Paediatrician Appointment

We went to Kaitlyn's Paediatrician appointment today. Kaitlyn made out just fine. She choked on secretions while in the doctor's office, but otherwise it was a good trip out. She absolutely loves getting out in the van. She sat in her Max EasyS while in the van today. It's the first time that we haven't laid her down with her E-Z On vest. Not only did she travel well, she loved being up so high to see out the windows. She made all kinds of happy noises, wouldn't be quiet, and wouldn't stop laughing....so she got the hiccups! She is such a funny good natured kid, full of spunk and life!

She was 11.8 kgs (26 lbs) and (86 cm) 34 inches long. She's a tall chunky monkey. She hasn't gained a lot of weight over the past few months. I think she is starting to level out a bit. She looks really healthy though.

Her cold....well she still has it, but the last two days haven't been too bad. She is mostly just got extra junk in her nose and throat in the morning. As the day goes on she is not too bad, and then gets a little worse around bedtime. Since she isn't running a fever, her sats are fine, and she doesn't even really look sick, we will not start an antibiotic at this time. I've had a bit of post nasal drip myself, with only a slightly sore throat, so I think that this is all just a mild cold running through the house. We decided to go ahead and give Kaitlyn her flu shot today. So far tonight her heart rate is really good, better than it's been, and sats are normal. She probably just needed to get out of the house.

Kaitlyn needs to go for blood work in the next little while. We are going to have her B12 and folate levels checked. She has larger than normal red blood cells, but no anemia (thank goodness). The rest of her blood work we had done the last time looks good.

Dr. Bach is giving a seminar here in Halifax tomorrow at 8:00am, and we were invited to go very last minute. (Late this afternoon in fact). Unfortunately we will be unable to go. We have nobody to take care of our boys, Tim has to work (meetings that he cannot cancel), and there is nobody else that can take care of Kaitlyn. I would take her with me, but the seminar is not specifically SMA related, and I wouldn't want anyone to be annoyed at me for suctioning every few minutes the entire seminar. But what I wouldn't give to meet the man responsible for my daughter living as long as she has. I say him specifically as it was his protocol and research that we found first in our efforts to find ways to improve the quality of our daughter's life.

Confused

Now I'm confused. Last night was just awful. I was up with Kaitlyn four times coughing her, and Tim was up with her twice for suctioning. She was really wet and we were getting out some pretty thick junk from her nose. We have an appointment for the pediatrician tomorrow so we will decide then whether or not to start an antibiotic. I am also dreading what kind of a night we will have tonight. I can go one or two nights on next to no sleep, but anything more and I start to "malfunction". Especially since I have not only Kaitlyn full-time but my two boys as well. We only have a nurse for two hours twice a week for a total of four hours! Not nearly enough. Thankfully this cold or sinus thing(whatever it is) has not affected her sats, although last night and today I have seen her sit at 98% and even dip to 97% for a bit. While these numbers are excellent they are not normal for Kaitlyn.

My girl and me yesterday. She was a little cranky today having missed all that sleep last night.

Better Day

Well we had a better day today. It started out a little rough. We finished our first round of coughs and I was getting ready to lift Kaitlyn out of her crib when she started coughing. She couldn't get her breath the coughing was so intense. I suctioned her really well and then grabbed the cough-assist I got three coughs and a mouthful of yuck, suctioned and got a couple more coughs. When I got her mouth clear and she could breathe again I suctioned her nose and got tons of stuff! It just kept rolling out of her poor nose. When I couldn't get anymore out through her nose I coughed her again and didn't get much so we started our day as normal. The funny thing through this whole cold is that her sats have been fantastic 98-100% all the time. She had one or two little coughs through the day, but nothing serious. It didn't seem like I was suctioning as much today. Hopefully we have seen the worst of this cold and thankfully it has been really mild! The boys are both fine. They still have a bit of a dry cough, and Alexander's nose is still a little wet but I don't think I wiped it as much today.

Lots of Suctioning

Kaitlyn is still sick. She and Alexander are hit the hardest this time. Still no fevers and her sats are normal 99-100%, but her heart rate is still up 20-30 bpm. Owen was a little worse today, but they all still just have runny noses. Alexander started with a bit of a cough today, and is coughing a bit tonight since going to bed. I am really hoping that this cold stays in the head. The last chest cold put Kaitlyn in the hospital for two weeks. I really would rather not have a repeat of that, she narrowly missed intubation. I am on the fence with the antibiotic, she just finished a full round of Cipro. for her aspiration. It takes a lot out of her being on antibiotics, and she has been on them so often over the past few months. So far her secretions are thicker than normal and I am having to suction her every few minutes all day long. She is better at night on bi-pap. But what I am suctioning isn't colored, I'm inclined to wait another day or two and decide if she isn't getting any better.

