Friday, January 30, 2015

A realization and Jude's life at hand.

Jude is still having a hard time with his tone and spastic muscles. However the good thing is that we are getting a few smiles out of him. We are still walking the same path with his oxygen, his medication, and hoping for a night RN. We still have to suction his thick secretions about 30-50 times a day. So no new big changes but at least we get some sweet smiles.

Today I was scanning through some other blogs of moms with special needs. I laughed at some of the situations I could relate to like actually taking the time to brush my own hair. We get so caught up in being such care givers that we fail to take care of ourselves. So it's a huge feat to actually use a straightening iron and make the effort to look pretty.  I smiled at another blog from a mother that stated her therapist told her taking care of her autistic child was like having 10 normal children to care for. I wondered in the back of my mind how many Jude would equate to. Then as I continued to scan I began to notice for the first time that there are not many blogs I follow with children as critical as Jude. There are a few with one in particular of a mother I talk to pretty frequently and I completely appreciate her advice and Internet friendship. I am sure there are lots of blogs out there I haven't found but for a split second I felt a little alone. Jude won't go back to school on hospice so there are no ARD meetings or goals we have set regarding education or progressive therapy. There really is no debate for us on vaccinations because of the severity of Jude's condition. There is no debate on what type of communication device to get him or adaptive equipment to help get him to walk.  I realized we truly are just keeping Jude comfortable. Then I wondered how much of all these efforts are for us and not for Jude. Do we as parents love our children's company so much that we push them to extreme lengths to keep them just healthy enough to stay with us?

I don't really remember the sound of my house anymore without the steady rise and fall pumping of the oxygen machine. Jude's bed has become one of my living room fixtures. Sometimes while sitting on the couch watching TV I will see Jude's little arm raise up from his bed so I will say "arms up Jude.... arms up". I used to say this to him prior to his surgery and he would give me a huge grin. Sometimes he would raise his arm, but most of the time he just smiled. Jude's life has changed so much since the surgery in July. A surgery we did because we made a decision to try to make him.......healthier and to live a more pain free life. So again I wondered how much we push for normalcy when maybe we should just accept life the way it is. Jude's had a hard time this week, but again he is happy when he wakes up. I still snuggle up to Jude and bury my nose into his hair and smell his sweet smell. I kiss him on his cheeks and forehead LOTS. He loves being kissed and hugged on. Mike thinks Jude's illness is temporary  and that Jude will only continue to get better. I generally just smile when Mike says this because my mommy instinct tells me that the last battle Jude had was a really hard one and it caused a lot of damage. If Jude improves and gets back to the little boy we had before then that's awesome but if not I accept what life has given and will take it a day at a time.  That rather than push for normalcy I will make the best decisions possible for my child based on the situation at hand that particular day. I guess that's really all we can do as parents.  

Wednesday, January 28, 2015

Jude's horrible night

Jude did not have a good day yesterday. Charlotte texted me about 1pm yesterday letting me know she had given Jude ativan. He was very spastic, high heartrate, and making loud snorting noises. When I got home he was in the exact same condition and stayed that way throughout most of the night. He continued this tone even after additional ativan, Motrin, Morphine, and Diazepam (valium). I have never seen Jude not break his spasticity without a medication and especially a combination of medications.

We finally got Jude to sleep with another dose of Ativan, but it only lasted a couple of hours. He would wake up screaming so I have no doubt Jude was in pain. I was able to give Motrin again around 4am and that helped him rest again until his feeding pump went off. I put a call into his neurologist to seek an opinion on if he believes this is pain, neurological, or possibly an oncoming illness. I am sure I will just be told to "wait and see".

The interview we had scheduled with a nurse last night at 6 was cancelled at 6:40. I am just amazed at the lack of work ethic out there now. I am convinced we have two of the best nurses in the home health industry currently working for Jude and I wish I could clone them. I am going to check with a few other agencies today and see if they have anyone that would work. I have been told we can still carry or day nurses with one agency and a night nurse through another.

