Visitors!

Grandma and Grandpa Romney came to visit us for a few days during the holiday! We love it when they come to NC to spend time with us. It was cold and rainy and Parker was sick, so we didn't get outside much but we still managed to enjoy a few days of fun with them. Shopping, bowling, a movie, a date night for Jason and Jen (Wow! Finally, a REAL date--it's seriously been months...), a trip to MagiQuest, lots of good food, games, and plenty of teasing and tickles! Thanks for the great time, Grandma and Grandpa. We loved it and already miss you!!!

Bullseye!

Shooting the new BB gun!

Christmas 2012

Throughout the month of December, we enjoy a special Christmas tradition passed on from Jason's family. We call it Advent or "Preparing out Hearts for Christmas". Each Sunday and Christmas Eve we light a candle, read scriptures, and sing Christmas songs. It helps us remember that our Savior, Jesus Christ, is the real reason for the season.

Of course, we also enjoy our other Christmas traditions each year. We had a delicious Christmas Eve dinner--ham, au graten potatoes, rolls and peppermint ice cream pie. So yummy! The kids opened up the traditional Christmas Eve present which is always new pajamas. Christmas morning came with much excitement and some sickness! Parker was not feeling well at all, but we did let him come downstairs long enough to see what Santa brought and open his presents. The kids were spoiled as usual and I think they got everything they wanted plus some!!! Kelsey spent the day listening to all her new CDs, Connor spent the day shooting his new BB gun and Parker spent the day in bed playing with his Iron Man repulser. It was a nice day spent together as a family.

Gingerbread Houses

Cub Scout Space Derby

Earlier this month, Connor's Cub Scout Troop held their first ever Space Derby. They spent a few weeks getting their rockets ready--carving, sanding, and painting. Connor made his to look like Sonic the Hedgehog, of course. On race day, Jason (he's the Cub Master of Connor's troop), showed the scouts how to wind up the rockets using rubber bands and a propeller. It was a lot of fun to watch the rockets speed across the line. Connor's rocket took third place. Check out the video below to see his rocket fly!

First Band Concert

Being in band was one of the things that Kelsey was most looking forward to about Middle School. She could hardly wait to learn to play the flute. She even got some books at the library and started looking ahead in her lesson book before school even started! She has done great so far and has picked it up relatively quickly. Her background in piano has really helped her.

Tonight Kelsey participated in her first ever band concert with the Flat Rock Middle School 6th Grade Band. They performed several numbers showcasing the things they have learned in just 2 months. Most students have never had any musical experience, so it's quite amazing that they can play together as a group in this short amount of time. They still have a lot to learn--I can't wait to see how much progress they make individually and as a group by the end of the school year. Here's their performance of "Twinkle, Twinkle Little Star".

Cub Scout Camp

Back in October, Jason and Connor went on a parent/scout camp out for cub scouts in our area. It was an overnight camp at Raven Knob Boy Scout Camp in Mount Airy, NC. They had a great time with Connor's friend and fellow Cub Scout, Nathan and his dad. They had a lot of fun doing many different activities, but archery and shooting BB guns were big hits with both boys. Connor actually turned out to have a pretty good aim with the BB guns. He kept his targets and couldn't wait to show them to everyone when he got home. He even had a few bullseye's! Jason and Connor had a great time and are already looking forward to their next scout camp adventure.

Home Sweet Home

Wow! It's SO nice to be home, to have ALL our family together. Even though we've done hospital stays several times over the last 4 1/2 years, it never gets easier and it's always hard to divide our time between being home with Kelsey and Connor, working, and being at the hospital with Parker. But, somehow we did it again, and he's home now!

Parker dressed and ready to go home!

Parker is doing great. He's not fully recovered yet, but he's getting better every day. He is still requiring oxygen and will most likely be on oxygen for a little while. That has been an adjustment--it's been a few years since we've dealt with oxygen around the house. Parker is so happy to be home (although he did admit to missing the grilled cheese sandwiches that he ate almost everyday at the hospital. They had REALLY good cheese, according to Parker)! We plan to keep him home from school as he continues to recover until after Thanksgiving. He really misses school and wants to go back so badly, but he just isn't strong enough yet. We're still trying to decide if sending him to school is worth it--we can't have him missing a month of school and a 2 week stay in the hospital every time he catches something at school. But on the other hand, we want him to have the school experience just like our other kids have.

