The weekend update

I ran across this old picture today on Facebook and it made me smile. Jude's cheeks look so pink and healthy and Emily just adores Jude.

My kids have a great bond with each other. However the other night Emily was telling me how it's so odd for her to be around other children Jude's age that can run, jump, and play. I do have to admit that it made me rather sad for her that she missed the experience of having an ornery little brother around. Although I am grateful for the blessings that Jude has bestowed on Emily's life. 

Years ago I had a former client who saw a picture of Jude and asked me what happened to him. I explained the situation and she proceeded to tell me that my ancestors must have done something terrible and I was cursed with their punishment. It took every ounce of strength for my fellow co worker to stay seated and not march into my office and take care of the situation. I just cocked my head to the side and began to squint at her and wondered how she functioned daily. I was kind and just replied that I personally think my ancestors did something amazing because Jude was a huge blessing. She didn't seem to like that answer much. 

Jude didn't have the easiest weekend. When our Friday night nurse arrived she said she heard zero air movement in his lungs and was afraid he was getting sick again. She worked with him and finally got some ronchi sounds. Saturday the fill in night nurse no showed on us which was just LOVELY. Especially since Jude was already not feeling well and was a huge aspiration risk. Mike stayed up with Jude while I slept and then I took over at about 3am. Of course Jude decided to puke and poop for me instead of Mike. Jude thought that was very funny too. Sunday Jude started running a fever of 100.4 and had some significant oxygen issues throughout the day. In the evening he was miserable and nothing would appease him except me holding him. If I laid him down he would start crying again so I spent the better part of the evening holding Jude. We had a fill in night nurse last night and she did pretty well with him. She did end up having to give him some Morphine to help his respiratory system. Today's report earlier in the day was more positive so I am hoping he will feel better tonight. 

It's been a year

When I got home from work last night Mike handed me a letter from the insurance company. I just sighed and looked at the envelope with disgust. Once I opened it and read it in detail I realized they were now denying Jude's hospice care. At first I was a little upset and then I realized this is probably a lifetime cap that Jude has hit. The average adult spends 6 months on hospice when the average pedi spends anywhere from 6 months to 3 years on hospice. So I put a call into the insurance company and reached a woman who was very kind. I could tell she hated to explain that we had indeed met Jude's cap. As I took my nightly walk I began to think of all the people both elderly and young that face terminal illnesses. The people that don't have a medicaid backup and I began to think about how stressful it must be for their families. I thought back to when Jude didn't have MDCP and how our family struggled just to make it. Tragic situations can financially ruin families and that's just a horrible fact. So although I fight tooth and nail to maintain Jude's nursing I am grateful for the medically dependent children's program in Texas today. 

I haven't slept well the last few nights and I am extremely emotional today. Partly from the lack of sleep and the other part knowing it's been one year today since we brought Jude home on hospice. I looked back at my blog posts from this prior week in February and on the 4th this stood out to me. "The ICU doctor also sat down with Mike and myself and talked to us about intubation. She pointed out that Jude could be intubated to where he gets over his illness and is his smiley self again, but he may not. She said there is no judgement at the ICU and that sometimes we have to look at the facts. That sometimes dedication and love means realizing that we don't want our children living the rest of their lives in hospitals. The rest of their lives on medications, struggling, and in pain. She said the older children like Jude tend to start getting more hospital stays and they become longer with each visit. I listened to her with a heavy heart and I knew she was being as kind and as honest as possible. I knew that even if Jude gets better this time...........he has a long road ahead and that road always has the same ultimate ending. So my job is to hold his hand and walk that road with him as long as I have the honor to do so."

I remember how kind the ICU doctor was and how you could tell her words were as honest and forthcoming as they could be. I appreciate how sweet and honest she was. Then I looked back to the blog I wrote when we brought Jude home and I recalled every raw feeling I had that day. http://www.cjengo.blogspot.com/2015/02/only-love-judehardest-blog-i-have-ever.html

The last year has not been easy but it's been one full of smiles from Jude. We have been blessed with our time with him and he is such a little fighter. Mike and I have struggled with our own depression, stress, and not so great coping skills. We are thankful for Jude's nurses that take great care of him and have became extended members of our family. We aren't sure what the future holds but we are here holding Jude's hand the entire way.  

A quick little update

Sorry I haven't blogged I have been a bit overwhelmed at work. Jude is doing about the same as he was. He has good days and bad days and the same goes for the nights. His oxygen is still presenting issues and he is running consistently at about 5 liters and up now. Our weekend night nurse said she believes Jude's diaphragm muscles are growing weaker due to all the coughing. However Jude is still smiling and is still fighting and he may be with us years to come. 

Mike and I are both feeling a little claustrophobic in the house. I think this is a natural reaction and we will figure it out. 

I hope everyone is well. 

Wednesday's update

I had someone contact me from the health insurance company regarding the appeal. She stated she received two letters of medical necessity from Jude's doctors and was wondering if I wanted to wait to turn in more. She is holding the file until tomorrow or Friday. I told her that I would like to obtain additional letters and I was able to obtain another one today from Jude's prior neurologist. I have also put requests into hospice, his pediatrician, and his GI. Each one seems disgusted that Jude has been denied nursing again and hospice is concerned this will lead to a Medicaid denial again. So basically we are stalled waiting on these letters and then they will submit everything for the appeal. She did clarify that it's given to an outside source but did not clarify if it would be an RN or doctor. 

