Thursday through Saturday

My how time flies…even when you aren’t having fun. My last post was on Wednesday. Thursday we had a few friends over. One dear friend used to be a NICU nurse. I mentioned to her about him sounding like he has a dry cough. She listened for a moment and told me she didn’t think it was a cough. It sounded more like a grunt, similar to newborn babies. I had a brief flashback to right after he was born. He was taken to the nursery for 14 hours after birth due to a fast heart rate, not maintaining body temperature, and grunting.

Our pediatrician called a few minutes later checking in on Logan. I shared our friends thoughts and was able to put the phone close to Logan for her to hear. She agreed it sounded like grunting and was most likely due to air hunger (difficulty breathing). The oxygen doesn’t make the situation worse or better. From my understanding there is nothing that can “fix” this, so we were given the ok to put him on a 4 hour schedule of morphine. We also added Ativan (anti-anxiety) back in and dropped Gabapentin (nerve pain).

Friday and Saturday were pretty status quo. Logan slept 23+ hours. I struggled with the decision to do an enema on Saturday, but so glad our nurse was here and helped me with it. Our poor baby…sigh. His stomach seemed much better afterwards though. Not so distended. I also started struggling with how quickly everything happened. He was fine of Monday and then has slept since Tuesday. Its just heart breaking. We spoke with our palliative care doctor. It was a rather painful conversation…one I’d rather not relive and hope is wrong :/

Oooo! Something exciting did happen yesterday! Logan was sleeping and Lucas wanted to read to him. We didn’t think much of it since he has been sleeping so much and nothing seems to wake him. So Lucas sits down, starts reading to him and guess who opens their eyes! He wasn’t fully with us, but he did have open eyes looking at the book. Then before Logan and I went to bed (we are camping out on the couch 🙂 ) he opened his eyes again. There wasn’t much emotion behind them, but they were open and the most beautiful color of hazel.

Today was a good day. However, I need to gather my thoughts about it before I post anything. Hopefully after speaking to our Hospice nurse tomorrow I will have more clarity on the situation.
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Monday night decline through now

Monday morning was rough. Monday afternoon was really good! And then came Monday evening…

Logan was really fussy. We aren’t sure why. When we laid him down for bed, he fussed every few minutes. We knew it was going to be a long night ahead. He fussed almost every hour, all night. We resorted to morphine to try and help. Yeah…the sleep only lasted an hour. We tried everything, stopping his feed, burping him, turning on Little Einsteins, etc.  Finally around 9:30am we burped him and what looked like stomach acid came up into the tube. After we got it out, he seemed to rest easier. We thought he was just recovering from the night before, until around 1pm.

We decided to wake him so he would sleep that night. However, he did ever really wake up. He was up for maybe 30 min before falling asleep on me. He didn’t wake up when I moved him to the couch. I hooked him up to his pulse ox so I could go make dinner around 4:30. Logan was still sleeping. He did wake up for about an hour around 5pm then went right back to sleep. Around 8pm he woke up crying. We rushed to administer morphine and reposition him. It took over 45 min to get him comfortable again. He gave back into sleep as I massaged his little foot and toes.

The next hour was the toughest Brett and I have experienced yet. We sat talking about everything in tears. We have done so much more to Logan than we originally planned. We did this together every step of the way and have no regrets. However, we talked about him turning 10 months on Monday and Mothers Day the Sunday after that. We discussed taking the oxygen off of him and starting a schedule of morphine and ativan. Brett has a hard time hearing Logan cry. Its always been that way though. He feels sleeping and comfortable is better than awake and crying. I feel that way too…kinda. Its hard. I never thought it would come to this. I mean, we knew it was somewhat inevitable without a treatment or cure, but I didn’t “think” this day would ever come.

We have talked with our hospice nurse and we are trying to find where something went wrong. He is now considered lethargic 😦 Kind of like last time. We think the Gabapentin may be the cause again. Only this time because of a build up in this body. We are fairly certain it runs through the kidneys and we have noticed the past week he has been dehydrated. We are also trying a new medicine to help with stomach metabolism in hopes it will create easier bowel movements and he will be able to take in more formula. I’m not sure if this will solve the problem, but we have to try.