I am frustrated today and not in the mood to talk to anyone about this situation. I am not being rude I am just very tired and tired of being tired if that makes sense. So talk to me about something else if I see you today.


Monday, January 26, 2015

Jude's weekend and the explanation for the CBD quest

Jude had a fairly decent weekend. I even had him on room air a few times while I held him. However last night when I hooked him back up to his monitor his oxygen level was 84 so the room air didn't last long. He was very happy that he was being held and loved on without all the equipment hooked up to him. Last night was fairly rough because Jude would cry out or need suctioned multiple times. Mike and I were both fairly frustrated that we still had not heard from the nursing agency regarding the interview we were suppose to have with a possible night nurse. So we are dragging a bit today. Emily also started driving herself to school today and I think I worry constantly. She is very cute and texts every time she gets to a location to let me know she is okay.

If you are my friend on Facebook then you have seen my constant postings regarding legalizing CBD oil in TX. I know this is a controversial subject, but I truly believe it's controversial because when people hear "medical marijuana" they get the wrong idea. People fail to actually read the articles or watch the documentaries so the image of a child smoking marijuana or eating marijuana laced brownies appears in people's minds. Today we made great strides towards this goal because the American Academy of Pediatrics recommended "Marijuana use should be decriminalized and federal officials should reclassify cannabis as a less dangerous drug to spur vital medical research". They went on to state "Media accounts of medical-marijuana refugees in Colorado have given doctors "reason to suspect" that cannabinoids — the chemical compounds secreted by cannabis flowers — might have anticonvulsant properties". So I wanted to share some information with you including the top 5 questions I get asked.

1. Do you want CBD oil for Jude? Yes. I would like the ability to try CBD oil. I don't believe it will stop Jude's seizure activity but I do believe it could help relieve his pain and decrease his tone. The use of something natural verses organ damaging man made products would be amazing.

2. Why wouldn't it stop his seizures? It may, but Jude has such a severe form of Epilepsy that his neurologist is doubtful. However through our journey we have met many families who have children affected by Dravet Syndrome. This particular seizure disorder is showing amazing response to CBD oil! So if anything we hope to get the oil in TX for them.

3. Why don't you move to Colorado? The average person cannot just pick up and move and shouldn't have to. Our state representatives should be able to do research and educate themselves enough to make this decision without parents having to move.

4. Why don't you just sneak it to Jude? Because it's illegal. Also, Jude gets routine blood tests and if he tests positive the state of TX can and would remove him from us. Jude would not survive without the care and treatment we give him. Also, TX is known to even come after parents if they go to Colorado and don't fully change their residency.

5. Why is this so important to you? Besides Jude I think it's the importance of education and progression. If a natural remedy has been found to help save someone's life then I believe it should be accessed without restriction from our government. CBD oil is showing progression with Alzheimer's, Parkinson's, Migraines, Seizures, Tumors, and more. My grandfather had Parkinson's and it's a nasty disease! I know my grandmother would have liked having something like an oil to put in his food to help relieve his horrible symptoms.

I think the best way to understand CBD oil is by watching this short documentary. Listen to her doctor explain the benefits. Watch them explain how they make it and listen to her parents say how much it helped her.

Watch this news piece and see what these families deal with. See their plea

The faces of CBD

Canabadial is a "good" ingredient in the plant. It's showing amazing promise for so many of our ailments. It's time we get rid of the old school stigma's and move forward with progression!

Thursday, January 22, 2015

A video of Jude's high tone last night

Well as I mentioned Jude had a decent day yesterday but about 5:40 that changed. He was becoming very toned out and it looked painful so Charlotte gave him some Motrin and when that didn't work she gave him Ativan. When I got home she mentioned that he might need Morphine because the tone was still there. We weren't sure if the tone was being caused from the change in TX weather or if it was a reaction to not feeling well. So I did end up having to give him the Morphine and Jude still was not doing well.

