When I got home from work Jude was becoming toned out so I gave him his scheduled Valium and Baclofen and put him in his wheelchair. This controlled his pain and tone for awhile but then all hell broke loose.
Emily and her boyfriend where in the living room watching a show with me and Jude just started wailing. It took hours to get him under control. Emily even said, "this is the worst I have seen him". I held him every way I could, gave him his new muscle relaxer, and more. I took him into his bed and set his nightly feed and medications up. I set him up around his boppy to try to break the tone. Soon he became quiet but I noticed he became pretty pale. So I hooked up his monitor and his o2 was at 81. He didn't have a lot of congestion in his throat so I hooked him up to his oxygen and got his level up to 87. Still not fantastic but it was enough to let him drift off to sleep. Jude woke up several times throughout the night and two of those times he was screaming in pain. He then woke up at 5am and just stayed awake. When I went to check on him I noticed he felt very warm so I took his temp and it was 99.8 axillary. So I have him some Motrin and waited to see if it would work. Soon he began to feel cooler. Mike is injured so he is unable to help with Jude and by work time I was beat! So I texted my work and told them I would be a bit late so I could lay down for a little bit. Luckily I have that ability.
Once Charlotte got to the house I turned the baby monitor off and climbed into bed for a bit. The extra hour was really needed. When I was leaving for work Charlotte explained that she had suctioned a lot of mechanical congestion from Jude's throat and that his oxygen level was back at 97. She did say he had a rough hour when she first started attending to him. So far this afternoon Charlotte said he is doing well. Hopefully he will stay that way and the fever was a fluke.
Charlotte is off tomorrow so we had to find a fill in for tomorrow. We yet again had another nurse debacle! The LVN came this morning to orient with Charlotte then when she left she called the agency and said she wouldn't be there tomorrow. This was a reminder of the prior nurse situation a few weeks ago. I am not sure if they truly have situations that come up outside of work or if they are just worried about caring for Jude in his condition. Anyway, the agency found an RN to fill in and she is training with Charlotte from 2-4. This all makes me appreciate our nurses so much more and we are truly thankful for them. Jude's nurses are on time, caring, and organized. I was very stressed thinking I would be missing work again. As much as I would love to just stay home and hold Jude it would mean another day off.
Emily has to be at a football game tonight but I literally just want to lay on my couch. I feel like I am caught in a thunderstorm lately without an umbrella, but Jude's smiles give me rays of sunshine and a break in the clouds at times.
Jude has slept a little better the past two nights. However we now have really bad nasty diapers........which is always a bit of concern. So we are monitoring that and the nurse suggested holding off on any medication to help Jude relieve himself.
He is still having his attacks and like the Palliative care team said we are mostly just keeping him comfortable. The other night I got about 20 minutes of smiles out of him before he went into a full attack again and had to be sedated. It was great seeing his cheesy grin!
It was another hard night. I was up nine times with Jude when he would cry out or fuss. Mike was up a few times too. It took everything I had not to call into work today and trust that I laid there debating on calling in several times. I am certainly hoping that the care team talks to the doctors and comes up with a plan for sleep. In the meantime I am going to hunt liquid Melatonin. We used to crush the pill and give him that at night but despite our best efforts it would always clog the G button. Since the Felbatol eats the G button (scary thought) then the powder will just eventually clog it up.
I feel like I am losing it a bit lately. I am sure it's exhaustion that is causing me to feel this way. Anyway, let's hope for a better week. The good thing is I did get a few smiles last night from Jude in between his attacks. It was nice to hold him for a bit and to see his grin.
I want to thank everyone that has called, texted, or emailed today to get the results of the meeting. I needed a few hours to process everything and I thought I would answer everyone as a whole. They met us on a Saturday since we have missed so much work this year so that was very accommodating. They led us into a conference room where they asked us a lot of questions about our life. I felt like we were in a therapeutic sessions because we talked a lot about how life is and how it was prior to the surgery. Both of the ladies there really listened to us and took pretty extensive notes.
After they listened the physicians assistant explained their purpose and what they want to do. I related to her and I appreciated her outlook on life. She said children that suffer major neurological injuries like Jude have ups and down. She held up her hands and said that Jude's baseline may have been up here but there are things or major incidents (the surgery) that cause large dips. Sometimes the kids come back up to their prior baseline and sometimes you come up to a new normal that was much lower than the first. This is Jude's situation. I expressed that I always use the term "new normal". She then said that as life goes along they may come back up, they may not, or they may continue to decline.