Logan slept pretty much all day today. He was awake less than an hour total. He is right next to me as I type. He looks peacefully. His heart rate is high and we are suctioning out thin, sticky junk about once every two hours. But his color still looks pretty good and he looks as beautiful as ever. Even with his hair a messy, dirty mess 🙂

A rare Daddy Logan moment <3

A rare Daddy Logan moment ❤

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Rollercoaster- part two

Picking up where I left off…On Sunday Logan was only awake maybe a total of 4 hours. 2 of those was around noon when we did a garden stone with him. He was alert, more alert than Saturday, even though he wasn’t awake much. We talked with our doctors and decided maybe it was the medicine doing this. Especially since it was like he wanted to wake up but just couldn’t. So we took him off the Ativan (anti-anxiety) and lowered his dose of gabbapentin (nerve pain). His heartrate was also very high on Saturday, even while resting. It was still high Sunday as well but now we questioned the role of the medicine. We had a bit more hope compared to Saturday, but we were still very cautious.

Brett stayed home today and yesterday. Yesterday Logan slept until late in the morning but did much better. He was awake a lot more, but started to cry out in the evening. We did get some smiles though!!! We have started to use a pain med around the clock to try and keep him comfortable. Also trying to find a balance with the gabbapentin.

Logan decided to wake up at 1:45am this morning. I turned on Little Einsteins because he was wide awake. He smiled so big! ❤ It made my heart so happy! 2013-04-16 01.39.04

He slept in until 10am again this morning. Its thrown off his feeds a little bit, but he is tolerating them better. He has been awake a couple of times and has given us some smiles. And!!! He let Brett hold him while I ate some lunch!!!!!!!!!!!!!!!! Now, that may not seem like much. But, a little over a week ago, Logan decided no one (and I mean absolutely no one) was allowed to hold or touch him except for me. He is still sleeping more than usual, but his heart rate looks a lot better.

He is still on oxygen and we have had to adjust it almost everyday, but for now he is still sitting at .5 liter. We have come to terms that he will probably not be coming off of it. However, as long as he is still comfortable (and hopefully happy) we are not bothered by it. In the midst of everything, I was in tears talking to our nurse saying how he didn’t seem happy and it was like he wasn’t here. She said we may have traded happy for content and comfortable, but that it was still good. He wasn’t in pain. That thought had never occurred to me. Logan is my happy baby…the thought of him not smiling never crossed my mind, but it happened. Its made me really think about everything.

This morning I got a beautiful smile though 🙂 Not as big as some, but he is still smiling. 2013-04-16 12.03.00

On the part one post, a Facebook comment said it sounds like this is coming from a weary mom. That is absolutely right. I do sleep at a night when he does, but my body must not be getting a deep sleep because I am exhausted. We went from doing ok, to fearing we didn’t have 48 hours, to now being cautiously optimistic he is ok right now and learning to cherish every moment that much more. Brett goes back to work tomorrow as long as the rest of today and tonight goes well. I am nervous because I am so tired and Logan doesn’t want me to leave his side. I’ll have to be sure everything is within arms reach.

Minor progression of the weekend:

Friday afternoon

Friday afternoon

Saturday early morning

Saturday early morning

Saturday mid morning

Saturday mid morning

Sunday - little bit more hand movment

Sunday – little bit more hand movment

The garden stone we did Sunday <3

The garden stone we did Sunday ❤

Thinker pose Monday morning

Thinker pose Monday morning

Rollercoaster – Part one

Well, Thursday was eventful. All day. I posted about the morning scare we had. The rest of the day was ok until around 6pm. Our hospice nurse was coming over to help me figure out how to “unclog” Logan. He hasn’t had a bowel movement in 48 hours so we were wondering if that was contributing to everything. No joke, she walked through the door and Logan vomited through his nose. We spent the next 30 minutes suctioning him. We then found the cough assist wasn’t working. I’m not sure when that happened, but we had a new one delivered that evening. Thankfully, the suctioning helped him to stop coughing. We finally went to sleep about an hour later than usually.

He woke up at 3:30am with a slight fever. I called our hospice nurse to be sure I could give a dose of morphine with a dose of Tylenol. She confirmed I could and he seemed to rest really well until the morning.

Friday doesn’t stand out to me like the rest of the weekend. I remember being worried about him because he started sleeping more. His oxygen levels were all over the place. Late afternoon and we kept encouraging Lucas to sit and watch Little Einsteins with him. His cry had became very weak. I sent a text out in the evening to close friends and family saying he had declined on Thursday and hadn’t made a full recovery.

Saturday is a different story. A good friend stopped by that morning to see him while Brett and Lucas went to a friend’s birthday party. Logan slept over 12 hours. We woke him for a bit, but he went right back to sleep. It was rough after she left. It was like Logan wanted to wake up but just couldn’t. He finally woke around 1pm. He was awake for less than 30 min but I was able to leave the room so Brett could have some alone time with him. We all had this feel of dread that he wasn’t going to be here this time next weekend. He wasn’t happy Logan, he wasn’t really here with us when he was awake. It was so heartbreaking and I think I cried almost the entire day. I didn’t want to post anything in hopes we were wrong.