Hospice went by to see Jude and they said he actually looked pretty good today. He was up in his wheelchair and did not have as many secretions today. However his seizures have picked up greatly. I am anxious to get home to see him today and give him a big hug. Thanks for everyone's continued prayers and thoughts for Jude. 

A little update on Jude

Jude is continuing to have oxygen issues and we have seen a pretty large increase in seizure activity. However even when Jude isn't feeling that well which is evident in the first photo he still manages a smile. 

Hospice is coming out to see him tomorrow for a check up and to let us know their thoughts. Our night nurse did notice diminished breath sounds in the right lung. That's not good because his left lung already gives him issues but like I mentioned Jude is still smiling at us so that's positive. 

He has been a good boy lately. I cut his hair over the weekend and he really enjoyed it along with the shower that followed. Then I gave him a quick break from his oxygen mask and set him up on the bed with our German Shepherd Leibe. She licked Jude's cheek and nudged his hand which he thought was hilarious. It was a very sweet and touching interaction. Leibe was very gentle and kind to Jude and seemed to understand his condition is fragile. I miss other animals that have been in our lives but Leibe is by far the best animal for Jude. We love her dearly.

Um huh???

I am in MUCH better spirits. I was able to get lots of rest and reset time this past weekend and it did wonders for my psche! I did speak to the health insurance company again today to find out what their next steps are in regards to the formal appeal. I had to share the conversation because it's rather laughable. I asked the lady that answered what the next steps were regarding the appeal. 

Her: Well it will be assigned to a nurse and I show that has been done
Me: Wait I am confused. So a nurse makes the next decision regarding if the claim will be approved
Her: yes that's right
Me: So the other day an RN case manager called to tell me our informal appeal had been denied. When questioning her the specifics I was told she was only a nurse and could not over ride a doctor and that it's only the doctors opinion that matters and he had denied it. Yet now you are saying it will be assigned back to an RN to make the ultimate decision. So possibly it could even go to the RN that originally called me?
Her: Yes. 

You can picture me squinting right now can't you? You know you can. I am hoping she was just wrong but you never know.

Jude had a weekend laced with oxygen issues, mucus plus, crying, and vomit. Many remarks were made in jest by our nurses about the denial and Jude's condition. Even though he had some rough patches he gave me lots of smiles this weekend which was wonderful. 

Insurance woes and Jude's night

My stress level is through the roof and I am not sure why. I shouldn't be this upset over the health insurance denial because Jude still has medicaid and his nursing services are still in place. However I feel like an episode of "Snapped" without the crazy killer lady just the crazy lady. My heart keeps racing, I am exhausted, and I feel very on the edge. I guess after all this time maybe the strong has been sucked out of me. My attorney was super sweet and explained that stressing and giving up is what the companies want you to do to you and that's why we keep going through this. I thought this was my second appeal through the primary insurance but it's actually my third and I have fought with Medicaid 6 times now. My attorney said 80% of the families in situations like ours give up and don't fight anymore. Many quit and stay home to care for the children and the children wind up not getting the real care they need. He says he sees it happen all the time.That's SAD! I said before that it's a sad state of affairs when America fails to take care of their sick and elderly. We did our due diligence and paid for primary health coverage only using Medicaid as a backup. My husband has excellent group health insurance but I did find one stand out piece of information this morning. In 2014 the plan had a lifetime cap on private duty nursing but in 2015 there was no limitation listed. Interesting isn't it? My guess is Jude was nearing that cap in 2014 and now they are thinking "Oh Sh*$!". I know it's interesting to some that Jude had this coverage to begin with but again this is not an individual plan. This is a well formed major group health that specifically outlined skilled nursing coverage. Jude had been receiving this coverage consistently and then is suddenly decline even though there was a major deterioration in his health. Makes no sense. 

I think one of the reasons I am on the edge is because I know that since the primary denied then Medicaid will eventually come back and fight us as well. They will see the primary is no longer picking up any nursing hours. However, the last fight with Medicaid involved our attorney, multiple doctors speaking on Jude's behalf, an advocate office, and one irritated Hospice agency. So they may not come after us again. Still the thought of it makes me cringe. Although I am grateful for the coverage Medicaid provides, dealing with a denial is an awful experience. 

I did speak directly with the health insurance company case manager yesterday. She called to explain the decision the doctor made and our rights. I blatantly asked her who the doctor thinks will be skilled enough to care for Jude. I had her admit that a Personal Care Attendant cannot tend respiratory distress, give controlled substances, or work with a GJ tube. Her reply was, "well won't you be there". I explained I work full time but even if I didn't I am not an educated or licensed nurse which means my level of medical care would be a disservice to Jude. Her next comment was "Well you have medicaid just let them pay for it". People wonder why the government is drained. I also verified she was an RN and asked her if she knew what a GJ tube is which she replied, "of course". So I asked her what she would like a care attendant to do if it should accidentally be ripped out. She replied "well put it back in". SIGH! I explained that the GJ tube is surgically placed into the intestine and she replied "Oh yea". Brilliant that they are making these decision about Jude huh?

Last night Jude had a horrible seizure storming incident. I believe it was a build up of pain from the lung disease. This is a video of him after it was over. You can see how he is struggling to breathe and is exhausted. 

Luckily we worked to get him calmed down with the proper medications and treatment. He finally began to rest easily. 

