One Month

Yesterday was mothers day and although it was very difficult there were bright sides to the weekend. Mike and I drove to a friends lake house on Saturday morning. We had lunch and then went to look at some artwork. I like stained glass and I was drawn to a piece in the window at Your Private Collection Art Gallery. I wandered through the shop admiring all the items and ventured to their back room. When Mike and I came through the black curtain we were stunned at all the beautiful angels lining the wall. The scene took our breath away. I began concentrating on a blue angel just to the left of a large gold angel adorning the wall. We both began to cry and we felt we needed to explain to the attendant why we were shedding some tears. She then asked if she could get the artist Stacey Watkins and have her meet us and we agreed. We told the artist our story about Jude and the 777 information. She cried with us and said she would make sure that we were able to afford this piece and she did just that. 

I have had serious issues lately with having a very upset stomach and this hit me again on Saturday night. I told Mike I would rather just go home and be in my own bed. I was also missing Jude and wanted to get up to see him the next morning. So my loving husband drove me and the dogs all the way home at 11pm. On Mothers Day it was bittersweet but Emily did brighten my day by leaving me this message. She's an amazing kid. 

It was still hard and today is even harder today because it's been a month since Jude passed. I hate seeing my husband hurting and sometimes I still feel like I am going crazy. At times I feel more put together and like I am beginning to rise about the sadness a bit but then grief strikes again and I just want to go get Jude. NO work doesn't help so please quit saying that. I am pretty sure my stomach ailment in pancreatitis from all the stress but thankfully I know how to maneuver that at home thanks to Jude. I am on an all veggie juice diet today with lots of water. I am basically going to give my system a rest for the next few days and hope it clears up. If not that's when I will go to the doctor but again luckily I am pretty experienced in this situation. I think sometimes a lot of our health issues can be fixed with diet and extra water.  

So I have realized something. Looking back I was so close to Jude's situation that his illness and needs became a routine. I was so close to the situation that even though I knew he was ill I really didn't understand just how sick he was. Since he couldn't walk and could no longer tolerate the stander this just intensified his poor body breaking down.  Sometimes I think we are so close to our children's situations that we begin to focus on the medical versus the reality. Reality was Jude was a normal kid.......he was. He knew what you were saying, he smiled, he laughed, he wanted to play, and he loved Spongebob but he was sick. Take that in please he was a normal boy that was just sick due to a stroke. Strokes can strike anyone at any time so we just have to be grateful for our health. His little body and his lungs just couldn't go the distance ours could. So I know he is better off not struggling to breathe but our hearts hurt without him. 

So one month down..........one month closer as Mike says. 

The Daily Grind

Yesterday was hard again. We are very slow at the office because it's the time of year families are preparing for graduation and other situations. The quiet in the office is deafening and I cannot help but think of Jude. I have had a few people questioning why I am still grieving which makes me turn my head and squint. The loss of a child is awful. You realize you will never see their face while you are alive again and it just punches you in the gut. So I left work a bit early and went home. Once home I checked the mail and saw a letter from our primary insurance carrier. It was listing all of Jude's benefits paid for March - Ninja 1. Then I saw a letter addressed to JUDE from Texas Health and Human Services which always makes me cringe! In the past it generally held a nursing denial which always pushed my stress level over the top. Looking back I still cannot believe how many times we went through denials and how complicated Jude's care was. Anyway this time it held information letting Jude know he was no longer covered for benefits because "He is not living.". Oh the stupidity of bureaucracy. I have no doubt there is probably some idiotic law in place that they have to notify the party. So thank you to the state for reminding me Jude is gone I appreciate all the service you provided him but you can kindly go away now. - Ninja 2

 I was then able to relax a bit and then nurse Allan showed up on my door step. He was refreshing to see and he stayed several hours. The animals were SO excited to see him. 

Allan says he is doing okay. He shed a few tears yesterday and said he has started working again but it's just not the same. I know how he feels. Then night nurse Cynthia called and told us Jude had blessed her because she was pregnant. We were very happy for her. I also talked or texted with nurse Charlotte and nurse Candice this week. Everyone is moving forward but I know they are all missing Jude and we miss them. 

Today is a better day. I have moments when I lash out, moments when I cry, and moments when I smile. I am learning this is all normal. I remember feeling my moms loss when she died and I remember being incredibly depressed when my boyfriend died. However this is a new sadness. I also realize that if Jude had continued to fight and survive his teen years could have proven to be quite difficult for him and for us. My brain is processing everything but my heart still hurts. 

Jude's book is complete. It's basically a culmination of diary entries on this blog since he was born combined with explanations. We hope to have it published and ready by the 9/24 Emily's Smile Box day where she features the pediatric stroke walk/run. I hope the book will touch many lives and help many families. I have my first meeting with the publisher on 5/16 so say a few prayers it all works out for the best. The thought of him touching even more people's hearts makes me smile. 

Thoughts

Sometimes I need people to take a few steps back and remember I just lost a child. I understand you have needs and wants I need to attend to but just remember I am just trying to function. I know your life is marching along but give me a bit of time to get back up to speed. 

I saw this today and I liked this poem. I have read many over the past few weeks but this one stood out.

Tomorrow we list our house. It will be sad to see it go but the living room is so empty now. I think it will be good to have something new to focus on. 

The Memory Feed

I had an overwhelming response to yesterdays blog and I thank all those that reached out. I want to continue making a difference and if that means sharing my grief then that's what I plan to do. I had multiple people email explaining that the feelings I listed are exactly what they had been feeling but were unable to communicate them properly. 

When Jude first passed away the memory feed on my Facebook just tore my heart apart. However today I began to look at the pictures differently. I was thankful that I had chosen over the years to have such a strong social media presence. Due to that choice my memory feed is full of amazing pictures each day. It's almost like Jude is telling me good morning. 

I had Jude and a little Leibe on my page today and I am grateful for that. 

The New Normal

I thought since my blog was about being open and honest that I would again express some of my feelings. I thought grieving parents my be able to relate and understand what they're feeling is shared. 

What is the new normal after you lose a child. Well this is my experience. 

1. Having the wind knocked out of you when someone asks you how many children you have. I am not sure if I should answer 1 or 2. One now with an explanation or save them the grief and just say two (This happened Saturday). So I was honest and said, "I have two children but recently lost one." 

2. Feeling lost

3. Feeling like you may be going bat shit crazy but realize you cannot go bat shit crazy because you have to work and care for your other child. Then overhearing your husband say he is holding it together because he is trying to get his wife through this. That he just wants her to survive......poor Mike. He is almost reminding me of Robin Williams in, "What Dreams May Come" because he is so sensitive and caring. Today he called me and asked how I was and then he stopped before I could answer. He asked "crappy or really crappy." I explained really crappy and that it's not been a good day so he responded that we would work on just getting back to just crappy. He made me smile. 

4. Not sleeping. I slept two hours last night and I am dragging today. 

5. Wondering if you would freak people out if you just yelled at the top of your lungs in a public place. Then realizing they would probably take you away in a jacket so you refrain. No one wants to go away in the jacket.  

6. Realizing people are making comparisons because all they have to go on is what they experienced. However you want to point out to people that losing a parent or grandparent is hard but a parent should never have to bury their child. You just cannot comprehend the hole in your stomach filled with loss unless you've been there. 

7. You want to stay busy but you don't want to go to work. Work seems unnatural and confining. Like you are forced to sit and think about what's happened. Yet again you need to stay busy. 

8. Listening to people complain about trivial things makes you consider slapping them with your purse. Well not really but the woman in the nail salon complaining about her toenail polish made me bite my lip and hold my nail polish extra hard. 

9. Looking around your house and realizing it will never be the same. I generally have something with noise going at the house because the loss of the oxygen machine is deafening. When I look in my living room all I think about is watching Jude take his last breath and watching his little body lay there. It's overwhelming and it replays in my head over and over again like a nightmare. 