I sent this video to Hospice so they could understand what we are dealing with when we cannot get his tone under control. His heart rate was at 176 and his O2 kept falling. They decided to increase the dose of ativan and soon Jude was more under control. He was calm for several hours and then we all went to sleep. Jude had his evening meds and he slept pretty well until 2:30am. Then Jude had an issue with apnea and we could not keep his oxygen level up. We would reposition him to get his oxygen to 100 and then within 5 minutes his alarms were going off again because his levels were in the 80's. Again was this just the apnea, was it a breathing issue, was it pain, or what. So we worked and worked on getting him in the right position and at the right level of oxygen.  I really didn't want to give him anymore medication since we were already dealing with respiratory issues. Finally about 4 I turned him to his right, turned up his oxygen to 9, and he went to sleep without issues.

I am tired and cranky. This week has taken a toll so if you are easily offended if someone snaps at you I suggest not calling or texting, lol! I am kidding, I will do my best to be nice.

Wednesday, January 21, 2015

Jude's Tuesday night update.

Jude had another rough night last night. At one point even on 9 liters of Oxygen he couldn't keep O2 stats above 88. We went through all his medications again to get him stablized and resting. I began reading up on the Sundowners syndrome our other nurse mentioned  Granted this is more for elderly patients that suffer Dementia but Jude does have similiar symptoms. Today Charlotte said he did much better and even went from 8:30-1:00 on room air. That's the first time he has done that! However, she did have to put him back on 2 liters.  

We will see how tonight goes.

Tuesday, January 20, 2015

Jude's night and the hospice gift.

It was very slow at work yesterday due to the holiday so I left about 3pm to try to catch Hospice at the house. Unfortunately, I was to late and they had just left. The hospice nurse said if Jude spikes a fever again he will need an X ray and that his lungs sound about the same. Which means his lungs sound raunchy (sp?). Jude was very happy yesterday when I got home but he did look pale to me. Granted he isn't getting much vitamin D but he still looked pale. Charlotte said as the day came to a close that Jude's lung sounds had deteriorated from how they sounded that morning. Right before Charlotte was going home for the day Jude began to get stressed and toned out. So about 6pm I gave him some Ativan and he began to calm down some.

Jude slept fairly well last night. He woke about twice in the 3am hour crying. I am not sure if he was hurting or just wanted to be rolled over. I repositioned him and he went back to sleep both times. Then around 7 this morning he was gasping but his o2 level was at 100 so I didn't worry to much.

We received a phone call yesterday that the night nursing has been approved from 10-7 temporarily. I know this should be a good thing but I almost felt let down when I heard this information. It's yet another person in my house and they will be taking over MY job with Jude. SO I am struggling with knowing this is probably best for Jude but emotionally not the best for me. Physically I am sure it will be great to get sleep but I also know I will still hear every beep and every alarm. I talked with the nursing agency last night regarding what we are looking for in a night nurse. So they are currently searching for someone and we will know soon who that person will be. We also still have some respite hours and that normally consists of Mike's mom coming to sing to Jude and tell him stories.

Emily and I are both not feeling very well and "ain't nobody got time for that". So I am hoping it goes away very quickly. I will check on Jude in a few hours and see how his lungs sound today and how he is acting. It's such a balancing act with Jude and knowing when to run to the doctor and when to just stay put. It's knowing there isn't much that can be done for his lungs because they are so tired and sick. So what do we subject him to and when do we just keep him comfortable. I am not a fan of making these decisions. However you know Jude. He can go from being very sick to wonderful within hours and also vice versa. If for some reason Jude is developing pneumonia again (and I am going to stay positive he isn't) it will be his tenth battle.......tenth. What a little superman.

Hospice left a really sweet gift yesterday. They made a replica of Jude's hand and also left his footprints.