The Child Life Department at the hospital (which is wonderful, by the way) offered us tickets to the opening night of Disney on Ice in Greensboro last night. We weren't sure we if we should take Parker or not, but after a very good and restful day, we decided to. We had a wonderful time together as a family. It was a nice way to end a very stressful and complicated 2 weeks. It was definitely a special treat for our family. Parker did great. We didn't let him walk at all (he rode in the stroller or we carried him everywhere), and of course he kept his oxygen on. He was a little concerned about what people would say about that, but we assured him that it would be fine and that many people have to use oxygen. The show was great and the kids all enjoyed it. It was fun to hear Parker's big belly laugh! It was a late night and we were all exhausted by the time we got home, but it was worth it.

Parker Update - Day 14

Today marks two LONG weeks in the hospital for Parker. But it looks like it will be the end of those long weeks later this afternoon--Parker is coming home today!!! He did awesome last night and was able to stay on the nasal cannula all night at 3 liters of oxygen. Staying at a manageable level of oxygen both day and night has been our goal for the last several days and 3 liters of oxygen is manageable for  us at home--hurray!!! Right now we really don't know how much time he'll need to fully recover to his normal health. It still might be a few weeks before he can come off the oxygen like he was before the pneumonia. We'll just have to take that day by day. But, for now, we are more than happy to deal with oxygen at home 24/7 if it means he can COME HOME! We're so happy right now. Kelsey and Connor will be so excited to see Parker at home when they get home from school today :)

Parker Update - Day 13

We made it half the night with the nasal cannula! The cannula eventually started to hurt Parker's nose and he couldn't tolerate it anymore, so we had to switch back to the mask in the middle of the night, but that's progress, so we're not complaining.

Parker did awesome today! Once he was awake, we started out with the cannula at 6 liters of oxygen. By lunch time, he was still keeping his saturations at a good level, so we spent the rest of the afternoon gradually coming down on the oxygen. By 4:30, he was down to only 3 liters! We are so happy about this and hope that he is able to continue at this level (or less) so we can come home in the next couple of days. The doctors are also very happy with his progress. His lungs are continuing to improve as are his energy and stamina. They decided to discontinue the inhaled medicine, just in case it was the cause of the mystery hives (we haven't had any today--yea!), and they felt like it had done it's job of breaking up the junk in Parker's lungs. He will continue to have the respiratory physical therapy (the "shaky vest"), but down to twice a day instead of three times a day.

The doctors have really enjoyed getting a glimpse of Parker's personality these last few days--he is finally acting more like the happy, friendly, funny little guy he is since he is feeling so much better. The doctors and nurses all love him--the nurses actually fight over who gets to take care of him--at least that's what they tell us :)

We spent some time in the playrooms again today. On our way to the big playroom this morning, Parker said it felt good to walk. He painted a sailboat and played with toys until our oxygen tank was empty and we had to go back to our room. This afternoon we went to the smaller playroom that is just around the corner from his room. He played with play dough, painted a picture and played with toys for about 45 minutes. By then he was breathing hard, so we decided it was time to head back to our room. He was pretty worn out--I think we pushed his limit today, but he handled it fine, so it's actually a good thing!

Painting a sailboat in the playroom

Parker Update - Day 12

Last night we thought we had the hives issue figured out. A no-rinse soap had been used for his bath yesterday and on Friday and it seemed like that was the culprit. After the Benadryl dose last night and a warm bath (without soap) in the tub, his skin completely cleared up, so it made sense that Parker was probably allergic to the soap. However, they showed up again today. Not quite as bad so we didn't use Benadryl and they cleared up on their own eventually. Still wondering what that's all about...

The Playroom

Today Parker got to enjoy a trip to the playroom. We stayed there for about 25 minutes and he did great! Then later this afternoon, we rode the elevator up to the 12th floor to the rooftop playground. Parker was only slightly disappointed that he wasn't strong enough to do everything, because he was so happy to be outside and playing! I am so happy that he is feeling well enough to get out of bed. He definitely seemed like himself today and there's no question that he's got more energy. The doctors were happy with all the air he is moving in his left lung now. It's still not back to normal, but it's the best it's been as of yet! We were able to use the nasal cannula all day, consistently keeping his oxygen saturation at or above what it should be. He started out at 9 liters of oxygen and we gradually made it down to 7 liters--this is great progress for him! We plan to try the cannula tonight as well, which will be the real test, as he always requires quite a bit more oxygen while sleeping. If he continues making progress like this every day, we may be able to go home by the weekend---here's hoping!!! ~ Jen

Rooftop Playground

Parker Update - Day 11 Continued

Parker's peripheral IV that he's had in his right hand since we were admitted 11 days ago finally stopped working.  The nurse took it out and boy was it stinky under all the tape and the board. Poor little guy has several blisters on his palm though. I asked the nurse to convince the doctors to let us go without an IV for now. So, as long as he drinks well, he shouldn't need another one. No more "pokes" is incentive enough for Parker to make sure he drinks a lot The Benadryl earlier really messed up our sleep schedule. We are trying to go back to sleep, but he is wide awake now--Oh well....