10. Normal is questioning if there is a Heaven and if you will see your loved one again........it's natural. It's not a lack of faith it's natural. 

11. Being so tired that you forget to do normal every day activities you normally did and being amazed you forgot to do them. Not wanting to clean, not wanting to cook, not wanting to life.  

12. Realizing your therapist is crying with you because she understands this is one horrible crappy tragic situation that really doesn't have any resolution but time. Hearing the words, "you do what you need to do I am fine with whatever you need." An understanding that depression is inevitable when you lose a child and that you just have to take time and figure it all out YOUR way. No one elses way.........YOUR way. 

13. Putting on a happy face when you really just want to crawl into a ball or sigh at everything you hear. You are basically annoyed by every single thing. 

14. Not wanting to be around large groups of people but toughing it out anyway. 

15. Realizing as prepared as you thought you were you can never be really prepared. Then realizing it's going to take a very long time to get back to normal and even then it will be different. 

16. Rotating through all the stages of grief on a continuous cycle in 10.5 second loops. 

17. Having a panic attack that a holiday is approaching. 

18. Realizing there is no sense to losing a child or a child being sick. People can try to rationalize why God calls a child home but in all honesty there is just no justification. It's just random chaos and all you can do is have faith your child is happier. 

19. The idea of walking into a hospital setting ever again makes me want to vomit. 

20. Realizing that everyone grieves different and you have to help your partner by being with them, standing back, and even asking for some moments to yourself if needed. 

21. Realizing that there is a huge stigma about death in the US.  People really don't want to hear about it but knowing your child's story will forever be with you and you don't want to hide it. 

22. Becoming a member of various support groups leads your heart to break multiple time for new friends that share their stories. You feel connected and thankful but you also want to delete yourself to save the pain. Yet you stick it out because they are your fellow soldiers in this battle. 

23.You learn to cope. That's basically what horrific grief is about just learning to cope until the pain starts to heal. 

24. Advice can be very annoying but you understand people are just trying to help. 

25. Realizing life will have to move on but it will in fact move on without the person you loved so much. You just have to keep up. 

Normal thoughts and feelings that are overwhelming and raw.  

Sunday

I finally dreamt of Jude last night and I woke up almost giddy with excitement. In my dream I somehow found my way to wherever Jude is. It was like building a time machine but going forward at the same time. Emily was with me and so were a few other people. I remember seeing him and he was standing there quietly. I walked up to him and asked him if I could hold him and asked him to walk but he shook his head no. He didn't want to walk. So I gathered him in my arms and sat down with him like I normally would staring at his sweet face and he smiled. I began to happily cry and kissed his hair like I normally would and asked people to come look at his smile. It was peaceful.

We had a fairly decent weekend. Like I said before we stay busy so that helps immensely. We don't really make plans but we go with what feels right and that seems to help us. If we plan to much I have noticed that our patience run thin. Next weekend is mothers day...........I am not sure I can be here. We have a wedding of a dear friend we are suppose to attend but I am not sure I can be in my house next weekend. We may have to get away again to a cabin or something local. Tonight when we got home after having a decent day I suddenly just filled with rage and burst out in tears to Mike yelling, "I am SO angry!!" I think this caught him off guard. I am so ANGRY my child died and tomorrow I have to go back to work again. Then I calmed down took a breath and realized life is what it is and it could be worse. Whew, it's those moments that just overwhelm you that take over for a bit. Again, it's normal and common.

Tomorrow we start a new regime. I am signing up at the rec center to start working out again. I am not doing this for anyone else but me. I really don't care about my weight and Mike doesn't either but exercise is healthy. I also am stocking my fridge with healthy items. It's time to start cooking again and my few glasses of wine tonight will be a send off to the past seven years. It's time to get healthy again and move forward. We list our house this week and we have our eye on a little house in downtown Roanoke. I am not sure it will pan out but we are making plans non the less.

Emily is doing well. She misses Jude and she has lashed out a bit at school at people who are rude and unfeeling. Allan is back working but he misses us and we miss him. He texts us "Morning glory!" on the weekends so we will know he is with us. Candice (the night nurse) is working as well but I know she also misses Jude. Charlotte.........sweet Charlotte hasn't quite been ready to go back to work yet but she about to try. Jude was as much her baby as ours and without her Jude's health wouldn't have lasted as long as it did.

Mike said that soon he will start marking plans on a calendar and if we can make the items that's good and if not that's okay too.  He wants us to spend time together and I think that's important too. So we are making it. Sometimes like I feel like breath but we are making it.

I did get a statue for Jude's grave until we get the final headstone. We dropped it off today.

Friday

Yesterday I went for my first grief counseling session. I had seen the counselor before when Jude came home on hospice so she was familiar with us. We both just sat and cried together and I told her about how I was feeling. She said everything including the nightmares are completely normal. Yes after the loss of a child you can experience nightmares so just know it's a normal response. After the counseling session I went back to work but I was caught up and kept thinking of Jude. So I left a bit early and met with the lady regarding Jude's memorial. We discussed the design for the headstone and for the bench our friends collected money for. Today I began issuing out payments to people in regards to Jude's funeral. It's surreal that you have to handle things like bills and costs. My cousin said if someone should lose a child it should be an automatic pay off on your mortgage and a year off work. Funny statement but it just doesn't work that way. 

I am here at work today and doing alright. Questions seem insignificant to me at times but it's my job so I do it with a smile. I am also watching the bad weather approach our area and of course carry worry about Emily driving in it. My updates seem a little emptier now without Jude here but I know he is watching over us. 

Hope everyone has a good weekend. 

A Quick Little Update.

I have good moments and bad moments and I believe that's normal. At work sometimes it's so quiet that I just start thinking about Jude and cry behind my computer. Tonight Emily had a photo shoot for the PolkaDot Alley. They had the cutest items and she had so much fun. I was happy to see her enjoying herself.  

On our way home I realized Jude wasn't going to be there to smile at me when I walked through the door and the tears started to fall again. I feel as if we are riding a roller coaster again but I know the roller coaster will start slowing down.

When I got home tonight another amazing gift was on my doorstep. I have been so amazed at the outpouring of love for Jude and our family. I realized today we are about to go into May and it seems like we are on a time warp but amazing people stop and still remember us. It's so humbling. If I fail to thank you know that all you did meant so much.

I received this picture and I thought it summed up exactly how I am feeling.

One Step At A Time

I had someone ask if my grief was any easier knowing Jude was so sick. It isn't. If anything it's been really difficult because Jude required so much attention and depended on us for everything. Our schedules literally revolved around what Jude needed.  If you can close your eyes and think about your child then imagine coming home and never hearing from them again. Never touching their face, never kiss their lips, never hold their hand, or tell them you love them. It's just silence. Not only that but we feel like we lost four people because the nurses are gone too. However you learn to move forward. You put one foot in front of the other and you just live. Mike quotes Shawshank all the time, "You get busy living or get busy dying." We choose to live.  We choose to honor Jude's memory by trying to crawl out of our grief and helping ourselves and others! We can do this, we have faith! 

We are getting our house ready to place on the market. We hope the change in scenery and putting our attention elsewhere will help us recover some. We aren't even sure where we are going and may rent for awhile but we are making steps to move. At first I was worried I would be leaving Jude but Mike pointed out he is always with us. So a step forward.

Emily has started working out again and she is doing pretty well. She misses little things like we do such as Nurse Allan singing Spongebob Square Pants at the top of his lungs. She misses seeing Charlotte when she gets home from school and of course she misses Jude. She posted something on her Facebook that I thought I would share. 