Monday, January 19, 2015

A fever and a smile

Jude had a difficult evening in regards to his oxygen level. He wasn't cranky or crying in fact he was smiling, but his oxygen wouldn't stay up. I thought this was my first tale tale sign that something was going on. Looking back even further my first sign was probably Saturday nights fiasco. So this morning I heard Jude cough terribly and I needed to check his feed so I got up. I noticed his heart rate was 176 but his O2 was good. So I turned off his feed, flushed his button, and said good morning to my smiley boy. Then I touched his arm and said "Oh MY!". Jude was burning up! He only had one small blanket on so I knew it wasn't from heating up in the bed. Still I pulled the blanket off and gave him a second to cool. Then I took his temp and it was 102 axillary so 103. I gave Jude some Motrin and then he began to retch and couch. He threw up a large amount of phlegm.

Charlotte is watching him. She said his temp is back within a normal range after the Motrin, his heart rate is a bit high at 154, and his respiratory rate is 32 (again a little high). She said his lungs sound great, but they sounded clear when he had that horrible coding episode. The pneumonia only showed on the X ray and even then it was questionable to some until the pulmonologist saw it.

So my dilemma is if we just watch him or take him in. If I take him in and get an X ray I feel it's peace of mind. If it comes out clear then we know we are dealing with something viral or maybe a reaction to medication. If it shows issues again then we can get a prescription for an IV at home that hospice can handle. I just hate to run Jude up there for no reason and put him through that trauma. He is smiling and happy. He is pale, but very responsive.

It's always a wonder with him. I wish they could bring an X ray machine to our house.

Sunday, January 18, 2015

Jude's weekend update.

Jude had a terrible evening yesterday. He had to have Ativan, Motrin, Tylenol, AND Morphine before we could get him under control. We had Mike's moms' 80th birthday here and everyone kept asking if the noise level bothered Jude, but honestly I knew that wasn't it. Jude was just high toned and having a storming episode like he does frequently. We finally got him asleep and he slept until about 3am. He was up and down past that point which included ANOTHER feeding tube blockage. It took me about thirty minutes to get the tube unblocked. I tried everything I could to get the tube unblocked and when I was about to stop trying I said, "Jude give me a little luck". I used a small syringe full of water to push through the tube with as much pressure as I could and the blockage finally cleared. Jude just smiled and fell back to sleep.

Tonight Jude has been great. I didn't even hesitate giving him Ativan at 7pm when he started looking a bit toned out. Despite my education that the medication can help him I have still held back from giving it to him. So I didn't hesitate tonight when Jude showed any sign that he needed it. Jude seems more calm and his oxygen seems to be doing very well.

Mike and I have moved forward to finishing up some renovations to our house. I know a house is just a material possession but I feel safe here and it's nice to finally start working on making things look nice. We need to finish painting the walls from expanding the doorways for Jude's wheelchair. We need to remove the carpet because it's torn up from his bed, stander, wheelchair, and the dogs. Mike is making a headboard for our bed out of an antique door that hung on a friends house and my cousin gave us loads of Elfa shelving that will go upstairs. It's a project that makes me happy and takes my attention. So it's relaxing.

Friday, January 16, 2015

Friday's update

Last night wasn't any better than yesterdays post. However I got a little sleep because Mike stayed up with Jude until about 1am. Jude still is toned out, fights sleep, cries in pain, and more. So I talked to his nurse this morning who reminded me we can give the Ativan and Morphine every six hours. I explained neither medication seems to be working but she pointed out a second dose might make the different. That's possible! I also put a text into Hospice who said they were going to talk to the doctor on call about possible solutions. I know it cannot be healthy for Jude to be awake 20 hours a day. His little body cannot reset properly. We have to have proper sleep to heal our bodies.

We are still suctioning Jude 3-10 times an hour. His pneumonia and lungs seem to have improved some, but his tone is back to the way it was after the surgery. At least it seems that way to me. I did get to hold him again for awhile last night and he was so happy about that.

