Exhausted

Sean wore me out today. He is off his oxygen for most of the day. He needs it on around 6 in the evening. He doesn't want to wear it in public because he doesn't want anyone "to see my tail." That's what he calls the hose behind him. He is also self conscious about anyone seeing his PICC. Isn't that funny that a 3 year old can be that concerned about being different. We went to the doctor this morning and they were all happy to see how well he was doing. He played with Ethan today and they rode bikes and trashed my house until it was time for his 4 pm meds. Sean showed me how he can jump rope with his oxygen tubing. I think he's cured!

For mother's day Aric and Steph got me a lemon tree. It is blooming like crazy. I love it! I used a q tip to cross pollinate as there are no bees in our house and I mist it every day.

Tomorrow is a DCFS court hearing for Jenny and Ryan. Who knows how it will turn out. Jenny told me she was a little worried about what she was going to do if they send the girls home with her tomorrow. Eek, that's an awful thought.

Life is better at home

Sean has fifty feet of oxygen tubing. Can you guess how many things a 3-year-old can wrap 50 feet of tubing around? It's kind of like a puppy on a rope in the yard. Sometimes it's more like 50 feet of Christmas tree lights and Sean is the tree. It's actually funny to watch him have a tantrum on oxygen. I'm not sure why it amuses me. I guess just because he feels well enough to throw a tantrum. After the fourth dose of home antibiotics he finally believed us that it wouldn't hurt. The IV at the hospital always hurt. Antibiotics go better with Reese's peanut butter cups and Sponge Bob while laying on the family room couch.

Antibiotics also go better when they are given by your sister. He has a total of six antibiotic doses a day which equals three and a half hours of antibiotics. I am not working next week but Alika has learned how to access and flush the PICC line and give antibiotics so she can be my back up.

I had this picture on my phone. It was when he was so very sick. It's amazing how fast they can sick and it's wonderful how quickly they can heal!

Saturdays events

Saturday morning we ventured out in the wagon to see Spiderman. They finally took him off droplet precautions and we could leave our roon. Friday night was interesting. Sean and I met the night nurse and then went to sleep. Around 1 am I woke up and a new nurse, a nursing supervisor, a resident, respiratory and lab were all standing over our bed. (Yes, I took an ativan) I looked out in the hall and saw a crash cart. Holy Crap! I reach over and touch Sean and he is breathing so I asked "what's wrong." The new nurse apparently replaced the earlier nurse had come in and watched Sean breathing and noted his respiration's were over 60 and he was retracting and shrugging his shoulders to breath. I am grateful the nurse was observant and concerned enough to call the rapid response team BUT Sean has been doing this all along. Only difference was he had been worse. Because it was Friday night the doctors who had been working with Sean were off service and the new ones that hadn't seen him before.  I put my glasses on checked Sean out and wasn't really concerned. He looked the same if not better. They insisted on doing blood gases, increasing his fluids and his oxygen. This really made Sean angry and he screamed bloody murder. They tried to do a CRP too but couldn't get a vein. I told them to wait and get it after he had a PICC line.  PCMC is funny, every time they do something mean to a kid they give him a stuffed toy. By morning we were lying in a pool of stuffed toys. When the day nurse came in she looked at the toys and said "rough night." Sean now has a hedge hog named pokey and Caterpillar name sticky and an armadillo that I named Streptococcus.

All these tubes make life a little more challenging and Sean is constantly getting tangled up in them. He's learned to use his toes. At least the toes that don't have a pulse oximeter on them.