"I have realized over the course of my brothers passing that too many people are upset at the wrong things in life. Going to prom with the right date should not matter, getting mad because someone did not answer a phone call should not matter, and so many people do not understand what my family is going through. We barley can comprehend the fact Jude is not here. I lost my brother. My inspiration. My friend. Someone who was so innocent and lovable he was aware at every moment what it meant to be living! Please don't stress about work or getting something on time that it ruins someone else's day be positive and enjoy life because it's the only life you get and make a difference. Just understand my parents are not doing well and would just like a couple days to sit back and realize the precious little angel that they lost is no longer here physically. So thank you to advance, but we lost someone very important and it's hard to hear people complaining about small things."

She is pretty amazing. 

I keep telling people I don't feel like I'm receiving any signs Jude is okay. However I had to recant that tonight. I realized that every night when I go to take my bath and I turn my music on that of all songs... "Tomorrow" from Annie plays. We can thank Emily for the song being in my play list. She loved it when she was younger and I just never deleted it. Also my friend Sarah loves singing it very loudly so it makes me smile. However I have such a large plays list that I rarely hear it but literally every night it's played. So maybe I just need to be more open and listen. Jude loved musicals despite his dads protest. 

The cemetery will allow a granite bench at the foot of Jude's grave and I have some sweet friends trying to obtain one for him. https://www.gofundme.com/2asz7uwk

Anyway, back to work. 

How Are You?

"How are you?"

I keep getting that question and I know people mean well but I wonder if they really want to hear the answer. I reply " I am good if I am out busy." However I normally don't add that I am NOT good if I am sitting at home, if it's night time, or if I am working. Work is the hardest and it's taking a HUGE toll on me emotionally.  I am doing my best and servicing my customers but I honestly feel today that I am not sure I can do this. Then I remind myself that I have to for my family. I am also having terrible nightmares which I have been told is normal but still scary. No I don't want to take sleeping pills so please don't suggest them. 

I feel like someone has reached inside my body and pulled every single nerve ending through my skin and left everything on the outside. That's how I feel. That's the best description I can give and since I have always been raw and open on this blog I figured I should continue that. Every single part of my body hurts and I just want to see Jude's smile again. I know I have pictures and his smile in my memories but I want to walk through the door and cuddle Jude like I normally would. I miss his nurses too. 

Hearing people happy or making plans grates on my nerves which is not what Jude would want but again how I feel. I don't want to hear complaints because everything you could possibly say seems extremely minimal to me right now. I wanted to start eating right and working out today but I have no desire anymore so I will just walk the dog. 

Grief is dark and it's sad and I hate it. I don't want to ever experience it again. I have traveled this road before but again not with a child. I have lost my mother, grandparents, a boyfriend, friends, but this............this one a child.......... trust me it's SO much worse.  I pray every night and let God know that I don't want to lose Mike or Emily. I hope he listens to me. 

It takes time. 

Just time.

The Evident Decline.

Tonight has been the first night that I haven't felt completely encompassed in grief. I know it will come and go but we are keeping ourselves busy which is helping. The funeral is over and people are dispersing but I am very lucky as I said last night to have so many people still checking on us.

When our family arrived home tonight I again came to the realization of how much our lives were dedicated to Jude. Literally everything we did worked around his schedule, his medications, and his needs. I am so glad we did too. I can also clearly see how much Emily lost and gained during these last seven years. It's very odd for us to not be on a schedule and it's almost disturbing.

When Jude was initially diagnosed 12/5/2008 (I will never forget the day) I remember feeling grief. I mourned the baby I thought I was going to have but there is nothing like losing the actual baby you had. I remember comparing Jude's situation to other special needs children. I hate to admit that but I did it and I remember thinking his diagnosis wasn't that bad. Jude could smile, eat, babble, hold his head up, roll over etc. The doctors thought the very best.  However as the years passed all that went away........well everything except his sweet smile. Now that I am standing back looking in I can see just how very sick Jude was from 2015-2016. I think we all got so used to his situation that we couldn't see past the medications and his precious smile. Now I can flip through pictures and video's from infancy through current and see the progression. I really blame the surgery in 2013 we subjected Jude to installing the pain pump but I know we did what we thought was best.  I remember telling someone this was a rapid decline and although Jude passed quickly this was actually not a "rapid" decline. Jude's oxygen levels had started to drop, his congestion had increased, his heart rate had increased, and his pain was evident. I remember getting a sinking feeling one morning before I left for work that Jude was fighting something extremely serious this time, but he still smiled when I kissed his sweet hair and I dismissed the thought. The pictures I took of Jude showed him growing ever more pale and I can see him growing more tired. I am eternally grateful that something divine intervened and let us know that putting in a trach and breathing tube would only prolong Jude's suffering. Although there are those that can benefit for a breathing tube Jude's pulmonologist made very clear that Jude would NOT be that type of candidate. I am happy he was so frank with us. He made Jude's last few months as comfortable as possible.

I know I will continue to miss Jude but my head is beginning to clear some. I can look at situations more realistically and realize just how hard this baby struggled and how blessed we were to have him. I also see new flowers being dropped off at the cemetery and I thank those that stop by to visit him.

Stone Soup

When I was a child my elementary school teachers would read our class a story about Stone Soup. It told the story of a stranger walking into a village hungry and looking for food but no one would give him anything to eat. The only material item the wanderer had was a large pot. So he filled it full of water, made a fire, and put the pot on to boil. Soon he put a stone in and began to loudly talk about the amazing aroma that filled the air. Villagers began to ask him what the wanderer was cooking and he would reply, "Stone soup and it tastes so good but it needs something else to make it taste better." Villagers began to offer up carrots, seasoning, onions, and more. Soon the wanderer took out his stone because it wasn't edible and then everyone enjoyed the amazing soup and the wanderers belly was full.

This is the story that came to my mind tonight. I have had a very hard day at work but I try to cover it up to the best of my ability. I am not ready to face life but as an adult I have no choice. I feel like I am the villager that has a pot that is full of water and a single stone. I have put my pot on the fire and I know everyone wants to throw their vegetables in but the fire isn't quite hot enough yet. So many people are asking how I am and I want to respond like Sally Field did in Steel Magnolias "I'M FINE!!! I'M FINE!! I can jog all the way to Texas and back but my son can't he never could"......you know the rest. I know people mean well and I am so blessed that I have so many people who love my family. I just know so many people want me to participate in life and be happy in the bright sunshine but I am just not ready yet. I need a chance to just breathe and take in everything that has happened over the last seven plus years. Each morning as I go to work I pass Jude and say, "Good morning Ju Ju" and each evening I pass and say "Good night my love." I have pulled in most days just to walk around his grave but I know over time that need will pass.

So over time I know the pot full of water with the single stone will need to be filled. Slowly but surely I will ask people to throw in their carrots, then their celery, some seasoning, and finally some onions. Onions are my favorite and the layers will be filled with the stories of our life and will flood the pot with amazing love and happiness. I know everyone is out there and I hope you all will be patient. Just know it may be months or years but I will ask you to throw in your seasonings and I will truly thank you for your patience.

Hey Jude!

I had to go back to work today and honestly I would rather be home in my bubble.  Life carries on but I am not quite ready to carry anything. Getting away to Sante Fe was an amazing thing for Mike and myself. As mentioned the nights are very difficult here at home and although we didn't escape our grief we found new ways to channel our emotions while in another setting. We saw many sacred holy places and we appreciated being so near to holy comfort. I never thought I was overly religious but in Jude's death I found I was much more faithful than I thought. I have always said that Jude is a blessing and I still maintain that information. As my sister mentioned at Jude's funeral when Jude was born we were all under the impression that God had answered our prayers and Jude would be okay. Yet God had other plans and we learned that Jude was "okay" in God's eyes and soon he was perfect in our eyes too. I have found a purpose in Jude's death in the fact he has reached so many people. With a purpose I believe our fragile spirits find away to heal.