Since I am new to this and I know some parents that are reading this are not bear with me. Over the course of the meeting I began to realize that their job wasn't to get Jude better. Their job was to help us manage the level of care Jude needs for his new condition. I guess I always knew that Jude's condition wasn't ever going to get better but it was realizing he just needs a different level of care now. I told the PA that I appreciated her explanation of how children sometimes decline and how some can regain their prior normal. We then talked about the body and what it needs to function. I told her again I appreciated her explanations. That sometimes people preach to me about miracles when sometimes people just need to realize our bodies are made to function certain ways. When they don't function properly we encounter a decline in health. She said, "sometimes those people don't realize the miracle is sitting in front of them!". I got a little teary and explained I say that all the time........that our blessing IS Jude and taking care of him.
They then asked us the hard part. If we have thought about if we would want them to take extraordinary measures if Jude should ever get to a point that his heart and lungs stop. Immediate tears from Mike causes big tears from mom. We explained we have talked about after but have never crossed the bridge to think about something happening and really don't want to. She explained some more items that were hard to hear and then sweetly told us that preparing can sometimes help a moment of panic in a hospital room.
We then created a plan of action. We had to decide if our goal is extending his life, comfort measures, a good quality life, etc. First and foremost we want to control Jude's pain and his attacks so therefore they are contacting the pain management team. With pain management intervention she explained that other parts of his body maybe affected. We already know that since Valium decreases his respiratory. So this isn't something we are unfamiliar with. They are also going to work on getting Jude to sleep better so we can sleep better. They are going to talk with all his doctors so EVERYONE is on the same page. The PA was so interested she even wrote down Mike's words of "Have the doctors check their egos at the door". Mike and I both praised Jude's neurologist on several occasions (Dr Riela) and explained how the personal interest he takes in Jude's life make a difference in the quality of care he provies. I think this is something they will relay to Jude's other doctors. So we will get Jude pain care, get him to sleep better, and get the doctors on the same page.
They were kind and informative and seemed to truly care. They listened and I think we will see results. Again it's a different level of care but I think Jude will benefit from it.
Jude didn't have a great night again. That means lack of sleep for us all. It's tiring and frustrating but we are marching along. We have a Palliative care team meeting for him Saturday so I am hoping they can help a little.
Yesterday I was reading a post in a forum about how frustrated a mom was of a special needs child was and I could relate. She felt that people complain so much about what seems to be insignificant things. Since she is dealing with such a heavy load she found herself getting very angry at these people. I have been through this and I understand. I think this hit me more when Jude was between 2-3 years old. I was very angry at that point and had little patience with many things. I would even get angry when I would see people's long "birth plans" mapped out on social media. I would think to myself "How about you just hope you go in there and give birth to a healthy baby because sister you have NO idea what can happen". A bit mean huh? Trust me my thoughts could be even meaner. I know the lady that posted in the forum is not mean at all I just wanted to share my experience because maybe someone could relate. For me it was a part of the process of grieving for the child I didn't have and finding the amazing blessing in the child I did have. It took me awhile to realize that even though people's issues seem insignificant to me those issues are important to them. I also reminded myself of my own words..........everyone has their own story it's what you do with yours that makes a difference.
A friend of mine helped me remember that we are all different and all walking in different shoes. Some shoes are more worn than others. She emailed me after reading my blog one day when Jude was little. She is dealing with a terminal illness that causes significant pain. She told me how she loved reading our story and just wanted me to know something. She then proceeded to tell me that she knows our life is hard but she would give anything to be a mother. She would give anything to have a baby and would love a baby like Jude. I told myself that I was allowed to vent and complain about the lack of rest and more because it was healthy. However I would never do that again without counting every single blessing I had. So that is why you sometimes see me starting my blog out with an apology and telling you about my blessings prior to venting. Because I was lucky enough to be chosen as Jude's mom. Because someone in a more difficult situation wished she was in my situation.
I then realized that we are all just living our lives. Some people have never experienced tragedy, some cannot handle tragedy, and some have to much tragedy. I realized I had to stop and accept that I cannot expect people to try on my shoes. They wouldn't be comfortable and they couldn't understand what has gone into making those shoes. I had to respect that what is important in someone elses life, although insignificant to me, may be important to them. When I encounter someone complaining about something that seems frivolous I generally just reply, "I can totally relate and trust me I understand". Generally they take a step back and realize that life has so much more to offer and it could be worse.