I will get over this. I am just irritated and needing to vent and I am doing so through my outlet. Sometimes I feel I rush to judgement or anger but I guess we are each our own individual and have our own way of dealing with things. I still have no doubt this will all be handled. I think it's just a culmination of Jude's health, working full time, the insurance, bills, and more that have built up. We all reach a point of breaking every now and then.  

Still angry.........

When I got home tonight I was just exhausted both emotionally and physically. I looked around Jude's surroundings and I wondered again how the insurance agency could say he didn't have medical necessity.

 

 

 

Luckily Jude was having a pretty good night so I felt okay getting him on video. Even during a good night he struggles through his chronic lung disease to breathe but this is MUCH better than a bad night.

 

It makes me angry these large health organizations hold people's lives in their hands and make decisions without seeing the patient in person. Jude has Medicaid he will be okay but I am angry for America! I am angry that people on hospice situations have to worry about insurance. It's not right. Emily is confused and is wondering how companies can make these decisions. Anyway, I am done venting on this subject. I am just frustrated today so bear with me.

Jude's oxygen alarm is going off so I have to run. Have a good night.

The insurance debacle and Jude's oxygen levels.

Today while I was at lunch I received a call from our nursing agency. They informed me that after the peer to peer review with Jude's hospice doctor and a review of additional nursing notes the health insurance company still decided to deny Jude's case for in home nursing care. When I heard those words I just felt defeated and sick to my stomach. I am not sure what caused those feelings but I am still very tired and I just want to go home today. Here is the situation...........this is our primary insurance that we pay into so therefore Jude's medicaid backup will still pick up his nursing hours. However, this is frustrating and I try to be a person of good values and this isn't right. I feel in my gut that this must happen frequently to other families and they probably don't have the strength to fight so they throw up their hands and let Medicaid pick up the charges. Either that or they put their families in a compromised situation because they feel they cannot fight the corporate health market. This makes me sad for those families. 

Jude was admitted to nursing on our primary plan years ago. In the past twelve months his condition has continued to deteriorate. So I have to ask why there was a sudden change in the level of care he needs according to the health insurance company if his condition has only worsened? I cannot get any answers. In fact I called again today when I heard the news and got a live nurse who was so upset about the denial she sent me to a supervisors voicemail. All she kept saying was, "Oh I am just so sorry". I understand we are lucky that our primary pays for in home nursing but outlined in their explanation of coverage's it is offered. Therefore Jude should be able to obtain the coverage his deserves and we pay for. Jude's case is so complicated now that I am not sure who the insurance company think would be qualified to care for him. I don't post that many pictures anymore or share video's because Jude just doesn't look well anymore. However, I did explain to the nurses that I will be filming him the next few days. That way I have on hand video of his complicated condition and needs. I just don't understand how much more medical necessity is required? If a child is on oxygen 24/7, requires frequent suctioning due to choking and aspiration, has a continuous feed on through a G/J, needs rescue from respiratory distress with controlled substances, needs seizure control and more...........just shaking my head. 

Along with this I also received a denial on Jude's CPT shaker vest, another authorization for his formula because something wasn't sent in right, and more. Being a special needs mom is hard but it just shouldn't be so complicated or stressful. I feel like companies make your life more stressful and it's just not right. However it is a part of the process and you learn to walk the path the best you can. 

Jude had a very difficult time keeping his oxygen up last night. Throughout the evening I turned his monitors off and then nurse Candice ended up turning them off too. When I checked in today he was still having difficulties but was finally asleep. Jude looks very week to me but he keeps giving me little smiles and that is super sweet. 

Insurance companies make me squint and Jude's update

Before I share this information I want my readers to understand that I know this situation will get resolved. In the end Jude will get the approval he needs but nonetheless this is frustrating. 

On Friday when I got home after a long day at work I opened a letter from my insurance company telling me they denied Jude's nursing........again. The reasoning was as follows, "The request for private duty nursing is denied as not meeting medical necessity guidelines. Specifically the clinical information provided for medical review does not document: 1. medical needs requiring skilled nursing care and (2) a level of care consistent with skilled nursing confinement. In addition, ongoing skilled home nursing is not considered medically necessary for patients who are on scheduled continuous tube feeds. 

At first I glanced at the paperwork and sighed because I thought our nursing agency had not turned in the proper documentation for review. This happens frequently within the insurance industry and denials can be quickly changed to approvals once the proper paperwork is submitted. However I began to look the document over carefully and I soon realized they did have Jude's current information. Jude didn't go home on a continuous feed until he left the hospital on hospice in February of 2015. Then I realized they included the doctor's name they were denying the orders to and it was Jude's HOSPICE doctor. Then I began to squint and utter a few curse words about the stupidity of the entire situation. I called the number on the letter and received a nice man who was obviously on the front lines and just answering the phones. After hearing my plight he turned me over to a live nurse. The nurse was so kind and listened to Jude's long list of medical needs including suctioning multiple times a day (on a bad day anywhere between 40-80 times), continuous oxygen, respiratory distress, and hospice care. I then told her I was pretty familiar with the skilled nursing guidebook due to my issues with TMHP and that continuous feeds are indeed a need for nursing. In fact it states "The individual requires treatment or complex skilled nursing care of an unstable medical condition, including but not limited to treatment of at least one of the following:ii.Gastrostomy feeding complicated by frequent regurgitation, with or without aspiration;"