Parker Update - Day 11

On rounds this morning, the doctors felt like they heard even more air moving today than the last two days! We're all hoping that one of these days, his left lung is going to "pop" back open and move air normally again. We discussed what the plan is to get Parker home and it hasn't really changed. He must get down to a manageable oxygen level to be at home. We still haven't been able to reduce his oxygen level much yet, but he did use the nasal cannula a little bit more today. The process of recovery seems like it is taking forever and it is hard not to get frustrated by that.

On a positive note, we took him for a walk out on the floor this morning! He wasn't so sure about going at first and was very concerned about people seeing his underwear (good thing we had some shorts in the suitcase!). The nurse disconnected his IV for the trip and hooked him up to an oxygen tank. I carried his regular IV backpack and held his hand, the nurse pushed the oxygen tank and away we walked down the hall! He was able to walk around the floor twice before getting out of breath and tired. I was so proud of him and he really enjoyed being out of bed. While we were out, he peeked in the windows of the playroom (it was closed today), and we decided we would make a date to walk to the playroom and PLAY tomorrow! He can hardly wait :)

Other than battling some nasty hives, it was another good day. Unfortunately, because of the hives (we still haven't figured out what he's allergic to...), he had to take a huge dose of Benadryl so he's completely zonked out for the night already! Hopefully, we can figure out what's behind the hives because they are very itchy and uncomfortable for him. Praying for more progress soon so we can go home!! ~ Jen

Arts and Crafts

Parker has taken up a little hobby while at the hospital. The Child Life department here has lots of little arts and crafts projects that he can do in his bed. Here are pictures of some of his creations (made with a little help from Mom and Dad).

Parker Update - Day 10

Not much change today. He was able to switch back to the nasal cannula for a couple hours at lunch without de-saturating but ultimately had to go back to the mask. That's progress though. Dr. Williams, Parker's PH doctor, stopped by this afternoon. He has been out of town for a few days and came to get an update. I expressed to him our concerns about the screw-ups with his medications that we found the other day. He was also frustrated by that. It's hard to tell how much that may have impacted Parker's recovery. We're really strict with his medication schedule at home so he's not used to missing those meds or having them be different. Hopefully we have that all solved now but it may take a few days to get his body back to it's normal levels on the medications.

At this point the goal is pretty much to try to wean him down to a low enough oxygen level that we could manage at home. It seems like we're still a long way away from that. The concentrator we have at home can only do 5 liters per minute and so far he's requiring a lot more than that.

 I picked up the new Spider-man movie at the store today on my way to the hospital and he enjoyed watching that. We also painted a bird house, played a couple rounds of "Go Fish", and spoke with Grandma and Grandpa Romney via FaceTime. He's pretty groggy right now because he had some sort of allergic reaction to something (not sure what) that made his legs break out in a rash that was really itchy. They gave him a big dose of Benadryl which fixed it but now he's really drowsy.

 Hopefully tomorrow we'll see some more progress.

Parker Update - Day 9

The echocardiogram that Parker had done yesterday showed no changes from the previous echocardiogram done in August. This means his PH has not gotten worse--that is good news. The doctors said this morning that they can hear a very small amount of air moving in Parker's left lung (the lung with the localized pneumonia, which has not been moving ANY air for the past several days!)--this is also good news. They would like to discontinue the antibiotics since they are pretty confident that the bacteria is gone. There's just a bunch of "junk" in his lungs now that needs to be broken up and coughed up. To help with this, they started Parker on an inhaled medication once a day, in addition to the "shaky vest" which he still has to do three times a day. The doctors also plan to start weaning Parker's oxygen. He cannot come home until his oxygen need is less than 5 liters for both day and night. Currently he is requiring at least 9 liters during the day and quite a bit more than that at night, so we still have a ways to go. He has also lost 3 pounds since he was admitted! I was shocked when they told me that. But, he really hasn't eaten much because he hasn't had much of an appetite. We hope that his appetite will improve as he begins to feel better.

