Saturday, August 31, 2013

Goodbye Summer, Hello Fall

It's never ceases to amaze me how fast time goes by. Abby is getting ready to go into senior kindergarten and Lochlan is one year away from starting school. During the past few months, I joined a few support groups for preemie and micro preemies to offer my support for those that are starting out on this emotional, crazy journey. I continue to be reminded just how far Lochlan has come and all that we went through. Not that I forget, but I don't let that define him. I never have. He has proven time and time again his super strength and determination.

These days, Lochlan is a happy, healthy three year old that has surprised so many with what he can do. Not me. He is such a joy to be around. He has the best personality - he's funny, polite, loving, energetic, cute, happy, and just full of life. He also is very particular about his clothes, doesn't like to sleep with a blanket or a sheet on, sticks up for himself when his sister tries to boss him around, loves trucks, tractors and diggers, Spiderman and other superheroes, occasionally has a meltdown, pushes up his pants legs and sleeves, wants to be Superman for Halloween, loves to dance and sing, and go to the park and splash pad, finally mastered his bike with training wheels this summer, and is one of the most amazing boys you'll ever meet.

Now that summer is winding down and fall is fast approaching in and with it - cold and flu season, I am a little nervous about his health.  I want so bad to protect him and keep him healthy. Who doesn't want that for their child?! For him, his immunity still is not like that of other three year olds. We intend to do our best to ward off any sickness so that he doesn't not need to hospitalized this winter. Twice was enough last winter. His doctor mentioned trying to get him qualified for a special shot that would offer extra protection - gives him extra antibodies I believe. It's different from the RSV shot but he still needs to quality for it. Her argument (and ours) is that is costs way more to look after him in the hospital than it would to get him this shot. (He's been hospitalized every year for RSV/Pneumonia) I haven't heard anything yet so I will be calling her this week to followup. We will also be starting his puffer again starting tomorrow to help get through the cold/flu season. My plan is to also begin essential oil treatments. Friends of ours use them and have amazing results. Thieves, Purification, Peppermint Oil, Lemon Oil and a few others will be our best friends!

Loch recently had a followup appointment with the ear, nose, and throat doctor. Everything is great. There is no need to surgery!!! He had been following him because he consistently had fluid in his left ear but I'm happy to report it has finally drained! No ear tubes needed. No need to remove his adenoids or tonsils at this time either. There is no followup appointment scheduled. If we notice anything or concerned about anything, we are to call for an appointment. How amazing is that!?

In November he will return for a routine checkup for his eyes. Which the last time were given a thumbs up. So incredible. 

So that's where we are at in terms of his medical care. Fun wise, we enjoyed our first family camping adventures this summer. It was so awesome to share with one another. It has really been a fantastic summer. Excited for what's to come.

I will leave you with a note I read this morning that was posted to one of the support groups. It comes from the Peek a Boo ICU website. Because I did not write it, please click the link to read it. It brought tears to my eyes.











Sunday, May 5, 2013

Three years ago

It was this exact moment (9:58pm) three years ago today that I got up my pprom pregnant body from watching American Idol to go to the washroom - only to discover the umbilical cord had prolapsed.

Our already scared, freaking out minds kicked into over-over drive and off we raced to the hospital. I remember that we were already in the car about to pull out of the parking spot when my best friend came to watch Abby. I remember saying and thinking, "I cannot sit down and cut off the blood and oxygen." Then I half hipped it on the what seemed like a long drive to the hospital. (We only lived about 10-15 minutes away)

We got there and it was all sort of a blur. Lots of people coming and going.
Then being whisked to the ER for an emergency c-section.

I don't remember much else. It's all very foggy. I remember being in and out of consciousness in the recovery room. But I didn't really grasp what was happening. I just remember praying.

...I didn't intend to write a post reliving moments from that day but I just started writing.

Lochlan had an amazing birthday today. I'm so very tired right now and will write about it and post pictures soon.

Wednesday, April 3, 2013

Recovering

Lochlan is on the mend! We are just waiting on some paper work and then we are bustin' outta here!!!! He is feeling much, much better. I saw his chest x-ray and it was crazy!! I can't believe how much of his lung the pneumonia took up. Poor guy was working out of a lung and a half! It was a massive pneumonia.
The right x-ray is from his jan/feb stint with pneumonia. The one on the left is this round.