Saturday night, Logan and I slept on our couch. It has a chaise attachment I picked out for this purpose (thank you Ashley Furniture for have a crazy awesome sale with no interest for 5 years). We slept the entire night. And then he kept sleeping through the morning. 15 hours in total.

Logan just woke up and is cranky. Part two during next nap time

STL Dr Appt & Fun Day

Well, on Wednesday morning we headed up to St Louis for a post op appointment on Logan’s G-tube/mic-button. A piece had broken off Monday and we were concerned it wasn’t sealing right. We were going to see about having it replaced here in Springfield, but our ped’s office couldn’t do it and home nursing couldn’t do it. We weren’t sure about our hospice nurse, but knew a surgeon in town (who we had never heard of) could do it if we had a button. I went to get our button realized we were given the wrong size. It was my mistake not catching it the first time. The correct button was delivered, but I had already called STL to make an appointment. I was tired of the run around and we needed a post op appointment anyways. About 3hours later we found out our hospice nurse was able to change it. We decided to keep the STL appointment and have her do it if/when it happened again.

We left around 9 for a 1:30pm visit. We were going to see if we could drive back home same day since Logan had done so great in all his other car rides. A suitcase was packed just in case though.

The drive wasn’t bad and we ended up making good time, only stopping once to start Logan’s feed. We arrived a little after 12:30 and they got us right in. The surgeon was really impressed with how Logan healed and was really glad to see him. They ended up not changing the button because it was still sealing fine.

Right after that appointment, we visited with our palliative care doctor, Dr R. She told us how impressed she was with Logan. She was expecting him to be much weaker, but said his color looked good and he was still very alert. She changed his medicine just a bit after seeing him.

We left the hospital after we ate, around 3pm. Stopped to get gas and we talked about trying to go to a park or somewhere fun for just a bit. There were really bad storms around, but they had all gone around us in STL and we knew we would hit a bad line coming back home no matter when we left. So the last minute decision was made to go to the zoo. We wanted to take the boys one day when we had more time, but something told me this might be our only chance.

We arrived at 3:30pm and only had 1.5 hours. We rode on the carousel (Logan’s first big one), rode the train two stops, and saw a few animals we don’t have in Springfield including penguins, hyena’s and a rhino. It was almost closing time after we were done with that and we stopped by the gift shop. I collect shot glasses on our trips and they had penguin shot glasses with Lucas & Logan’s name ❤

The ride home was rough. About a mile outside of Sullivan, MO Logan’s oxygen dropped into the 70’s. He was sleeping and wasn’t recovering. We pulled over and I brought him up with me. I’m glad I did because the storm system hit not too long after that. The rest of the ride home was pretty good. Both boys slept, but Logan’s oxygen hovered in the upper 80’s/low 90’s. Logan slept good after we put him in his bed. It was the next morning that brought trouble…

We had a wonderful, wonderful day though. One we will never forget.

At the hospital, looking at the big hot air balloon in the cafeteria area

At the hospital, looking at the big hot air balloon in the cafeteria area

A July BBC family sent Logan this birthday shirt!

A July BBC family sent Logan this birthday shirt!

First big Carousel ride!

First big Carousel ride!

Waiting on the train

Waiting on the train

HaHa I'm in the very front!

HaHa I’m in the very front!

Big smiles <3

Big smiles ❤

Love my boys <3

Love my boys ❤

Sleepy Logan

Sleepy Logan

Steak N Shake for dinner!

Steak N Shake for dinner!

This mornings scare

And boy, what a scare it was. The car ride last night had a rough moment outside of Sullivan, MO. Logan seemed to recover from it and we made it home safe, albeit late. He went right back to sleep after we laid him down in his bed. At 4am he started having issues and was uncomfortable. We gave him his meds and he slept on and off until 9am. At 9:15 he started getting really fussy and I realized he was hungry so I went to get his formula and hook it all up. Less then 5 min later, Logan had an all out meltdown. You could see the beads of sweat on his forehead. He was still on .5ml oxygen that he had to sleep with last night but suddenly his oxygen dropped to 88.

I went in to a different mode. I moved him from his bed onto ours. Since he had been sweating, his lambskin was all wet. I laid him down and turned on Little Einsteins. By this point, he had calmed down. However, he suddenly dropped in front of me. Without thinking I rushed to his oxygen machine and turned his oxygen up by .5 liter. He dropped down to 52 out of no where. He turned grey and very disoriented. I turned him up to 1.5 liter. He would climb back up to the 90’s then drop. While he was doing this, I called our hospice nurse for her to come. I called Brett and he left work immediately. I went to turn his oxygen up a bit more and watched him to see if he changed.