I could elaborate on our trip but I choose to tell you about how we are doing because that seems to be the questions of choice. We are devastated and I am not sure how we will go on but per Mike we just choose to live. We choose to "be" and that's what counts. We choose to do what Jude would want us to and we march on. We do that with profound grief as we have had to pour out all his medications, question all that happened during his rapid decline, and realize we have to somehow find our way back to living a regular life. We all are taking this situation day by day. I caught Emily humming "Hey Jude" last night as she cleaned her room and it touched my heart. 

For our family part of our grieving included distributing Jude's medical equipment to other amazing fighters that need what insurance cannot or would not give them. I also believe that providing his diapers, food, baby wipes and other small items to those in need will mean as much as the large items we will be donating. I appreciate everyone's amazing emails and messages and I do know that grief takes time. I have traveled the road of grief many times although never for the loss of a child. I guess I could ask why God has subjected me to so much tragedy but I choose to thank him for not experiencing more loss. Like I always tell Emily, "Everyone has a story it's what you do with yours that counts."  I share my blog because I feel like I need to tell others that it's okay to grieve and to cry. It's okay to have your shoulder heave in pain as you question everything around you.  I would like to share something I felt on the plane this weekend. I wrote it down when we flew above the clouds with a beautiful radiant sun shining brightly all around us.

As I looked out the tiny airplane window over the vast beautiful clouds I felt peace. I knew in my heart that Jude was indeed finally free. He would never struggle to breathe again and he would never have tubes attached to his body. So at that moment I vowed to no longer wish for one more minute with him because I knew that minute would just cause Jude more pain. He had suffered enough so I simply said, "Goodbye Ju Ju Bean! I love you with my whole heart." and with that I looked forward. Jude would want us to all look forward.

For those that could not be there Jude's service audio is attached. I think it is rather inspirational and if you feel compelled please listen. Note it's about 2 minutes in our so before the service starts. When you hear Allen speak that was one of amazing Jude's nurses. Just copy and paste.  http://chirb.it/q9vn7g One thing you cannot hear is the entire congregation singing "Hey Jude" at the top of their lungs. It's why the person singing gets choked up. It was so moving. 

Thursday....

My - Heart - Hurts.

It's so selfish!! Jude is NO longer in pain but man my heart hurts. I feel like I have been cut in two and I keep thinking about his nurses as well. I want one more day to hold Jude and kiss his little head as I take in his sweet smell. We will be okay............it just takes time. Time! Emily went back to school today and although she said she wasn't ready to "life"' yet she held up pretty well!!

We are leaving Saturday and will be back on Tuesday. As I mentioned before the nights are almost unbearable for me. So we are getting away for a bit so I can try to come to terms with everything.  Mike seems to be my rock and is handling things so much better than I am. I am a broken mess and I always thought the roles would be reversed. So I am very thankful that he is here and holding my hand. Today when we got home from errands the company that was ordering Jude's new wheelchair was here waiting for us.......ninja! Anyway, we explained what happened and the salesman explained he had lost FOUR children! He said he and his wife had 6 and they had lost 4 in various tragic circumstances. I breathed deeply and counted my blessings.

I will blog when we get back and I want to thank everyone from the bottom of my heart. Thank you for the food, flowers, and for allowing me to grieve in the way I need to. I miss this sweet little face but I will choose to believe he is here in my heart.

Grief

Over the past few days I have been so busy I have barely had time to think. When I did think I don't think my brain functioned properly so my blogs have been laced with various emotions. Overnight and this morning we finally got some sleep. I woke up numerous times but early this morning I snuggled in and got several hours of good restful sleep. When I woke up I felt a bit refreshed but still conflicted and sad. I decided that I have always promised to be completely honest on Jude's blog and always share everything I felt. I now believe part of that is sharing our journey in grief. Other families need to know what it is like, but they also need to know that everyone grieves their own way.

This morning when I got up I still didn't eat. Our refrigerator is filled with food from friends and family but nothing sounds good. So I just immediately went to work and turned on some music as I sorted through Jude's room. Some people decide they prefer to keep their child's room the same but I decided seeing the medical equipment and personal items hurt me worse. I also knew all of his items could help families more than they I could help us. I started with his clothes which I knew would be the hardest and I pulled everything out of his wardrobe. I pulled out the items I knew I would want to keep and the ones that still had his smell. Many times throughout the day I smelled those particular items very deeply. I had called the oxygen company on Sunday but I had not heard back from them. I finally called them in tears today begging them to come take their equipment and they showed up today. The gentlemen actually showed up explained he had lost a child too and he hated he was here to pick up Jude's supplies. Around 2pm my doorbell rang and my best friend Gina was standing on the steps. She immediately stepped in to help with boxes and bags and help me sort through every single piece of Jude's items and his equipment. I also received help from my other Gena who found a faith based medical supply company that said they would pick up all the other equipment. Watching the oxygen leave my house was difficult because it sustained Jude's life. I found an amazing home for Jude's bed through a friend so I know it will be well taken care of and I am very grateful for that. Trust me that I miss him and wish I just had a few more seconds to hold him close.

Later in the day I was settling down to watch TV when I heard the doorbell. I answered the door and it was our normal trustworthy Fed Ex lady delivering Jude's supplies for the month. There sat boxes full of items and I just gasped, which Mike heard. He yelled, "Ninja's??" and came running. He calls the items that hurt our heart Ninja's. As he ran to the door I asked our Fed Ex driver if she could return the boxes to the sender and she just looked at me perplexed. I said "He died on Saturday" and I could tell her heart broke. She said, "Of course!" and she began loading the truck back with our help then she hugged Mike and went on her way. Tomorrow we have more supply companies arriving to obtain their items we had leased and then the major donation should be Friday. Then hopefully Friday night we will leave for some time away because the nights are killing me in this house. I am easily frustrated right now and I just need some time to act like my normal self.

Mike drove by the cemetery today to see Jude's mound with all his flowers but I have not been able to drive by yet. Today I really didn't want to leave the house until night set in and now I just want to run away. I know grief well because we have become very acquainted over the years. I know this horrible hole in my stomach that's filled with hurt will only lessen as the hole is filled with time. It won't even fully go away but it just takes a different shape and form.

Our nurses are grieving too and we miss them dearly. I think they probably find some comfort in the fact they provided Jude with the best care possible but I know their hearts are still aching. One thing that has been helping me is watching the video my friend Cristina made of Jude. We started his service off with it and each day as I crawl into my hot bath I put the video on and watch it several times. It's so comforting and makes me smile. So know throughout this grieving period I will be here and share with you my memories of Jude. It's my honor to share his life and the love that surrounded him every step of the way.

It's just Wednesday

In the past I have watched other parents before me grieve for their children and I could not relate to their emotions. Sometimes their posts were a bit overwhelming so I would bypass them with a heavy heart. This may be one of those posts some may want to avoid. I am broken hearted. I may seem like a pillar is strength but when I get home and the silence sets in I miss my Jude. Tonight when we finally arrived home from Jude's services I needed to take a bath. I turned to ask Emily to watch Jude and just sighed and touched my chest. Not only did I realize Jude is not there but I realized Emily is leaving soon too and Mikes father is still also very ill. It all became very overwhelming. I just wanted to take Jude out of his bed and hold him in our normal fashion while I smelled his sweet hair and kissed his forehead.

I remember when Jude was very ill or another pediatric stroke parent lost their child I thought the world should stop, but it doesn't work that way. I have a husband that feels alone because I'm grieving so bad my entire body aches and I have a daughter that cannot be alone at night. All this but tomorrow it will be just another Wednesday for most people filled with work and school.  Just another day of the week but the weeks march on and we must March on too. Tomorrow proves to be difficult as we donate all of his items to those that need them. His organs may have been to damaged but his equipment will help so many. Thank you to all that came to his service!!