Yesterday, he still required a whiff of oxygen - his lungs just hadn't recovered. But he was feeling so much better. He was up playing and having a good time and back to his regular chatty self. (still don't know where he gets that from!)

The nurses or maybe child life services found a really cool pirate ship that Loch absolutely loved. I think we have an idea for his birthday present! We had a blast playing with it last night.


Finally he was able to have a bath last night. He was getting pretty rough looking and a bit stinky too! Although who wouldn't really?!  While the nurse was flushing his IV Lochlan complained of it hurting. He ended up having it  taken out after his bath because it was becoming red and puffy. (not good) The team agreed to switch him to oral antibiotics thankfully so he didn't need to have another IV put in. *sigh of BIG relief*



That sort of got the ball rolling. With the IV out he was feeling much better and also after having the bath and being all clean and renewed he was super happy. It took a long time for him to settle for bed. I think he finally got to sleep just after 10pm. We had read stories, brushed teeth and said a prayer just after 9 so it still took him that long to fall asleep. He was pretty wound up. He'd also had a pretty long nap and had only been awake since 4:45pm!

The nurse ended up coming in every 2 hours last night to check on him and finally tried him off of the oxygen around 10 or so. I can't remember. I just remember waking up suddenly and jumping out of bed thinking he wasn't breathing. Once I settled myself and my nerves I realized that nope he was just fine. The nurse came in shortly after and checked his sats and he was doing well. (95% I think)

So he slept all night without the oxygen turned on!!! This morning he woke up nice and early (considering he went to bed so late) at 7am. (normally that's his wake up time but this morning it felt extra early) His nose prongs were half off his nose so I just took it right off. (I double checked to make sure there wasn't any oxygen coming out of it.)

It's been a great morning! We played some more with the pirate ship, he had a great breakfast and looked out the window quite a bit. It was super cute when he first looked out the window - he said "Whoah - it's the world!"

It was so nice to see him so excited and happy and hear him belly laugh and just be silly.

Doctor Moore and the team came in and she made a comment about how I was already packed and ready to go! (yep, I'd started at 8am!!!) She noted that we'd done this so often that I just knew when we would be able to go home.

And I was right! He was discharged!!! His O2 was sat'ing at 97%  Then we had to wait for the doctors to finish rounds and get the paperwork filled out. Lochlan was not too keen on having to wait. He was very ready and anxious to go! (as was mommy!)

Finally we "hit the road,  Jack!" Made a pit stop to drop off his prescription (he'll have to finish his antibiotics for the next 6 days and take his Ventolin as needed) and headed home. He is super happy to be home and is now napping in his bed.

Dr. Moore said that because she saw him in the hospital she won't need to follow up until June. She wants him to remain on the Alvesco puffer (one puff daily) to help with the inflammation of his lungs to help him recover.  Then he'll be off the puffers over the summer and most likely be back on it late fall as the cold/flu season approaches.

It's tough sometimes. He has BPD (Bronchial Pulmonary Dysplasia) His lungs are inflamed and scarred due to his prematurity and having underdeveloped lungs and being on the ventilator for so long.  He has no reserve when he does get sick. A "normal" kid would likely sneeze and cough for a few days. Because he has no reserve he gets pummeled and needs help getting his oxygen saturation up. As he gets older, his lungs will get stronger but it's just something we are going to have be prepared to deal with. We will try everything we can to reduce exposure to germs - wash hands and disinfect toys and our house and vacuum carpets, keep him away from anyone that is super sick, etc. And just pray he gets stronger and doesn't have to be hospitalized again.

And remember how far he has come and what a miracle he is.




Nurse Abby

First meal able to sit up in the chair

Just hanging out.


Snacktime!

Tower building!

Cool ship eh!

 



Abby's card for her brother. This picture is Abby at home with a sad face because she misses Lochlan.


She wrote the message all by herself! "Lochlan, I hope you get better soon. I love you, Abby. xoxo

I put her card at the end of his bed. And some pictures around the message board.



Loch, showing off his stickers and batman Band-Aid where his IV used to be!

Chillin', reading a story!

No more nose prongs!!!!

Stretching out on a different "bed" doing some colouring.