I guess what I am trying to say if if you cannot find the rainbow then all you have left is clouds. I cannot tell other new special needs moms that it gets easier, but you do adapt. When people tell you that the first two years are the hardest they are telling you the truth. I know it seems like you are alone in a vast empty space and that no one can understand, but know there are a lot of moms in this world that know what you are going through. There are many of us that could change our shoes out and they would fit comfortable for the long journey we have ahead of us.
When I got home last night Jude once again had a terrible tone attack. After wrestling with him on the couch I decided to put him in his wheelchair. This seems to be the only thing that helps break the tone. As you can see he was pretty stressed when we put him in the chair. You can also hear the issues we have had with the mechanical congestion.
Jude spent two hours in the wheelchair. I miss holding him but he pushes his head back so hard into your arm that you can feel it the next day. Since I couldn't hold him I just held his hand.
I also gave him a dose of Valium to break his tone and calm him down. Eventually he became more calm and happy again.
I also believe he is having new seizure activity with these tone issues. He seems to hold his breathe for a few seconds and then recovers with a laugh. Classic Jude seizure activity in my opinion. I have put several calls into the neurologist but I have not heard back yet. I really don't think there is much they can do other than medicate him more. I think this is just a lasting effect from the surgery. Something happened whether it was from anesthesia or recovery. He slept a little better last night.
I still worry about taking Jude with us to Houston next month. I am not sure it's the best idea, but Mike pointed out Jude would be sedated at night when we drove there. I know it's a quick trip and probably not worth the worry, but I am still mulling it all over in my head. If Jude stays home we would have to bring someone in for several nights and could someone else truly care for him in this state other than his nurses. If we take him with us will he be okay in the hotel and on the drive back home. I think he would, but the drive still bothers me. If he had a difficult time it would be miserable for him and for us. I guess I have 30 days to figure it out.
When I got home from work last night Jude was sleeping. This isn't that unusual but it is unusual he slept until around 8pm. My thought process is that Jude wasn't feeling very well and needed some extra sleep. Generally this doesn't affect how he sleeps throughout the night since he is sedated. He looked so cute while he was napping that I would stop and gently kiss his forehead. When he finally woke up he immediately started toning out and by 10pm he was uncontrollable. His face was bright read, he was hyper extended as far back as he could be, his heart rate was through the roof. I gave him his sedative to put him to bed but it did nothing. Then he started screaming in pain so we gave him Motrin. Finally we gave him Valium. He had all this and NOTHING. Nothing made an impact. He then started getting horrible mechanical obstructions and the congestion was so bad I added yet another medication with Bendryl. Then I worked at rubbing the obstruction up and getting it out. Finally he calmed down and he laid there in the dark quietly. So we went to bed.
About 12:15 Jude started screaming again so we dashed into his bedroom. We turned him from side to side to side and he finally calmed down. So we went back to bed and I slept for what felt an eternity when he cried again and it was.......................12:44 (argh). This went on for hours and I finally just picked Jude up and took him to his futon on the living room. I positioned his Boppy's all around him and put him in a position he likes to sleep in. He laughed a bit and I grabbed a spot on the couch. We both slept for about two hours and then it all started all over again.
Halfway through the night I heard Emily shut her door, the dog sigh, and Mike groan. Poor Jude just seemed to hurt all over and I am super tired at work. I just want to go home and sleep. Not sure what is going on with him. My guess is this is just a part of life after surgery but it is one of the worst nights we have seen with him.
Sometimes I think about living in a tiny house somewhere so I can care for Jude at night and sleep during the day. I could be nocturnal! Anyway, I am hoping he has an okay day. I hate seeing him scream in pain.
Jude is still having terrible attacks. I am not sure what's going on. Like I stated before I think this is just his new normal. He cycles through having a normal week and then going into these terrible weeks.
I put a call into his neurologist to see what they suggest. It's just no way to live and I feel really bad for him.
Before I write this I want everyone to know I am not being negative, I am grateful for my life, grateful for Jude's life, and I know it could be worse. With that being said I am once again being honest and forthcoming on my blog.