Mike and I may go away for awhile. There are no final plans because I'm really tired but if it all comes together I'm shutting my phone and blog off for a few days. Thank you so much to all those that loved my Jude! I know we will get through this and Jude will be there holding our hands.

Jude's Amazing Room

I won't sugarcoat this situation because it's been rough. When everyone is gone at night, the silence has become deafening. It is very difficult for me to eat and even harder to sleep, but we are making it. I finally got about six good hours of sleep overnight. I am used to having our nurses here, and I miss them dearly. I normally walk out in a sleepy haze in the middle of the night asking Candice how Jude is. I miss Charlotte and Allan's smiles in the morning, and most of all, I miss Jude's smile. The house seems empty without the rise and fall of the loud oxygen machine or the beeping of his feeding pump.

The visitation last night was amazing. We were so touched by all the people that turned out to see Jude prior to his service. There were people attending that I haven't seen in 35 years that followed Jude's journey who just wanted to reach out. I was overwhelmed and grateful. The outpouring of response to my blog, our Facebook, Emily's Smile Boxes, and more shows just how far reaching Jude's message was. My grandmother said last night that Jude was put on this Earth to make us all better and I believe that's true. I have felt a bit torn as a mother because I am not sure how to quit parenting and taking care of my son. I also felt like I would have some instant gratification in a form of a sign that Jude was okay. That didn't happen. Saturday and Sunday I searched everything smells, clouds, words of peace, but nothing filled my heart. Then last night as I bent down to kiss Jude one last time I saw him smile. I thought I was hallucinating from lack of sleep so I looked again and there he was........smiling at me. I just stepped back and exhaled. I had one good last cry and then realized Jude is no longer in pain. I had to admit that he was really struggling and really in pain which is evidenced in his pictures. He is now FREE and I have to celebrate that. He deserves to be celebrated and today that's what I plan to do. Today his service is about his amazing life not mourning his death. We plan to do just that. Jude is free of pain, Praise the Lord Jude is free.

I was going to save this picture until after the service but I believe it needs to be shared for all our readers all over the world. To all those that cannot make it today. Jude was in our living room most of the time and couldn't truly enjoy an amazing little boys room. Therefore, we wanted to make sure he had an amazing room to sleep in. Thank you Trey Ganem for your fabulous artistry.

Jude's Service Information - Please share.

Jude's services

Monday 4/11: Visitiation
If anyone would like to see Jude please come between 6-8 pm at Lucas Funeral Home.

700 W Wall St, Grapevine, TX 76051. We will close his casket after the viewing.

(817) 488-7566

His funeral will be Tuesday 4/12 at 11am. Keller United Methodist Church. 1025 Johnson Rd Keller, TX 76248

The burial will be private

We ask that everyone wear something comfortable because that't what Jude would want. He loved the color red and we thought he was a super hero. So put on your best superhero T shirt or outfit and let's celebrate this amazing boys life!

What Happened And Our Blessing.

After not properly sleeping for so long I should probably be in bed but I am not (true to fashion). So you will have to forgive any ramblings or bad grammar. I told Mike that when Jude passed I should probably stop my blog and he said that if he was reading this as a book he would be mad he didn't know the exact ending. I feel like some people may want to read this particular update and some may choose to move forward without this information. So I will leave this at your discretion to read.

I blogged on Thursday that Jude's health had taken a rapid decline and I am afraid this continued into Friday. After a week of Jude's nurse Charlotte lovingly trying to help him with his horrific lung pain,  Nurse Allen show up for his Friday shift. It wasn't easy and hospice came to check on Jude. Around 2pm I received a call from them and it's one I won't forget. I heard the words, "Honey I think this is it," and I melted into a ball of sobbing blubber. My friends and co-workers came rushing to my side holding me as I sobbed and spouted off statements about getting Emily to Dallas. It may sound like a ridiculous statement but we will get to that information. My friends were calm and collected and merely asked what they could do but I tried to recover myself. I realized I needed to pull myself together and make sure my kids were first. So I grabbed my purse, grabbed my keys, and with a tear stained face I explained I had to go.

I drove home my normal route down the windy country road laced with green grass and wildflowers. As I passed the cemetery I think is so beautiful I wondered if I would soon be reaching out to ask for residency for Jude in such an amazing place. Once I got home the hospice nurse was still there and nurse Allen looked blessed but concerned. I noted that Jude's breathing had taken a sharp turn for the worse and his tiny little hands were growing cold to the touch. The tears streamed from my eyes and I hugged him tightly. I began to tell him just how amazing he was and then I turned to the situation at hand. Emily is due to give up her Miss Dallas teen title this weekend and although unimportant in the grand scheme of things I knew this was fate. Her pageant family is amazing and with one touch and one phone call her needs were handled. Her amazing father stepped in and so did so many of her friends. Emily is being watched after and I rested easy on that stand point. I knew she would want to remember Jude as her smiley beautiful brother full of inspiration and hope.

Once Jude's weekend  night nurse got to the house we explained his grave situation and she was devastated. See our nurses are also our family. She kissed Jude, loved on him, bathed him and more. His breathing grew louder and I laid in my bed begging God to make him comfortable. Around 3am his breathing slowed and I could no longer hear him. I finally slept for an hour or so. When I awoke I would wander in my living room looking at all Jude's equipment and sat calmly on the couch hoping I wasn't disturbing them but yearning to be close. I would wander over and kiss Jude and tell him how amazing I thought he was. Finally at 7am Nurse Allen arrived and I walked over to Jude and the night nurse explained how she thought Jude was rallying and might make it. I walked over to his bed and leaned down, grabbed his head, and kissed his hair. I said, "Darling boy I love you with all my heart and soul but I never want to watch you suffer like this again. I will see you soon baby." and I went to bed.

Fifteen minutes later Nurse Allen knocked on our door with tears in his eyes. Jude's tiny little fragile damaged lungs could no longer keep up. Mike and I walked to Jude's bed and holding hands we kissed his tiny little face and told him goodbye. Despite how strong I think I am Mike was ever the giant in this particular situation and he explained to Jude that we will be there together soon to hold him. We then tried to curve information on social media while we called family and deflected information going to Emily until we could get to her.

Soon hospice arrived to pronounce Jude and amazing people came with tenderness and care to take him to his forever home. Mike and I then drove to Dallas. With the help of the amazing pageant family surrounding Emily we walked into a private hallway and as she looked at me perplexed I said, "Oh honey Jude died." and she burst into tears. She cried for a good 20 minutes as I showed her picture of  his casket and more. I knew she would want to be involved. Then suddenly she looked up and said, "Please tell everyone I said not to cry. When we cried it made Jude cry and he wouldn't want that." and she meant it. She text me later tonight and said she wanted to make sure no one thought she was being strange but to understand she is being positive which she thinks is important. She knows coming home will be very difficult because it's so very quiet here now.

It's been a menagerie of information today.  People want to help but honestly we don't even know where to turn yet. We have meeting tomorrow to set final arrangements and I can say that having a big turn out at this inspirational boys services will mean the world to us. I understand many people will relate this to their world and no one wants to lose a child. I just ask you to bear in mind that Jude was pretty amazing. Without speaking one word he touched thousands. How amazing is that?

While driving home tonight I remember thinking that I have been around death so much in my life that I am very cynical of signs. Then looking through my photo album I found this. Taken on 3/28 in his bed with full sides there is a strong light presence there. Jude truly had angels around him.

I think Jude had some pretty amazing angels and now he is one. Seven years, Seven months, and Seven days this boy graced the Earth. So many people think I should be devastated but look how I was blessed. How lucky was I?? "I am okay I am alright although you have gone from my life. "

I have read so many of the amazing tributes to Jude tonight. I have also read all those with small children who are confused. I guess I learned with Jude that bad things are just going to happen and although we have to handle them it's at your discretion how to approach them. Just let your children  know that Jude spread so many smiles. That giving to others is the best reward you could ever hope for. Please know I will post his service information here.

