine but during the drive she became lethargic and sleepy. I hooked her up to the pulse ox and saw that she had oxygen saturations in the 80's at 4 liters of oxygen, the max in our tank. Her heart rate was in the 30's and I did everything I could to keep her awake and responding to me. I kept the pulse ox on her and monitored her the whole way down, knowing that we were on a really fine line.  Luckily Maisie responded pretty well, watching videos from Frozen and looking at pictures of she and James playing together. 

By the time we got to the ER, the team checked her in right away and made sure she was stable. It turns out she had a very high fever, which must have materialized during our preparations and our trip down but was masked by her cold extremities. She had a temperature of 105.9 upon admittance and was immediately given Ibuprofen and a nebulizer and oxygen. We were told she would be admitted and that they would run tests for the flu and RSV. 

We spent late Sunday night, Monday, and Tuesday in the hospital with Maisie. She had a positive RSV test (and therefore, James had it also). She had fevers ranging from 99-104.5 and was on a pretty steady 3 liters of oxygen for the majority of her stay. Only today have they been able to wean on her oxygen and make progress towards a possible discharge later this week. She is lethargic, at times restless, but doing pretty well. 

The hospital staff is only doing one new nebulizer medicine, called Hypertonic Saline, which has really helped Maisie. Additionally we are doing the "Vest" chest physiotherapy to help loosen secretions in the lungs. Both have been helpful. Otherwise they are continuing all of the treatments that we had been doing at home. It is nice to know we were on the right track, but tough to be in the hospital with one kid. We are lucky to have Jimmy's parents who are still watching James while we are with Maisie. Thankfully James is pretty much recovered from his RSV and pneumonia. 

I wish we never had to do this RSV a business but it is another cost of having preemies. The nurses here say that even a term infant doesn't have the same risk factors as a preemie / former preemie when faced with RSV. I only wish we could have avoided it, but with the number of people infected right now and increase in hospitalizations currently it doesn't surprise me that we came down with RSV. 


Sunday, February 22, 2015

Sick little dragons

We have been stuck at home with a big winter storm and two very sick little dragons. James's fever and stubborn cough turned into pneumonia and he went on nebulizers and antibiotics Thursday night. He needed supplemental oxygen to keep his saturations up through the worst of the illness and continues to use oxygen while sleeping. James started to feel better by Saturday evening but he is still not 100%.  

We were hoping that Maisie might be able to escape this one but by Thursday night she started to have the fever and a light dry cough, which mimicked the beginning of James's symptoms exactly. She continued to go downhill, and so we worked on getting emergency prescriptions and oxygen refilled at the last minute Friday night to prepare for a weekend at home. Maisie went on the same plan as her brother; nebulizers every four hours and antibiotics, Tylenol to help bring down her fever and make her comfortable, saline and suctioning, cool mist humidifier, and oxygen to keep her saturations up. 

We setup a triage in the living room so we could better treat and manage the little dragons' symptoms over the weekend. Luckily we have been able to effectively treat both kids with our in-home equipment. We are also dealing with a lot of snow and very frigid temperatures so we have all fingers and toes crossed that things continue to improve here and no additional treatment is needed. 

Wednesday, February 18, 2015

Valentine's Day and other goings-on

We've been up to a lot recently. Here's a break down. 


1. James had an MRI to check out the status of his spine and the arachnoid cyst. Everything looked great and there was no evidence of the cyst reappearing on the spine. James's neurosurgeon couldn't even tell where the operation or cyst had been in the first place! We don't have to follow up from a neurosurgery perspective for another year. 

2. James checked in with the spasticity clinic to see what progress he has made since the Botox and Phenol injections. The providers all were very impressed with James and felt we didn't need to go back for another 6 months. He got his new orthotics and we are hoping for the best with this pair!

3. Our trip to PSL was James's 13th time being under sedation. Boo. While everything went pretty well and there were minimal complications - he only had a minor vomiting episode in recovery - it is becoming apparent to me that we are quite too familiar with this process. The forms, the questions, the protocols. The paperwork doesn't have enough space on it for James's patient history and I find myself referring to a list versus going off the top of my head to avoid missing something. We know all of the anaesthesiologists, doctors and most of the nurses. While we are certainly on the healthy side (knock on wood) and most of his procedures were done in the NICU, I sincerely hope that we continue to trend downwards. 

Personally I never had surgery until my cesarean when the babies were born. I'd like to hope the little dragons have less medical difficulties as they get older and don't have to be "frequent fliers" at PSL or Swedish for any reason. Really, things are pretty good. Both kids aren't on any type of medication and they are really stable medically given their fragile start.  

4. We semi-celebrated Valentine's Day. My parents dropped by and gave the little dragons gifts which they are very much enjoying. We did a craft project and ate chili. It was low key but we had a good time as a family. 

5. We got a few feet of snow and enjoyed being snowed in. We are so thankful for our flexible schedules and being able to work from home in times like these. Over Sunday night to Monday evening we got over two feet of snow  in addition to the residual stuff that was left from prior storms. The little dragons got bundled up in their winter gear and went outside for a brief experience in the snow. James didn't like it and Maisie made a snowball and dumped it on James's head. We were inside five minutes later. 