Thursday, January 15, 2015

Nix last nights post on Facebook

Yesterday I posted on Facebook that Jude was having a much better day! In fact his nurse said it was one of the first days that she felt like she was seeing "Jude". He was smiling, communicating in his way, tracking things with his eyes, and when I got home he was still doing well. Then the BOTTOM fell out. I mean really? UGH! Jude was literally up the majority of the night. I tried Ativan but received no results and then finally about 12-1am I tried Morphine. It took about an hour for the Morphine to kick in and he finally relaxed and fell asleep.

My guess is Jude would sleep about 30-45 minutes and would then wake up crying. One of us would have to get up to reposition him. Sometimes we had to adjust oxygen or pat him for a bit to calm him back down. He would also wake up coughing terribly and we would need to suction him.

It was frustrating. I would like to go home and take a nap, but I am not sure I want to give up any hours at work.

Monday, January 12, 2015

Jude's weekend and my dear husband.

Jude had more good hours than bad hours this weekend and for that I am very grateful. He smiled, coo'd, and acted more like himself. The good times would be overshadowed when his oxygen would drop or his lungs would fill with fluid but overall it was a good weekend. Occasionally I needed some friends to talk to about his situation but I found a few glimmers of hope.

Tonight I unhooked Jude from everything. I turned off the oxygen meter, I unhooked the mask, I turned off his feed, and I pushed aside the new medication port. I gathered Jude up and told him we were going to have a little time to ourselves. We sunk into our spot that we have claimed on my couch and his head rested in my arms. He gave me a huge grin and I kept him there kissing his forehead for a while. Soon he would begin to gurgle so Emily brought me his suction machine. I was able to keep Jude on my lap until Mike got out of the shower. Then Mike helped me move Jude back to his bed and I hooked all of his lines back up again. His O2 was a little low but nothing to fact Jude seemed very peaceful and happy. I think he has missed me holding him on a regular basis and he was enjoying being held as much as I enjoyed holding him.

My blog mostly centers around Jude but sometimes I talk about others. Rarely do I talk about my husband so I thought I would spend a little time explaining how great he is. I know I have mentioned this before but my husband had a prior marriage. Unfortunately, the marriage didn't work out and he and his ex wife lost five babies via miscarriage. Skip to our marriage when I learned I was pregnant and Mike was so excited at the prospect of having a child. Our baby seemed to be healthy and thriving but then we learned Jude had suffered a massive stroke. I know the blow this gave me but I cannot even imagine the blow it inflicted on my husband. It hasn't been an easy road, but Mike said from the beginning that our relationship would not be another negative statistic due to a tragedy. When Jude was two years old Mike went through a severe depression and it was really hard on our family, but he pulled through.

Mike is my rock so he tends to keep me grounded when life throws continuous balls that I cannot dodge. When we met eight years ago I was amazingly fit! I worked out 4-5 days a week, my hair was perfectly styled, my nails were done, and I was confident. I have learned these superficial looks really don't matter in the grand scheme of life, but on the other hand I feel pretty gross. Sleep deprivation can affect every part of your appearance and I literally have zero time to work out between work and home. I am not making excuses and if any work out buffs think I am they can bite my tail. Despite my sweat pants, pony tail, and nail appearance my husband loves me unconditionally. Mike walks up behind me on a regular basis and hugs me saying "You are beautiful".  I shake my head and repeat, "I don't know why you think that". He can be a huge pain in the tail when he wants pancakes or some other form of food, but overall he is an amazing guy. He never hesitates to take care of his son. Mike would do anything for Emily and he loves me with all his heart. He holds my hand, cuddles next to me on the couch, opens my doors, and keeps me on my toes.  When I get tired, down, and I have reached my max I tend to snap angrily and Mike will simply reply, "Hey I don't need you snapping at me ... you need to watch yourself". He is 100% right and it makes me take a deep breath, think things through, and apologize.