Love Always,

Jude Is Gone

At 7:50AM Jude walked into the arms of Jesus. My son may never have walked, or ran, or played in a park but I believe he has touched more lives than most of us ever will. We have shed many tears this morning but are so incredibly grateful to have been there to tell Jude goodbye. I want you to know that he loved each and every one of you. 

His services are pending but we will be using Lucas Funeral Home in Grapevine, TX. I will post more when I have the information. 

"You know that place between sleep and awake, the place where you can still remember dreaming? That's where I'll always love you. That's where i will be waiting." Peter Pan

I love you Jude. You were my heart. I am not sure how to not parent you anymore but I know you will be there to guide your father and I both. I have no doubt my mom is rocking you in her rocking chair right now and my grandparents are waiting for you at the park. Go and run my son! 

We are sorry for the delay in notification but we wanted Emily to know first. 

Much Love

Jude's Night

Last night Jude's breathing was so scary and Mike even mentioned that he was truly concerned Jude wouldn't make it through the evening. However in true Jude fashion he did a bit of a turn around. I took him out of his bed and held him close holding his chin in an upright position to stop the apnea and raspy breathing. I did this for about two hours and Jude began to calm down and fall fast asleep. I was so happy he was resting comfortably in my arms and I gave him lots of kisses while he slept. 

 Hospice instructed us to turn off Jude's feeds so that we could try to get some of the fluid off his lungs. However I knew that running a slow drip of Pedialyte could help flush his body so about 3am I asked the nurse to put that on. Jude has been sleeping calmly ever since. I did end up coming into work and when I left I could hear some wheezing but he was still comfortable. 

The big test will to see how his day goes today. He did still have some crying out in pain last night but not as bad as he had throughout the week. So therefore the pain management course hospice has put him on is working. Hospice has informed us they will be going by to see him today and check on his condition. They also informed the hospice doctor last night of his condition. 

I really just want to be at home. I am also having the WORST allergy attack so thank you Texas for that situation this morning. I have to get Emily to Miss Dallas tonight so she can give up her crown this weekend but I really don't want to be away from Jude. I know his dad will keep me updated so I will stay close to my phone. 

Jude's decline

Jude has taken a rapid decline. Hospice has been here and we are trying to control his comfort. Jude has a way of bouncing back but we have crisis care on stand by if needed.

Frustrated but making it

So the short of it is that it's been an extremely stressful week. I think I have blogged that statement so many times that it has become irritating for me to read so I am sure it's frustrating to you. You know it's a bad week when your husband is crying begging God to just give us a break for a change. 

Basically Jude is not well. He is in pain and is crying most every evening and fighting oxygen issues. He has good hours filled with smiles and bad hours filled with pain. So hospice is setting up a pain management schedule where Jude will receive pain medications around the clock to hopefully offset any pain that could be coming on. There is a debate on whether this is respiratory related or intestinal and everyone has varying opinions. On top of this Mike's parents are not well and he and his sister are having to make some very stressful decisions regarding their care and finances. My grandmother always says, "Getting old isn't for the weak." In addition to these issues we had a situation creep up with surrounding our home that will probably have us sell within the next few weeks. I am also still waiting on nursing for this weekend and I have to go see Emily give her title up at Miss Dallas. I will enjoy myself but I will worry about Jude if we don't have full time nursing on Friday and Saturday. I have also met with some backlash on the Go Fund Me I set up for my friend which has been extremely frustrating. I won't go into details on that situation but just know the family appreciates your continued support. 

So I am overwhelmed. Story of my life it seems but yet again I am reminding myself it could be worse. You just take one step at a time and laugh when you can.  

A Tragedy, A Staycation, and A Visit.

Mike and I had our staycation from Wednesday through Friday. It was nice to be able to relax but it was also without fail laced with some issues. Tuesday when I got home from work I received a message from a friend asking if I heard that an acquaintance of ours was in a car wreck. I told her I was not aware and then she proceeded to tell the wreck was extremely serious. Our friend Patience was in a coma and her husband was killed on impact. Although we were not super close I have known this family for about fifteen years. We met in the pageant scene and they are one of the biggest supporters of Emily's Smile Boxes. They have attended almost every event Emily has had and they said the September walk/run was their favorite event of the year. This family was all about giving back to the community and never once asked for anything in return. At Emily's box making parties they were always the first ones to volunteer to take the boxes to the local pediatric hospitals to drop them off. If they weren't volunteering with Smile Boxes they were helping tornado victims, holding food drives, volunteering with Meals On Wheels, and more. My friend Patience had overcome many challenges in her life and it doesn't seem fair this would happen. Now a family sits in a similar position we were in so many years ago. However a situation that looks so much more bleak. I have decided that this year at Emily's big event we are going to put stickers on every box in honor of Patience and Scott.  Its the least we can do after they gave so much time to Emily's charity. If you would like to help Patience family in this time of need then here is the link to her Go Fund Me page. She had multiple children and we want to make sure they are cared for in the best possible manner. https://www.gofundme.com/forpatience

It's never easy for any family to encounter a major tragedy and the discussions that are held are difficult. More often than not those discussions and decisions are also judged by others and they really shouldn't be. Deciding what someone would want regarding quality and quantity of life is the most difficult decision there is to make. It's hard to realize that sometimes there are fates worse than someone passing and vice versa. I hurt for families every time I see them walking a similar path. 

On top of that situation Mike's dad wound up in ICU on a ventilator. His condition has some improvement but it is still very serious. They are taking his situation day by day and Mike has been visiting the hospital. 

During our staycation we had an appointment with the medically dependent children's program to re certify Jude for another year. The case manager and a nurse came to evaluate Jude and to take down notes regarding his last year. While the nurse was there she asked if I needed anything and I explained I needed everyone to stop denying Jude's nurse. She was stunned that Jude had ever received any type of denial based on medical necessity. She just shook her head and kept commenting on the issue. She said "Baclofen pump.........needs a nurse, Continuous feeds......needs a nurse, Controlled substances....needs a nurse, etc." I just shook my head and agreed. So Jude's complexity according to MDCP has changed and he is now the very top level of medical necessity according to their charts. They consider the Baclofen pump an IV and said his care never should have been questioned. If I could only have the nurse and case manager with me each time I fight these denials. 

Jude is doing well but he has been crying some at night indicating that he is dealing with some pain. We control it the best we can and generally with work we can get his smile back. I will share some more regarding places we visited tomorrow. It's not super interesting but I enjoyed it. 

The Update

It's been an odd few days filled with negativity but saved by joy. On Friday Mike and Nurse Allen took Jude to the hospital to have his feeding tube checked. As I stated before the tube started to become difficult to flush the day after he returned from having it replaced. I wasn't sure if they would find another issue with his intestine or what the outcome would be. I was surprised and angered when I heard the doctor found nothing. I blew up at Mike asking him why he didn't demand that the hospital fix the potential issue. This in turn created a huge dramatic fight between us. See people........it's not all roses and sunshine. We have fights and arguments due to the mounted stress upon our shoulders just like any other couple. It wasn't fair of me to demand answers from Mike when he and the doctors were only doing what they thought was best. This drama led me to need a bit of a break from the medical world that surrounds us. I just needed a time out but I didn't really get that.

I think one of the issues was that I had a realization of the problems at hand on Friday. Mike explained that the nurse at the hospital explained to him that once you have an intussusception you have a high chance of getting one again. So I looked at Jude and realized I have invested so much time and concern into his lungs and that it may not be his lungs that are the most vulnerable. I guess it threw me for a bit of a loop but I was okay with the situation and needed a bit of quiet time to process my thoughts. A reminder from life that you shouldn't worry about that which you cannot control.