The nurse apologized profusely and explained that she had no idea how the doctor came to the conclusion to deny Jude's case. She acknowledged they had lengthy information on home. She said the best thing would to be to complete a peer to peer review which I already knew. So basically Jude's hospice doctor will contact the insurance doctor and go over Jude's case in detail. Generally when making these decisions an insurer will request 15 days nursing notes from an agency. They then base their decision off the notes received. In the past 12 months I cannot think of 15 consecutive days that Jude had that were good. So therefore I am not sure what they are basing their decision on. Regardless I know it will get handled. What frustrates me is I know there are families out there that receive these denials and simply accept the denial and do not fight it. I honestly believe companies issue these denials because a certain percentage of patients will not fight the denial or pass away prior to the completion of the appeal. Regardless I told the nurse, "it's insulting and frustrating that my son is dying and your company is denying the best care for him at the end of his life. It's not okay and I expect better for him." She completely agreed. I truly believe that insurance companies and the state need to have field reps to make in home visits to admit or decline a child with complex medical needs to any plan. That may be unreasonable but it's my wish for all families facing a situation like ours. 

Jude had a bit of a rough time this weekend. His coughing is still pretty persistent, he has intermittent fevers, and he is still vomiting some. At many points through the weekend the monitors were shut off because Jude couldn't hold his stats.  However he is very smiley and being good for his nurses. 

Not a good evening and not a good night

Jude was having significant oxygen issues with me during my evening shift. I worked to re position him and give him the proper medications to get him more comfortable. I tried a breathing treatment but he still was having issues. Finally by the time the nurse got there Jude was a little more settled. However that didn't last! At 2:30am the night nurse knocked on our door. We were both in a deep deep sleep and we both jumped out of bed with a scare. Mike ran into the dog crate and probably broke his toe and I was a little bewildered. The nurse said Jude had been throwing up and she was concerned and was wondering if we had medication for nausea. I explained we had the Zofran and so she gave him a dose. We debated on what was causing him to vomit. Mike and the nurse believed it could be the antibiotic but I pointed out it's only once a day in the morning and it's not as strong of an antibiotic like he normally takes. I then pointed out that Jude vomits if he has pneumonia. 

After the scare I never really could fall back into a deep sleep and I went to check on a Jude a couple of times. I am very tired at work this morning and really just want to go home. I called hospice this morning and they are going to go check on Jude and let me know their thoughts. 

Jude's health

Jude has taken a decline in the last few days. His coughing is excessive and his oxygen levels are dipping pretty frequently. He is also pale and rather lethargic. Hospice decided to put him on a Z pack to see if it will help alleviate the persistent cough.  The coughing fits have gotten so bad that he cries out in pain and we want that to stop. His color wasn't good last night and he was so weak he couldn't make a smile although he tried. 

Today nurse Charlotte said he is sleeping and on 6 liters of oxygen his stats are running between 95-98. So that's a decent rate. 

We will see what tonight holds. 

Really?

Sometimes you hit a wall and sometimes it's a really big wall. My poor husband has rammed into that wall head first today. At 3:45am his mother got confused and his dad found her outside in a neighbors yard. She is currently in the hospital having multiple tests run. Mike said he feels like if it's not Jude then it's his father and if it's not his father it's now his mother. A part of me really wishes we had been able to find a home with a guest cottage so his parents could be close to us. On top of this Jude is having some really strong seizures. They are lasting about 40 seconds and Jude turns blue due to lack of oxygen. This is new. Jude always had cluster seizures before that would allow him to take in oxygen. I have put several calls into the neurologist but to date I don't have an answer. 

Oh and the dryer is still broken. At this point I just want to go buy a new one. The company says they will be back out on Monday with the proper part but we will see. If you come to my house just be prepared because there is laundry everywhere, lol. 

The good news is it's Friday. 

Trying not to judge others.

First a quick update on Jude. He is still pale and weak but gives us lots of smiles. He was crying out this morning with Charlotte so she said she held him and then gave him some Motrin which seemed to calm him down. I am also FINALLY getting my dryer situation resolved today so now I have about 15 million loads of laundry to catch up on. Being without a modern day convenience is not fun. 

I am sitting here wondering how to write what's on my mind today in a way that isn't accusatory or rude in anyway. However it is something on my mind and applies to more than one instance. Many times as special needs parents we as a group can feel excluded. Jude cannot travel, he cannot go outside on long walks or to restaurants, and our schedules are extremely tight with him. Therefore holidays, vacations, and other times people meet up are generally not something we can participate in unless people come to us. Sometimes we can participate for awhile but we always have to be back home by 5pm. We do not want people to feel they have to adjust their schedule around Jude because everyone needs to live their own life. However over the years many of my friends and family have found ways to make us feel included despite the situation at hand. Although sometimes we still feel left out and it's not really the participating individuals fault but really just a result of the surrounding circumstance. 

I also struggle with the fact that I feel that since Jude is not "normal" people may not value his life as much as others. He cannot run, jump, or play with you but given the chance he has so much to offer. This may have been Jude's last holiday but hopefully not. I guess because I am so close to Jude's situation I have a hard time stepping back and realizing it's probably difficult for some people to see Jude in the condition he is in. To me he is just Jude. He is simple, sweet, loving and in my opinion one of the closest representations of Gods blessing. When people are around Jude I always hear "there is just something about him and that smile". It's almost like Jude projects so much happiness and peace that you can physically feel it when your near him. 

