Wednesday, February 25, 2015

Jude's poor little toe.

Jude has a burn on his big toe from his pulse oximeter. It also looks like he may have a small pressure sore on the toe. On Monday when the nurses were gone I gave Jude a shower and I unhooked all of his machines. I noticed when I unwrapped his toe it seemed a little tight and looked a little skinny. I am assuming all of this was starting then. Everyone is pretty diligent about changing the pulse ox out each day just like they do with Jude at the hospital. However, today we read it should be changed out every 2-4 hours. Again, when Jude's in the hospital I WITNESS them change it each day NOT every 2-4 hours. The nurse felt bad, we felt bad, and Jude feels bad. Something like this could be really really bad for Jude. However Jude's sweet nurse Charlotte is on top of things and I stopped at the store to grab anti bacterial ointment with pain reliever and Aloe Vera. Hospice is also coming first thing in the morning.

Since everyone knows me ........... you know I googled this situation. How many times have I said on this blog NOT to google? Well I need to heed my own advice. So it seems sudden burns on people that have had pulse oximeter's can be caused due to skin integrity. A lack of flow of oxygen to limbs and a breakdown of skin can cause burns and sores. sigh.

Jude's had some oxygen issues throughout the day but tonight he seems to be resting comfortable. Jude's had his medication, I doctored his poor little toe, and he is tucked in to bed. 

Tuesday, February 24, 2015

Jude's not so great day

Jude had a hard day today while I was gone. I can tell he is getting sick again and Charlotte mentioned she noticed a change in his behavior on Friday. Luckily he isn't running a significant fever yet, but we are closely watching him. He had Morphine twice today, benadryl, and more to help him breathe and help him relax.

When I got home he smelled sweet from his bath that Charlotte gave him and he was snuggled into his pillow fast asleep. Charlotte explained he had several gasping episodes and she had to use the re breather or reposition him throughout the day. I walked away from his bed and looked from the kitchen into my living and thought "he is having a good day now". Then I stopped myself and he isn't. Let's be he isn't. I am not being sad, or angry, or anything other than 100% completely honest.......Jude is NOT having a good day, month, or year. His life mostly consists of being in a hospital bed in our living room now with his oxygen machine running and a suction machine frequently attached to his lips. He cannot stay in his wheelchair or bath chair for hours like he used to.  For a few seconds I felt sorry for Jude that he was having to live like this, but I know he is just happy with the love showered upon him. Jude knows only love and that makes these days more bearable. His little lungs work SO hard that Jude is frequently drenched in sweat. We thought he was just hot or had a fever, but Charlotte made the point today that it's probably just from working so hard and it made perfect sense. If we run a marathon we are drenched in sweat and Jude's little lungs run a marathon everyday. Yet Jude wakes up on his face and the constant fight seems to have little effect on his demeanor.

We are hoping the night nurse can make it today so he will have someone watching him throughout the night. We missed our nurses during icepocalypse. We are suppose to get 3-5 inches of snow throughout the night which may create delays in the morning. I need to remind mother nature I live in Texas NOT up north.

I am hoping Jude has a restful night tonight.

Monday, February 23, 2015

Jude's ice day

We had an ice storm here in the great state of Texas so I am at home with Jude today. His nurse couldn't make it because the roads were so bad. Jude is super happy I am home and I have been talking to him a lot today. I was able to snap a quick picture without his oxygen. 

I quickly had to put the oxygen back on and then I caught T Rex Jude. 

Earlier I wanted to give Jude a quick shower so I unhooked him from everything and quickly took him to his roll in shower. It wasn't long that Jude got very choked up and started turning blue. I yelled for Mike to bring me the suction and once I cleared him I ran him to his bed and gave him a breathing treatment. This seemed to help resolve the problems and as you can see above he recovered pretty well. He is running a slight fever and has had some oxygen problems all day but he is so happy! His cough has increase and he is a bit pale so I am wondering what is brewing in his lungs. However, I have decided to just enjoy our ice day and hug on him a lot. Ignore his tattered little pillow case. These sheets match his room but I cannot locate anymore and just cannot bear to part with them yet. 

