Survival

Let me tell you about my world for the last month, here is what we did and suggestions on what we would have done different.  When we started this roller coaster we had no idea how to help Charlee the best.  So here are the things we have discovered along the way, but we probably aren't done.  If you have any suggestions or know someone who has had a similar experience please share with me, we are scratching our heads.

HOSPITAL:

When we went from the doctors office by ambulance to Primary Children's Medical Center (PCMC), I was shocked and in denial.  Karst asked me what I wanted him to pack and I drew a blank.  He was a life saver and did great, but now I have a packing list in my planner so if it happens again I will have my chapstick, water bottle and calling card, (cell phones don't work too well at PCMC and you can't call long distance.)

One thing that worked out well was having the IV in her foot, she likes to be swaddled when she is sleeping and was just starting to use her hands.  When the IV was in her hand she noticed it more, the foot was the best.

Although, they do have blankets you can use for your babies, she did a lot better with the ones from our home she slept better.  Another thing that helped was we asked the nurse how she was doing with wet diapers, as a sign she wasn't dehydrated, so when they were on the light side we woke her up fed her got what we needed and avoided more IV's.  This helped so much in getting her home quickly.  

I felt bad that she was in the hospital and not at home so I wanted to hold her to help comfort her, but she slept better and breathed better when she was laying in the bed they made.  So when we got home we made up her bed up exactly the same and she slept better then she had in weeks.

SLEEPING/LIVING:

We got out the pack and play, put in the bassinet part, elevated about 45 degree's the top part with a pillow.

Then we used a flannel sheet over the bottom board (like they did), and took a sheet and rolled it and put into a U shape.  This worked so good at holding her in place while she slept or was awake, I think it made her feel like she was being held.

I forgot to take a picture, but we put one of the head supports at the top and then covered with a blanket. (flannel works the best to keep from sliding.) This is all tucked in tightly under the bottom board thing.

I kept her sleepers and onesies right on the side, too many clothes changes throughout the day to keep track. and we moved the changing part of her pack in play to the outside, attached a mobile and made this central station for her.  

This has worked out great day or night everything she needs is right there.  Also we have the humidifier right over the bed, so she got as much of the vapors that she needed.  

If Charlee starts coughing she will easily get out of breath and turn red or choke, so we have to roll her on her side or stomach and sometimes tap her back, because of this we are always within arms length of her and  have all been sleeping in the living room, so night or day we are right there. 

 We've learned how to live together in 1/4 of the space we own.  I guess you could say we are a close family now.

CLOTHES

One of my favorite things that helps is onesies that snap up the front we found some at walmart and babys r us , so I don't have to pull them over her head with the oxygen.  However they were hard to find.  Karst went and found her some more, (not a fan of shopping so you know its love.)

When she was first sick she was going to the doctors every day and whenever she was congested we would have to go get her airway suctioned. 

Having her always wearing snapped onesies and sleepers meant she was always ready to head out the door and I wouldn't have to undress her at the doctors office they could just unsnap and watch for retractions, and listen to her lungs.

FOLLOW UP DOCTOR VISITS/SUCTIONING AIRWAY

Another great thing that helped was the hospital made what they called "Suction Shack", this was for kids and babies with RSV or Bronchiolitis could get a prescription from there doctor and go to a respiratory therapist to have there airway cleared out.  This was available with any IHC hospital.  I tried going to another location besides PCMC and they were not as efficient or gentle.  It was worth the extra 15 minute drive to get it done fast and good. 

So when Charlee would get congested, have a hard time breathing or eating I would load her into the car, call the respiratory clinic at PMCH let them know we'd be there in 30 minutes and I would meet them at the "Suction Shack."  Day or night anytime I could take her there, once they had the prescription, we didn't have to wait in the ER, no registration and she didn't have to be checked out by another doctor it was just taken care of then.  This is how I learned that from my garage to the second row parking at PCMC is 22.2 miles and it takes 29 minutes from my front door to their door.  I slept in my clothes and kept everything ready to go so when I needed to take her we could be out the door in 5 minutes.

The therapist would put her on the monitor to see her heart rate and oxygen level, listen to her lungs, count her breathing.  Then I would swaddle her, they would put saline down her nose, followed by a small catheter and would suction the  mucus out of her airway.  Not a fun experience, I hated watching her face and holding her down but they would get so much mucus and she would breath better after so we did it.  This suction shack or suction clinic was one of the best things.  She was also seeing her pediatrician everyday and they would suction her airway but the medical assistants at the pediatricians office were not were as good as the respiratory therapists. 

For 3 weeks we did this, until her congestion was no longer in her nose but more in her lungs.  I would ask the therapist tons of questions and ideas on how to clear this up and what to do.  The answer was always, keep doing the bulb syringe, saline,  humidifier and make sure she is eating a lot.  Almost all of them said that she should be cleared up at 2 weeks, 3 weeks at the longest, and she was still struggling I knew more was going on, so we went back to the ER for more tests and x ray's last week.   

HOME CARE:

Well like I mentioned we had Charlee always by the humidifier.

Also we took her temperature all the time, I found the Vicks digital thermometer the best, because even if you were too tired to read or it was too dark to see the numbers it shows you by color if she is good (green), low fever (orange), high fever (red).  Plus it would read in about 8 seconds.

Saline and Bulb syringe.  There are different angles and ways to hold the syringe to use it best for your baby.  I didn't know this until a medical assistant showed me, so ask them to show you what works for your baby so you don't waste your time and the babies tears.  The "Little Noses" Saline was the best we found, because you could use it as drops or spray and it seemed to irritate her less.

OXYGEN:

When they asked us if we'd be okay taking her home on oxygen, I thought yeah what's the problem she's been good with the tubing.  But 20 minutes later when they called and asked which supplier we wanted to use, what kind of oxygen I wondered what we were in for.  And then when they wheeled in the tank and showed us how to use it and went over all the don'ts I was worried about it.  However after dealing with it for 4 weeks, it really isn't that big of a deal.  

The oxygen supplier had lots of good information, it just took me a week to figure out how to ask the questions, but they could tell us how long the tanks last by the oxygen flow.  They could supply me with extra nasal cannula (tubing), and tender grips (face stickies), how often to change them and how to change them.  When we left the hospital, they assumed she would be off her oxygen in 2 days, I am sure if they would have thought it would have gone on this long they would have given us more details about how to take care of it.  

But now we have it figured out, we place our order once a week and they deliver the oxygen to our home and even put it away.  We are going with Praxair and they have provided great service.

The stroller is the best for going places with Charlee because it is hard to carry her, the diaper bag and the oxygen.  Having it all together and not tripping over the tubbing is a great thing.  It is a little big and bulky, but we're getting used to it.

NEXT??

What is ahead for Charlee to get better?  That is the question.  She has finished her antibiotics, they are waiting a week for that to totally kick in  and then in April we'll be back with the pulmonary doctor working to get her off the oxygen.  If she can't do it yet, we start steroids. What an education this has been.  

Again if you have any suggestions or you or some one you know has had a similar experience please share with us.  The good thing is she is slowly getting better and it isn't really as bad as it sounds.

And she is still her cute happy little self.