This is the PICC line team getting ready to put in his line. His nurse couldn't get his IV to work and I was totally bummed that they were going to have to poke him again for an IV just to give meds to start a PICC line and then pull out the IV. I asked if they couldn't give IM ketamine before they started the IV but they said no. The anesthesia nurse was able to salvage his IV long enough to give the meds and get the PICC line in. About five minutes before the PICC line people came the activities people came in the room with a craft cart. Sean LOVES crafts. They gave him a wooden pirate to color. I was laying on the bed with him and he was coloring the pirate. Anesthesia was giving him meds through his IV to put him to sleep and he kept coloring, but the marker was no longer connecting with the pirate. I put the craft on the shelf, kissed him and then we had to leave for the procedure. We went down to the cafeteria and then came back up. It took about 70 minutes. I could hear Sean crying towards the end but it was that I'm on versed and ketamine cry. When they let us back in the room I kissed Sean and he said "where's my pirate?" I handed it to him and he started coloring like he had never stopped. The staff was laughing because the first thing he said when he was waking up and crying was "pirate" and they thought he wanted to be a pirate. Sean's always like that if you promise him a happy meal and he goes to sleep in the car when he wakes up he remembers. If you tell him in the morning he can go to Walmart and get a toy it is the first thing out of his mouth in the morning.

Coloring the pirate with dad after the PICC Line placement.

Frida came up to see Sean today. I got to see her baby, he's a cute little guy. Neighbor Ethan sent up a present and talked to Sean on the phone. Wendy and Emma came by to see him. Emma played in the play room with him and tye dyed a t-shirt. She thought it was so fun she said she wanted to get sick and come to Primaries.

Jenny came up in the evening and played with Sean in the playroom. The playroom is kind of like the "Camp Carnival" of PCMC. Sean had a great time in there. He felt good and had lots more energy. His color is good. I was really hoping they would let us go home on Saturday. I think if Dr Fassly had been there he would have but the new attending said he had to stay another night so they could watch him breath and make sure he could maintain his PO fluids.

Last night we both slept straight through the night. I slept on the pull out bed. That was the first time I hadn't slept in the bed with Sean and he was totally fine. It was a really nice night. Don came in at 7 a.m. and I am now at work. As soon as I get back to the hospital the plan is to go home and meet the home health agency at the house. YIPEE!!!! His CRP was down to 1.9 yesterday and his oxygen need is less that .25 liter.

Tired

It's only 8:00 but I'm headed for bed. I am exhausted!

Sean had a mostly good day. We woke up at 8:30, totally slept through the night. I woke up because I was soaked and smelled like pee. That IV did a number on Sean through the night. My friend Claire brought me lunch on her way to work this morning so I met her in front of the hospital at 8:40. I came right back up and Sean was still asleep. The nurse was getting ready to do vitals so she woke him up. He woke up grumpy! "Why am I all wet?" he asked. I told him I peed on him and he said "no you didn't, I peed on you!" He got that right. His capillary refill was greater than 5 and he looked mottled, he had no color in his lips and his respiration's were still 60. After he got up and moved around in the bed he started to look better. I gave him a bed bath and we changed the sheets. He told me he was hungry and wanted chicken nuggets and french fries. I called room service and they sent nuggets and fries for breakfast. He ate half of them. That was the most he's eaten.

He skyped with cousin Nate while he ate his nuggets.

The attending came by, he's off this weekend so he wanted to make a plan. The plan was to try oral antibiotics and turn off his IV fluids today and see how he did. He got up and used the urinal all day which was good. He took the oral omnicef without a problem. They gave him the clindomycin PO. He spit it across the room and all over my computer. He choked and sputtered and said it was spicy. I took a lick. Holy crap it's vile. Curl your toes, make you hurl vile. And they think he's going to take that four times a day for 14 days. Not going to happen! We have the option of not giving him clindomycin and just using the other antibiotics. It's a gamble because he got better when he went on clindomycin. Coincidence? We have no way of knowing unless we take him off and he gets sick or gets better. The attending Dr Fassl keeps saying "kids that come in as sick as him....." I'm not willing to take the risk.

Don and Alika came in this afternoon. Sean was poopy and he wanted to get out of bed and walk around the room. We got an oxygen extension and took him off all his monitors. I wanted to give him a sink bath by just having him stand next to the sink. He got up and his legs were wobbly and he said he was dizzy. In the time I took to wipe him down and change him he was exhausted and asking to get back in bed. "I'm sick!" he said. We got him back in bed, his saturation's had dropped so we had to increase his oxygen, then he went to sleep. It's a reminder of how fragile he still is.

The tentative plan is a PICC line tomorrow afternoon and then home on antibiotics and oxygen.

Apparently Alika was tired too.