Mike has taught me one of the best lessons ever. "Don't expect people to treat you the way you treat them because you will just wind up disappointed. Treat them well because you want to treat them that way and leave it at that". He also reminds me constantly that those that truly care about me will not need "validation or explanation" they will understand no matter what.......and he is right. He has taught me to reach out for what's important and leave the rest behind. "Everything will find it's way" he says........he is a smart man. He never holds back and he loves his family with all his heart and I love him for being here for us because without him I don't think I would have made it this far.

Thursday, January 8, 2015

Thursday's update with a big sigh

One of these days I am going to quit saying it's been one of those days. Until that time let me tell you about this fine Thursday in January. It started with Jude having significant issues keeping his oxygen up overnight. He wasn't toned out. In fact after the Ativan he was rather relaxed but his oxygen level kept setting off the alarms. His oxygen even dipped to 69 last night. HOLY COW! After putting him on 9 liters of Oxygen we were able to get a little rest.

Today I unintentionally hurt a friend due to business related issues. It's weighing on me but unfortunately it was really out of my control. I hate people being upset especially those I care for. Next I got a call from Charlotte that Jude's J button was clogged and she could not get it unstuck. That could mean an ER visit which might not be a bad thing since Jude needs to be seen anyway. Then I got a call from Emily's school that she wasn't feeling well. So I told my work I was taking lunch to grab Emily and go by my house to see if I could unclog the button.

I left and got Emily first who looked peaked, tired, and very sad. I think she has something viral laced with a very broken heart. She doesn't understand the treatment she is receiving. I told her that Mike has always told me not to expect people to treat you the way you treat them. So do your very best to be kind to others and live in the fact you did the best you could. Next we rushed to the house and I grabbed my favorite unblocking syringe and with some work I was able to unclog the line...whew. Then I hopped back in my car and raced back to work. It was a matter of making everything flow and work together without missing hours. I was happy it all worked out.

While I was home I noticed Jude just doesn't look well. I know he is sick but he just didn't look well to me at all. His coloring is not good, his little feet are ice cold, and he is just so tired. He would give me some great smiles though and that made me happy. I am glad the button unclogged because I was rather worried about trying to transport him to the ER in his condition. The last time I did that was when Jude coded so I wasn't sure what I was going to do. I believe Hospice can help transport him if needed but I am not sure. I wasn't going to call 911 over a button issue so I would have figured it out. I am sure Emily or Charlotte could have ridden with Jude the whole way but it would have been pretty stressful for us.

Charlotte mentioned that the hospice PA suggested putting a crisis nurse in the house to regulate getting Jude on Ativan and Morphine. She would get him to a point that it would not affect his respiratory and it would help him sleep. So I am going to talk to them about getting this done.

Wednesday, January 7, 2015

Same song different verse

Jude didn't have the best night again. We gave him ativan during one of this storming sessions but he was so toned out the medication was pushed out his feeding site. When we finally got him calmed down.........which took about 3 hours we gave him some Morphine. This settled him down enough to let him go to sleep but he would cry out pretty often. He would also lose oxygen and had to be put up to 9 liters last night. At one point I just started crying because I was so tired so Mike got up and went and took care of Jude.

On top of everything at 2am I hear Emily bawling her eyes out and throwing up. Turns out she just had her first real heartbreak topped with a lesson of broken trust. ARGH I feel so bad for her and there is nothing I can do to make it better. It will just take time.

This morning Charlotte told me she had good news and bad news. The good news was Jude's lungs "sound" clear, but the bad news is he has a low grade fever. That is never bueno when Jude is concerned. So she is giving him a bath and then rechecking the temp. If he still has one she will give him Motrin. Jude is still on the antibiotic so now it's really a guessing game. However this is an explanation for the past few difficult days. He is just not feeling well at all and it's a matter of finding out what the underlying culprit is.

