She Laughs Without Fear of the Future

Emma has been recovering very well from her surgery at the end of August. We gave her 1.25mL of baby liquid Tylenol once a day when she seemed to need it. That lasted maybe four or five days, and she never seemed to be in pain when we sat her up for trach care at night, which was really good. She quickly went back to laughing and being her regular happy and silly self. Due to testing positive for MRSA we continued swabbing her nose in the morning and at night with the Bactroban medicine for 5 days after discharge and cleaned her tummy scars with antibiotic ointment for 10 days.

Michael scheduled a phone call with Dr. Green in Michigan to find out what he and Emma’s ENT spoke about when we were in the hospital. Dr. Green confirmed that she still has one fistula in her trachea, where the 3D splint could be seen in the photographs, but it is about half of the size as it was in February before we flew home from Michigan. That is some extremely slow tissue growth, but still good progress, especially considering how sliver-thin her trachea is! Maybe by next February it will be closed, but he did not mention needing another bronch done at that time.

  While I was making the next surgical appointment for October, because Emma will need the current yellow G-tube switched out to a Mic-Key button, I couldn’t help but laugh out of frustration. Scheduling so many doctor appointments made me think of the popular “if a train is going 65 miles per hour” math equation. Example:

“If Emma needs to see the pediatrician for her 15 month check up, but it must be 3 months after her 12 month check up which took place four weeks after her birthday in June. The doctor is only in the office on Mondays, Tuesdays, and Thursdays, but Rachel works every other Monday and Tuesday, and Michael needs to work at least 8 days per month to help cover all of the regular home bills, but they both have to be off from work in order to take Emma anywhere, when can they schedule the appointment?”

A)   Tuesday, October 9^th

B)   Monday, October 15^th

C)   Sometime in 2019

D)   Never

   Ahhh! Oh my gosh, hahaha. Um, probably D, “never”. Final Answer.

In order to schedule the next surgical appointment I actually had to call the pediatrician and ask if they could move our appointment from the 11^th to the 10^th so both the pediatrician and surgical appointments could be on the same day (the surgical doctor was not in office on the 11^th) and Michael could work a full day on the 11^th instead of working two half days. But I had to space them enough hours apart to account for how the long the first appointment would take and then driving time between the offices in traffic during the lunch rush at Noon. Pheeeew! And as a reminder, Emma has ten doctors.

Emma does not know how to contain her excitement at Target!!

    These photos above are from September 4^th when she had her surgical check up where they took the drain loop out from the G-tube revision surgery. Then Michael stated so wonderfully that we should go to lunch at Jason’s Deli and then to Target after. That made me so happy because usually we just go home after the doctor appointments and that is quite boring. Luckily now we don’t have as many doctor appointments as we used to and we have started putting ourselves in charge of when we go back rather than the “every 6 weeks” since things rarely change. This month we canceled the gastro/GI and pulmonology appointments because we had no reason to go back yet, and then Michael was able to work that day! :)

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Michael is an amazing dad. He is always thinking of her safety first. It is important that he does. It keeps her out of the hospital. At 31 years old I still think more of myself and all the fun things I want to do, and get upset when he says it’s not doable. She is 15 months now and I feel like her life is passing by, always stuck in one place at the time- the hospitals before and the house now. He did an experiment the other day since I always want us to take Emma outside (to the park, on a picnic, to the zoo, etc). He took her outside in the stroller and, even with her fan blowing, within a minute she was crying a lot and having desaturations, requiring oxygen and needing to be taken inside. He told me that her back was already soaked in sweat when he took her out of the car seat bucket. There are 4 reasons for why she did not tolerate the heat- 1: we live in Orlando so it was about 95* that afternoon. 2: trach babies overheat quickly, 3: she has dwarfism and little people overheat quickly, 4: if she has her daddy’s skin, he is constantly hot, even when the AC is set at 73*. So it is an unrealistic dream for me to imagine taking Emma so many places right now. This gets me excited for winter and doctor appointments. One day it will be different. One day we will do and go all of the places I think about. "Anything good in life requires some sort of sacrifice."

Sitting in the high chair for the first time- just for funzies: 9/12/18

It seems like ventilator babies are super rare. Emma is super rare. Like a holographic Charizard Pokemon card, circa 1999. I spend time searching the “ventilator baby” hashtag on Instagram to make new mom friends via social media. It looks like most ventilator babies wean off the vent before coming home from the hospital or the problem is fixed enough by just getting a trach. That must be nice. I look forward to when Emma only has a trach. My parents are going to the Disney area for my mom’s birthday later this year and I have wanted to take Emma somewhere overnight because it seems like something we need to practice. A couple weeks ago my mom suggested that we bring Emma to their hotel to stay overnight since they have an extra room. I instantly got excited about this great idea. Michael, trying to let down my spirit gently, laid in bed with me and asked me to list everything we would need to bring to take Emma somewhere overnight. I listed many things, but most are small and could fit in another backpack- aside from the medical backpack that we take with us to doctor appointments. When I was done with my verbal list, Michael added to it. My heart sank. Everything else he said were things we would need (like all of the pieces used to do Emma’s trach care which has to be done each night). It seemed impossible to ever take her anywhere overnight while she is on the ventilator, and even without the ventilator it only takes about five items off the list. It is good that they are big, bulky items though. But in the one Instagram page I found (I won’t mention it on here case that mom doesn’t want me to), it looks like she and her husband have taken her son places overnight- their location tagged was far enough away from where they live that I doubt it was only a day trip. I have sent her two messages asking about how they do it, but she has not replied. Here is our huge packing list:

>> Everything we would need to bring to take Emma somewhere overnight:
All the stuff we normally take to doctor appointments~
            - stroller
            - backpack full of medical supplies
            - medical binder
            - battery to charge Sprint packs or plug ventilator in **
            - suction machine & Ambu bag
            - Sat probe monitor

·      Pack N Play to substitute the crib

·     Ventilator stand because she needs the humidifier (can’t only use HMEs) **

·      Air concentrator and tubing **

·      Extra oxygen tanks to use during outings **

·      Everything for treatments = 5 pieces of nebulizer & white circle box, Ipatropium viles & Qvar

·      More diapers (10 per day?), various diaper rash creams, more water wipes

·      Baby clothes (3 outfits), slobby rags, thin blankets, 2 pacifiers, bell

·      5-plug extension outlet to plug all her vent stand stuff in.

·      Everything for trach care including trach table:
- Ties, gauze, Mepilex & Polymem, water, soap, extra trachs, scissors, tape

·      Bathtub depending on how many nights we are gone

·      Wash cloths, baby towels, soaps, sleep lotion

·      Feeding bags & Farrell bags

·      Caddy with a lot of pink bullets and water for flushes

·      Extra sat probe cords & sticky foot pieces & Posey

·      Gallon of Purified water for mixing formula

·      Gallon of Distilled water for humidifier **

·      Container(s) of EleCare, Beneprotein & Pectin, 8oz bottles to mix it in (5oz batch)

·      Augmentin (keep it cold!) and syringes for meds

·      Liquid Infant Tylenol just incase??

& Our own adult stuff  à  clothes, tooth brushes, meds, etc. (Items with ** at the end will not be needed once she is off the ventilator. )

This is heavy blue piece of equipment is the air concentrator which converts room air into oxygen. I did not have a picture of it in last month's post entitled "Gore-ganization 101".  Have a great week!!