Late update

It's late and I'm tired but I feel compelled to write an update before I forget my thoughts.
I am thankful for my family, for Don, my mom and my kids, my brothers and sisters and nieces and friends. All the kids have been very concerned. AJ and Steph have come up every day, Carter has called. Alika even spent the night with me and Sean at the hospital last night. She said it was easier than staying home worrying about him.

Sean had an alright night last night. He had a couple of half hour coughing fits and they had to turn up his oxygen but other than it wasn't bad. This morning he woke up and was miserable. They had a hard time getting his blood draw this am. It is so strange and sad to me how quickly he has adapted to being sick. "I don't want another poke." He adjust his own oxygen cannula in his nose when it's bothering him and gets frustrated with all the leads and wires. He put his oxygen tubing behind his head instead of under his neck because it's more comfortable. He has learned so fast. He can't make it to the bathroom in time because by the time I've unhooked enough equipment to get him to the bathroom he's already going. Mostly he's been to sick to get out of bed. Tonight he wanted to use the toilet so I had him pee in a urinal he thought that was kind of cool.

I've thought about having someone give Sean a blessing. It will come as no surprise that I have had many offers from family and friends but have just said that I would think about it. This morning I was "thinking about it" but didn't do anything about it.

Around 9 this morning we took Sean down to x-ray in the wagon. He thought that was different and almost smiled. I saw Lou Borgenict one of my pediatricians from SLRMC on the way. After the X-ray Sean was very upset and I was carrying him. We were walking down the hall and I thought I saw David (Ryder's dad) pass in front of me. I said "David" and he didn't turn around but he paused. I thought maybe it wasn't really him but I said "David" again and he turned around and looked confused, who is that crazed looking woman holding a sick kid and why is she talking to me?  Then he realized who I was and came over and asked what was wrong. I told him Sean was really sick and asked if he would come up and some point and give him a blessing and he said he would come right now. He walked up to Sean's room with us and gave him a blessing. All who know me know I am not an overly religious person and I don't go to church but some of those Mormon faiths remain and blessings is one of them I don't know why I asked David, it was like the words came out of my mouth before my brain even thought them. He gave a very special blessing that I don't think anyone else could have given because he really knows our story. It meant a lot to me and was very special. After he left Alika asked if he was a minister and I said no, he just a Mormon dude, an Elder. (Could be a high priest I have no idea). Alika asked "Mormons just carry around oil in their pockets in case someone comes up and says "give me a blessing?" I said, pretty much especially ones that work in hospitals. His blessing was more than just about Sean's health it was about Sean's life and we needed that.

Sean has liked having Alika around in the hospital. Tonight after everyone left and it was just me and him he was very upset and wanted to go home. He is well enough to miss home before he was too sick to care where he was. Tonight his IV infiltrated and the IV team had to start a new one. It took the four sticks and Sean was screaming "no more pokes, your hurting me." I was holding him and it made me cry. Don was sitting in a chair crying. Yesterday when the doctor was telling me how sick he was and that he could have died I was crying. I was holding Sean and he had his face in my neck and I was sobbing. Alika was sitting in a chair sobbing. Sean said "STOP IT!" I said "stop what?" and he said going "hu hu hu."(Making crying noises). He said "you're making me sicker." That made me laugh but he told me I couldn't do that either.

Jenny and Ryan have both been up. They were appropriate and pleasant. They smelled so bad though. Jenny came up yesterday with her friend Crisitn and her mother who is a heroin addict. They were so pitiful. So ignorant, and smelly but also very concerned and sincere. I don't mean to sound so critical of them but I was just thinking thank God that they are not Sean's life. It was the same when Ryan came. I appreciate the love and concern they feel for Sean but am glad he lives in our world and only "See's" there's and it's not his. I know I'm not articulating this well but I felt like I was watching a movie of parallel lives and seeing what Sean's life could be or would be. I'm not saying we are the perfect family because I know we are not but I really believe we are the perfect family for Sean. He is such a member of our family that thinking about him dying is just intolerable. I am so thankful that he has turned a good corner today and especially this evening.