Despite how I feel I have to realize that everyone is different. Some would have put Jude in a nursing home by now, some would have been a recluse and closed in with him, and others would walk the same path I have. I try not to judge others behavior or project what I would do in the situation upon others but I find that very hard. I am learning to let go and let people be who they are, to forgive what I feel is wrong, and to not be so judgmental. Add that to my resolutions. 

The New Year

Well it's New Year's Day. Jude is still not feeling well and a struggling with a pretty bad cough but we did get lots of smiles today! So I haven't set any resolutions for the past few years. Probably because j have been so immersed in Jude's condition and a bit of sorrow. This year I vowed to make some changes.

1. I plan to lose 40 pounds by 4/4! I did this once before for a resolution. It was after I had Emily and with simple calorie counting and exercise I shed the weight Quickly. I will always think that's the best way to get in shape!

2. I plan to take steps towards Mike and I adopting children out of foster care. We always wanted more children but have been so hesitant due to Jude. So we finally decided to look at moving forward with the steps needed. No rush but just the steps. Don't say anything negative about it our I will kick you.

3. I plan to date my husband more and finally take a vacation with just him.

4. I plan on paying some debt off and look again at selling our house and getting us the land we always dreamed of.

5. figure out my spiritual and career goals.

In other words I still plan on putting my children's needs ahead of my own but I recognize Mike and I need to pay attention to ourselves too. We are planning to go to New Orleans in April for some much needed time together.  I am going to figure out Jude's situation and nursing hours here so he doesn't have to leave our home. I am praying it all works out.

Happy New Year!

A tiny update

I still don't have much information. I haven't heard from the hospice doctor in regards to what her thoughts are on the bloodwork. Jude had a pretty good day with Charlotte yesterday but he had a host of oxygen issues with me. I finally just turned the monitor off and let Jude sleep without it beeping at us. His night nurse said he overall did pretty well but he did vomit again and ran a fever of 99.6. 

As of right now we do not have night nursing for Thursday or Friday night and it looks like it will stay that way. I am so frustrated! I feel like Jude is getting the short end of this because he really needs a nurse sitting by his bedside because he isn't feeling well. Mike and I will probably do a split shift like we did before and we will hope that Jude has two restful nights of sleep. We will set our alarms for his every four hour medication and breathing treatments. 

I do work for a bit tomorrow but then I will be off for the holiday. I hope everyone has a Happy New Year! 

An update from the lab

The facility that received the lab work called about an hour ago. They said Jude's white blood cell count is slightly elevated at 13.7. However his Neutrophils are high at 10,727. A normal range is 1500-8000. My understanding of Neutrophils are they are the most common white blood cell found in the body. They are basically the first warriors on the scene and have toxic chemicals in them to help kill off bacteria. I hope I explained that correctly because I learn as I go on these subjects. The assistant explained that you can have high levels of Neutrophils when you are fighting a bacterial infection, when you take certain drugs, or even when you smoke. Looking back at Jude's history in the Cook's portal I found a trend. Any time Jude had pneumonia his WBC was slightly elevated and his Neutrophils were through the roof. However she also said this could be caused if his body is just really stressed out. In other words if Jude's body is just so sick it's starting to shut down. 

When I got up this morning I was happy to see that Jude was alert. He didn't smile much and was very pale but he was resting comfortably and looking around. Around 11am Charlotte texted that they had a good day so far. We currently don't have a nurse scheduled for Wednesday, Thursday, and Friday nights this week. The nursing facility is working on getting someone but if they don't we have already decided to call in hospice. Jude is just to sick and weak to go without a nurse. Mike and I can take shifts but we feel it would be a disservice to Jude. 

It's been a bit of a frustrating week and I feel like a whine bag. It's been a host of issues from broken appliances to lack of nursing. Plus I am yet again back to thinking if we get Jude well this time he will just go through this all over again and I feel guilty for it. I will post more when I hear more from the hospice doctor. 

I found this quote today, "God will not look you over for medals, degrees, or diplomas, but for scars". -- Elbert Hubbard. Well then when the time comes he will welcome Jude without any hesitation for he is full of battle scars. 

A quick update

Jude is extremely ill. When your child is struggling to breathe you remember what's truly important. Which would be your child, your family, and your sanity.

You realize if a job is meant to be it will still be there for you when the situation has calmed down. You realize that there is so much minute stuff in the world that people focus and complain about that they shouldn't. Jude has never judged others, harbor resentment, or worry about things that really don't matter. I aspire to be more like him.

I know we have everyone's prayers so trust I appreciate them. Jude may get through this again like he has before but he is a pretty sick little boy. We all have him wrapped in love and are comforting him to the best of our ability. I should have some lab results on him tomorrow and will know more. I will post when I have those results.

A run down on Christmas and today's cluster

I worked on Christmas Eve until about 12:30 and then I went home and made a classic turkey dinner for my friends and family. My friend Gina came over with her children and we all played card games and waited on Santa to arrive. Mike's mom also made the trek to our house to spend some time with Jude. She is such a kind lady and really goes out of her way to see Jude on a regular basis. While we were playing cards Jude kept experiencing drops in his heart rate on a pretty consistent basis.  He was sleeping so I tried re-positioning him and it did help some. Jude has done this a few times before but never multiple times in a row. In addition it would drop to the 40's and just hover there for a bit before it finally went back to normal. The hovering part was also new and rather concerning. I decided to call hospice to see what they said about the situation. They said it could be either his sleep apnea causing a build up of carbon dioxide, an infection somewhere in his body, or a deterioration of his condition. Luckily this issued slowed throughout the night. I do believe it was his apnea but I believe it's being brought on by a possible lung infection again. 

