Trip Down South

We finally got to take our trip to Arizona.... after Reece got sick and was in and out of the hospital for the past 4 months we had to postpone things until now. We left May 10th and the temperature was about 65degrees here and when we arrived in Mesa it was 98degrees!!  Clinton was in heaven :) As we walked off the plane i could feel this HUGE heat wave hit my face, it was was kind of nostalgic in a way. We had a great time and got to see lot of family and friends. It kind of felt like being home since we had lived there so long. The kids had a great time and were so exhausted by the 8th day. We are back home and the kids are catching up on sleep as am I!! We miss the nice warm sun and hope to visit again.

 

 

 

T and Me waiting at the airport just about to leave for AZ

our 2nd day in Mesa, we went swimming with the cousins 

Reece sun bathing!!

Turner discovered windows and feel in love!

Mothers day after church (hence the messy hair!)

We got to drive by the new Gilbert Temple, so Beautiful.

Reece was having a blast riding this with her daddy she didn't want to stop

Reece has NO fear of dogs and i was slightly scared when i saw him.... but he is super sweet

HOT day spent outside at the splash pad in Chandler.

I just love out intent he was looking at this butterfly

Reece and Talan, no they are not about to kiss, they are yelling "NOOOOO" at each other!!

5 Times Stronger.....

Our fifth hospital stay since Jan 21^st. Reece has had a rough year and our family has had to endure a lot of heartache watching her go through this difficult time. Less than a month after she got out of the hospital after having RSV, Turner got a runny nose AGAIN. I again thought “Reece is bound to catch this”…. But I was hoping that this would pass right past her. Sunday April 8^th Reece woke up with a nasty running nose and a horrible cough. She cough’s ALL the time but this was a cough I knew was going to put her in the hospital. Monday her coughing and running nose got worse and she was sneezing almost as much as she coughed. I was giving her Neb treatments a couple times a day. Tuesday morning she woke up very wheezy and coughing around 4am we started Neb treatments and within an hour she was wheezing and coughing again. All day Tuesday I had to give her treatments about 2-3 hours apart. If I’m giving her those more than 4 hours the Dr told us to go to the ER. Just after dinner time we had the Elders come over and help Clinton give her a blessing. She was so exhausted from all her coughing and wheezing all day that by 6pm I gave her a bath and she had fallen asleep in Clinton’s arms. Later that night she threw up 2 times and I spent the entire night with her up every 2 hours coughing. At 6am she woke up crying and coughing/wheezing and throwing up. I then told myself “I have to take her in” I didn’t want to b/c I knew she would end up back in the hospital.  As much as she needed to go, it breaks my heart each time we go back.

I got to the ER around 6:30am and her oxygen was at 83-85% not the best # to see. They gave her an IV, drew some blood, tested her for RSV and Influenza and did a chest X-Ray.  She was negative for flu and RSV but her X-ray showed early pneumonia and a collapsed left lung (which she had back in Feb).  They admitted her and we were put up in the ICU by 8:30am the Dr came in and checked her out and told me the plan. Reece was on 6 liters of Oxygen and her sats were dropping. At 10:30 am the Dr came back and checked her again and said we might have to transfer her to Spokane, she was now up to 12 liters of oxygen and not able to keep her sats up.  When I saw that my jaw dropped, the max amount of oxygen you can get is 15 liters! Reece was so exhausted and sleepy.  Without any oxygen her O2 sats would go down to 70-73% which was scary, I had never seen her that low before. The Dr was worried about her needing to be intubated so she was air-evaced to Spokane. I will say that Clinton was very jealous he didn’t get to ride in the helicopter, he was nervous as can be but he really wanted to ride. Throughout all this I was very calm, I think I was in shock and so exhausted.  It was a nice short ride but very choppy. Reece was not too excited to be strapped to the stretcher and cried for the first 5 minutes b/c I was sitting in the front but after we took off she was sound asleep. 