Here is a picture last night of Jude giving me a little grin. He is pretty pale but he was calm at this moment.

Tuesday, January 6, 2015

Not a good night

Well Jude had a craptacular night.

I reached out to Charlotte yesterday who informed me that Jude had a good morning. However that afternoon was a different story. She explained he was very rigid, toned out, had a high heart rate, and eventually had to go to the mask for O2. She ended up giving him Ativan at about 5:15pm. When I got home he was sound asleep. He ended up waking up by 6:30 and went back into the same mode. Throughout the night he was high toned with a high heart rate. We gave him his scheduled Valium and Clauzepam but nothing was working. Around 10pm I reached out to Hospice to see if the Morphine could be given even though we had given the Ativan at 5:15. They said it could be and that it sounded like he needed it. Jude's O2 level was fine but his breathing was very loud, rattling, and he sounded like pop rocks. My guess is that Jude was once again panicking because he felt he couldn't breathe. Maybe that's what he has been doing throughout this toned out sessions since the July surgery? Struggling to breathe. So I gave him the Morphine and it did...............NOTHING! Sigh. Jude finally went to sleep about 1am only to be back up about 1:52am crying, moaning, and breathing rapidly. This continued through the early morning hours. He would fall asleep for 45 minutes to an hour only to be back up again. We would suction him, clear him, re-position him, and do whatever was necessary to get him back to sleep comfortably.

Hospice called this morning to check on him and they are going by to see him today. They again mentioned he needs night nursing, but it still has not been approved. I talked to them about a crisis nurse, but the problem is if Jude has 3-4 good hours they will pull her off the case. Jude can have several hours of "good time" and then 20 hours of bad time. You just never know. He may have one good night and three bad nights or vice versa. It's a toss up.

I told Mike last night that I felt bad giving Jude any Morphine because it would just be giving him more medication. He said that he has gotten to the point of accepting that it's about keeping Jude comfortable now and he is right. Jude is just not his little self anymore. We do get good hours with him and we are thankful for that but his distress seems to be outweighing those hours lately. I feel for Jude. I kiss on him a lot at night and try to make him comfortable in his little bed and let him know we are here for him.

I know everyone is praying and I appreciate that. You don't have to tell me that you are praying......I know you are :). I also am going to ask that if you come visit Jude to please not put me in a position of consoling you about his condition. I am strong but not really that strong. Just know he is a happy little boy that is very loved and he is fighting the best he can through this. Charlotte said yesterday he will beat this and I love her positive attitude.

Monday, January 5, 2015

A quick update.

Jude slept from 12-6 on Saturday and then almost slept through the night last night. Around 4am his oxygen alarms were going off but it was just a line error. Jude was NOT happy the alarm woke him up. So I got him settled only for it to go off again about an hour later. Then his feeding alarm went off, but he slept through that one. Jude is very happy but pale and needing a lot of suctioning. He is still on oxygen and that looks to be a permanent fixture now.

After being off for so many days I am anxious to get home to see my little man.

Saturday, January 3, 2015

Morphine to the rescue!!!!

After I wrote my blog last night Jude was actually doing fairly well. I noticed his oxygen would dip and his heart rate seemed abnormally low at times but overall he seemed very happy! As I had mentioned he looked very tired but he was smiling and comfortable. I kept having to suction him so I set up camp on our couch last night so I could be close to Jude. About midnight Jude started having significant problems. He seemed uncomfortable, his breathing was heavier, and he was having issues keeping his oxygen up. I literally tried everything! I gave him a breathing treatment, CPT, I repositioned him, I suctioned every last mucus plug I could get, and I even gave him Benadryl. Finally about 12:50 it was crisis time! Jude's oxygen was dangerously low, his heart rate was very high, and he was retracting (breathing with his stomach) very hard. Jude was panicking and I felt a bit overwhelmed. He couldn't get in air and I could see the look on his face so I broke out the Morphine for the first time and I just prayed it worked. I put the blue fluid through his line with Emily's help and we waited. Within minutes Jude relaxed, he smiled, and he took a very big breath. His 02 went to 98! His heart rate stayed rather high but at least his o2 level was normal again. When I sat down and evaluated the situation I realized that Jude was in respiratory distress again and I realized this is no longer pneumonia. Jude's lungs are damaged and this is probably his new normal.