Christmas started off WONDERFUL. We got up, shared our gifts, and went to an early show of Star Wars. However when we returned all hell broke loose with Jude. Jude had a horrible Christmas. That sounds harsh but it's true. He was tight, rigid, screaming in pain, crying, and just overall miserable. Nurse Allan was with him and Allan rarely gives Jude PRN medications. That day he had to give 28 rounds of medication and nothing worked. Jude would fall asleep for thirty minutes and wake back up screaming. Finally after everything failed we call hospice who really couldn't do much either. I had already asked for blood work and they said that was the right course of action. Unfortunately, there wasn't much more they could do for him that we were not doing. No one could get blood work until today and he was maxed out on medications. They plan on checking the blood to see if there is an infection. 

Saturday Jude started running a fever but he was so happy. Poor little boy had bright red cheeks and a fever of 100.8 yet he found a way to smile through it all. It was a complete 180 from Christmas but still a pretty good indication that something is going on. 

Saturday night we sat glued to our Tv's as we watched our neighbors to the East of us deal with horrific events. I have mentioned before that I have been in multiple tornado's. Once you have been in one or see the aftermath of one you never joke about them again. You never think you are being dramatic and you never fail to respect mother nature. I sat in tears as I watched this flash on my TV screen. 

Then today........sigh. Jude woke up with a barky seal cough and yellow secretions. In addition his feeding tube failed yet again and nurse Allan is not feeling well. The only day the doctor can replace Jude's tube is today. So I am trying to coordinate setting up transportation for Jude to get to the hospital. I considered going home and riding with Jude to the hospital but Allan says he will be fine. I then have to meet Emily to get her a key. It's just a cluster this morning. In addition we have some nights this week we need the agency to cover for Jude's nursing. I am hoping that goes through smoothly. I think the single hardest part of all of this has been working full time and not being able to be home to handle situations like this. 

Quit complaining

As I scrolled my Facebook feed this morning I noticed a disturbing trend. I noticed there was one complaint after another regarding the holidays, life, or what seemed like rather insignificant things. Last week I had an old friend stop by my office and he made me smile several times. He made a few comments about complaints and then he paused and said, "Look who I am complaining to.... it must be hard for you to hold my tongue sometimes." I guess it can be but for the most part I am just thankful that most people don't know the experience of having an extremely ill child. Sometimes I want to tell people that when they complain about being tired there is a mom out there that has been up with their terminally ill child for days. When they complain about the holidays there is a dad out there that doesn't get to experience putting toys together or playing Santa to his child because that child is so sick. That when they complain about going to the store or the mall that there are parents out there that don't really know how to shop for their ill child or they have lost a child they once shopped for. So maybe we should all including myself take a minute to remember to be grateful for all we DO have and DO get to accomplish this holiday season. 

Jude is acting ill again but I am not sure if it's the weather or if he is truly sick. I asked him if he apologized to nurse Candice last night because he gave her such a rough time. It wasn't an easy evening with him on my part or overnight with her. He was very rigid, crying, ran a bit of a fever, but then he would smile. It was like he would experience every emotion possibly in a five minute time frame and then it would just cycle again. I have noticed an increase in seizure activity with Jude and plan on placing a call to his neuro today. 

Is it day or night?

Jude is struggling with mixing his night and days up. I hear this is a common problem in nursing home along with "Sundowners". Jude exhibits a lot of behaviors of the elderly. Last night seemed to be a bit better because he was awake when I got home and stayed that way until the night nurse got there. He was very happy but every now and then would stiffen up and cry out. I got up several times last night to check on him and at one point he was sound asleep. I was so happy to see that he was actually sleeping at the appropriate time. However when I got back up later on and he was having a party in his bed. He was just looking around and was very wide awake. 

Jude's feeding tube is getting hard to push again so I am predicting a trip to the hospital again to get it changed. That's the one factor that keeps us continuing to visit the hospital. I have to admit that I am really looking for to the holiday break. I think we will be without a nurse on Christmas night but at least we don't work the following day and can sleep. 

Hope everyone is well. 

Lessons from Grandmother

Today I found a post on Facebook from a friend and it made me think of my grandmother. The following post was so wonderfully written by Maya Angelou. 


A WOMAN SHOULD HAVE ....

Enough money within her control to move out...
And rent a place of her own
even if she never wants to
or needs to...
Something perfect to wear if the employer
or date of her dreams wants to See Her in an hour...

A WOMAN SHOULD HAVE ...
A youth she's content to leave behind....
A past juicy enough that she's looking forward to
retelling it in her Old Age....

A WOMAN SHOULD HAVE .
A set of screwdrivers,
a cordless drill, and a black lace bra...
One friend who always makes her laugh...
And one Who lets her cry...

A WOMAN SHOULD HAVE ....
A good piece of furniture not previously owned
by anyone else in her Family...
Eight matching plates,
wine glasses with stems,
And a recipe for a meal that will make
her guests feel Honored...
A feeling of control over her destiny...