Once we got to Spokane she was put in the PICU. Since they are a children’s hospital they have more equipment and she was hooked up to a “high flow” nasal canella which would allow them to push more air into her without using a mask and she was happy with that. She was weaned down to 7 liters and was sating at 88-90% which they are ok with. We had a long day and Reece slept lots and by 7pm she had crashed for the night.  The next morning when I got up Reece looked horrible she was pale and her face and neck was swollen, her nose was covered in dried blood and snot.  I noticed she was drooling like a baby would when they are teething so I told this to the Dr.  They thought she might have swollen glands or something else so they did a neck x-ray and it was normal. Later that day they weaned her down to 4 liters of oxygen and then by 3pm we had moved out of the ICU and over to the Ped’s department.  She was starting to look and feel better. Her oxygen levels were looking better and we were slowing weaning her off the oxygen. She was getting Neb treatments every 2-4 hours and they were really helping, her lungs were sounding much clearer as the day progressed. By the next morning she was really perking up and wanted to go for a walk. We started the day with an upper GI test that looked good and then the x-ray of her lungs which had improved a lot. Around noon she had another study done that was called a “swallow study”. Were they gave her different foods and liquids to drink all different consistencies and watched her swallow with an x-ray machine. It was really awesome to watch. The speech therapist noticed with thin liquids she was doing what they call “micro-aspiration” which meant she was aspirating a tiny amount of fluid into her lungs when she drank THIN liquids. So from this finding we are now thickening all her liquids for a while and after she is healthy for an entire month we will repeat the test again.

Reece was exhausted by the time we got back to her room and fell right to sleep; she was completely off oxygen and was keeping her sats at 95% during her nap. The Dr came to chat with us and Clinton did a lot of persuading to allow us to leave that day. Reece had really turned a corner and we were comfortable with going home. Our wish was granted and we headed home by 6:30pm.

Reece is doing well, she is back to her normal toddler self and we have some new plans to help keep her asthma under control and hope they work. The latest diagnosis of “micro-aspiration” we hope this will help improve her chronic respiratory illnesses.  Now we just need to keep her healthy and totally free from any respiratory illnesses for a month so we can see if this new plan is working. 

I keep saying with each hospitalization “this was the worst” and they do seem to get worse and worse each time. This last illness was scary b/c she was on such a high volume of oxygen and seeing her yet again cough and struggle to breathe is so hard. Reece does so well and she is such a tough girl. I’ll be honest she puts a fight with some things but she does really well for her age. She gets scared and cries but after the procedure is over she is so polite and says “bye bye, thank you”! I know she will never remember this time in her life but I want to do my best at keeping record so she can have something to read about.

 I was super calm and have been that way every time she is in the hospital and it kind of bothered me. But I looked back and think that it was good that I was calm. Had I been frantic and stressed things would have been very difficult. This last time, after we got home about 2 days later I broke and realized I had been holding a lot of emotions and feelings inside. I try my hardest to keep my composer while she is sick and going through everything b/c im sure if I lost control I would be a mess and I know I need to keep strong. I know with each time she is put back in the hospital and each time she gets sick I am blessed with a greater power to muscle through. I know I need to be strong for Reece.  We are so blessed and I am grateful for all the help we get from my family and all those who are always praying for us and for Reece.

I found this quote and I really like it…..

“If God brings you to it, he will bring you through it”

The Nasty Bug Called RSV

Just shy of 5 days from my last post Reece was doing so well and then hit rock bottom. T got a double ear infection last week and then had this nasty cough that turned into a runny nose and watery eyes, common cold i figured. Well it wasn't long before Reece caught the bug. I did my best to keep things clean and keeping them at a safe distance but honestly it's hard. So it was Sat. March 17th Reece woke up with her chronic cough that was needing more attention and we started neb treatments every 4 hours. She did pretty well and then Sunday morning the coughing got worse and she started running a fever and then throwing up. By noon she was really warm and was very ill, she would just cry every time she coughed and she didn’t want to do anything but lay with me. We had a very LONG night, I was up every 1-2 hours with her coughing or throwing up. We called the Dr and went in that morning and her oxygen was at 90-91% not bad but not good enough to go home. So back into the hospital we went. She had a chest x-ray and it showed Bronchitis so they tested her for RSV and it was POSITIVE. Reece was really sick and we were not going home for a few days. That night I was going to sleep at home and Clinton would stay with her. I took Clinton a change of clothes around 9pm and when i got there she was awake and looked miserable. She was crying and her breathing was very wheezy and I could tell she was working hard to breath. She was on 4 L of O2 and 88-90%. It broke my heart to leave her, after 90 minutes of trying to get her to sleep I left and she was crying "mommy, mommy". I honestly don't know how I walked out of the room but I had to go home to get some rest.