We hope that Lizzy's Nina can soon get some sleep. Waking to alarms all night is no fun. I hope you can figure out how to help Lizzy get used to this new circuit(new mask and new Pap...no fun)! We are also hoping that Jacob's MaMa is feeling better tomorrow. Having the flu sucks!

My girl's happy as long as she has "Dora Dora....uh oh!" (I swear that's all she knows how to say!)

Another Cold

Well, we are dealing with another cold. I really hope this doesn't become a monthly occurrence. Kaitlyn woke up this morning with increased secretions which have gotten much worse throughout the day. She went to bed at 8:00pm with a fight. The only time she ever fights bed is when she is feeling poorly. She usually wants somebody to stay with her, preferably on a shoulder. I guess it's where she feels the safest. I've already been down to get her up once and hold her on my shoulder. It's the only way I could get her to calm down. She is really wet tonight. I guess there won't be any sleep for us tonight, as Kaitlyn sleeps in our room.

So far she is afebrile and there is nothing in her chest. She sounds really clear. I hope that it stays in her head like the last time. The boys aren't too bad, Owen is a little whiny and quick to cry(which usually means he's not feeling 100%) and Alexander's nose is running and he is still breathing through his mouth. This is awful cause he can't suck his thumb very well. He's pretty fussy too, poor little guy. Hopefully we'll have a relatively quiet night so that they can all get some much needed rest.

Sigh!

Sigh! Kaitlyn started this afternoon with thicker increased secretions. She was awake quite a bit through the night last night. I didn't think much of it last night, as it is fairly common for her to have a bad night now and then. Now I'm wondering if she wasn't feeling a little off. Alexander went to bed quite snotty, and Owen was just a little warm and whiny. Well, we'll see what the morning brings. Kaitlyn's sats and heart rate were excellent going to bed, so perhaps it won't develop into much.

Mouth Breathers!

Both my boys seem to have a little bug. Owen has been sneezing up a storm the past two days. He has had a dry cough also. Now today Alexander has had a stuffy nose, and he is breathing through his mouth. Poor little guy! He's a thumb sucker....he has to pause every few seconds for air. They seem fine other than these minor symptoms, but boy do I cringe everytime one of them sneezes. I can't help but think, oh boy...here we go again! Hopefully this won't develop into anything much, and will bypass Kaitlyn.

Bloodwork and Slings

We've had a few quiet days around here. Kaitlyn has been enjoying some play with slings. We have never set Kaitlyn up in slings before. She really seems to love it. She has always had some movement in her arms, and minimal movement in her legs, but she is enjoying the freedom of movement that the slings offer. She can really kick those legs now, she sort of looks like a little frog laying on its back. She is tickled when she can swing her legs far enough to "click" her heels together.

We have finished our round of antibiotics from her aspiration. She seems not to have suffered any set backs from this whole episode, for which we are very thankful. We got a call from our pediatrician at the beginning of the week. She says that Kaitlyn's recent blood work shows larger than normal red blood cells. I find this a little worrisome, as this has happened before, and in August when she had to go for emergency surgery she needed a transfusion of blood and platelets. I didn't really question this too much at the time I guess we were just so concerned about pulling through the surgery and getting her home and figuring out a whole new way of feeding our daughter.....etc., etc. Now when I look back I should have questioned why her platelets and blood were low. She had been really healthy before her J-tube blocked.

We have an appointment with our pediatrician in another week, so I guess we'll discuss a plan of action at that time.

Alexander has been really funny lately. He wants to be just like big brother. The other day Owen come home with a necklace he had made at nursery school. Alexander wanted one too, so I made him a necklace with some old buttons, and he was so proud to be just like brother.



Not sure what's on Alexander's face....we're going through a dipping faze.

Wheelchair Trial

Kaitlyn had her wheel chair trial today. She tolerated sitting up very well. We are trialing a wheelchair through our local children's hospital. You can tell that they haven't dealt with children like Kaitlyn before. It is soooo frustrating. The wheelchair rep. doesn't carry demo chairs and pieces. He has a base for us to trial, but the seating and joystick are posing a problem. The joystick especially is not working out. They keep trying to mount the joystick in the center but they don't even have an arm to put it on. They say when they find something that she can use then they will know what to order, and request for funding.