EVERY WOMAN SHOULD KNOW...
How to fall in love without losing herself..
HOW TO QUIT A JOB,
BREAK UP WITH A LOVER,
AND CONFRONT A FRIEND WITHOUT
RUINING THE FRIENDSHIP...
When to try harder...
And WHEN TO WALK AWAY...

EVERY WOMAN SHOULD KNOW...
That she can't change the length of her calves,
The width of her hips,
or the nature of her parents..
That her childhood may not have been perfect...
But it's over...

EVERY WOMAN SHOULD KNOW...
What she would and wouldn't do for love or more...
How to live alone...
Even if she doesn't like it...

EVERY WOMAN SHOULD KNOW...
Whom she can trust,
Whom she can't,
And why she shouldn't take it personally...

EVERY WOMAN SHOULD KNOW...
Where to go...
Be it to her best friend's kitchen table...
Or a charming inn in the woods...
When her soul needs soothing...

EVERY WOMAN SHOULD KNOW...
What she can and can't accomplish in a day...
A month...
And a year... ॐ

Written By: Maya Angelou/Pamela Redmond Satran

I knew my grandmother would like this and she has taught me a lot of the same things. She told me too that as a woman I should always have enough money to make it on my own and to be strong enough to be alone. She taught me to write thank you notes or at least pick up the phone and say thank you. It's a practice that I am proud has been instilled in my daughter. 

I tell my best friend all the time that I am buying her a set of pink tools because I was taught a woman should always have her own tool set. I have learned on my own that even though your childhood wasn't perfect it's over and therefore all you can do is make someone elses childhood better than yours. I do in fact have several friends I can trust and several I can cry to. I also have amazing recipes that my grandmother taught me that I fix for guests to make them feel special. In fact several of them now ask for my sweet potato casserole or the Napa Cabbage Salad frequently. I don't own any wine glasses with stems because it never fails that I WILL break them. My grandmother is old school with sass and I am very thankful for the lessons she has taught me throughout my life. I cannot imagine my life without my grandmother in it and I treasure our talks and time together. 

Merry Christmas and Jude's update.

Hospice recommended increasing Jude's Gabapentin which is a medication to relieve nerve pain. This has seemed to help some but I still wonder if he has something brewing in his lungs. He is more relaxed but still having issues with rigidity and crying episodes. However the crying episodes are not as frequent. Last night Jude wasn't feeling that great but he was comforted as long as I held him. So we spent some time watching TV together. Every now and then Jude would stiffen out and it's very difficult to hold him when he does that. His head gets buried into your forearm to the point it causes a lot of pain. Jude still looks very pale to me but he was able to spend some time off his oxygen last night so that's actually a very good thing. It's eerily quiet in my house when the oxygen machine is not running. 

It looks like we will be spending a quiet Christmas at home this year. Jude cannot travel to anyone's house and we have family going out of town. So I decided to make a full Christmas dinner on Christmas Eve for anyone who wants to attend. Then on Christmas day nurse Allen will watch Jude for a few hours while we treat Mike to Star Wars as a gift. Trust me I am very excited about that as well! 

Thank you for reading our story, all your prayers, and all your love. We wish you a very Merry Christmas from myself, Mike, Jude, and Emily. 

No nurse and a long night

Last night I just hit a wall. I have posted before that we have had some issues locating a weekend nurse. Well the regular night nurse had to call in last night because she is injured. Things happen in people's lives and they need to take care of themselves first. However I knew the agency was going to have difficulties locating a nurse the day of and that this probably meant a very long night for Mike and myself. As predicted the agency couldn't find anyone so Mike and I were on duty. I have said it before that Jude is my child and I will do whatever is necessary for him but working a 10 hour nurse shift and then leaving to work a 8 hours shift at another job is hard. Overall Jude really was an angel considering the care he needs. We were trying to get him to sleep and around 10:45 he got so upset. His heart rate shot up and he became very rigid so we gave him some Morphine. This calmed him down and I dug out one of his new Christmas gifts. Let's just say that I highly recommend the Baby Gund Musical Whale. It has lights, music, and calming whale sounds which we know Jude loves. He even tracked the lights as they moved across the Whale. That's a huge accomplishment for a neuro kid. 

Jude finally fell alseep and we set our alarms to be back up at 1am for medication and a breathing treatment. Between 2 - 4am he had consistent oxygen issues to the point I just turned the machine off. Then at 5am he needed another round of scheduled medication and his breathing treatment. At 5 I also changed his diaper and blanket because he was sweating. He never opened his eyes but made a few little sounds. Once Charlotte got there this morning I greeted her happily and explained about the night. Then Jude woke up and began coughing terribly and she took over his care. I went to sleep for an hour and then went into work. 

I get frustrated at times. Everyone says, "I don't understand how you do this without complaining". Oh I complain just ask my close friends and family. The point is you do what needs to be done to properly care for your child. Last night I even said "I am tired of having a child on hospice but not tired of the child........does that make sense?". I feel like a terrible mother for saying that but my friend understood completely. I told her that some people would reply that it's just a part of Jude but it's not. Jude is not defined by his illness or the label of Hospice. Jude is still a 7 year old little boy who would be running, jumping, and playing if the stroke had not taken that away from him and it's okay to grieve that child. So having nurses in your house, juggling work and home, not having date nights, not having vacation, not being able to leave for Holidays or run to the gas station does take it's toll sometimes. I was in one of those moods last night that no one could say the right thing. Do you ever have those days? The phrases "Sorry", "God doesn't give you more than you can handle", and "everything happens for a reason" made me want to stab a fork in my eye! I reminded myself that people just want to help and sometimes all they can offer are kind words and to accept that gratefully. 