Jude never went to sleep.........even after the Morphine. So when the nurse got there at 7am I thanked the nurse and then thanked the Lord I didn't work today and went to sleep until 10. I then called the hospice nurse and explained what happened. She agreed that Jude was in respiratory distress and that I luckily made all the right moves. I have to praise Emily because she was right there with me when I handed out orders for supplies. The nurse also said that I was right and this may be Jude's new normal and figuring out what works for him to help him relax. Tonight Jude got very stressed out about 7pm and my friend Gina witnessed this. I finally had to give him Ativan and he settled down. Now hours later Jude is having oxygen issues again. This seems to be a major issue at night..........I am wondering if that is due to exhaustion through the day???  I have him back up to 8 liters and we are using the suction on a frequent basis. He is still smiling when I sit and talk to him and stroke his hair. I am not quite sure what to hope for anymore for Jude but I know he is very aware he is loved very deeply and cared for very well.

Friday, January 2, 2015

A Friday night update.

Jude looks better and then he doesn't look better. Tonight Mike asked me if I thought Jude was turning the corner and I told him "I thought so but then last night Jude looked a little pale". I am just confused with his situation so I choose to hope for the best. I choose to believe Jude is getting better! I tried holding Jude tonight for awhile........I unhooked the oxygen, his feed, and the o2 meter. I settled myself into the couch with Jude and began kissing him on his forehead. I smelled his sweet hair and watched his little dimple on his left cheek rise when he saw me. He even started giggling but then Jude began to look very tired. We hooked his o2 meter back up and he was at 86 then 84. So I just kissed Jude, held him tightly, and gave him back to his dad to put him back in his bed and we secured his face mask. Soon he was back at 98 on 6 liters of oxygen and 143 heart rate. We see glimpses of Jude immersed in our new normal and we are forever grateful for his smiles and giggles. Jude strains his neck when he hears us talk and he has started searching the room for the ones he loves again. He is just so precious and he just loves being around family.

It's hard for me to talk about this next section of the blog without giving away those who might have had these thoughts. It's been pointed out to myself and my family that sometimes we look tired, sad, negative, or angry. Our normal everyday expressions seem empty or spaced out. Understand that it takes every ounce of energy sometimes for us to keep putting one foot in front of the other. I think I have reached the point of exhaustion. Today I felt so tired at the courthouse getting Emily's passport that I thought I might pass out. I have NEVER felt like this so I gathered myself up, took a deep breath, and told myself to get it together. Emily is the same way even though she puts on a very good front. She hears what goes on at night and she gets woken up constantly but she hides it very well.

I haven't heard from hospice, from the nursing agency, or from anyone I thought that could help in these days. It's not their fault. I know they have so many patients and I sometimes feel like I am such a nuisance when I call agencies. I have never been through any of this before but I know I am so tired and so is Jude. Hell for all I know he may be decent compared to other people in his situation. However he was up again at 2:30 last night and never went back to sleep. Yes, I know prednisone causes sleeplessness I had to take it to bring my platelets up when I was pregnant with Jude. However this is just Jude's new life. He needs constant suctioning and more to keep his levels normal. I do NOT need anyone's pity I am so happy that Jude is still with us. I do however need to share our experience so people will understand and can relate when they need to. I need to tell people that if I or anyone else in my family looks upset it's because we have a lot going on. If I skip out on a event or function it's not you it's just me being selfish and I just need to bypass that situation. Hopefully you understand. Tomorrow is Jude's last dose of the steroid and then we will watch with hopeful hearts that he will continue to improve.