Thursday, February 19, 2015

I asked him if I was an awful person and Jude's rough night

Jude had a pretty rough night. I could hear the nurse suctioning him and his oxygen level dipping on a pretty consistent basis. I would get up to check on him but there wasn't much more that could be done. When Charlotte got there she said she worked until about 11am to get him comfortable but he finally quit coughing. She said he is resting in his wheelchair now and seems pretty happy. I asked her how his lungs sound and she said "Like they always do". I replied "so terrible but you have heard them worse" and she agreed. I want to cry at night when I hear Jude's alarms go off and sometimes I do. Sometimes laying in the dark I just let the tears roll because I hate that Jude suffers with his respiratory issues. He coughs, gags, turns red, and almost throws up trying to clear his airways and breathe. Some days are better than others and I like those days! When he is smiling and happy without a lot of coughing. Primarily though it seems Jude just coughs all night long. 

Yesterday we received a copy of Mike's FMLA paperwork that was filled out by Jude's doctor. On the line where it said "expected outcome" it said "terminal" and I just lost it. Right there at work I just bawled my eyes out. So today I had lunch with Mike today and admitted to him I am not in the best of moods. I told him I fluctuate back and forth between wanting to be with people and getting severely annoyed with people. I told him I don't want to hear about people's happy days, happy children, and happy existence right now. I almost want to shout "MY SON IS DYING" when people start telling me about their happy days or their troubles. Then I paused and said "am I terrible? am I awful Mike?? So many people have helped us and I should be kind and loving to them, so am I an awful person". He said "Not at all and it's exactly how I feel too". I almost felt relief because I was feeling so guilty and terrible. 

So I am occupying my time when I am not with Jude on work and focusing on Emily's pageant in April. I am getting everything in order for her and getting everything paid for. It's very important to her and I want to make sure everything is set. I don't anticipate on anything happened regarding Jude getting more sick but in case I cannot be there I want everything to run smoothly so Emily's dad can take her. We have almost everything she needs in order with the exception of a few items we are going to try to tend to this weekend. 

I would like to thank everyone that came forward and provided meals when Jude got out of the hospital. It was so amazing to not have to cook. Work is flowing well and the rest of our lives seem to be rather calm so we are just taking it day by day. 

Wednesday, February 18, 2015

Being healthy

Jude has had some respiratory issues today but I am going to steer in another direction on today's blog. My friend Stacy whom I have met via Facebook through our children's similar situation shared this story today and I was touched.

When I met Mike I was in the best shape of my life. I worked out several times a week and I would generally eat pretty healthy. I didn't count every calorie and I did have my wine but I was very active and I knew I looked great. I related the the above blog in many ways. I agree that when you are a size 4 you tend to turn heads and offers for torrid love affairs are a common occurrence. 

Being thin and pretty has it perks and can make a persons self confidence soar. Working out also releases endorphins to help the mind and spirit. Exercise is something I truly enjoyed and looking good was a bonus. However was being thin responsible for my happiness? No. I was happy because I loved my life and was happy with the person I was on the inside so I felt it showed on the outside.  Keeping up with ones appearance and being healthy should be a way of life.....if you have that way of life available.  

Without question the last six years have been very rough and have taken a toll on me mentally and physically. When you work all day and go home to work at night there is no time for the gym. Sitting on a couch listening to a sick child takes over the need to be thin and beautiful. I still eat relativity healthy, I still consume my wine (helloooo calories), and I have little time to exercise. So looking at my pictures I see my hair has grown dark, my face has aged, and I weigh more than I ever have. 

Does this make me unhappy? No. I am still me and I refuse to give into corporate America's stigmata of what a beautiful woman has to be. I do not need to be airbrushed, I don't need to be a size 4, and I don't need to be coated with a tan. I am beautiful just the way I am because I am pretty on the inside and my child is much more important. I no longer turn many heads when I go out to the store but occasionally I get a wonderful compliment. My husband still loves me very much and I am very comfortable being the mom who has trudged through hell and came out a little heavier. I don't need a particular pant size to validate my happiness or self worth and you don't either. Being healthy is so much more than just a size. 