Parker had a good day. I felt like he had a little more energy and didn't tire quite as easily. I'm not sure if it is because Parker is starting to feel better or because the medication problem we mentioned yesterday is now fixed (or maybe both!), but it is so good to see!!! We did have some fatigue around lunch time, but it was because Parker was without flowing oxygen for about 10 minutes due to an equipment malfunction that we didn't figure out right away. His oxygen sats dropped and stayed in the low 80's until we fixed the problem, so it took him a while to recover from that. He kept busy today working on Legos, painting a pumpkin, and playing "Go Fish" with me.

In other news, my Mom and Dad are flying back to Utah in the morning :( We are so grateful they were able to be here this week to help us out. Kelsey and Connor really enjoyed spending time with them--it was nice to know they were in good hands while Jason and I had to be away. For the coming week, our church family has rallied around us and will be taking turns caring for Kelsey and Connor and providing some meals for us. We are so grateful for all of them as well! It really eases our burden just a bit to know that we will have the help we need next week.

Parker Update - Day 8

Today the general pediatrics team corresponded with Dr. Ivy from Colorado. He recommended that Parker have an echocardiogram just to make sure his PH is not any worse. He also said that it is not unusual for a child with severe PH to take a while to recover from pneumonia and that it could be weeks before he returns to his normal health, especially in regard to his oxygen level. Bottom line, Parker just needs more time to heal. It was nice for us and the doctors to have the reassurance that this is typical for a child with PH---that doesn't make the process of waiting to heal any less frustrating, however! I guess this is a lesson in patience for all of us.

Another frustration we have dealt with since we've been here is Parker's oral medications. For some reason, we always have trouble with this when we stay at the hospital. Parker takes four different oral medications several times every day. At home, we keep a very strict medication schedule around the clock and try really hard to be consistent with Parker's meds. While we've been here for the last 8 days, Parker's meds have been late several times, which is not good for Parker. We also realized last night that one of the meds was only being given at half the dose sometimes and the full dose other times! Now that we're aware of this, some of the issues we've been having make a lot more sense. We plan to have a nice chat with the doctors and pharmacist first thing tomorrow morning!

Even after being in the hospital for more than a week, Parker is still handling everything like a champ. We are always amazed by how well he does in these situations. He hardly ever complains and seems to make the best of it. He's been keeping busy doing crafts, playing with Legos, watching movies and flinging his sticky hand that Connor brought him. There's hardly a dull moment in his room!

Parker Update - Day 7 continued

Parker had a pretty good day today. Jason and I switched places around lunch time, so I hadn't been with Parker for about 18 hours. As I spent the afternoon with him, I really felt like I was seeing small (teeny tiny) improvements. His appetite was a little better, he seemed perkier, and his oxygen saturation on average was a few points higher. I sincerely hope that means were getting close to turning a corner!

Grandma and Grandpa Wardle, Kelsey and Connor came by to visit after school today. Parker was so excited to see them and show them some of the stuff he has collected over the past week. Unfortunately, he had a big cough that made him gag and he threw up while they were here, so they had to leave while we cleaned that up. All that excitement wore him plum out and he fell asleep for a while before dinner.

His kindergarten teacher, Mrs. Stone, and her husband also came by for a visit. She brought handmade cards from each of the kids in Parker's class. It was so sweet! Parker teared up a little, trying very hard not to cry, but I think he loved that his friends from school did this for him. There were several crayon drawings of Spiderman and Ironman, which Parker loved. He also loved that each card had his name on it--he went through each card to make sure his name was spelled right :) This special visit and the cards was a great way to end the day. Thank you Mrs. Stone's kindergarten class!!

Parker Update - Day 7

Well, today marks one week in the hospital for Parker and nearly two weeks of being sick with pneumonia. We are a little frustrated and discouraged that things aren't changing. Parker has been under the care of the general pediatrics team throughout this hospital stay and they seem a little baffled by the situation as well. Since this is our first experience with a very serious sickness since Parker's diagnosis 4 and a half years ago, this is new for us as well. It's hard to know if what Parker's experiencing is "typical" of a child with PH who gets pneumonia or not. This morning, when some of the doctors came around still puzzling over Parker, Jason suggested that it might be helpful to get an opinion from one of the top pediatric PH doctors in the country. Parker's cardiologist, Dr. Williams, has consulted with them in the past just to make sure he was doing everything right for Parker. Parker and I actually met one of the doctors (Dr. Ivy from Colorado) when we attended the PH Conference in Florida this past summer. So, we'll see if anything comes from that. Parker also got moved AGAIN last night. He is on the regular floor again, but only because some really sick kids had to come to the PICU last night and they had to shuffle things around. Parker is considered the most stable, so they moved him. We're fine with this as long as he continues to get the extra care that he still needs and that the nurses can deal with his high oxygen need.

