Becoming a Special Needs Mom All Over Again (an update)
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This is a guest post written by my friend, Aprille from Beautiful in His Time. She’s sharing an update on our situation from her perspective as my friend.
She tells me words I can’t pronounce.
She already has one child with special-needs. He needs therapies and extra attention, and now her three-month-old daughter is showing the signs of neurological problems, birth defects, and extenuating needs.
Her plate, already so full with a child with autism and a newborn, has now had more heaped upon it as she’s seeking for a diagnosis and help for her daughter.
She needs help. People to watch her son, people that can learn how to feed her daughter so she won’t aspirate. Her husband is missing more and more work because she simply can’t do it all.
And I can’t help because I’m nearly 400 miles away and we’ve never even met. I’ve gotten angry with her and for her. I wonder why God would pile more on her plate. I can’t fathom the burdens she carries, looking into the eyes of now two precious babies knowing that there’s just something wrong, some way they need help.
I scrawled these words in a notebook two weeks ago. Since then, more has happened to my friend and her sweet family. They have spent now close to a week in the hospital. Kathryn has been separated from her son so that she can care for her daughter. They have just gone through so much!
On Thursday, baby Liz had an endoscopy, after going nine hours without eating because of delays at the hospital. Kathryn said this after the endoscopy around 9PM on Thursday night:
“They didn’t find anything but are waiting on the biopsy results.
Since she was choking and vomited once they are re-doing the NJ tube and want to see how she does over the weekend. If she continues to choke and aspirated with that then they want to do surgery to insert a more permanent g-tube in the stomach. If she does good with NJ tube then they will send us home to do half tube feeding and half bottle feelings.
They inserted the NJ tube during the procedure, but after they have to do an x-ray to make sure it’s right then find a doctor to approve it. It took two times and two x-rays. And she’s now eating by tube for the first time since 8 this morning.”
On Friday, they got set up at the Ronald MacDonald house so that Kathryn could get some sleep and a chance to visit with Adam.
“Elizabeth is doing ok today. She has caught a bad cold so they are doing a flu and RSV swab and an x-ray to make sure she didn’t catch Adam’s bronchitis or anything else.
Today has mostly been about getting our questions answered which can be quite impossible around here, but we finally have some more answers. She was still choking so they gave her some meds starting this morning to dry up her salvia a little more so she is not choking/aspirating on that. Since she has been on it she has not had any episodes.”
Friday night, Kathryn got her first night of sleep in a real bed after three nights sleeping in the hospital.
“First time seeing Adam in 4 days! We had a blast playing at the Ronald McDonald House!”
On Saturday, she got to visit with Adam and learned how to feed Liz through the tube:
“Liz will be on this feeding tube until we get more answers and I also have a 3 year old who is still being spoon-fed. We will still be traveling all over for follow-ups with 4 different specialists and Adam still has 15 hours of therapy a week and morning school 5 days a week. The problem is coordinating all this and getting enough help to do it all.
I haven’t been home, but I’ve been told that my amazing sister-in-law has been cleaning our house and keeping up with laundry. I’m hoping the feeding tube wont be a lot of work at home and somehow I will manage to have to time to keep up with housework.
There is still a lot of possibilities in the future for Liz. Surgery is one of them. We are just taking it one day at a time.”
On Sunday, they prepared to go home:
“I got trained on the feeding tube yesterday and it’s looking a little easier than I thought. There is a lot to do and remember, but we should be fine. She will be hooked up to it 24/7. It’s going to be interesting going everywhere with this thing in and carrying it all around.
Liz is doing ok. She had a very bad choking episode yesterday afternoon, but that was the first one in awhile. She will be going home on the medicine that drys up her saliva so she is not choking/aspirating on that. They said there should be very few choking episodes, but to continue logging because depending on how many she has she will need surgery. Liz still has a bit if a cold and has been in serious pain from gas. Just been given her gas drops in her tube around the clock, but they think it’s just from everything going on. Please pray it gets better.”
Upon their return home, Liz started choking again and they were reminded that they needed to get her special medicine. But, they found out that there is a national shortage of the medication. They couldn’t get it at CVS so had to go BACK to the hospital, only to find out that Tricare was refusing to pay for the medication. They paid for three days worth of the medication out of pocket.
Liz continued to choke and had 10-15 choking episodes within a 3 hour period, so they took her back to the hospital on Monday, where they remain now.
Liz will be having laparoscopic surgery called Fundoplication later on this week (tentatively Friday) to help with the reflux and hopefully the aspiration.
“During surgery they will insert a G-tube for feeding. This will help with recovery and with her current feeding issues. How long she is on the G-tube is dependent upon how everything goes and what the feeding therapist wants to do from here on out.
We will stay here until then and recovery takes about 2-3 days afterward depending on how she does.
Right now we are concerned about her weight as she has lost 5 oz in the past week, and no one has any idea why since she is on a feeding tube. She is supposed to be gaining at about 1 ounce a day, but she has almost lost that much. They upped her NJ tube feeds from 30 to 35 so we will see if that makes a difference.”
Dear Kathryn’s friends and readers:
I really don’t think there are any words to really express how hard these last few weeks have been on Kathryn and her family. I would request, as one of her friends, that you lift her and her family up in prayer as much as you can. If you know her personally / locally, please check out her personal Facebook page for a link to the meal train (posted on March 2), or consider visiting her in the hospital. Bring some flowers to brighten the hospital room. Hospital food is not the best, so perhaps bring her some healthy snacks, drinks, or a cup of coffee. I’m sure she could use the company and encouragement.
If you would like to send a card or do something financially for Kathryn and her family (such as a gift card), you can contact me at email@example.com and I will get you details on that. This is not something she has asked for – this is me speaking as her friend who knows that money is tight and only getting tighter with all of these circumstances!
I got your post. It’s wonderful you are doing this for Kathryn and her family. As an army wife, Kathryn has been a HUGE help to me and my family through her posts. I know how overwhelming just being an army wife can be – but ALSO having to deal with this kind of pressure and pain?! Please set up a fundraising site (Kickstarter is a good one) using just what you posted so that we can start donating money asap – especially if Tricare is giving them a hard time – this is NO time for having to deal with that kind of bureaucracy.
I second the motion to start a fundraiser online of some sort. Id love to contribute and im sure many of us would. Ill be praying in the meantime!
Great post, Aprille! And I love Nancy’s idea!