So as I left for work this morning I stroked Jude's hair and gave him lots of kisses.I thought of how much he has blessed my life even though that life is sometimes tiring.  He was so exhausted from coughing so much that he could only give me a small smile and it didn't last long. I told him I would be home soon to hold him and hopefully he would feel like smiling then. 

Not an easy evening

Jude's got something going on and we are all guessing as to what it is. If he is awake he is screaming and crying so the only thing we can really do to ease his pain is sedate him. He is doing a bit better this morning but last night was difficult. He just looked and felt miserable. 

Hospice is coming out today and we are going to try to get to the root of the issue. Hopefully he will be feeling better soon. I hate to see him so uncomfortable. 

A rough evening, stockings, and lessons.

Jude had a VERY rough evening yesterday. He just cried and screamed for hours and I felt so bad for him. I gave him every medication I could and held him for as long as I could. Holding him seemed to comfort him some. By the time the nurse got there I was a bit frazzled. She immediately took over holding him which means a lot to me. Some nurses are uncomfortable picking up their patients but our nurses never hesitate. 

We have been considering going to 24 hour nursing for some time because it's probably in Jude's best interest. However I am very hesitant on giving up what I feel is the last of my mom time with him. I have 5 hours each day that I get to care for him and comfort him. Giving that up is heart wrenching to me but I understand it might be in his best interest. 

I shopped for stocking stuffers yesterday for my family and as usual it was difficult because of Jude's situation. There isn't much I can buy for him but I know he isn't going to complain. I got him a few little things and lots of love. Today Mike and I went to lunch and we were discussion the situation at hand in our world. How everyone is arguing over religion, refugees, and gun laws. Mike said, "This is why I say Jude is so much more evolved. He doesn't care what color you are, what race you are, what religion, or your sexual preference. The only thing Jude knows is comfort and love. It's why should all aspire to be like Jude." 

True.  

Texas Teen and Jude's visit

It's taken me a few days to finally get around to writing this blog. I think I had to get all of my feelings in check regarding the entire weekend and the big trip to Houston. The trip started out eventful because Jude was still not feeling well. I soon realized that transporting him to the hospice house by ourselves was going to be challenging. I also thought it might lead to increased health issues for Jude which I didn't want. So I called Hospice and they set up transportation for him via Med Star to the facility and then back home. Here is a little picture of us coming home. (You can click the photo's to make them larger)

Jude looks a lot weaker to me lately and he is very pale. I have also noticed that his secretions are very thick. He has been rigid and toned out and just having some issues. I am not sure what's going on but I still get a few smiles from him. 

The drive to Houston was a BEAST and sent me into a huge panic attack. I do not like highways Sam I am. I do not like them with rain, I do not like them with wrecks, I do not like the highways any way you have them. It poured on us the entire way there and my poor husband was about to throw me out of the car. Luckily we arrived at the Hilton Post Oak in one piece and we proceeded to greet our friends. It was a rare date night for Mike and myself and we had such big plans which turned into .........going to sleep...lol! We were exhausted and it's rare we don't have nurses or oxygen machines going so we both slept very soundly. The next night we held a cocktail party in our room for everyone that had supported and sponsored Emily for the year as Miss Dallas teen. There were several toasts that were given in her honor and I was in tears feeling blessed. Soon we were off to the prelims to watch the girls compete! Since Emily's city was at the beginning of the event she was one of the first to introduce herself. All week she had mentioned how excited she was that she would get to say Emily Lites - DALLAS! 

 The girls then competed in swimwear and evening gown and Emily truly looked like a princess in her evening gown. The girls are required to do all their own hair and makeup and we were very proud of the job Emily did. TO our great surprise Emily won the photogenic award that night out of 84 girls. 

We were so excited for her and she was thrilled. Emily did phenomenal! She came out of interview saying she gave the best interview she has given. Miss Texas was sitting with us when Emily told us about her interview and she commented that she judged Emily at Dallas and her interview was wonderful. So we went into the next day pretty confident that Emily would finally be called for the top 15. It had been four years of hard work and preparation. So when they began calling the top 15 we listened with great excitement, but then..........then they got to 10 and she hadn't been called. Then 15 and still no Emily. So they announced they had a tie and there were two more spots to fill and our hearts raced just knowing she would be called, but she wasn't. We were broken hearted for her. All that work. 

Emily stood in the back with a big smile and clapped happily for the winner. She always has such grace and poise. At first I was angry because I didn't understand but I reminded myself of several factors. First and foremost although it's a lot of work it's just a pageant and not placing is very much a first world issue. Second, it was a great weekend spent with friends and pageant friends that have turned into family. Third, although she hasn't placed Emily HASN'T given up and that is extremely admirable. Fourth, Texas is the most competitive state with the most contestants.  Finally, my husband pointed out that what is most important is that Emily had fun and she did. So I decided to focus on this excited face when she won photogenic and know it was a good weekend.  

and I think the award was well deserved :)

Emily will always be a winner in my book and someday she will get in that top 15! 

We are all now back home and trying to catch up on sleep and unpacking. Hopefully Jude will stay well and it will be a healthy happy Christmas.