Tuesday, February 17, 2015

I am more calm today

I am better today and so is Jude. Hospice saved the day yesterday and calmed my nerves when they had their own transportation show up to get Jude to the hospital to get his feeding tube changed. My husband followed behind them in his vehicle and Jude's nurse rode beside him. Once there they pulled out Jude's old tube and my husband said you wouldn't believe how clogged it was. Transportation then took Jude back home and left him snug in his bed. 

I think the trip was a little much for Jude and his nurse ended up having to medicate him yesterday. This put him to sleep from 3:30 - 8:30. When he woke up he was very smiley but was having issues with his respiratory system again. When the night nurse got there she took over and I went to sleep because I was very tired from the night before. About 4am I heard Jude's alarms going of, him coughing, and a lot of suctioning. I cannot seem to keep myself in my bed when I hear those sounds so I went out to see what was going on. Jude was having another coughing attack and she was trying her best to get him under control. His heart rate was over 170 because he was so stressed out.  I asked her to give him an Abuterol treatment and this really helped him. Soon he began to relax and finally he started closing his eyes. She again said she wasn't sure how we took care of him alone at night all these years and still worked. She is very sweet and very loving with Jude. 

So Jude's antibiotic completed yesterday. Now is a critical time for Jude and one where we really have to watch him. Hospice is going by to see him today and mentioned they will be keeping a close eye on his situation. So add him in your prayers tonight. 

Monday, February 16, 2015

Some days you just want to hit a wall.........hard.

Today I am frustrated! I am not going to apologize, I am not going to listen to people saying calm down, today I am just pissed. Give me a few hours and I will be better. 

Saturday night Jude fell asleep and slept 18 hours. We were all a bit worried and were wondering what was going on and wondering if he was becoming more sick. Jude would react to us but it was like it took to much effort to open his eyes. Finally Jude began to wake up and to interact with us so we were all a bit relieved.  We are guessing his body was just exhausted from all the respiratory issues and just needed sleep.  Overnight he had some tone issues and I kept hearing his alarm go off noting his oxygen had dropped. I then kept hearing the nurse suction Jude because of his bad cough. So I kept coming in to check on Jude and I just couldn't sleep. Finally about 3am I heard his feeding alarm go off and I knew there was an issue with his feeding tube. We spent about an hour and a half trying to unclog it. Mike tried, I tired, and the nurse tried. We pushed water, coke, everything that is suppose to work and nothing worked. I cannot stand this G J button because of the clog issues. However we can normally unclog it and go about our lives. Finally about 4:30 we gave up and went back to bed hoping Charlotte could unclog it when she got there in the morning but it was a no go. 

So now I am trying to set up Hospice transportation to take Jude downtown to Cooks to do an outpatient procedure to get this situation resolved. I am having to call back and forth between different departments within Cook's because no one can seem to get the right hand to work with the left hand and get this situation taken care of. We do not want to come in with a hospice team and sit in the ER for hours. So if we can set an appointment with radiology we can go straight in and deal with the doctor that took care of placing the tube originally. However I keep getting transferred around and I am at my wits end. So I finally just called Palliative care at Cook's and once again they were amazing. The PA said if she has to walk the order to the doctor herself that she will get this handled and she understands my frustration. So I am waiting on calls back so I can get everything finalized and get Jude down there to get this handled. Since Mike has an excuse from work due to his back he is going to ride with Jude. So I feel terrible I am so frustrated when I am not even the person going or the person with the clogged button. Today was the first time I just sat down and said "REALLY?  When do we catch a break. When does Jude catch a break". I keep reminding myself that our lives are chaotic but still blessed. Breath in breath out. 

Saturday, February 14, 2015

Jude's happiness, Jude's hardships, and Mommy's sadness.