Saturday we had a nurse throughout the day so we went to my fathers house for an Easter celebration. My thoughts bounced between having a relaxed fun time to worrying about Jude. However it was so nice to be surrounded by family and to see Emily light up. She flew a kite and had the best time. My heart was happy.

When I got home Jude was perfectly fine and happy to see me.

 

So it was overall a good weekend. Today I had to run back over to pick up some items I left at my dads house and we had a discussion about the miracle of Jude. How he has blessed and touched so many people. We discussed my current effort to turn my blog into a book and how he may in fact even reach more people. His light, happiness, and fight is so inspirational. Plus he teaches so many valuable lessons. In fact more than once this weekend I have said. "I have enough going on in my own life to ever judge or make assumptions about someone else's life." A lesson Jude taught me and I am thankful to him.

Jude's Feeding Update.

Jude has another appointment at the hospital on Friday at 11. Basically the feeding tube is hard to push again and last night his belly was distended. He was crying on Monday but he is much better now and smiling. The doctor said if Jude gets worse it's an emergency and to get to the ER immediately. I hate Jude has had to go back to the hospital so much because that was never out intention. We wanted him to be in peace at our home but we cannot allow him to be in pain. 

My guess is they will remove his current feeding tube and put in a G button again. I never thought feeding issues would be such a problem with Jude again. Nurse Charlotte has marked Jude's stomach and is keeping track of any swelling. 

The Feeding Tube

As a follow up to my blog on Wednesday we did take Jude into the hospital. Well myself and the paramedics took Jude the fill in nurse was suppose to follow us to the hospital but she never showed up. I would have been fine if she explained she was going to go home but I was rather irritated she just left me wondering where she was at the hospital.  The medical staff did a sonogram and said they no longer saw the intussusception. This was great news but right after they did the sonogram Jude started crying and he never really stopped. He fell asleep for a bit in the ambulance on the ride home but that didn't last long. I had noted that Jude had not urinated all day. So finally we called Hospice and as usual they arrived promptly and they placed a catheter in Jude. This seemed to be the source of the problem and thankfully Jude stopped crying. 

Jude did vomit a couple of times yesterday and we noted his brand new feeding tube is now a bit harder to flush. This makes me believe they have missed something and we will probably have to go back to the hospital again. My guess is they will eventually take this tube out like I stated before and we will go back with the G button. I tried to see the bright side last night and pointed out that if Jude does go back to a G button we have a night nurse to help with vomit at night. We used to not have a nurse and Jude would aspirate prior to us getting to him. I also pointed out that we can change the G button at home vs. the G/J which is surgical. 

Jude was also started on a broad spectrum antibiotic to help the pain of the pneumonia. He is pretty sleep today but otherwise he is doing pretty well. It's been a stressful week and we are all running a bit low on patience and cheerfulness so bear with us. 

If You Ever.......

If you wonder why we're not at work 
If you wonder why we don't get out 
If you wonder why we are sad 
If you wonder why we are glad
If you wonder why we covet sleep
If you wonder why we haven't texted back
If you wonder why we haven't called
If you wonder why we haven't played our turn.
If you ever wonder why we seem uneasy
If you ever wonder we seem content
If you ever wonder the hospital terms that roll off our tongue
If you ever wonder why sometimes the hospital is a must
If you wonder why none of these feelings mean much because Jude's feelings always come first!
If you wonder at all then I am so glad you do because it means you don't have to understand it and I am thankful you don't! 

Be grateful for all you have because we are. 

Jude's Problem

So here is where we stand. We were hoping the change in tube yesterday would resolve the issue but unfortunately it didn't. At around 9pm last night while changing Jude he vomited violently and I have no doubt aspirated right into his lungs. About thirty minutes later he started looking pale, his smile went away, and he started running a low grade temp. He continued to vomit some and he did so with the night nurse too. 

So this morning I put a call into Hospice who is going by to see him today. I then put a call into the GI to see what their thoughts are. Basically they believe the intussuception is still there and probably has significant swelling. They want to bring Jude back in to do a sonogram of the intestines. If they see swelling then they will be taking the G/J tube (goes into the intestine and tummy) out and putting a G button (goes only into tummy) back in. If you remember the reason we put a G/J in is because Jude kept vomiting with the G button and would wind up with aspiration pneumonia. Basically they explained this is not the best situation for Jude but they don't want him lying in bed uncomfortable, vomiting, and letting his intestine die. 

So I am waiting on the hospital to call back to set an appointment to do a sonogram. We will have to set transport up to take us back out there. So I will update everyone. Also Jude's chest X Ray came back yesterday with no definitive answer which is what I suspected. However they did say there has been an increase in lung loss and that he either has an edema or aspiration pneumonia again. However the X Rays are so overcome with disease that it's hard to tell. 

A Trip To The Hospital And Jude's Appeal

It's been an awful day. It could be worse but it's been stressful. It's not worth going into all the details but trust me. Jude was transported today to the hospital to have his feeding tube replaced. Since he was vomiting this was our first step to try to find a solution to the problem. I was not able to attend the visit so Mike and Nurse Alan took Jude. Transportation did not go smoothly like it normally does but Jude got there okay. I then talked to the doctor later in the day and he explained to me that Jude had an small bowel intussuception caused by the GJ tube. Now bear in mind I am not a doctor but my understanding is this is where part of the intestine is pulled (the tube) or collapses into another part of the intestine. The doctor said this is a rare but known complication of the GJ tube. Jude always hits those rare marks. Anyway, the sad part about it is the situation is very painful and to me it explains why Jude was so upset last week but doesn't explain him being so happy this week. However it does explain all the vomiting. 

The doctor said he hopes that the procedure he did today will control the problem but if it doesn't we have to come back for a sonogram. He then said they would either shorten the tube or go back to NG tube feedings. UM NO! I explained that I hope today's procedure it successful because I do NOT want an NG tube again. That was a nightmare. He replied, "Yes that's a good word for them." He then asked me to please call the GI at Cook's. He had been busy and wanted to make sure the GI was in the loop so I did so. Radiology also completed a chest X Ray on Jude today but I highly doubt it will show anything other than white chronic lung disease. I believe we just look for symptoms now versus reading an X Ray but I could be wrong. 

So now the interesting part. While dealing with work, home, Jude, and more I was also dealing with the health insurance. I had received an explanation of benefits and after combing through the lengthy pages of summarized payments to various medial facilities I saw the nursing wasn't paid yet again. So I put a call into the health insurance company and I was told that Jude was once again denied insurance benefits. Let me explain. Mike's employers picked Aetna as their provider. Aetna uses another company to take care of all their billings, summaries, and benefit explanations. That company and the employer then use even ANOTHER carrier to decide medical necessity. We received a letter from the medical necessity company in January explaining that all private duty nursing from 1/1/2016 - 12/31/2016 had been denied for Jude due to no medical necessity. Per my prior blog I went through a lengthy appeal with this company and won. So on 2/22/2016 we received a letter stating the private duty nursing from 1/1/216 - 12/31/2016 had been approved. That's great...........however Jude capped out on Nursing in July 2015. So therefore this company subjected us to a stressful ridiculous appeal for no reason. They have ZERO explanation and even confirmed they called the health insurance on 6/9/2015 and 1/22/2016 to verify Jude had reached his lifetime cap. So to a normal consumer who is reading an explanation of benefits it looked like Jude capped for the year in 2015 and in 2016 they were challenging the nursing. Therefore we appealed and won.  Nope, Jude's capped for a lifetime and all that stress and emotion was wasted for no reason. It's unacceptable and something needs to change.

Again we are lucky that Jude has a Medicaid backup but the health insurance processes are ridiculous.  

