Monday, June 29, 2015

Jude is sick

Jude is sick. He was on a great streak but it was inevitable that he would have to fight again. However this is presenting a bit different this time so I am a bit confused if it's pneumonia or a natural further breakdown of his lungs or both. Maybe he aspirated on secretions and it created a domino effect? I am not sure. I guess it's like the pulmo says........it doesn't really matter how it happened it's how do we treat it. 

On Friday we started noticing that Jude's heart rate was running pretty high which is generally a sign of a fever with him. However at that time he was not presenting any fever and not acting like he was in pain. He had a pretty rough Friday night and when nurse Allen got there Saturday it continued. When I came in to check on Jude Allen told me he wasn't holding oxygen and was at 10 liters. Allen never has Jude on 10 liters so I knew he was really struggling. This continued through the weekend and last night after the nurse left for the day Jude was really struggling. 

His temp was at 98.7 then quickly rose to 99 so I gave him Motrin. I checked again after about 20 minutes and it was 99.3. I waited some time period and when it kept rising I gave him Tylenol. Finally after retractions I couldn't get controlled I took Jude out of his bed and held him on the couch. I got him in a position that he felt comfortable, gave him some Valium, and he drifted off to sleep in my arms. For the first time all weekend his retractions stopped and he slept comfortably for about an hour and a half. 

I am not sure what's going on with Jude and I am really worried this time. I have had a bad feeling in the pit of my stomach for the last week even prior to Jude being sick. I am also on edge and have little patience. I always say we all have our own struggles but life gets to me sometimes when I see people not appreciating their healthy children. Life is what you make it! 



Thursday, June 25, 2015

Jude's update

Jude isn't feeling well again. He is very congested and is having oxygen issues. He is sleeping a lot more and he just doesn't seem himself to me. He still smiles at me but he is struggling. I plan on going home and holding him tonight and hopefully that will make him feel better. 

We are all doing well but I am wishing we could take a vacation. I will gladly give up any extra luxury for Jude but getting away with my husband for awhile sounds very nice. 

I will update more as Jude progresses or changes in anyway. 


Friday, June 19, 2015

Emily is growing up and a quick update on Jude

Jude is doing as expected. He is a happy little boy who has severe respiratory issues that require frequent suctioning and supplemental oxygen interventions. The recent storms that have ravaged Texas have affected Jude's well being. I am assuming this is because of pressure changes within the atmosphere. I made note of a seizure last night that lasted a few minutes. Luckily Jude has cluster seizures so he can catch a breath and offset the loss of oxygen.

We have made the decision to sell our house if the timing permits. We think that being more financially secure will help our entire family in the future including Jude. We are taking everything a day at a time and not rushing anything. We want Jude to feel safe and secure along with his nurses so again we are in no hurry. We will find the perfect place for our family and one that will help our entire family shine. If we had our wish we would have more land. 

Emily left for Cabo Mexico today for a vacation and I felt the apron strings being pulled. I cannot imagine Emily going away to college but I will be so proud when she does. I made sure that Emily's plane landed and that she was safe and then I began recounting her childhood.









Looking back I was actually pretty young when I had Emily at only 25. I remember hugging her close and watching every milestone she accomplished. I am so lucky that I was blessed with such an amazing girl!!! I remember she never wanted to leave my side when she was little and was very protective of "my mommy" if anyone got to close. Now she comes and goes easily and I am watching her find out really who she is and embracing just being herself. Sometimes I stop to realize that Emily will be leaving soon and Jude may end up leaving too. I sometimes begin to feel a bit sad and wonder what it will be like not to be a mom full time but then I realize I will always be a mom. I love having children around and sharing my life with them. I am very proud of both of my kids and I couldn't ask for a better family. 

So I have asked for some safe traveling prayers for Emily this summer and prayers I don't go crazy worrying, haha. Have a good weekend everyone. 

Friday, June 12, 2015

A memory

I found this picture today and it made me smile and then it made me think of a very chaotic time in our lives. 



This was Jude's second birthday cake. We had an entire Hungry Caterpillar theme for his party complete with this incredible cake and great decorations. Unfortunately the party never happened because the night before we rushed Jude to the hospital. It was his first round of aspiration pneumonia and we learned that weekend that Jude would never eat by mouth again. We took his cake to the hospital and let the nurses, doctors, and guests enjoy it in his room. 