My final picture for the evening is Sean actually smiling!!!! Medicine is wonderful. A little boy who 48 hours ago was in septic shock and they didn't know if he would live is already smiling. Thank you clindamycin and claforin. And especially thank you to the doctors, nurses and tech's at Primary Children's they have been wonderful. On that note the nurse in the ER said "you look familiar." She was one of my students over 10 years ago. Four of our nurses on the floor are my former students. I feel a sense of pride in having hopefully made a positive impact on all these terrific nurses who are taking care of my biscuit.

Ok so that wasn't my final picture of the night. This one is.
This morning I was listening to the doctors rounding out in the hall and talking about Sean. They were discussing all the possible differential diagnosis for bilateral multi focal pneumonia's, legionnaires disease, mycoplasma. I wanted to yell out "hey don't forget the pneumonic plague." His x-ray looked considerably worse today than yesterday but the attending Dr. Fassl who is wonderful said that he wasn't concerned with the CXR so much as how he was acting and his WBC and CRP. The CRP had cut in half so they don't know if it's the Clindamycin that made the difference or it was a coincidence. I'm not willing to take the risk that it was a coincidence and stop it and neither is anyone else. The question now is when will his oxygen need be decreased enough that we can take home with or without oxygen and what medications do we take him home on and do we do them PO or IV. Decisions, decisions.
I don't know if anyone is really reading all the way through this but if you are thank you for your concern and prayers you are all appreciated.

Strep A pneumonia

Strep A pneumonia is the diagnosis. They changed antibiotics to clindamycin, cefoxin, and he is still on zithromax. They stopped the Rocephin. They wanted to go with something more powerful that they could give more often. Today's CXR showed a significant infiltrate in the left middle lobe and some infiltrates in the right lobe so it is multi focal pneumonia. He also has fluid building up in the base of his left lung. If it continues they may have to put in a chest tube. Depending on the labs tomorrow he may need a PICC line and feeding tube as well. It's all so frightening.

The doctor told us he was in septic shock yesterday and that if we had waited 12 hours to bring him in he would be dead. That's a punch to the gut. One of the physicians from Primaries died of Strep A pneumonia a couple of months ago so all the doctors here are very scared of the disease. The attending said it makes him very aggressive and worried and that strep A pneumonia is one of the conditions pediatricians live in fear of missing. They send a sick kid home tell the parents it's a cold and they come in the next day in septic shock in the ICU.

Gee, I was so happy getting his room all set up and now here we are at Primaries. Life can turn on a dime. I'm just hoping and praying he gets well soon. I'm grateful for all the doctors and nurses at PCMC and how attentive they have been to Sean's needs.

My mom is having a better day today. Marjie called her last night and David apologized to her and had a tear in his eye when he did it.
 

My very sick biscuit

Sean's been sick since Friday night and it went from bad to worse and now we are at PCMC. Talk about a crappy day. Sean's sick and I went a little mental yesterday. I was worried sick about Sean, the basement flooded again! Mom was freaking out because no one was fixing her basement. I called Catherine and told her to get a plumber out to fix the sump pump. Catherine got someone out there right away but mom needed help cleaning up and Don and I were at the hospital. AJ sucked up the water and took all the wet clothes up to the washer. Then he and Steph came to the hospital  Mom then asked David to clean her bath tub and he said no, he didn't have time because he had to do his homework. I feel sure that kid is on drugs again and I don't even know if I have the energy to care. He's with his mom all the time and no doubt they are doing whatever they do. It's like fighting an uphill battle with the other parent pushing the kid back down the hill as fast as you push him up.
Now this excuse of not helping could be humorous coming from a kid whose flunking out of school except I am not finding any humor. Mom was downstairs crying that no one was helping her. I went upstairs and found David in his filthy room eating and watching TV. I went CRAZY! I called him every name in the book and told him to get down and clean Grandma's bathroom. I don't even remember everything I yelled I was so outraged that he had the audacity to be so rude to his grandmother. There are no words to describe. How dare he talk that way to her with all she has done for his rude teenager self. Then I went back downstairs and mom started crying and telling me no one would believe her when she said her sump pump wouldn't work. I'm crying as I write this because I am ashamed to say I went off on my mother. I told her I didn't care about her stupid sump pump all I cared about was the fact that Sean has pneumonia he's breathing 100 times a minute and he could die. That outbreak of course caused mom to cry even more because she too is equally worried about Sean but was just expressing her stress in a different way. I told her I was sorry and that I loved her and then came back to the hospital. It was a really rough evening. I got back to the hospital and Alika was here too. She texted David and told him she was ashamed to call him her brother. I also called Jenny because I felt obligated to tell her that Sean was in the hospital. She then started freaking out and texting Ryan. So much drama when all I should be doing is worrying about biscuit. Jenny and Ryan just give me anxiety. I brought my ativan back to the hospital with me and I took not one but two!