When i got to the hospital that morning Reece was in rough shape, her eyes were purple and puffy. She was now on a bag mask and on 8 L of oxygen that is an INSANE amount of oxygen for a small child. I was furious that we were still there and had not been transferred to Spokane sooner. We waited for the Dr to come in and immediately asked to go to the children's hospital in Spokane; she didn't hesitate for a min. by 9am we were on our way. Reece had slept about 12 hours in the last 48 and she was physically exhausted. The ambulance ride was rough but she was able to sleep. We arrived and went straight to a room. She looked and sounded much better and had moved down to 3 L. Our fist day was long since she didn't take another nap and she was emotional drained and wanted to go home. She asked me all day long "mommy go, mommy go". I just had to tell her later, “We will go later when you are all better ok?” She says to me OoooK. It was so cute and so sad. We were at the Children's hospital for 3 days and the care was exceptional. The staff and Dr’s are so kind and understanding; they take time to listen and are so good about the unvarying changes that go on with a child. They willingly adjust things to fit our needs and the needs of Reece. I just wish we lived where there was a children’s hospital so we can have better experiences every time she is hospitalized.

RSV was probably the worst sickness she has got since January, I thought when she had Influenza she was sick but this may have topped it. It was the scariest moment of my life to see my child in such rough shape and struggling to breath and seeing her on such a high volume of oxygen.
I know Reece will get sick again, she is a toddler and it's just bound to happen. We now know that she has Asthma so this is the trigger for all her breathing problems. I try my hardest to keep her healthy and away from sick people but I can't really put her in a bubble.

Reece is a strong little girl and has done so well with all this. She has really taught me patience and how to persevere. I know the Lord is testing me just as much with all this and I have really become a stronger person since all this started. We rely a lot on the Lord and others to pray for us and I know many have prayed on her behalf. We couldn’t be more grateful for those prayers and blessings. Miracles happen every day and Reece will be healed one day.

This was take just days before we ended up in the hospital.

Feeling Good

It’s been so great to have Reece feeling better. Reece has been asking me to go outside a dozen times a day. The weather hasn’t been so pleasant, very windy and that causes her asthma to flare. So when we saw sunshine and clear skies we took advantage and spent some time outdoors. Reece likes to play with bubbles and she always wants to play with them but I don’t really like to in the house. So we took this day and played with bubbles. She is new to the “blowing” part and spent most of the time licking the wand, it was gross to me but she didn’t mind at all!

Reece still coughs everyday and sometimes in the night but we have seen a drastic change. She had her apt. with the pulmonologist this week and it went well. We spent 3 hours at the office, 90 min face to face with the Dr and had lots of test. She was tested for allergies and had none; she was tested for CF (cystic fibrosis) which was negative, huge relief. They also checked her sinuses for possible infections and they looked good. Our plan and diagnosis is Reactive airway disease/Asthma and to start her on Singulair/daily. She is still taking an inhaled steroid once a day. We are hopeful that things are going to improve for her and just try and keep her healthy. The few things we have narrowed down that cause her coughing fits: crying, laughing, dust, increased activity, cold drinks and sickness.

Reece has been super good with all that has gone on in the past 3 months. She has no idea what’s wrong or what we are doing, she won’t remember any of this and doesn’t understand what we are doing and that we are helping her. She has done exceptionally well with all the Dr’s and nurses examining her and testing her, giving her treatments and taking medication. I have been so blessed to have such a composed little girl throughout all this. We were told that most likely for the next few years this will be a routine for her and we won’t know if she will have asthma for the rest of her life until she is 5 years old. Our hope is she will grow out of this but I know she will be strong with whatever the outcome is.

Reece eating a lemon... my mouth waters every time i see this

one of T's favorite things to play with

best box of huggies i purchased!!

we actually had a few nice days and spent them outside playing with bubbles

T was so happy to be outside

Tough Times Make You Stronger

(this was our 2nd hospital visit Jan 31st)

Over the past 2 months, we have been at the hospital or in the Dr's Office with Reece. It all started at the end of December 2011. Reece got the common cold, nothing much, just your typical running nose, sneezing, and a cough. Well it lasted about 2 weeks and she wants getting better. I did what I could to make her comfortable and she got plenty of fluids and rest. The beginning of Jan my dad found out he had pneumonia and pleurisy, not contagious but 2 sick people in the house it was rough. Well it started around mid January Reece’s cough was getting really bad, she would cough so hard she was making herself sick and she looked like she was working hard to breath.