A Restless Night and Jude's Issue

Story of his life, Jude is sick but smiley. Yesterday he started vomiting and really never stopped until we gave him Zofran. The medication would last about four hours and Jude would start all over again. He is also vomiting what looks like infection and he is running a fever. He is pale but again he is still smiling. So I am looking at this like it is probably the start of aspiration pneumonia again. However I think this started as a feeding tube issue. I believe his feeding tube has come out of his intestine and wrapped into his tummy. This is causing Jude to vomit and bringing up what's in his lungs too.

We are taking about 50 ml of residual out of the G (tube feeders will understand). Jude's diapers have greatly decreased and his urine is dark too. It was a very long night last night and I just couldn't sleep. just did fairly well but his oxygen kept dipping and he had a horrible retching cough. So I made several phone calls this morning and the plan is to get Jude in at 10 am tomorrow to change his tube. We will then wait and see how he does to determine if he needs antibiotics for possible aspiration pneumonia. They wanted Jude to go through the ER but I explained he is on hospice and our job is to keep him comfortable. Admitting him would not make him comfortable. So they helped us and we are getting transportation set up to get him to the appointment in the morning.

Staycation, Jude, and Being a Special Needs Parent

Jude is doing as well as can be expected. The weather has wreaked havoc on his system which means we are dealing with tight muscles, pain, and crying. We have continuous oxygen issues with him in the evening but I can normally get that under control before the nurse gets there. Last night he was crying again when I got home so I gave him some morphine and he was finally very happy. I hated watching him just lay in his bed so I sat him up to hug on him and that set off a chain of events. He began vomiting, then choking, and then vomiting more. Once I got him cleaned up and settled I turned around and said, "No one touch the baby!". Yes, he is still my baby. 

Mike and I had finally starting looking at planning our mini vacation at the end of this month. We started researching places we would like to go and found some hotels that looked inviting. We had set forth a plan and secured help with my friend and Emily covering Jude until the nurse got there each night. Then the nursing agency called and said the normal weekend nurse had requested off 4/1. Then Emily came to me and said her play had been scheduled for 3/30-4/1. Then just more shit kept piling up and I realized it's just not going to happen and I am okay with that. The reality is that Jude's care is extremely complicated and it's very difficult to leave him with anyone other than his regular nurse. We also rely on individuals that are coming to a job each day and sometimes things happen to prevent them from making it to work. I don't want to be hours away and have Emily stuck without a nurse to help her with Jude. That would be horrific. So I realized that while Jude is with us he needs our care and that's just the way it's going to be. So I am planning a grand staycation! We will visit places around our area. If we are able to secure nursing for on one particular day than maybe we will stay at a hotel close by overnight. At least Mike and I will have time away from work to reset and relax while spending time with each other. I don't need to go away anywhere because the problems we face won't be resolved in one simple vacation. 

I have read a few articles recently about special needs parents and what they face each day. As the years pass I sometimes read these articles sighing to myself thinking everyone has their own issues might aren't any harder than what others face. However I do nod my head and agree with certain parts of the articles though. This morning as I read one I really started laughing to myself because I can see how far I have come throughout the duration of my blog. So I thought I would touch on my personal thoughts regarding some items that have been mentioned on various articles. 

Special needs parents are: 

Boring: I will agree with this. My daughter constantly tells me I am old. During the week we work, come home, walk the dog, drink wine, and go to bed. We do little else. Between 5-10 we don't have a nurse and getting out of the house really isn't an option. It's perfectly fine with me now. I love watching my shows and I have gotten very friendly with Pay Per View. 

Lonely: I will admit this is true at times. Relating to other parents that attend school functions, participate in holiday activities, and don't fight with insurance companies on a regular basis is difficult. Even in a room surrounded by people you can feel very lonely at times. 

Don't accept invitations: Oh this is me! I have actually lost friends over this one. You're right I don't. First off I know something will probably happen to prevent me from attending. Then there is a timing issue because most parties and other functions will run past the time Jude's nurse leaves. Either that or some functions are so far from my house that by the time I get there I have to turn around to go back and relieve the nurse. I am also extremely selfish with my time now and I readily admit that. To top it off I am even more selfish because I want people to come see me and attend functions with me but I am not reciprocal. I am afraid it's just the way I am now and that may be a flaw on my part. The weekend day time is the only time I have free to be with my husband outside of the house. I don't like driving freeways and I would rather not stress out trying to make an event. Yes Mike and I can switch off caring for Jude alone but it's so much easier if we work as a team. 

Hate the R word: This is not me. I am not one of the special needs moms that readily advocates getting rid of the word retarded. I get why people do it and I fully respect your view point. I am just one of those people that is not easily offended and I just brush it off to their ill education mixed with bad manners and keep walking. 

You compare your parenting skills: I used to do this but I don't so much anymore. In fact I have even unfriended a few moms of children with special needs or stopped following their blogs.  It wasn't anything personal I just couldn't relate to their lives anymore. I admired how their children were making progress but the sharp reality is Jude isn't. It was coming to the realization through diagnosis and more that Jude's body doesn't have the capability to improve. His lungs are full of scar tissue and fluid, his upper torso has no control, and his immune system is very weak. Some moms would see this as a sign of weakness or giving up when I see it as a step forward in a direction of understanding and improvement. By grasping the fact that Jude cannot participate in therapy, schooling, and other advancements I acknowledge that he is still pretty damn amazing. It frees up my time to appreciate Jude for just who he is and love every single part of his frail body. When I finally stopped and finally listened to the doctors I felt so free and I noticed a huge change in Jude too. I also feel I have grown so much as a person since I started this journey. I used to be so immature and now I feel like I have matured so much that I don't need to compare anymore. 

Are fearful: Maybe. I think the only true fear I have left out of this situation is being concerned about Jude outliving me. Isn't that an odd thing to fear? I fear losing my child and I fear dying before him. I worry that if something happens to me he may not get the type of care he needs and deserves. If something happens to Mike and I both that puts the responsibility into Emily's hands. We have a will and estate plan in force but Emily has already protested that she would want Jude. This worries me because as much as she loves Jude that would be a lot for someone so young to take on. My other fear is losing Emily, I just couldn't handle it. I have told God that many times. 

Have a hard time when people ask about my child: Not really. The hardest question I get and I get it daily is, "How is Jude?". I really don't know how to respond. Mike always says "On hospice". I don't want to tear anyone's emotions down so I generally response "sick but smiley" because it's true. 

That's all for today. 

Scoliosis and Jude

Jude was so smiley yesterday when I got home that it literally made my entire day. He was smiling so big that his little dimple on the left cheek was showing brightly. However he was also having such an issue maintaining his oxygen levels that we eventually just turned off the monitor. About an hour after being home Jude started whimpering again so I took him out of his bed to sit him up on my lap. He loves his lap time and will just sit and babble to everyone that will listen. He is so heavy now that I end up having to lay him across my lap but he loves being held. 

Jude's Scoliosis has gotten so much worse. This week we noted a remarkable change and that his spine is almost completely to the left side of his body now. I am no doubt this is responsible for a lot of his pain. The nurses do their best to keep Jude in his wheelchair sitting up straight for several hours a day but he can barely tolerate it anymore. Therefore, we are researching a new wheelchair and will be working on obtaining one. Jude does not tolerate the stander at all. I am sure it's a combination of his feet and the inability for his lungs to function properly. I feel terrible for him and I am sure it's causing a lot of pain. I hate seeing his little body twisted and his feet turning in. It's amazing how our bodies react when we don't walk or sit up on a consistent basis. 

Hospice came by and checked on Jude twice this week. He still runs an intermittent fever occasionally and has been crying out in pain. It's always been a battle with Jude trying to figure out the source. I do think it's partially neurological but we have also seen an influx in recent seizure activity. This generally means Jude is getting sick but the sickness hasn't reared it's head in a way that we can pin point it yet. The good news is Jude has hours where he is still very happy and that's good.