It's been an extremely busy week at my work. I am working as hard as I can up until the very last minute. Yesterday after an exhausting day I returned home to Mike extremely frustrated that Jude was having another attack. Jude was very toned out, red faced, sweating, and very uncomfortable. When Jude gets like that you can barely hold him, he is stiff as a board, his heart rate sky rockets, and you are desperate to help him. Mike was at his wits end and I completely got it. He said that the doctors just have to do something. This was caused and started when they put the Baclofen pump in. Since we turned the Baclofen off we are down to 1-2 attacks a day, but it's still not the same. Jude is not the same. Mike said "I cannot even enjoy the good parts of Jude anymore I feel like they robbed me of that". I 100% understood. However Mike was so agitated that we eventually got into a full blown screaming argument. It's what happens people. When you are stressed to the max you turn on the people you trust the most. You say hateful things you don't mean and you start the cycle over again. So Mike walked away and I steamed for a few minutes. Then I realized...........this isn't his fault, this isn't Jude's fault, and this isn't my fault. This is just our life and there is no reason any of us should be angry with each other. Mike said "I am tired of working all day to never sleep at night and to struggle in the evening with Jude's attacks". I get it! I totally get it.
We are exhausted. Mike and I haven't had time away alone for longer than a night (which I think have been 2 and we are grateful for those) since 2010. It takes a toll. We were looking at getting Jude a sitter while we went to Emily's competition over Thanksgiving weekend so we can recharge and restore but that in itself is stressful. Jude's apnea is terrible at night, his attacks are bad in the evening, and if it's stressful for us it would be really hard for someone who is not his parent. We would probably spend the entire time worried about Jude and worried about the person caring for him.
So let's go back to Jude's attack. I drew up 5 ml's of Valium and administered it to him. I then moved Jude to his wheelchair to help break his tone. This gave me enough time to fix dinner and then I had to get Jude out and hold him. He smiled as I kissed his Elvis hair that needs to be cut very badly. I had to reposition him several times in my lap but I was able to control him for the most part. Jude's cough is also back. I am not sure if it's weather, allergies, a new illness, or just the new norm?
So we will get through he workday, go home to his attack, and laugh in bed with the dogs. You have to find time to laugh.
Jude is doing well for the most part. He still has his cough and he is still having some attacks. Mike mentioned that this is probably just Jude's new normal. So we have adjusted to that.
We have to decide if we are taking Jude and his nurse to Houston this year to watch Emily compete. We are going to wait and see how his health is but I worry about the drive. He coughs a lot sitting up consistently so we will see what happens. We have another month before we really have to decide.
I remember when she broke my rib from kicking me so hard.
I have loved her from the start no matter what and always will.
Emily was two weeks overdue and when I finally went into early labor and she took her sweet time getting here. On Monday 10/11/1998 at 4:30pm she finally made her appearance. She had thick black curly hair, big blue eyes, and little chubby rolls. Over the years her hair turned blond, her big bright eyes stayed blue, and the chubbiness all melted away. I have enjoyed watching Emily grow up and I am so proud of the young lady she has become.
Although we get along so well we are actually pretty different. Emily is phenomenal at math and is very good at her studies and that's something I failed at. She doesn't like to go to parties and would prefer a quiet night at home with friends. When I was a teen my philosophy seemed to be the louder the better. Emily set a goal of becoming Miss Texas Teen USA someday and works harder for it than I ever could have. She dedicates herself to working out three times a week among other lessons and activities. At her age I don't think I would have worked so hard for a goal. I also know I wouldn't have had her positive attitude to keep trying and marching forward.
Emily has her faults but in my book they are minuscule. I wanted to raise a thoughtful and kind little girl. One that didn't see race, sexual preference, religious preference, or let anything else stand in the way of having the opportunity of getting to know another remarkable individual. One that didn't judge a situation without knowing all the facts. I wanted to raise a daughter that handled any situation with dignity and grace. I think I was incredibly lucky because that's exactly who I feel Emily is.
We joke how she is an adorable quirky and nerdy girl and I think that's awesome. She walks to her own beat and isn't ever afraid to speak up. Sometimes I see people pass her by versus getting to know her and I feel sorry for them. I feel for them for missing out on such an amazing person. If you take a second to talk to the shy pretty blond she will light up the room.
I cannot believe time is so fleeting. I get choked up because I know in two years she will be leaving for college. I get teary because I know I will miss her but also because I am so proud. I hope you have the best birthday weekend Emily! It's been an honor raising you and watching you grow into such an amazing person. Happy 16th.
