Home Sweet Home

After 19 weeks and 5 days in the hospital, we brought Maci home on Thursday, April 5^th.  It was a bittersweet day.  It’s been over two weeks and I still miss the friendly faces of the nurses, doctors and staff at LeBonheur.

We weren’t home 24 hours before I was moving Maci on the bed and leaned against her feeding tube and out it came!  Maci cried for about a half of a second but I cried for much longer.  I couldn’t believe I had pulled out her feeding tube!  Off to LeBonheur ED we went and about 4 hours later the button was back in and we were home.

On Thursday evening, April 12^th, about to give Maci a bath and change her dialysis catheter dressing, I cut Maci’s catheter.  I was trying to snip a small piece of tegaderm (tegaderm is a transparent medical dressing used to cover and protect areas) to get it loose and I snipped the catheter too.  Basket. Case. That’s what I was.  My stupid mistake earned us a 5 night/5 day stay in LeBonheur, Maci another surgery to replace her catheter and time off dialysis to allow her catheter to heal.

We came back home on Tuesday night, April 17^th.  The first night home on dialysis was rough, the machine alarmed all night due to low drains.  We were at a lower fill volume of 140 instead of the typical amount of 180.  Wednesday night we bumped up to 160 and the machine did NOT alarm.  Tuesday night, Rick and I were up all night!!!  I was so very tired on Wednesday and Thursday and finally was able to get a nap yesterday when Maci took a nap. 

I still feel like total crap about cutting her catheter.  Maci sprung a leak Thursday from her catheter site.  It still needs time to heal so she is currently on a break from dialysis.  We know she does ok when she is on a break, it just stinks that she can’t get her antibiotics which she was to be on for 3 weeks.  The antibiotics was being put in the dialysis fluid so she’s not getting that right now.  I often just look at her and can’t help but cry.  Cry because I love her so much and because she has been through SO much and then I have caused unnecessary issues.  God love my precious, tenacious baby!  God help me not to do anything else stupid!

We have had SO MANY appointments and have been on the go since getting home.  My house is a wreck and it looks like a medical supply company and laundry mat blew up in my living room.  I am more than willing to have visitors and for people who haven’t had the opportunity to meet Moo to have that chance, we’ve just been sooooooo busy.  I hope to finish up next week with follow up doctor appointments and have more time at home.  Should anyone wish to visit, please; just let me know.  I do have a few “rules/requests”.

I know I can’t keep Maci from ever being  sick.  She will get sick.  I am not trying to be unrealistic.  I have to take her out in public, I do expose her to things in public but I do not allow people in public to touch her, get in her face or breathe on her.  As Maci’s parents, Rick and I get to decide what is best for her.  If someone is offended by a choice we make on who we allow around her based on illness, I apologize now but do not waiver from my priority, which is Maci.    I understand that it may just be “allergies” but exposing Maci could mean more to her than allergies.  We can’t just run to the pharmacy and treat her with over the counter medications or take her to the pediatrician.  We cannot give Maci anything over the counter or otherwise that is not cleared by her Nephrologists beforehand.  Maci’s kidneys not filtering plays a huge roll in meds she can take and can potentially mean meds that would work best for her cannot be an option. 

Maci may look “normal” and act “normal” but she is far from normal.  Most everyone knows that Maci’s kidneys do not filter the wastes from her blood which is the reason for the dialysis.  There are things that can prevent her dialysis from doing as well as it should and being sick is one of them.  Please know that as much as Rick and I want everyone to meet Maci, we must still be cautious with her.  Anyone can argue the amount of time one is contagious but as a general rule, if you have been sick, in ANY way, 2 weeks after all symptoms have subsided is when I would consider you no longer contagious.  When people are exposed to someone who has been sick, there can be an incubation period of 3-14 days.  It could take this long for any symptoms to surface.  If you have been around someone with a virus, strep throat, upper respiratory infection, etc, ANY ILLNESS that is contagious….I ask that you refrain from being around us or Maci.  It is quite important too that Rick and I remain well to be able to adequately take care of our baby girl.  Thank you in advance for understanding.