Ready to go! (still had to wait about 45 mins!)

 


 

Sunday, March 31, 2013

Really? Pneumonia...again?

Lochlan spent 5 days in the hospital with RSV and pneumonia in late January/early February this year. It was awful. He had to be suctioned many times which was even more awful. I can still remember him crying and screaming: "Is it done? All done? All done?" Then once it was done, we'd say all done and he'd say "all done!" It got to the point where even if I tried to put saline drops in his nose, he would start to freak out. And anytime they came to suction him, he'd say, "don't do my nose okay? Do my finger!" Poor guy. My heart still breaks just thinking about it.
Thankfully, after 5 days, Lochlan made a quick recovery. I wish I'd written more about the experience but time got away from me. He went home with oral antibiotics and to take his puffers regularly. When he went to his follow up doctor's appointment, she changed his Flovent puffer to a puffer called Alvesco. With the plan to remain on that for the remainder of the winter flu and cold season.

He had a random fever in the beginning of March for a few days just before March Break as did Abby. But other than that, he did pretty good health wise. Until this past week.

He had a high fever (103.5) mid week and just could not recover. He had no other symptoms other than the fever and we kept up with alternating between motrin and tylenol. It seems to bring it down but never fully "broke" it. Thursday he started to get less active and lost his appetite. That evening he began grunting as he exhaled. I gave him his ventolin every 4 hours or so still not really sure what was going on. Thought that maybe he just was feeling icky and it was more of a groan than anything.

He also complained about his tummy hurting. I gave him some Gravol hoping to help settle it. On Friday, he looked very pale. And just not well. He was grunting again and was pretty clingy and not eating a whole lot. We kept up with Ventolin and the fever meds (his temp was just over 100) but you could tell he was feeling pretty rough. He went to bed and at 1:30am came into our room and was very upset that his tummy was hurting. I tried rubbing it, he had no fever, and brought into into bed with us. I don't think he was in bed with us for 5 mins before it was super clear that he was having a hard time breathing. His grunting was very loud. (yes the house was quiet with it being bedtime but it helped to heighten the urgency)

Rob and I both agreed that he needed to go to emerg. I told Lochlan that I was going to take him to the doctor and he said "Ok, mom. Bye, daddy."

We made it to the ER and surprisingly went straight to triage (no one else there). The nurse said we timed that pretty good cause they just had a three hour wait. She took his vitals and his oxygen saturation was about 94/95 if I remember correctly. I actually was pretty shocked given the grunting.

We went straight to a bed in the emergency department after registering. And there we waited. And waited. Guess that three hour wait still affected us. A RN finally came and talked to us to get the scoop and take his temp and listen to his chest and said a doctor would be by soon.

We waited.

During our wait Lochlan tried to sleep but if was difficult given the bright lights and the patient beside us in the next bed. He was loud and must have forgot the curtain didn't mask his loud voice and farts. Terrible.

Anyway, finally had a resident come by who then had to report back to her superior. Up to this point we had been waiting about 2 1/2 hours.

She came back with the attending who I could hear say, "so you aren't recommending a chest X-ray?"

Once the attending came in she asked a few questions then said "ok, we are going to get a rectal temperature, (it showed he had no fever in triage and he felt warm) she thought he had one too. And take him for a chest X-ray. "

A paediatric consult was also recommended.

So he had his X-ray, and turned out he did have a fever. So he got some Tylenol. We both ended up falling asleep. I felt like I was asleep for 5 mins when the consultant showed up. It was 6:30. I must have been asleep for at least an hour. Maybe maybe not. Anyway he came in and was so super chipper and completely oblivious that he woke us up. And wanted to do a full history. He introduced himself - and said he was a psychiatry resident who was starting his paediatric round and he tanked me for helping to further his knowledge and education.

Which I'm all for. But at this point I didn't wish Lochlan to be a guinea pig, I just wanted to freakin' sleep!!!! And to figure out what was going on. I had started to question whether or not Lochlan even needed to be in the ER. Perhaps I had overreacted. They certainly didn't seem to take him being here too seriously. I mean, he hadn't had his vitals checked since triage and that was 4 1/2 hours later!