Back to the real part of this story. Sean got sick on Friday evening. He told me he had a fever. I checked and it was only 99 so I didn't give him any medicine. In the middle of the night he woke up and it was 102 so we started ibuprofen. I called Don when he was swimming at 6 am and had him bring home some different flavored Tylenol and ibuprofen. Saturday he felt good when his fever was down and he played with Ethan all day. They even rode bikes.

Sunday he still had a fever but wasn't throwing up. We went up to the plane hanger and he played outside for a while and was not to bad. He slept good Sunday night. On Monday I went to work at noon and Alika stayed home with Sean. I gave him ibuprofen right before I left and told her he should be good until I got home at 6:30. When I got home he was SICK. His temp was 104.7. I gave him Tylenol and Advil and he started feeling better. He ate a piece of jelly toast and some ice cream then he went to bed. I slept with him in his room until about 3 am when he wanted to go into our room. I was giving him Tylenol and Advil every 3 hours but his fever was still high. About 3 am he started coughing the dry, respiratory distress cough. Don was swimming at 6 am and texted me and said make an appointment for Sean. I laid there and looked at him and his color wasn't good and he was coughing and breathing fast AND I couldn't get his fever down. I have a pulse oximeter at home. I put it on and his oxygen saturation were in the 70s and 80s. I was debating ER or doctors office. (I dont' know why because I knew how sick he was, just wishful thinking that I could keep him out of the hospital.) I called the doctors office and they said bring him in now. We got to the office, they put him on oxygen, the doctor came in and said you have to go to PCMC. He asked if we wanted and ambulance I Sid no we would just borrow an oxygen tank and drive him up our selves and we did. We were in the ER a couple of hours waiting for a room. They had him on oxygen, started and IV, drew blood, blood cultures blood gases and started IV rocephin and zithromycin. Eventually we got up to a room. In the ER there were so many doctors, respiratory people and nurses in the room and one point Sean woke up and they were gone and he said "where's the doctor, I'm SICK!"



I love my biscuit. Hopefully he will get well fast!



Aric and Steph's place

I think we started working on the basement in March and it's finally done! New tile, carpet, paint, a kitchenette. Steph is happy to not be doing her dishes in the bathroom sink. Nothing like not having a kitchen sink to make you grateful for the kitchen sink.

Their guest room.

AJ and Steph's bedroom

Their bathroom

The front entrance.

The dining room and pantry.

More dining/pantry room.

Kitchenette by Don and Ikea.

More kitchen counter space. Not bad for a converted bathroom!

It has an over the sink light, and garbage disposal. Lots of storage for a little space. They have a hot plate, counter top oven, microwave and assorted other appliances so they are equipped to cook just about anything except a Thanksgiving turkey. The good news is they don't have Thanksgiving in Costa Rica and Steph doesn't like turkey!

An awesome, cool room for Sean

I wanted Sean to have a colorful, fun room. Unfortunately, I am unable to match colors, can't paint worth crap and have no artistic ability. This makes the chances of me making a cool room for Sean somewhere between slim and none. Enter Steph! She can match colors, likes to paint, is very artistic AND because she can't work right now she has time!!! How is that for great! Steph picks the paint, I buy the paint, Steph does all the work. My kind of room redesign. 

Sean thought this was "awesome and cool." He told me I didn't have a cool room like him. He's right.

AJ hanging out on Sean's bed, studying Spanish and watching Steph work.

Steph painting closet doors. She used paint from the Disney collection. It is very bright and cheerful.

