A Day at Home, Part II

  I have the pleasure of staying home with Emma on days that Michael works, and vise versa. For us this is much more fun and relaxing than having a nurse during the day, however, this past weekend was the first time Michael and I have both worked at the same time (he was working at the Orlando Make Up Show for VAMP, the school he works for) so one of our friends who was Emma's NICU nurse offered to baby sit for us!! There are not many people we can trust with Emma's medical needs- even the nurses we had the first week she was home did not seem to have much experience with trach and ventilator babies- so being able to count on her was wonderful.
  Emma gets her treatments each morning and each night. Usually around 8am and 8pm, but sometimes her lungs do better and she lets me sleep in until 9am!! Yesterday was one of those nice days.

  First I will suction Emma's trach to make sure her airway is clear and not blocked with any phlegm from overnight. Often Michael will suction Emma and change her diaper before he leaves for work at 6:30am. I do the same on the days I work before I leave at 5:45am (so early)! Second she gets the treatment called Ipratropium Bromide or Atrovent which is used as a nebulizer to open up the medium and large airways in the lungs.  We squirt the medicine into the green part of the nebulizer, connect it in to her ventilator circuit, and hook it up to the main part that you turn on (I can't think of what the real name/ word would be). You can see a picture of the white "box" a couple pictures down under her feeding pump. This runs for 10-15 minutes until the nebulizer is dry. While this is going her humidifier is not being used, so we should turn it off, but usually we keep it on but have to silence it every few minutes because it alarms to let us know that the water temperature is lowering (21* C). It goes back up (36* C) when her treatment gets turned off.

 Then she gets her QVAR, an inhalation aerosol which is also commonly called Albuterol- a steroid which works directly in the lungs and opening them up to make breathing easier. She gets 2 puffs in the morning and 2 puffs at night. This also comes with an attachment so it can be given through the vent circuit. See how happy she is after her treatments? Being able to breathe is a wonderful thing!!

 Here are five of the diaper rash creams we have. If Emma is not constantly in Huggies and using water wipes her skin breaks down really quickly. She is just now getting over her diaper rash from the hospital at the end of August. The PICU did not have Huggies (only Pampers) and I was surprised when the nurse said she had never even heard of water wipes. We get those from Walmart too. Most of the time that week we just brought in our own diapers and wipes, but the few times they used Pampers and "chemical wipes" was enough to make her butt all red and splotchy, causing her to cry during each diaper change. 1% Hydrocortisone was prescribed by one her of her doctors a couple months ago, Z-Guard (with the orange top) was what they use in the hospital and is very thick. Anti Monkey Butt is what helped her diaper rash go away in Michigan, but we haven't used that in a while. I am surprised that we have never used Desitin on her, but I actually forgot that existed until someone at work mentioned it recently. We do have a big container of it in the closet though.

  After getting her treatments, a fresh diaper, and another suction is the best time for Mommy (me) to take a shower if I need one during the day. (Usually I take mine at night if I have to work the next morning because I really don't want to have to wake up earlier than 5:15am!) So I played her Moana CD while I was in my shower and Sasha stayed in her room making sure Emma was not alone.

   Grandma Sue, aka "Grammy" arrived at 11am from Gainesville because I told her that therapy was at 11:45 and she wanted to be there for that. Also she told me before that she doesn't mind being called Grammy because of Emma's nickname "Emmy"- both being televised award shows!! But Grandpa is just Grandpa. ;) Emma got her long hair put in a ponytail yesterday morning.

  I refilled her formula bag after my mom arrived. Oh that is something else we do every day- give her a fresh formula bag and farrell bag (it's a gas release bag), but I forgot to take pictures of that. When we are home during the day we usually make a 5 hour batch at a time and we make 8 hour batches at night. My insurance through work has been great about covering almost everything we need for Emma, but it was definitely a point of stress when we found out in April that they would not cover her formula once she was out of the NICU. EleCare would cost us $400/month, with each box (6 cans) being sold for $270!! Each can lasts about three days, and she uses 10 cans in a month. Luckily someone at the hospital referred us to WIC and we qualified for that, so once a month we go to their office and get Emma's cans for free. Pheeew! The Certo (pectin) is something her GI doctor suggested we try to thicken up her poops so it would be less painful for her to go each time. We have been adding that in Emma's formula since the end of June and it has worked well for her!

   Emma's physical therapist, Grace, arrived right on time! Although it was Emma's fourth therapy session at home, it was my first time meeting Grace. The first two sessions were on Wednesdays that I worked, but how they are scheduled for Mondays.  She was very nice, kind, and fun with Emma. They both seemed to have a great time! She worked on rolling to each side, Emma sitting up and balancing her core and neck muscles, keeping her chin tucked when she was pulled from a laying position to a sitting position instead of letting her head fall back.

  They did side leans so Emma would support her weight on each arm, and then stretched out each side. Grace had Emma reach for objects (her bell) and then suddenly, halfway through the session, while sitting up and holding the bell.. Emma fell asleep!! We thought she was faking it at first, but when she was moved around she didn't wake up and even began making her snoring noises. Grace said she wishes that she could come two or three times per week to help Emma, but the Early Steps program that she works for only allows one session per week for each patient. She told us about another insurance company (CMS- Children's Medical Services), but from the information she knew, it sounded like we could have to cancel our current insurance to get the extra sessions.

>> Later after her nap ~ about an hour long:
  Emma is having a good time here, but to be honest, her ability to pull down her glasses so easily is a smidge frustrating. It also concerns me since the pediatrician told us in June that she needs to wear them all the time (we only take them off at night) because she could go blind if she doesn't wear them!! With all her other medical conditions I definitely do not want "blindness" to be added to that list. We seriously have to put them back on her face about 50 times per day & put the splints back on her legs about 20 times as she can easily kick them off. I really do not think I am exaggerating on those numbers, but I guess that is another thing I could tally up for a real answer. Michael added the black straps so they would stay on her head better, but after three months they have gotten stretched out. He says he will make version 3.0 tomorrow!

  My mom and I were trying to brain storm ideas for how we could keep Emma's splints on better until we see the orthopedic therapist in a couple weeks and have her make new ones that fit her legs. She was keeping the right splint on pretty well, but was constantly kicking off the left one so we put a baby shoe on her foot. She kicked that off in half of a second because it was too big for her foot. The gray sock helped until Emma started pulling on the end of it. She's got strength in those tiny arms!! My mom got a funny video of Emma pulling it off and the whole thing hit her in the head. Haha ~ she was fine.

  Grammy stayed until about 4:30 then left to avoid traffic driving back. Emma was making kissy noises for almost an hour until she fell asleep again, and napped for two hours. I love hearing her make the kissy noises and puckering her lips. She seems so proud of herself and often smiles right after. Now I am just waiting until she learns to give us kisses. Stay tuned for the next post on Emma's night routine!!