The resident went to look up at the monitor to write Lochlan's stats down and was like, oh. To which I said pretty loudly, they haven't checked his stats since triage. A few mins later a nurse came in. Lochlan was at 91-93. He ended up getting oxygen nose prongs put on. (Adult ones by the way)

Oh and by this point another nurse and doctor were starting so they were great at letting me know what was going on. His X-ray showed pneumonia and a pocket of fluid both on his left lung.

So he was admitted and we finally arrived on the paediatric floor just before 9am Saturday. They put an IV in to give him antibiotics. Thankfully they got it in the second try. Cause man that is so awful.

So here we are. Still waiting for him to get better. He is improving little by little.

Saturday night he woke up complaining his tummy hurt and also he insisted on sleeping on me and when I tried to shift or move, he'd start to cry for me to stay. I literally had him snuggled like a baby.

Yesterday was a bit rough. (Sunday) His o2 was turned down and then not monitored very well so he got really subdued and just didn't look well. After I left with Abby, Rob became increasingly worried and asked them to check his sats. Then he said it became pretty hectic. The resident rushed off to find his attending and said Lochlan may have to go to the ICU. Guess his o2 was at 85%. They quickly put a mask on him and turned his oxygen up. And he started to perk up by the time I came back to switch out with Rob.

It had been pretty scary for a bit. So this morning he was at 40% oxygen when I arrived but he was also playing with a car and big garage ramp toy and having a grand ol time and now he is back to nose prongs and at .5 litre. (Whatever that is in percentage.) definitely feeling better. So it's a waiting game. He has to be fever free and off the oxygen in order to go home. Getting closer. Oh and his paediatrician is on duty today so that was a relief to see. She knows him get well. She's en showed me his X-ray. Oh my goodness. Half of his left lung was covered with pneumonia. She showed me his pneumonia from his stay in jan/feb and it was nothing compared to this. It was a massive pneumonia. Poor guy.

So we wait. As long as he is getting better and responding to the antibiotics we don't have to worry about that pocket of fluid. If he starts to have a recurring fever and gets more sickly we can guess the fluid is not being absorbed and the infection is spreading and will need to be drained. Not cool. So praying he just continues to improve.

He'll probably be here until at least tomorrow. Still praying and holding out hope he could come home tonight. But also trying to be realistic. But if you know me, I believe stranger things can and do happen!

I would never have thought Lochlan would need to be back in the hospital so soon. (Of course was hoping and praying we'd never be back!) but definitely not this flu/cold season. It almost feels surreal. Like I'm just having a bad dream. And on the other hand, it feels like we never left from the first episode this year. So over the sickness. And ready to enjoy spring and summer.

And to start planning a third birthday party!!!! (May 5th)














Tuesday, January 29, 2013

RSV - round two

Because Lochlan was born so very premature (15 weeks early) and because he was on the ventilator for so long, he suffers from Bronchopulmonary dysplasia. (BPD)

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002079/

This makes him very susceptible to lung infections including the common cold and RSV. (Respiratory syncytial virus)

http://m.kidshealth.org/parent/infections/bacterial_viral/rsv.htmlb

For the first winter season after he was born, he qualified for an RSV shot called Synagis which gives the body antibodies to fight RSV.

Season one- RSV shot, no RSV.

Season two- did not qualify for the RSV shot. (The government pays for it here in Canada) As a result, he contracted RSV which turned into pneumonia and spent a week in the hospital.

Season three - no RSV shot - ended up with a virus and then picked up RSV. Now here we are again, in the hospital.

Dr. Flavin stopped by this morning for a consult. He said that Lochlan is right in the thick of the RSV and it is just wiping him out. If his fever spikes again this afternoon and he continues to not improve, they may determine it's bacterial and start him on antibiotics.

(His fever had gone up to 102.9 yesterday afternoon and evening but broke overnight.)

Dr. Flavin said he is full of mucus and secretions and it needs to break up and come up. Good times!

So to help with that, he is getting a hypertonic saline nebulizer every two hours for three doses. Then will be switched back to Ventolin.
The saline thing is a mask that is held over his nose and sprays thus smoke into his face. Needs to be held there for 15 mins too)

The resident came in not too long ago and said that in order for him to go home, he needs to be on room air, drinking enough fluids, and not needing the Ventolin as much. (Every 4 hours would be okay for us to do at home)

So now it's a waiting game. Lochlan is very sleepy still and has been asleep since last night apart from asking for water and being woken up for one thing or another.
He's not interested in eating anything.