January 20^th Reece went downhill fast, that night she was really sick, she coughed all night long and was miserable. She had been coughing for 3 weeks now and it wasn’t getting any better. She woke up that morning and was happy but soon hit a brick wall. She started coughing and I noticed for the first time that her stomach was lurching and when she would breath I could see her ribs. (its called rib retractions, I didn’t know this at the time). She was also wheezing and I could hear it every time she would breath. I took Reece down stairs with me and she fell asleep on my lap, I took her up to her room and laid her on the bed. I was so nervous about leaving her I would check on her about every 5-10 minutes to check her breathing. After she woke up she was crying and I knew she was hurting. Her breathing got worse and she began coughing again. I ran outside to tell Clinton I needed his help and when I got back in within minutes Reece began throwing up. I then called the walk in clinic and took her in right away. She was so lethargic and weak, her breathing was really wheezy and she was struggling. They checked her O2 sats and she was at 90%, average is around 96-100%. Not sure what was wrong the Dr wanted to admit her to the hospital and monitor her over night. We got to the hospital and they started IV, X-ray, labs, and you name it. She was so exhausted and it was heartbreaking. They had to put oxygen on her b/c she was so low and needed some help. She got breathing treatments every 4 hours. This simple cold was the start of a long and stressful couple months, and possibly the next 4 years of her life.

After 24 hours in the hospital Reece had improved tons and was feeling and looking really good. We were released home the next day and she started on Albuteral breathing treatments as needed. For the next 10 days Reece cough was still around. She coughed and coughed but it never got worse nor did it get better. On Jan 30^th it was a night without any sleep. She coughed hard all night and it was scary, she started wheezing and was having rib retractions. I was giving her treatments every 4 hours and she would last an hour before she began to cough again. It was Tuesday morning January 31^st, Reece woke up at 7:30 and I gave her a treatment, she then started coughing by 8:30 and didn’t stop. I called the Dr and we got in to the office at 11:45. Reece started throwing up before we left and threw up 7 times by the time we got to the hospital. At the Dr Office, her oxygen level was down to 88% on room air and with oxygen she was at 90%. Dr Thompson came in and said we need to put her back in the hospital. So we headed over and the rollercoaster started again. Test after test, lots of crying and one sad little girl. After 2 days all the test came back negative for, flu, RSV, pneumonia, and whooping cough. So our thoughts we led to “reactive airway disease” or asthma. Children under age 5 who have symptoms of asthma are diagnosed as Reactive airway disease because they typically grow out of it.

Reece was in the hospital for 5 days, this was because she couldn’t keep her oxygen above 94% without the help of oxygen, and while she would sleep she was drop to 85-88%. The first day she was on 4 letters of oxygen, which is a LOT for a small child. We slowly lowered her oxygen every day and finally she was off oxygen all together and we could go home. Again we were sent home with Albuteral and she would get treatments as needed.