I had a horrible allergic reaction to something last night. That's one of the negatives of living in the great state of Texas....allergies. There are many amazing attractions in our state but the massive amount of pollen occupying the air is not one of them. So with swollen eyes I went to lay down about 10pm and Mike took the first shift of "Jude watch 2015". Mike said Jude was pretty quiet and was comfortable in his bed until about 2am. I heard Jude coughing without a break so I crawled out of bed to find out what was going on. Jude was encountering his normal respiratory issues and he was giving Mike a few fits. It took about 2 hours of getting Jude under control but with breathing treatments and medication he finally fell back to sleep. So 4am was Jude's night night time yesterday.

Today a nurse came to interview to work here next Friday and Saturday night and I really liked her. I point BLANK asked her if she had an issue working with a child that was so ill and she told me she didn't. She is an RN and seems to have pretty extensive experience working with acute illness cases.  She even scooped Jude into her arms and gave him a hug. So next week we will have nursing around the clock except for 5pm - 10pm each day. I know Jude has a group of great care givers lined up. Jude comes off his antibiotic tomorrow and there is a part of me that already wants to cry. I want Jude to be healthy without any further medical intervention but I have the education to know that isn't possible. So I am going to hope that Jude will continue to do as well as he can. Tonight I unhooked him from everything again and he was so adorable. We sat and sang "Hey Jude" while we watched "Across The Universe" together. He would smile every time he heard music and without inhibition I sang at the top of my lungs for him.  When I put Jude back in his bed he was so tired that he immediatly fell asleep or it could be that I sang so poorly he decided to pretend to sleep ;).

I have a few friends that are in need right now and I have no doubt I am saying the wrong things to them to try to help their pain. Despite the front I put out there I am struggling and I do mean really struggling.........probably far more than you think. I am so very very tired and I just want to spend time with my son.  I don't have it in me to take care of anyone else like I normally do and I feel so guilty that I don't have it in me. I cannot watch my words, my thoughts, or my actions right now. I also want to make others feel better in their times of need but I have little reserve to dip into. It's so not me and I am struggling. It's reality and reality is something I always swore I would post on my blog throughout our journey. For anyone else going through something similar my cousin said it best. No one will blame you for any thoughts you have whether they are negative or positive ... in fact it's just better to get them out.  I know I am battling a little depression and I think that's probably pretty damn normal when your child is so very sick.  I can deal with it and I will deal with it!  I will get myself up day in and day out and function like I need to for work, home, and to make myself a better person. At least when I hold Jude or spend time with Emily my life is so much brighter and has amazing purpose.

So if you feel I don't have time for you or say the wrong thing to you just know it's not intentional.  Also know when you tell me "I don't know what to say" that I take that to heart and will hug you for being honest. No one expects you to say anything. Jude is here and he is happy when he is awake. He still has considerable respiratory issues but we are learning to control that with medication and positioning. He loves being at his house and in his little bed that is set in our living room with his family or nurses always around him. That's what's important.

Thursday, February 12, 2015

MIA nurse and staying positive

I unhooked Jude from all his equipment last night and held him for awhile. He just loved it! He smiled, he coo'd, and he even giggled. It was a great time and we both enjoyed it very much. His oxygen was a bit low when I hooked him back up but it was not at a concerning level. 

Jude had a pretty decent evening but he did require a lot of suctioning. He would start coughing and become very rattled so we had to work with him. During this time a nurse came to orient with us so she could work on Friday and Saturday evenings. This would give us a total of four nurses which includes his invaluable Charlotte which is his full time day nurse, Allen his weekend nurse, Mo-Gee his Sun - Thurs evening nurse and then we would have the new nurse on Friday and Sat evenings. That gives us 6-10pm everyday that we are caring for Jude on our own and we get some quiet time with him.   So the nurse that was training stayed with us for about two hours. She spent about an hour with me and then an hour with Mo-Gee so she could explain what she does in the evenings. Since Jude's overnights are pretty difficult she had a lot to go over with her. She then indicated she could not work Saturday and I had mixed feelings regarding being alone with Jude. I have no doubt after caring for him for so many years I could be on my own. However as indicated this morning by someone Jude's care is pretty acute these days. So I put a call into the nursing facility. They then explained the new nurse wouldn't be coming at all because she found Jude's condition to depressing and overwhelming. She didn't feel comfortable staying with Jude. At first I was rather irritated because I believe nurses take an oath to serve. However, the hospice nurse pointed out my words from yesterday regarding Jude's situation. That even though this is our (yet again) new normal this is not normal for most. That many nurses would walk in and believe Jude should be in ICU, but you cannot live in ICU. I agreed and decided to be more positive and understand if she felt uncomfortable it's not the right place for her and Jude deserves the best care. 