Parker Update - Day 6

Still not much progress today. The doctors repeated the chest x-ray, which was a little hazy again, so a chest ultrasound was ordered to look for fluid in the lungs. Apparently, there is a small amount of fluid, but the doctors were not concerned and said that it would not change the plan. Today is day 10 of antibiotics, but the doctors may continue them since he is still requiring so much oxygen. Using the mask today went much better than the cannula. The cannula was really bothering/hurting Parker's nose, which is understandable with such a large amount of oxygen flowing through it (we moved up to 15 liters yesterday!). Parker was happy and playful today, but tires easily. We're hoping we turn a corner soon!

Chilling with the oxygen mask

Parker Update - Day 5 Continued

Well, it looks like Parker is going to take his time getting better. We had hoped that this would be only for a few days but this is now his sixth night in the hospital and while the x-rays show that the pneumonia is clearing, he has made little to no progress on maintaining his oxygen saturations. We finally switched to a full oxygen mask instead of a nasal cannula. This helps a lot but is more awkward for him to deal with.

I guess we need to just sit back and let him get better on his own schedule. They did finally rule out any sort of virus that might have caused this. So it looks like we're dealing with a straight bacteria pneumonia. It's a real doozie though and seems to put up quite a fight against the antibiotics. So I think we're looking at several more days in the hospital :( ~ Jason

Parker Update - Day 5

Trying to keep busy

We've moved to the intermediate care floor (a room finally opened up...). It's a little quieter and more private which is nice, and Parker's still getting the extra care and attention that he needs. Parker is doing OK, but he's very weak and he's about "done" with being in the hospital! His least favorite thing right now is what we've come to call the "shaky vest", which wraps completely around his chest. Tubes are then connected to the vest and a machine that shake Parker up. He has to do this three times a day. It supposedly is part of respiratory physical therapy and it should help break things up in his lungs. We're hoping for some progress so we can work on going home!

The "shaky vest"

Parker Update - Day 4

Still hanging out in the PICU. Parker is doing OK, but he's requiring a large amount of oxygen. The doctors are saying he just needs time to heal. It looks like we'll be here for a few more days.

On a good note, my parents are flying in later today! We are so grateful for their willingness to come out and help us. It is a major stress reliever to know that Kelsey and Connor are taken care of.

Parker Update - Day 3 continued

Oh, man. I'm so relieved that Jen's parents are once again coming to the rescue to try to fly out here tomorrow. I'm grateful that they're retired and that Jen's brother is an airplane mechanic who can get them on standby flights so they can come here quickly on such short notice. I was really worried how I was going to be in four places at once next week. I can usually mange being in two places at once. Three if I really stretch. But trying to be at two jobs, home with Kelsey and Connor, and at the hospital with Parker all at the same time next week was probably beyond the scope of my superpowers. Now we can let Parker take his time at the hospital, I can teach and design a show next week, and Kelsey and Connor can enjoy their two days off from school. Now we just need to pray that the Wardle's are able to get on both flights tomorrow without too much hassle! ~ Jason

Parker Update - Day 3

Two steps forward and three steps back. The good news is that the latest X-Ray shows that Parker's lungs are clearing up some. The bad news is that the X-Ray was taken at 4:00am while they were preparing to transfer him to the PICU because his oxygen sats couldn't be maintained with less than 5 liters. The Intermediate Care beds were all full so four and a half years after we last left, we're back in the PICU. I have a love/hate relationship with this place. I don't exactly have fond memories of the PICU but the staff here are so good at what they do I feel so much better about having these people caring for him. Dr. Mou, who brought Parker back from the brink the last time he came to the PICU, was even here as the Attending MD when we arrived. ~ Jason

Blowing things helps Parker's lungs

Pneumonia + PH = 1 sick little boy

This sweet little guy, who looks like he's having a great time, has actually spent the last 72 hours in the hospital. I think he wanted to set a record for us by being admitted to the hospital twice in one month! Definitely NOT what we had planned for the week...