6. Every time we are at the hospital it seems like we pick up some mystery illness. Last time Maisie got a fever and was under the weather for a few days. This time it's James. He is definitely not feeling well and we are watching him closely. 

Sunday, February 8, 2015

Cookie Monster Ball


There's one ball in the house that doesn't get love from James. A little from Maisie, on occasion - but rarely. James is terrified of the fuzzy blue ball with three eyes that he named "Cookie Monster Ball". 

The little dragons got this ball for Christmas. It shakes and wiggles and screames "I'm alive!", but there isn't a good way to turn it off or on and it manages to scare the living daylights out of all of us when it is around. 

One day, James brought Cookie Monster Ball to me and asked to turn it on. I was struggling to get it to do anything, and I told James that- but just as I was about to toss it aside the ball screeched and turned on, wriggling and shaking and squealing. I jumped and threw Cookie Monster Ball across the room. James screamed and crawled away as fast as he could, shaking and visibly disturbed. We hid the horrible ball and figured it would be best to stay hidden. 

That evening, James decided he wanted to see Cookie Monster Ball again. He had been avoiding certain rooms all day as he believed Cookie Monster Ball was hiding and waiting for him- but now he was asking to see the only thing he feared. So, thinking that James might be over his fear we brought the ball out again and James had another meltdown. 

Cookie Monster Ball has been "hiding" ever since. James has asked to see him but we haven't felt like the time is right. Besides, James has dozens of other balls to play with. James still loves to tell his friends and family all about Cookie Monster Ball - he especially loves to call his Auntie Ca in Washington and fill her in on Monster Ball. 

Maisie, on the other hand, is afraid of random things. It changes a lot. Right now it's eating. Sometimes it's ghost bugs, taking pictures, or zombies. 


Monday, January 26, 2015

31 months old & Botox / Phenol

The little dragons are now over the 2.5 year mark and inching closer to 3 every day. It's a little scary for us but we are so proud of them and all of their accomplishments. I especially love how great they play together and how much of a team they are. 

Thursday last week James went in for a minor surgical procedure; he had Botox in both gastrox (calf muscles) and Phenol injections in both hamstrings to combat his spasticity. James was fitted for new orthotics, SMAFO's (Supra Malleolar Ankle Foot Orthotics) while he was under anaesthesia. The whole procedure was under an hour; we spent a lot more time in Pre and Post-Op than anywhere else. 

The Phenol began to work right away and the Botox will show its effectiveness after 7 days. We could tell inmediately that James was more flexible; he didn't seem to lose any strength or endurance from the procedure. We'll see the final results when the Botox fully kicks in later this week. 

Our Physical Therapists were both happy with the preliminary results. James doesn't seem too impacted - in fact, he is as active as ever; he seems more comfortable sitting and has spent lots of time figuring out new ways to climb over furniture and in/out of chairs. He is pretty darn resilient. 

James found the ball pit at RMHC. 

***
Maisie:
Book: really anything right now - no favorite. 
Song: Maisie has seen Frozen a few times and is really into a few of the songs. We're late to the game on this one and I can't even name them. She also loves Mother Goose Club on YouTube and Caspar BabyPants. 
Words: Maisie is great at picking up words and implementing them into sentence use. The other day she asked if I was texting; last night she pointed at Jimmy and I and told us, "you're my favorite Daddy, and you're my favorite Mommy". Maisie struggles with "I, me, you", but she's working on it. 
Toy: Little people, dinosaurs, baby dolls, and anything else she can play make believe with. 
Food: cheese, cookies, pancakes, waffles, eggs, avocado, fruit snacks, blueberries, beans, rice, tortillas, quesadillas, Indian food
Animal: dog, kitty, monkey
Time of the Day: taking a "blath"
Activity: climbing - it's harrowing for us but really fun for Maisie. 
Color: blue
Clothing Size: 12-18 months, 18 month PJ's. 
Shoe Size: 4 
Weight: 21lbs at last checkup on 12/11/12
Height: 32 inches
Number of Teeth: 19+


James:
Book: ABC by Dr Suess
Song: "Stompy the Bear" by Caspar Babypants
Words: James is doing very well with sentence development. He loves to describe what's going on and what he is doing. He also likes to get Maisie in trouble. Yesterday he told us, "Maisie shut the door to the play room", which she did. 
Toy: Balls continue to be the favorite and James has names for all of them. He also likes blocks, fire trucks, and other things he knows as "mine". He is possessive and gets angry when Maisie uses his stepstool, walker, or other things that are distinctly his. 
Food: pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta, rice, pizza, chili, tortillas, cheese, Indian food. 
Animal: dragon or bear
Time of the Day: bathtub time.
Activity: any kind of puzzle - he especially likes to figure out getting balls and toys in and out of a container. As you might imagine the possibilities are endless. James is amazing at putting away toys. 
Color: green
Clothing Size: 12-18 months. James is wearing 18 month PJ's now, and we are getting to 12-18 month pants due to length. 
Shoe Size: 4, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 5.5 wide. 
Weight: 20lbs at last checkup on 1/22/2014
Height: 31.5 inches
Number of Teeth: 19+