So we have a few options regarding nursing care on those particular days. The nursing facility is looking for someone else, we can take him to inpatient hospice for the weekend, or I can stay on the couch and stay up with him Friday and Saturday night. The latter is probably what will happen. I have no doubt I can care for Jude and I will do my best I can. Jude is still on antibiotics right now so we have medication naturally fighting any infection trying to attack his lungs. So right now we are primarily dealing with the chronic lung disease, anxiety, tone, and pain. I believe I can keep that situation under control. I am wondering how his body will react when the antibiotic is finished. Jude's overnight was again full of restlessness, hard coughing, and breathing issues. Mo Gee was amazing with him and worked for hours to make sure he was taken care of. 

I am trying to be positive these days. Jude is with us and we get a few good hours with him everyday so that's great! I get a little irritated with people complaining about their lives or complaining about negative situations. I think to myself that they have no idea true hardship but then I remind myself that everyone is different. I have no idea what's going on in their lives and everyone has a different threshold and tolerance. So then I just smile and hope the best for them. 

Wednesday, February 11, 2015

Jude's terrible awful no good very bad night and Mike needs help

When I got home from work I was THRILLED to see that Jude was awake and so happy! He was even "talking" to me in his little Jude voice and just seemed like he was feeling pretty well. I posted an update on Facebook letting everyone know he was having a good day. That was a half truth because he had slept the majority of the day with Charlotte. 

Then the bottom dropped out and once again Jude was miserable. He was uncomfortable, having coughing issues, and issues with thick secretions. We remembered that the doctor said he believes Jude has anxiety because he feels he cannot get proper air into his lungs.  I leaned over and asked Jude if he wanted me to hold him and he got the most hopeful expression on his face. He was connected to all his machines so I just scooped him up a little from his bed and held him. It quieted him some but then he began to get rigid and cry again.  So I gave him some Ativan and then some Morphine but nothing helped so I took a recording and sent it to the hospice nurse. 

I didn't post the recording but I did take a snapshot to show how upset he was. The video is heartbreaking and I didn't feel it needed to be posted. I decided to give him some Motrin to see if it would break the pain since it would coincide with the other medications.  It didn't take long for the hospice nurse to call back and say "I don't like that at all". She wanted me to give him some more Ativan but he began to calm down on his own. Soon the night nurse arrived and she took over the situation. Poor Jude was once again up until 4am with breathing issues, anxiety, tone, and pain. I am wondering if we need to discuss a different pain medication that is scheduled to prevent Jude from getting to the point that he was above. His nights are just terrible and the night nurse is amazed we have been taking care of him and going to work. 

Sometimes I get so wrapped up in Jude's situation that I forget just how very sick he is. I looked down at him last night and I thought if this was Emily we would be at the ER. It was a reminder that Jude needs extra love and attention right now. He shouldn't have to go through this and it just breaks my heart to see him struggle. My aunt came in town and I am so very grateful. Mike and I had to sign some important documents last night and she was there to care for Jude while we took care of our business. I know she was having a hard time with him too and I think last night she saw just how upset he can get. She also saw just how hard his breathing and airways are to control. I am also eternally grateful she is here because if our plate wasn't full enough my husband hurt his back. He literally cannot walk and is laying in bed in severe pain. So if anyone makes house calls Mike needs help! SOS SOS!  I had to come to work so I left him with a pen, paper, water, ibuprofen, and the remote. Poor guy! 