Last Thursday, Parker was sniffling quite a bit most of the day. By bedtime, he had a low grade fever, which got higher as the night went on. We kept him home from school on Friday and he continued to have a major runny nose and a fever. At one point, he had a fever of 103.5. We had a really hard time getting his temperature under control--we really hate it when Parker gets a fever. A fever raises the body's temperature which causes the heart to work harder, which means an elevated heart rate. His little heart was beating so fast! Because of his fast heart rate, we put Parker on oxygen so his heart wouldn't have to work so hard (we had to bribe him with a dollar to wear the cannula--he doesn't really like it...). Because of his symptoms we thought he possibly had RSV or the flu, so we made an appointment to take him to the doctor first thing Saturday morning.

On Saturday morning the doctor said Parker had decreased breath sounds in the lower left lung but she didn't hear any crackles. She said it could possibly be pneumonia, but agreed that we should have him tested for the flu and RSV. The flu test was negative and we would have to wait a few hours for the RSV test to come back. The doctor said she was comfortable treating Parker with antibiotics for possible pneumonia if the RSV test was negative. However, after some discussion, we decided to have a chest x-ray done so we knew for sure what we were dealing with. She had us go down the street for the x-ray and then said she would call later with the results.

After the x-ray, Parker and I headed back home, but before we could make it there, the doctor called with the results: Pneumonia. She asked that we come back to the office for a shot of antibiotics (Rocephin). Parker was not happy about that! By the time we got home he was having chills and feeling pretty miserable. For the next few days, we kept him isolated in bed on oxygen.

By Sunday night his temperature was back to normal, but he was still requiring oxygen and he didn't have much of an appetite. We continued to make him rest in bed--he watched a lot of movies! He started coughing occasionally sometime on Sunday. By Tuesday, he was coughing more and requiring even more oxygen (about 1.5 liters during the day and 2.5 liters at night), so the doctor thought it would be best to see him again.

This time, Parker actually looked sick--he was very pale and not very active. The doctor felt his lungs sounded the same, but because Parker had had the Rocephin injection and 3 days of oral antibiotics, he felt that Parker should have been improving. He ordered another chest x-ray which showed no changes from the previous chest x-ray. The doctor suggested giving Parker another Rocephin injection and following up with him in two days.

On Tuesday night, we noticed Parker's temperature was going up again. It wasn't as high as it had been before, but it wasn't normal for Parker. He also continued with a wet cough. On Wednesday (Halloween), we kept a close eye on him throughout the day. We let him come downstairs and help (watch) Mom carve his pumpkin.

Later, while Jason, Kelsey and Connor were getting ready to go to a church Halloween Party, I decided to check in with the doctor about the cough and his temperature. The doctor really didn't like what I was describing; he thought we should have seen some improvements by then with 2 Rocephin injections and 4 days of oral antibiotics. He told me that if Parker's temperature went above 101 degrees or we couldn't keep his oxygen saturations above 94% on 3 liters of oxygen, then we needed to go to the hospital. Otherwise, he would see us for a follow-up appointment in the morning. About 30 minutes after I hung up with the doctor, I checked Parker's temperature again and it was 101.3. Great. I decided to go ahead and pack our bags and then check his temperature again just to make sure. Parker had his heart set on wearing his Ironman costume, so I let him put it on for a few minutes while I got everything ready to go.

After our bags were packed, I checked his temperature again and it was 101.8. We needed to go to the hospital. On Halloween. So, not only was he missing out on trick-or-treating, he had to spend the night in the ER. Not surprisingly, he was admitted to the hospital a few hours later.

He has a pretty severe case of bacterial pneumonia. He is receiving 2 different IV antibiotics and he is requiring a large amount of oxygen. But despite all of this, he is doing OK and is in good spirits. He has such a laid back and easy going personality that he just takes everything as it comes. He doesn't complain or fight, he just accepts what has to be done and does it. He is such a brave little boy. Jason and I are taking turns being with him at the hospital and caring for Kelsey and Connor at home. We've done this so many times, it almost seems like we've got it down to a science. Parker seems to be making small improvements, but he is still very sick. Pneumonia can be very serious for a healthy person, but it can become life-threatening when someone has an underlying health condition. Especially one that already involves the lungs. We're hoping Parker will be able to come home in the next day or two, but he will have to continue to be on oxygen as his body heals (he will not be excited about that...). Hopefully, he will recover as quickly as possible. Thank you all for your prayers and support. We truly appreciate it!