Jude's lab work came back clear! The doctor believes the brusing is medication induced. Jude had more bruising on his arms yesterday and I reminded myself that it looks worse than it actually is.
We also won the nursing (insert applause) so a big thank you to my family who stepped up to help financially in a time of crisis and to everyone for your support.
Mike took Jude back to the lab on Saturday to get his blood taken again. Mike signed Jude up on the long list of waiting patients and then took Jude outside to wait. He put a mask around Jude's mouth and nose to keep germs away from him. Somehow Jude's name was called pretty quickly and a line of people held open doors for Jude and Mike to walk through. Somehow I guess that some amazing person gave up their spot in line. People can be so incredible. So they walked to the back where a kind nurse to Jude's blood and he didn't even let out a whimper. We still don't have the results but Jude does have more bruising today. We do know that today's bruising is from his wheelchair because the nurse found his elbows under the pads she made. It's still concerning but Jude's coloring looks really good. So that is reassuring.
So here is where I am struggling. Since the Rhinovirus Jude's congestion and coughing have been terrible. I feel like he coughs on a consistent basis and we are struggling to suction him to get the congestion out. We are past the period that the virus should be giving him issues. His sleep apnea is also so terrible. I get up several times a night to reposition his head, but if I hear the apnea breathing stop I panic. The oxygen cannula doesn't do any good anymore because Jude goes into a full attack because he hates the cannula being put into his nose.We attribute that to the ER taping it into his nostrils and Jude hated it. The pulse oximeter goes off CONTSTANTLY so it often gets shut off. Last night it was 82/186. So it's either keep him in the hospital on a consistent basis or learn to deal with the new normal. I am sure the eventual conversation will hover around a trach but I will put that off as long as possible. We do have a Palliative care team meeting for Jude in two weeks and I am sure that will help.
I am not sad. Jude is not sad. I am enjoying my time holding him at night and talking to him. That seems to be the only time he isn't stressed out around us. The only time he isn't vomiting, toning out, or stretching his body all the way back. He is just happy when I am holding him and he gives me the absolute sweetest grins! His little dimple grows in his cheek when he gives me his smiles.
Sometimes I wonder how much of all of these medical visits and medications are just to make us feel better vs Jude making feel better. It's my job and honor to make sure Jude is well taken care of. To make sure he is getting the best possible care. I just want to make sure he is comfortable but I still wonder!
To date I have not let therapy or teaching resume and I feel like I have met a little resistance on that from those departments. I think Jude enjoys the interaction in therapy but is the risk of infection from other children worth what Jude "might" learn in therapy? To me the answer is no. Jude is simple and loving. He loves his home, his Futon, his nurses, his family, and to be held. It's honestly OKAY with me that he lives his life happy with us without being pushed. I am really okay with it and I think he is too. Mike and I made a vow at the beginning of this that we would never push Jude to be our version of normal. We felt we overstepped those boundaries with the Baclofen pump. I know we shouldn't feel that way but we do. So we have regrouped, re prioritized, and realized! The only thing that's important is Jude's health and his happiness. We know his time is limited so we have to do what we think is right. We may love you in his life but we have to walk this road ourselves. So from this point forward if Jude isn't meant to go out he won't. If he isn't meant to have visitors he won't and we can only hope that Jude is happy with our decision. I think he is really happy with his daily routines. His grandma Susie still comes over and sings to him on a regular basis. She also prays and recites her rosary to him. You should see the way Jude looks at her it's just precious!
I know people are concerned about how Jude's doing so I just reply, "about the same". I really have no further information than that. He is smiling and loved.
Well the Clonidine has been completely nixed the patch and the pill. It did NOT mix well with Jude at all. My guess is still that the pill caused this bruising in addition to the host of other issues Jude has had with the Clonidine. At least that's what I am hoping. So the good news is that Jude's CBC once again came back fine. However the lab..............ready for this...............just skipped right over the clotting factors. They didn't RUN IT! The doctor is very angry. It's the WHOLE reason we went to that lab.
I am really just shaking my head. The lab admitted they just overlooked it and that they cannot run it on the current blood. So we have to take him back and do it all over again. This after been home for days waiting. ...and they wonder why Ebola is in Dallas. (Sorry had to throw that in there).
Mike took Jude to get his blood done this morning so now we just wait. I did do a little Yahoo reserach this morning. I discovered that bruising is a rare side effect of Clonidine which is the medication we nixed on Saturday. So I am hoping that is the situation here.