Monday, February 9, 2015

Jude's Monday update

Everyone has been wondering how Jude has been since he has been home from the hospital. I am generally at a loss for words and unsure how I should respond. I really didn't have it in me to post an update this weekend. There are some hours that Jude looks very good and more like himself. Then there are bad hours that Jude is really struggling with his chronic lung disease. He coughs until he is red in the face and his lungs crackle with fluid. We consistently suction him to pull the fluid out and we re position him on a regular basis. He had a hard time yesterday evening while I had friends over visiting him. Eventually I gave him some of the new concentrated Morphine and I was relieved that it helped him. His respiratory finally relaxed and Jude finally settled down. 

Our weekend wasn't easy. Mike and I talked about subjects that no parent should ever have to discuss about their child. I want to point out that we in NO way expect Jude to leave us any time soon. We hope that he is with us for years to come. However, our situation is to a point that we had to make plans and those plans were difficult to discuss. I am grateful that I have an amazing husband by my side and that we can support each other. 

Jude's wonderful nurse Charlotte is back and she is loving on him today. I checked in with her and she said that Jude is just "a sick little boy". She then said he is very pale but that she was able to give him a shower without his oxygen dropping. We then talked about what the hospital told me regarding the machines which she was already aware of. That what's happening on the inside of our bodies may not show on the monitors... just like the blood gas emergency. Then suddenly a prior conversation I had with the doctor where I thought he was being rather rude surfaced in my mind. He told me that one day there may come a time that I don't care so much about Jude's monitors. He wasn't being rude he was just more medically educated than I was and he knew fully how the body works. 

Melinda the hospice nurse comes to see Jude almost daily and yesterday she sent a sweet message. She said Jude was laughing while getting a bed bath and listening to Sponge bob. 
So Jude listens to his cartoons each day, Allen reads him the Bible, Charlotte loves on him, and we talk to him every chance we can. Jude looks frail and tired but he is here with us and is our little fighter. There are some video's I could post to give people a better idea of just how sick Jude is but I chose to keep those private. I would rather people see Jude smiling and happy. #onlyloveJude

Friday, February 6, 2015

Only love Jude........hardest blog I have ever written.

I know people have been worried but we needed a day to ourselves today. Please be patient as we adjust to what is going on.

Jude has good hours and bad hours. Fortunately last night he had a very good hour. He was very smiley and looked much more like himself. His respiratory rate and heart rate were still high but he was much better than the day before. Here is a great shot of how he looked and how responsive he was to me.

Mike and I had a hard day yesterday with lots of tears shed. Even though Jude is doing better we have faced reality and listened to the doctor. We know Jude has really suffered and once this pneumonia battle is won there will still be continued suffering on the horizon. As the hospital stated "at this point Jude will not get well but we can make him better".  So we had to make difficult decision regarding actions to take if Jude should code again. We also made a very private and very difficult decision regarding Jude's continued care. We know that despite the happy pictures I post like the one above the other pictures like below that I don't normally share are far outweighing the good pictures. This was a shot my friend Gina took without us knowing in PICU.

We watch as Jude's respiratory works three times faster than ours does because his lungs are just riddled with scar tissue, disease, and fluid. The X rays are almost solid white now.  I hate seeing Jude suffer, gasp for air, and struggle.  After watching a child across the hall code yesterday I just fell apart. The crash cart and life saving measures were loud and overwhelming. This only landed her on life support and my understanding is from transactions last night this also ultimately failed. Mike and I just clung to each other and cried and decided this isn't what we want for Jude.

Jude reminds me of the movie "The Perfect Storm" because we ride the large waves and get excited when we see the daylight in his bright smile. However soon the dark clouds rise again and Jude is enveloped in breathing difficulties and anxiety. So this morning I met with hospital staff who went over a plethora of information. We then signed sensitive documents I prefer not to discuss and the Teddy Bear Transport came and picked Jude up. I looked around the Cook's Children's hospital room and took it all in knowing I wouldn't be back. In my own way I guess I was saying goodbye to the facility that has served my son so well. We loaded Jude into the ambulance with a nurse, a respiratory therapist, and an EMT by his side and we headed for home. We were taking him to his bed, his family, his home, his familiar.