Parker Update - Day 2

They've determined that it's bacterial pneumonia. He's on two different antibiotics (IV) for now. We're not really seeing major improvements yet, but the doctor said it wold be at least 48 hours until they would know if he is responding appropriately. He was on 3 - 4 liters of oxygen all day yesterday but his sats still only lingered at about 92 - 94. They also had to bump him up to 5 liters last night again only to maintain sats of 90 - 91. Even though his sats are low, he does not seem to be having any distress or difficulty breathing ( I think that's the only reason we're not on the intermediate care floor, or the PICU. Hoping for greater improvements today. Parker is handling everything like a champ. He is such a brave little boy.

Parker Update - Day 1 continued

Well, Parker got through the first 24 hours at the hospital. It looks like he'll be there for at least another day. Maybe longer. Last night was pretty rough but he seemed a little better today after a few rounds of IV antibiotics. Pneumonia is bad enough but that on top of his Pulmonary Hypertension makes for a really serious problem. I really hope this last month isn't indicative of what the rest of his school experience is going to be. We knew that there was a risk sending him to school with so many kids who get sent to school when they're sick. A little sniffle for a normal kid can be life-threatening for Parker but he loves school and we really want him to have that experience. Still, two hospital stays in one month is not great. We've been counting ourselves lucky that we've kept it at around two per year for the last few years! Ugh.  

In other news, November is Pulmonary Hypertension Awareness Month. This is a disease that often goes misdiagnosed for a long time. For more information go to www.sometimesitsph.org/. ~ Jason

Parker Update - Day 1

Bit of a rough night. Parker was on 5 liters of oxygen most of the night and could only keep his sats at about 90. Thought we might have to move to ICU or intermediate care, but they decided to wait since he wasn't having any distress. I think we're in for a long day!!!

Parker Update

Day 6 of pneumonia for Parker. We tried to avoid it, but he's being admitted to the hospital for IV antibiotics. Looks like we'll be here for a few days...

Halloween 2012

Cutest cowgirl I've ever seen!

Connor as Sonic the Hedgehog

Parker as Ironman

Happy Halloween from the Romney Skeleton Crew!

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A Little Bit of Déjà vu

This week we had one of those experiences with Parker that we dread and try not to think about, but this time around it wasn't a completely "new" experience (see a strikingly similar story here).  We've been through this once before, hence the feeling of déjà vu. However, experiencing it before doesn't make this incident any less scary, but it did help to know what to do and what to expect. Thankfully, everything went pretty well and Parker is fine. But, if you'd like to hear the story, here it is:

On Wednesday afternoon I picked up the boys from school and we headed straight to a routine check-up for Connor with his asthma doctor. They got us back quickly and the appointment went well. When we were nearly finished, Parker stood up in front of me and I noticed a dark stain on his blue shirt. I said, "What's that on your shirt?" and I pulled him closer to me. As he got closer, I knew what it was before I lifted up his shirt to look at his undershirt--blood. I saw right away that he had a nice sized hole in his IV line that was leaking blood and medicine. I think I said, "OK--we have a serious problem here--we've got to get to the hospital!!!" I stopped the pump and clamped his line above the hole and called Jason to let him know we were on our way to Brenner Children's Hospital.

As we've mentioned in other posts, Parker receives a medication called Remodulin via a permanent IV line (a broviac catheter permanently stitched into his chest) 24 hours a day. This medicine should never be stopped or interrupted because it could potentially have very serious or even fatal consequences. So, having a hole in the line that administers the medicine is an emergency. We had to get to the hospital fast and have them start a peripheral IV on Parker so we could restart the Remodulin. We arrived at the hospital about 20 minutes after I discovered the hole and a peripheral IV was placed shortly after that in Parker's arm (with only 2 sticks this time!). The next step was to figure out whether to repair his broken line or replace it with a new line. Unfortunately, a few hours passed before much progress was made and by that time the blood in that line had clotted making the line unusable. So, the decision was made to have Parker undergo surgery for a new line the next day.

After more than 4 hours in the ER, Parker was finally admitted and we headed upstairs to our room for the night to get some rest. During this whole time Parker was not allowed to eat or drink because of the possibility of having to do surgery--he was so hungry and thirsty. After the decision was made to do surgery the next day, they did allow him clear fluids until midnight so he had a popsicle and some apple juice before going to sleep. He slept pretty well in spite of all the interruptions throughout the night. Mom, on the other hand, couldn't say the same about her night...