This morning while his eyes were closed I whispered that I loved him in his ear and that he was so strong and he said this teeny tiny "yeah" and then went back to sleep.

Thank you for your positive thoughts, well wishes and prayers for a speedy recovery.

To quote my best friend: "Dear Lochlan, we know how strong you are. You don't need to keep proving it!"





Monday, January 28, 2013

Hospitalization

You wouldn't think that it would have to take being admitted to the hospital to get me to write a new blog post. But that what it was. I haven't written much in the past few months because things have been going so very well and there hasn't been much to report except for the day to day. And there have been a ton of awesome moments to write about.  I just rarely have time to just sit down and write about it.

Today, I have a lot of time as I am sitting beside Lochlan's bed in the hospital.

About a week and a half ago, he started getting a runny nose. A few days later he developed a little bit of a cough. Then on Friday, he spiked a fever and had it over the weekend. I had to work yesterday, but Rob said that he just lied around and didn't eat much or drink much. This morning was the same thing. He was very clingy and snuggled right into me. His lungs were retracting quite a bit and he was breathing quite rapidly. When I checked his premature this morning, he did not have a fever but I gave him some Tylenol anyway cause I knew he was feeling pretty crummy. 

We are expecting some pretty bad weather today and tomorrow with snow and then freezing rain so I didn't want to delay getting him checked out.

We got to the hospital Children's outpatient clinic just before 10am. We sat in triage for close to an hour. While waiting he was snuggled right into me. He did ask for some "blub blubs" (goldfish crackers) and some cantaloupe. And he ate quite a bit. And drank a little bit too. Finally it was our turn and the triage nurse took his vitals. He had lost weight. I'm pretty sure he was up to 26 pounds the last time we were at his regular doctor's appointment. Today he weighed 24 1/4 pounds. Not cool. He's little to start with! Can't afford to lose weight when it takes him several months to gain even one pound!

He wasn't sat'ing very well with his oxygen. About high 80s/low 90s. So we were whisked off to another room where he had to have a CPAP mask put on. He was also given 4 puffs of ventolin on 2 different occasions to help open up his lungs. He was pretty chill for a while. Happy to be watching TV and snuggled into mommy. He did eat the rest of the cantaloupe I had packed and also the rest of the goldfish. Wasn't really interested in drinking any water.

They took a chest x-ray and we continued to wait.

While we were waiting, Lochlan's colour started returning and he was even sitting up doing some colouring in his book and placing stickers too. They kept checking his vitals and oxygen level and I honestly thought he was perking up and we'd be able to go home soon.

Some more waiting and then I could tell that Lochlan was getting pretty sleepy. It was 1:30 and he was in desperate need of a nap. He started to fall asleep when the paramedics arrived to take transfer him to KGH. The resident had mentioned that most likely he would be admitted  but I had still hoped that wasn't going to be the case. Obviously with the arrival of the paramedics, I knew that wasn't happening.

I had to take a picture - he looked so ridiculously small
So here were are. The chest xray showed something but it was very likely a virus. They don't think it's bacterial. They are going to consult with Dr. Flavin who has been following him since he was born and compare scans from previous ones. Compared to last March when he was admitted for pneumonia, it doesn't look as bad. They will not be starting him on any antibiotics unless his condition doesn't improve.

They did give him some more Ventolin but this time through some other mask thing. I can't remember what it was called. They didn't want to wait for the puffers to be ordered to get it started again.  They are also going to be giving him a steroid but an oral one I think they said because the Flovent takes a few weeks to kick him to see any results. Chances are he will be back on at least the Flovent puffer over the winter as a preventative measure. Dr. Flavin will confirm when he stops by later tonight or early tomorrow.

They are also thinking of putting in an IV to give him more fluids. He hasn't been drinking much at all so they want to make sure he's not dehydrated.  I asked if we could wait for him to wake up to see if he would drink from his cup before going the IV route.

Okay, he's starting to wake up now. Time for some snuggles. I'll try to post an update when I can.
Wait...scratch that, the nurse just came in and they are going to start an IV. And they are going to suction him. Gah...sorry buddy!

Even more snuggles for you! xo