Then the oddest thing happened. I had his entire life flash before my eyes. It felt like I stood there looking at him forever and I couldn’t move. I saw us at the zoo yesterday and how happy he was on the train. I saw his birthday this past weekend and his frosting covered lips. I thought about what we hadn’t done yet, like the garden stone that is in our closet. Then with tears streaming I wondered if he knew how much I loved him. After that thought, my body moved and I went over to him on the bed, moved the laptop just a bit and picked him up to hold him. Within the next 5 min, he stabilized at 98, Brett came home. Logan smiled at him and we just and loved on him. Our hospice nurse arrived not too long after that.

An hour later Logan looked tired but was holding steady. His oxygen hit 100 so we took him down a bit. We were able to wean him back down to .5 liter for his nap. He slept for 3.5 hours! I hooked him up to his feed and he took it well. Slept through the whole 4.5 ounces.

He woke up around 2pm and just now laid back down.

I don’t regret the sudden decision to up his oxygen, even though that went against what Brett and I had originally planned when discussing situations like this. However, Brett agreed with my decision and felt I did the right thing wholeheartedly. That was comforting 🙂

Logan wasn’t ready to go yet. This afternoon after his nap, he looked up and smiled at me with the biggest smile. We danced a bit in the living room (while there is room before our new couch gets here with a special place for me and Logan!) and his smile lifted my spirits. It wasn’t Logan’s time to go yet today. He just had a tiring day yesterday and needed a little help resting. Hoping tomorrow will be better.

I needed to add a happy picture after this post. This is from Logan’s birthday weekend when we went to the zoo last Sunday. He was stylin’ 🙂
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Logan update

Its been another interesting week. I ended up taking Logan to the doctor on Wednesday afternoon. We were concerned he had an ear infection and I wanted to just be double sure. Turns out I was wrong and he did not have an ear infection. Another doctor in our practice saw us and did a viral swab along with sending us for a chest xray. He had a chest x-ray two months ago so the doctor thought it would be good to compare. Logan does not use his lungs to full capacity so the main concern was that some fluid could settle and we wouldn’t be able to hear it until it was bad.

Thankfully the x-ray came back clear and the swab was negative. So we are back to the drawing board on what is causing this. Doctor does not think it is teething. You can see where his teeth will come in, but it isn’t swollen nor is it white like a tooth is getting ready to pop through.

Thursday night Logan slept well. Friday night was rough. The first part of the night was quiet. Right around the time we went to bed, Logan’s oxygen started dipping but then popping back up. After about 30 min of it, he stabilized at 93. At 2am, his pulse ox alarm started going off again. I thought he was deep sleeping but when I checked it, his oxygen was dipping again. I turned the alarm off and watched him intensely for about 5 min. We got an oxygen machine last week, but haven’t needed to use it yet. I was debating whether to use it or not. After about 15 min of wrestling with myself, I decided to turn on the oxygen machine to help him a bit. As soon as I turned the machine on (his cannulas weren’t in yet), his oxygen jumped up and stayed up. I laughed to myself…the first damn time I turn on this machine and he ends up not needing it. I stayed awake until almost 4am between being restless and watching him.

Last night was ok, but then today was rough during nap times. While he was awake, he did pretty good! But everytime he napped, his oxygen dipped. We made the decision right before bed to go ahead and put him on .5 liter oxygen (humidified) so hopefully he could rest good. He stabilized at 98 and feel asleep quickly. Until about 20 min ago when I decided to turn the machine off since he went up to 99. I figured he was past the “rough” period and I could turn it off. Well big mistake because he woke up! It took a bit, but he is hooked up for his feeding and resting now. I know not to do that again…

He has done great with his night feedings the past 3 nights. He has taken in over 350ml during a 10 hour period on 35ml/hr. His secretions have picked up quite a bit. He drools so much! I had to change my shirt 3 times today because he would drools so much on it I couldn’t stand to wear it anymore haha.

I think we slept pretty good last night but I still feel drained. Its getting easier to manage again though.  Our aid is coming several times this week to help out. I’ve pretty much lost hope that Logan will be comfortable enough for me to leave the room. But, she keeps him occupied enough I can pick up in whatever room we are in without having to be holding him or touching him the entire time. Its a nice change of pace and I think he enjoys it a little bit too 😉

And he is awake again… off to help my squishy ❤