This makes me a little upset because I don't see how Kaitlyn can even learn how to drive without the proper set-up. She is very interested in grabbing the joystick and spinning the chair in circles. She thinks that it is funny when the chair moves, but she cannot make the chair go in all directions because she can't move her hand in the required positions. I have shown them some things that have worked for other SMA children, but they are more interested in trying to make what they have work.

Kaitlyn enjoyed the afternoon out of the house. She loves going in the van, and often asks "Go..car-car". Here's a pic of her on the way home today watching, what else, Dora!

Update

Kaitlyn has been doing well the last two days. Her secretions are increased and thicker than normal. My biggest concern is her pseudomonas. We have been watching her extra close, and are doing extra treatments. Tomorrow I will try to get in touch with our pediatrician. We have started an antibiotic just to be safe. Her fever only ever spiked that once and after one dose of tylenol never came back. I think that we were lucky and managed to get out what she aspirated. It is very unlikely that she aspirated anything more than her own secretions. There was no indication that she aspirated formula.

We are supposed to go for a wheelchair trial again tomorrow. It's the first one in a month! I think we'll go unless there are any major changes in Kaitlyn. So far she hasn't needed any extra time on bi-pap, her sats are fantastic (98-100%) just the increase in secretions. She may not tolerate any length of time sitting up tomorrow, but if she can just tolerate it long enough to check the adaptations they were supposed to have made then it will be a productive appointment. This chair would only be a loaner, but it will let her figure it out enough to get funding for a chair of her own. We are very anxious to get Kaitlyn moving.

Aspiration

Kaitlyn aspirated something very early this morning. Tim woke up when he heard Kaitlyn struggling with secretions. When he went over to her he said that she had a mouthful. She aspirated some of the secretions and her sats began dropping really fast. She only went down into the low 80's, but it was still pretty scary. It took several rounds of coughing to keep her sats from dropping further than mid-80's. I finally fumbled the O2 tank on, and we bled O2 through the cough-assist for a few more coughs. This really does the trick when she is dropping fast. She finally came back up to high 80's low 90's, but needed a little rest from coughing so much. Tim placed her in postural drainage and put her back on her bi-pap. She was satting 93-94 at this time. I started some chest percussions to help move secretions. With a few minutes rest and lots of suctioning, I coughed Kaitlyn again. She seemed a little better, satting 94-95 off bi-pap.

I put her back on bi-pap to sleep the rest of the night. I checked her temp. before crawling back to bed myself and it was 36.8 which is perfect for Kaitlyn. When she got up this morning she was satting 98 on bi-pap. She did really well through her first set of coughs, chest physio, and more coughs. I got her out of her crib, washed and dressed the same as always. She is maintaining sats of about 95% off bi-pap. Her heart rate is elevated and her temp. was up to 39.2 by 9:30am. We tried to call our pediatrician, but she didn't answer the page, so we got the on-call pediatrician at our local hospital. She has called in an antibiotic for Kaitlyn, so we will start that as soon as it's available.

Couch Play

The kids were playing on the couch tonight. I just thought that I would share the pics. Kaitlyn loves sitting up on the couch like a big girl. Owen was trying to play cars with her, but as you can see she was more interested in her precious piece of plastic! She has taken a shine lately to plastic from O2 probes, syringe wrappers, and such. She can't get it into her mouth, so we let her crinkle it in her fingers. I guess she's in love with the sounds it makes! Take her plastic away and she crys, so she wins! She even takes it to bed with her!

Crazy Hair

Kaitlyn has been doing pretty well the last few days. We have had short spells of sitting up...yay! I was reading the other day that symptoms of hayfever can happen while using Enoxaparin. Kaitlyn has been receiving enoxaparin injections for the past month for blood clots in the groin of both legs. I hope that she can adjust to the increase in secretions.

She was having an absolute BLAST tonight chasing brothers with Daddy. Tim carried her and hollered at the boys and everybody was running up and down the halls. Lots of noise, bouncing and smiles. Tim noticed how long Kaitlyn's hair is getting. I can't believe how fast the children grow! Our oldest boy, Owen, will be 4 years old November 14th and the Twins will be 2 years old November 30th.