So much work in those doors. Steph did a fantastic job and I love it. Sean does too. Now we have to wait for the carpet and then we will put some Ikea furniture in there and it will be done.



Sean was sick again this weekend. It started Friday night with a fever. He has been getting such high fevers. He learned two new words on Saturday. Curdled as in "the milk I threw up was curdled" and uvula,"Sponge Bob has a uvula and so do I." He played with Ethan, I mean Spider man for a couple of hours on Saturday even though he was sick. Superman took a minute to check Spider man's temperature. They are very nice Super Heros.



This morning we went to Don's hanger in Mountain Green to take the wings of his plane up so he can work on getting it put back together. He's taking flying lessons on Tuesdays.

Sean playing at the hanger. Don's plane is sharing a hanger with two other planes.





Spring has finally sprung

The weather was perfect today so we played outside. Ryan texted me last week and wanted to see Sean. I texted him and told him Sunday at Liberty park at 10. He said he didn't have his car anymore. He texted at 9:30 and asked where at the park to meet. I said the "big toy." A few minutes before 10 he texted and wanted to switch to a park right next to his house. (Liberty is four blocks away.) I ignored his text. He showed up 45 minutes late. (Lanette said he is only seeing the girls 30 minutes a week and last week he was 20 minutes late). He came without his skateboard. I asked where it was and he said "I forgot it." His car must have gotten towed or repoed and had his board in it. Jenny was supposed to meet with the girls therapist on Thursday. She called me on Friday and told me the therapist had gotten the days mixed up and wasn't there when she showed up. (I'm sure that's what happened.) Ryan and Sean played together for an hour at the park and Sean enjoyed it. Don, Sean and I went to lunch afterwards

We took our lunch scraps to Sugar House Park to feed the ducks (and seagulls). What's wrong with this picture? The park bench is in the pond! The pond is overfull with all the spring run off. The birds liked the french fries Sean threw.



The waterfall at the Sugar House Park is flowing fast. The last time we were there you could walk across the stream, not today.

Reaching for the stars. I was laying in Sean's bed looking at his disorganized unattractive room and got a wild hair. I've ordered new carpet. Steph picked out the paint and is going to start painting tomorrow. Sean wanted his two favorite colors, red and blue. We will see how it turns out! After it's painted and carpeted we are getting new Ikea storage units. Hopefully it will be organized and look good. Don's not overly happy because I am starting a new project before the last one is complete! The basement is looking great and almost finished.

Sean moved up to the four year old class at school. I am amazed at how much the kids learn. The teachers keep telling me how well Sean is adjusting. He loves it. He's learning to read! I was worried because he's not potty trained and all of the other kids in the 4 year old class are. Every where we went Sean would tell us when he needed to go to the bathroom and he only had one accident. I guess he is potty trained. Nah, I can't call it trained because we never trained him. We are too old and tired for potty drama so he just decided on his own to start using the potty. It cracks me up. He is so proud of himself that he will call me in to the bathroom to watch him pee. I am glad the school was able to recognize that Sean had outgrown the 3 year old class. It is fun to watch him expand in the new class. He is such a little sponge and just learning all sorts of things.

Sidewalk Chalk

We went to the sidewalk chalk festival on Main Street yesterday. I liked this picture it made me think of my dad because he always loved Hershey's kisses.

The artist did a really good job.

Not a big surprise but Sean and Ethan's favorite piece was the Incredible Hulk.

Johnny Depp for all you Pirate lovers.

Tangled. It was cold, rainy and windy while we were out walking. Sean hates the wind so we didn't see everything. We went to Baskin Robins for ice cream afterward.

Chipmunk Face

Alika got her wisdom teeth pulled on Friday. She is a serious chipmunk face. Only the right side of her face is swollen and hurts. She is doing really well but still hurts.  She has been the queen of mushy food this weekend.

Sean got a haircut by someone other than Alika. Weird, huh. The lady put red gel in his hair and he did not like it one bit and made her wash it out. Alika said she would have been upset if he had let her do it because he never lets her put gel in his hair. If you do anything different to Sean's hair he gets upset and says "that's not my hair!"