When we got Jude home my house was filled with medical personnel. Although their words were kind and gentle I felt such finality even though I know it's not the case at this point and time. I felt like Mike did, that we could no longer rescue Jude and as his parents that feels like our responsibility. Nurses surround Jude's bed now and hospice is here making sure everything is the best it can be for my little boy. I guess I have heard two lines that were fitting today, "This is done from a place of love with an understanding that you care enough about your child to no longer let them suffer" and "this F'ING SUCKS". The latter comment may be the best one to sum up the situation.

I guess the one thing this horrible emotionally raw situation has taught me is to cherish each and every amazing moment. I am not sure if Jude will be with us days, weeks, months, or years but he is with us now. He has been my teacher and I am so very blessed to have him as my child. No more hospitals Jude! No more ouchie Iv sticks, blown veins, long ER waits, or PICU stays, only love Jude.....only love.

Thursday, February 5, 2015

A quick update

Mike said Jude was moved from ICU to a regular room at 4am this morning. He also said he had a much better night last night. He is still very sick but it's a step in the right direction. I had to come to work for awhile today but once I have everything wrapped up I am leaving. I feel like I do a good job at my work and if I have to go take care of my son it's just what's going to have to happen. So once I get caught up I am leaving.

I am not able to answer all the emails and texts this morning but I appreciate the thoughts sent. I am truly hoping we can transport Jude home through Hospice where we will all be much more comfortable.

Wednesday, February 4, 2015

The big update and Jude's serious situation

I am afraid I was right......Jude is sick. That's really the best way to sum this situation up.........Jude is really really sick. Yesterday while I worked the poor new nurse dealt with what we did during the night. Finally at about 4pm she called 911. She made the right call and one I would have made once I had gotten home. Mike and I both pulled up to our driveway with an ambulance in front of our house. Suddenly I became completely overwhelmed and broke out in hives all over my neck. I felt dizzy, faint, and I had to decline the ambulance ride with Jude so Mike went instead. My heart just sank and I knew this was serious. I packed up everything I could from Jude's medications to his invaluable boppy pillows and headed to the hospital with Emily. Once I walked into the ER room Jude looked and sounded terrible. I began to tear up and Mike stood fast that nothing was seriously wrong..........but there was. The ER told us it was double pneumonia and it looked worse than the situation in December. They originally discussed ICU but ended up sending Jude to the Critical care unit. Jude didn't have an easy night but we were able to get a little rest since we were in a private room and not the bright noisy ICU. Today was even worse. Jude gasped and struggled to breathe and it was one of the hardest situations I have EVER sat through.  Jude also seemed extremely sedated but he wasn't at all. Jude's Pulmonoligist came to the room and that man is great and always to the point. I told him the ER explained Jude has double pneumonia that looks worse but critical care said he has bacterial pneumonia that's scattered. He said there really is no reason to put a label on Jude at this point in regards to pneumonia, viral infection, or other issues. The problem is that something new has attacked Jude's respiratory system and it needs to be dealt with as a whole. He did explain that Jude's overall picture doesn't look very good and that Jude looks very sick. He didn't mean it negative he was just being honest. He then talked to me about making a decision regarding possible intubation and if we would want Jude on a breathing machine. I told him I would have to talk to Mike.  