We had planned to take a trip down to Mesa on Feb. 5-16^th but Reece wasn’t discharged until the 4^th and the Dr advised us not to fly for the next 2 weeks. Reece was doing well and back to her bouncy self! We had been home less than a week and my dad began coughing again. He went to the Dr and loan behold he had Influenza A “The Flu”, the kind you don’t want to get. Before we knew what was wrong he had been around us for a couple days coughing and we were all exposed. We stayed far away and kept to the basement but it wasn’t enough. A week later I started feeling sick and actually didn’t think I had the flu but after 5 days I knew that I did. The entire week Reece and Turner were up and down all night, all this time i was feeling horrible but had to take care of my babies. Reece began her coughing fits again and Turner was having trouble sleeping and was really fussy. On Sunday January 12 he woke up with a fever and a cough. I was so worried he had the flu so I took him to the walk-in clinic. We came back with an antibiotic for an ear infection! But the Dr said that the influenza test is not perfect and it could be a false so watch him and he might need to get checked again. Turner ran a fever for 3 days and I was really nervous, Reece’s cough was getting worse and by Thursday she had coughed almost 12 straight hours. Friday afternoon we took both the kids back to the Dr. Reece’s lungs sounded great and her oxygen levels were at 97%. Turner had a running nose and his ears were great, no fever and the kids checked out well. We came home and Reece just wasn’t acting normal she didn’t want to eat, she was really clingy and by 6pm she wanted to go to bed, this made me nervous. 2 hours later she woke up coughing and she was struggling to breath, we gave her a treatment and then she threw up all over. She had started running a fever earlier and my fear was she had the flu. She was really warm and coughed all night and threw up 2 more times. At 2:30am I called the 24 hour nurse hotline, from our conversation we decided to take her to the ER. I was so nervous she had Influenza and with her breathing issues I knew she would get really sick. We got to the ER and her oxygen level was at 88%. She was really warm and had a fever of 102.9. Reece was such a trooper and did so well. They swabbed her nose and sure enough she had the “flu”. The Dr wanted to watch her for a while so see how her oxygen levels were and with oxygen she would only get up to 90% so they decided to admit her. It was sad but I knew she needed that extra help. She was miserable and I felt like crap. We finally got to a room upstairs around 6am, Reece had fallen asleep. I couldn’t sleep with everything going on and my body was aching and my eyes were burning and my head was pounding. I called Clinton around 7:30 and asked if he could come so I could go home and get some sleep.

(this was Reece on day 2, 24 hours after we were admitted)

I rushed home to find Turner screaming. He was running a fever of 101.1. I decided that he needed to be seen and I knew it was his turn, he had the flu. I took him to the walk-in clinic that morning. They gave him some Tamiflu to help shorten the duration of the flu. My poor babies were so sick and I was still not well. I was torn; I wanted to stay home and take care of Turner but also wanted to be at the hospital with Reece. I was sick and needed sleep as well, i han't slept in 6 days and my body was exhausted, it was a real struggle. I listened to my wonderful husband and stayed home and slept all day long and all night. The next morning Sunday, I got up and didn’t feel great but was good enough to go and relieve Clinton for a while. He came home and called me a couple hours later and said he was throwing up and had a fever of 102. This stuff spreads like wild fire, 1^st my dad then me, the kids and now Clinton. I knew I had to toughen up b/c my mom and I were the only ones left who could take care of the kids and I had to stay at the hospital with Reece. When I saw Reece that morning for the 1^st time after I left her it had been 24 hours later and I cried. She looked so sick, her eyes were puffy and purple, and she was pale and just lifeless. It was the worst feeling I’d ever had seeing my child in such conditions. I knew I had to be strong and keep my emotions down; she was getting good care and going to get better. It was long day and we spent the morning watching movies. We were moved down to another room and our goal was to have Reece off her oxygen by the morning.

Monday was my birthday! It wasn’t what I had planned for but things happen. Reece and I slept fairly well and she woke up and looked so much better. Her eyes were open and she had color back, i could tell she was feeling better. Dr Thompson saw us that morning and told us she wanted to send us home later in the day as long as things were looking better. We took Reece off oxygen and watched her progress. She was able to stay between 92-96% which was GREAT. It was the longest days just waiting around for the final say on if we could go home. We were home by 6pm and Reece was just as excited to leave as I was.

We have been home for 5 days and Reece is doing really well. She is off all her medication and just has to take an inhaled steroid, which is much better than an oral one. We are scheduled to see the Pulmonologist in 2 weeks and I’m nervous and excited at the same time. Dr Thompson doesn’t suspect but wants to have Reece tested for “Cystic Fibrosis”. Which is a Lung disease that is inherited by both parents; she has some of the signs but is not on the high end. Dr Thompson just wants to rule out as much as possible. It scares me because there is no cure and it’s something that can be rough to live with. The worst part is the life expectancy is age 37, which really hit me hard. I have been really worried all week about this and the worst thing is we won’t know until we see the specialist in Spokane because she can’t be tested until then. I know I shouldn’t worry about this and she is probably ok, but it’s always scary when your child might have an incurable disease.

Reece is such a special little girl and we love her so much. She has endured so many things in the last few months and has been so good. She is so tough and I’m so proud of her, she amazes me every day. I hope and pray that she will continue to fight through all the challenges she will face throughout her life. She is a beautiful daughter of God and we are so blessed to have her.