Jude was to sick to undergo surgery so we had to take him home with an NG tube and schedule the surgery for his feeding tube. I remember it being so hard to let go of the normalcy of feeding my child with a bottle and by mouth. Now I cannot imagine our lives without a feeding tube. I cannot fathom not filling bags full of formula that connect to his GJ button. Aspiration pneumonia has been Jude's nemesis and the condition we fight at least once a year if not more. Jude aspirates on all liquids no matter how thin or thick so even his secretions are an issue. By the way putting an NG tube in your child is the WORST thing! Mike had to do this because I lacked the courage because I felt like I was inflicting pain on him. I understood it was providing him nourishment but it was such a hard situation. 

I am grateful Jude has been such a fighter and the lessons he has taught us but I dislike the struggle he has had. 

Tuesday, June 9, 2015

Jude's update

I promise I am not turning into an anti blogger. I am just overwhelmingly busy at work these days and life continues to march on. Jude is doing pretty well for the most part and continues to prove the statistics wrong. He has had a lot of thick secretions that always needed to be suctioned but overall he seems to be handling this situation a lot better than anyone anticipated. He is very smiley and pretty interactive. He is still having issues with some pain but we seem to be able to control that with medication. 

We are still contemplating the move and have not made any lasting decisions. However if we do move we are pretty sure we will build so we can get Jude exactly what he needs. 

Thanks for keeping Jude in your thoughts and I am sorry I haven't blogged more but I guess that's a good thing. I just haven't had a need to. 



Wednesday, June 3, 2015

Jude's cough and a major decision

Jude is still having some issues regarding oxygen and now a barky seal cough. Yesterday hospice came out and they were wondering if maybe his scoliosis has worsened and is causing respiratory issues. Everyone is watching him carefully and Charlotte is just amazing. I know as soon as she gets there each morning she is going to get him to the best point he can be. She really works hard on his lungs and works to get Jude feeling better. I feel so comfortable leaving him with her because I know the amazing care he gets. 

So my husband and I are contemplating a difficult decision, one that could add more stress that we may not need so some prayers for the appropriate decision would be great. We love our home.......Jude loves our home.........we have fought for years to keep our home. Through one of the worst financial crisis's a family can have we kept a roof over our family's head.  However.......the market in our area had exploded. If you know anything about TX real estate you know that houses just don't stay on the market right now. For example I have a client I am writing homeowners insurance for this week and when he called for the quote he told me his story. He said they kept finding houses they loved but they would be outbid on each one..........yep you heard me OUTBID. People are offering thousands of dollars above the asking price on some locations in our area. Regardless of a bidding war houses are just not staying on the market long and many go before even being listed on MLS. Our area has seen a great growth spurt with large homes being built around us that have greatly increased the value of our home. If we sell we stand to make a very large profit. For the first time since Jude's tragedy we would be in a good financial position. One that could potentially pay off our cars, pay off our debt, and even put us in a better home. After discussing this as a family even Emily said, "Mom you would be crazy not to do this". However trying to sell a house with Jude in his condition and potentially making not one but two moves sounds exhausting and stressful. Plus I don't want anything to be stressful for Jude or potentially aggravate his situation. I also worried about this being Jude's home but Mike pointed out that Jude's home is where we are as a family. He also pointed out this could give us the option to get a one story house built with wide hallways throughout the house for Jude. The good thing is if we do decide to take this route that if we don't get our asking price or we get to stressed we just don't go. Nothing is ever set in stone. So it's a hard decision but one we are contemplating. We will take our time and investigate all options prior to making any final decision. The market is steady in our area and I am being told it shouldn't change any time soon. God Bless Texas! 

So I would like to ask everyone to stop by my friend Beaux's go fund me page. Every year he provides school supplies and backpacks to underprivileged children. Only $6 can buy the complete kit and you would make a child's day. So let's all give up our Starbucks today and help a child out. 
http://www.gofundme.com/kidsbackpackdrive?fb_action_ids=878810912184329&fb_action_types=og.shares

Sunday, May 31, 2015

Jude's rocky weekend

Jude has not had the best weekend. We were able to get out for a bit but I worried about Jude while we were gone. Tonight Jude had a hard time keeping his oxygen up and had very thick secretions. With all his symptoms it seems Jude is fighting a mild case of pneumonia again. Jude is a fighter and has done pretty well out of the hospital. So hopefully he will do alright this time. We have stayed on top of breathing treatments, suctioning, and repositioning. We will see how Jude does tomorrow with Charlotte and I plan on calling the hospice doctor too. Good thing is I just came to bed and I don't hear any alarm with his night nurse.