On Thursday we spent the morning waiting to hear when Parker would be sent down to have the new line placed. Parker watched TV, visited the playroom and even worked on his kindergarten homework. (The night before when we were waiting in the ER he had been very disappointed that he couldn't do his homework, so we made sure Dad brought it to the hospital on Thursday so he could work on it. He LOVES school!) Finally, we headed down for the surgery around 12:30pm. Parker was so brave as we waited in the holding room that he has become all too familiar with (we were just there in May!). After all the talking was done and all the papers were signed, they gave Parker the "sleepy" medicine (Versed) that turns him onto a giggle box :) He giggled and giggled about everything. Then it was time for the surgery. About and hour and a half later, they finished the procedure. Everything went well and he tolerated it just fine. After another half hour in the recovery room and an x-ray to make sure his line was in the right place, they allowed me to come back and hook up his Remodulin pump to his new line.

We stayed at the hospital for a few more hours to make sure the line was working properly and to make sure Parker didn't have any complications from the surgery. He seemed to recover fairly quickly from the anesthesia this time, but remained very croupy from the intubation tube. It scared him a little bit when he realized he couldn't talk very well. I finally told him he didn't have to talk, he could just nod, and that seemed to help him not be so sad about his voice. After a while, he was ready to eat! He ordered cheese pizza and chocolate pudding from room service. He said it was "Yummy!". He was discharged shortly after that and we made it back home by 7:30 last night, just in time to go to bed.

He is still recovering today--feeling tired, groggy and a little croupy--but he's doing just fine. Although we don't like these kind of experiences, we're grateful that everything went reasonably well. We're hoping that it's at least another 2 years before this happens again!!! Thank you for all your prayers and thoughts throughout the last few days--we felt them all. We're so grateful for our loving Heavenly Father who constantly gives each of us the strength we need to make it through these stressful and scary times and for our sweet Parker who is undoubtably the bravest boy we know!

12!!!

On Monday Kelsey celebrated her 12th birthday! It is hard for us to believe that it has been 12 years since we became parents, but somehow the years have flown by! 

What a beautiful and very sweet young lady our Kelsey has become. We are so proud of the person she is and the great example she is to all around her. She chose to stay home this year and have her favorite dinner, broccoli, chicken and rice casserole. She requested a chocolate cake with nuts and Moose Tracks ice cream. It was all very yummy and she loved it.

Of course, she could hardly wait to open her presents! She was very happy to receive some money, books, and a Kidz Bop CD. She was very excited to receive a new radio/CD player/alarm clock--apparently she is too old for her Cinderella alarm clock ;)... And with the help of both Grandparents, she received a new desk for her room--apparently she is too old for her cute "little girl" pink vanity as well...

She is now officially part of the Young Women's program in our church (which is hard for me to believe as well). We are very excited for her to start this program and be part of it for the next 6 years. Happy Birthday, Kelsey!!! We love you so much!!!

Another Milestone

Today seemed like one of those milestone type of days...

The day when ALL our kids are old enough to go to school!!!

Parker is now a BIG kindergartener. He has been looking forward to this day for a LONG time! You can see the pure joy on this kids face--he was so excited about going to school today. It has been a long, stressful process to get everything in place for him to be able to go to school, but fortunately, everything fell into place. On the way home from school today he told me 3 times that school was fun and when we pulled into the garage he exclaimed, "School is AWESOME!" His favorite part of the day was the hot potato game that they played and PE.

Connor is now in 3rd grade--old enough take the EOGs (end of grade tests). He looks so grown up in this picture! A few weeks ago he told me he was half excited for school and half not excited. Then a few days after that he declared his whole body was excited about school! I hope he keeps that enthusiasm for school throughout the year :) He had a hard time deciding what his favorite part of the day was, but he did enjoy art and lunch. 

Kelsey started 6th grade, which in our school district is middle school. We do not feel old enough to have a middle schooler. When did this happen?!? She has been SO excited about going to middle school--I thought she would be nervous about a large school, lockers, a schedule with different periods, etc. But, she wasn't. SHE DIDN'T EVEN WANT US TO BE AT THE BUS STOP WITH HER, because you don't do that in middle school, apparently!!! When did she grow up? I'm not sure I'm ready for this, but I'm grateful that she loves school and does so well. Her favorite part of the day was Social Studies (because they got to do a fun activity with magazines, maps, and globes) and lunch, because she was STARVING!