 As medically educated as I am I was baffled as to why Jude's oxygen level was normal but he looked in such distress. His respiratory rate could be near 80 but again his oxygen would be 100. Then they did a blood gas and it was a little raised, but then they took another and it was 74. Alarming. They explained that this meant Jude's blood was not properly oxygenating and therefore there was a build up of carbon Dioxide. Jude's body was poisoning itself. So we readied to go to ICU. They then tried a high flow nasal cannula to force air into Jude's lungs and help dispel the CO2, however his oxygen then began to drop. When Jude's oxygen got to 85 the RT took the high flow off and apologized it didn't work. Once we were in ICU a flow of doctors and nurses came into the room. They began to assess the entire situation and they noticed Jude's IV (once again) had blown so they had to change arms. This woke Jude up (finally) and suddenly Jude began to look better. We got some smiles, his oxygen held, and he just seemed better. They then tested his blood gas and it was back down to 49. This was good news, but the doctor pointed out that we didn't want to push things and we needed to give Jude 6-8 good hours. 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.

The doctor then explained that Jude's overall stats may look good on the machine but if CO2 builds up to high then by the time the machines show an affect it can be a very serious issue. I had to go home tonight and get some rest. If Jude is stable all night then I have to try to work tomorrow but I don't want to. It's so hard to be away from him and as a parent your mind is always wondering. Mike texted me that Jude did start the rapid labored breathing again but that his blood gas continued to decline which is amazing! So I am truly hoping the antibiotic has kicked in and Jude has turned the corner. If he has he will be moved to another room. Once stable enough Hospice will transport him back home where a critical care nurse may join our regular nurses to watch Jude. It's been a hard 48 hours, hell it's been a hard 12 months but we got a few smiles out of Jude tonight and they were a pleasure to witness. One thing is for sure....Jude is always a mystery. He can go from us thinking we may lose him to doing so much better in a matter of hourse and vice versa. He keeps us on our toes!

I was looking back over old messages last night from people regarding Jude's situation or life in general. I think I was rather short in them many times or thought I knew more than I did. Now I know I am learning everyday and I try to be nicer to everyone. Sometimes when you are caring for someone that is so sick you lose sight of anything that resembles patience. So if I ever came across in a negative way to you trust me it was unintentional.

Tuesday, February 3, 2015

Jude's not feeling well and a stressful day

I was hoping to post something positive today but that's not going to happen. Yesterday was stressful. Jude's poor sweet nurse is very sick and is unable to be with him right now. It would be great if everyone could say a little prayer for her to get better soon. I hate to think of her not feeling well. So in addition to scheduling and hunting the night nurse we had to start working on a day nurse too. Luckily Allen filled in yesterday until they could locate someone new. We trained her last night and she was there bright and early this morning. However this is how Jude was all night and then this morning.

All night we suctioned Jude while he coughed terribly. His oxygen would drop but we could get it back up by turning the oxygen level up or repositioning him. Today his cough is still terrible and he is running a low grade fever. However, he IS smiling so that's a good sign. This consistent cough came on rather rapidly so I am a bit worried about aspiration. Jude's heart rate is also hovering around asleep resting. After Motrin it was around 150 and the nurse said he was more comfortable. I felt bad leaving a new nurse with Jude in this condition, but she is staying in close contact with me.  

To top my stressful day off yesterday our neighbor across the street decided to put a note on our nurses car. Our driveway and our house was rather full yesterday due to everyone being at home helping Jude and bringing in additional people. So our nurse parked on the street in front of her house. She didn't like that so she let him know not to park there anymore. I was beyond frustrated and it really happened at the wrong time. So I took a minute to think about the situation. I could see how having various cars on the street could be frustrating. However, I could also note that no one was blocking a driveway, a mailbox, trash cans, or anything else. They also were parked correctly according to law and not causing a safety concern. So I went to talk with her. She seemed receptive. Sometimes I wish people would just take a moment and step back in life. To sit down and realize what's truly important and that the small things are really just that.......small and trivial. Just learn to breathe deep and take in what's truly important. If you dish out positive vs negative it makes everyones life so much better.  After this incident a different neighbor encouraged us to park in her driveway so we wouldn't encouter anymore stress than we are already dealing with. Very sweet of her and very kind!  

Hospice is going to see Jude today and they will let me know what they think. However, it's one of those things that as a mom I know where this is going. Jude probably needs a chest x ray. However, if we go in they will admit him and I would rather try to treat this at home if at all possible.