3

A Helping Hand

When Matthew was in the hospital, back in November, for his G-tube placement, I finally confessed that I was having trouble keeping up with my ‘work load’. Matthew needs 24/7 attention. I am not able to give him that and give the girls the attention that they need and keep up with housework and making meals, etc. etc. We started the process of getting approval from insurance to have a nurse come into our house to care for Matthew. From there, we found an agency that did pediatric care and that had someone available. A few short months later we had a helper. She comes every weekday at 8 and stays until 4. She dresses him, bathes him, holds him, keeps track of his meds and his feeds. Essentially, everything that Matthew needs she does. She accompanies us on trips to the doctor and helps with his various therapies. If it is nap time, I am able to leave him home with his nurse and let him rest while I run to the store or to any appointments that I have.

I was hesitant to ask for help. I like to be in control.  I wanted to feel like I could do it all on my own. And, while I could, I wasn’t doing it well. It wasn’t fair that the girls only got attention in short spurts or had to wait for Matthew to be napping before their needs were met. I was getting very little sleep after exhausting days. I was out of patience and just wasn’t a very good mommy or wife. Now, I am free to just be mom. I still think about Matthew’s needs. I can’t really get that out of my mind. But, I don’t have to worry that I will forget to give him his meds. I don’t have to leave Ruth unattended on the potty  while I rescue a screaming Matthew. We can eat lunch at a normal time, because I’m no longer spending an hour trying to get him to sleep while his sisters starve in the other room (and continually interrupt the putting Matthew to sleep process). I’m not trying to carry him and his pump while corralling the girls across parking lots and through crowds. We can focus on being a family and on loving each other. That other stuff doesn’t have to get in the way any more.

We like this new set up. I may even regain my sanity at some point!

0

Team Healing Matthew

As you know, we have decided to celebrate Matthew’s first birthday by participating in a fundraising event at the Children’s Hospital of The King’s Daughters in Norfolk, VA. Erynn and Ruth call CHKD “Matthew’s Hospital.” The doctors and nurses there worked round the clock for a full month to keep Matthew with us. The least that we can do is run/walk a few miles to say “thank you.”

We’ve created a running team, shockingly called “Healing Matthew”, to run the 8K event on June 14, 2014. Please consider joining us. Registration is now open, with early bird registration rates available through February 28. Here’s the best part: You can make your very own super hero cape to wear during the race!!!!! (Or buy one. Or not wear one at all.. but that would make you a party pooper)

Okay. I think that is all the information that you need. SO! Go register!! Here is the link: Event Registration; Team Healing Matthew.  I would also like to mention that if you want to participate but don’t feel up to walking or running the 8K, there are 1 mile events that you can opt into.

4

False Alarm

Eight months ago, I began sleeping with my phone beside my bed. The last thing I do at night is check that the volume is up all of the way. At that point in time, I was waiting for a call from the PICU for a ‘you need to come up here now’ or a ‘we need verbal authorization to do this dangerous procedure’. All of that changed in August. That is when Matthew was listed for transplant and ‘the call’ could come at any moment. Now I sleep with my phone next to the bed anticipating a phone call that takes us to Georgetown University Hospital; a call that heals Matthew.

Well, almost two weeks ago, that call came. It went sort of like I expected it to. At 7AM the phone rang. I recognized the area code and stopped breathing. As the lady on the phone is telling me that they have found a potential liver for Matthew, I’m shaking Rusty whispering “It’s DC.” and he’s very slowly gaining consciousness. Well the call ended with her telling us that things would drag on throughout the day and that we should just sit tight for a while. So, Rusty went to work and I went about getting the girls ready for the day… for about 2 hours. Around 9 we got a second call asking us to head out the door. I notified everyone that needed to know in our ‘escape plan’ and then turned towards packing, at which point my mind went completely blank. I stood there, staring at the list of things to pack that I had written 7 months ago and couldn’t get my brain to process the words. Finally, I just started grabbing things and throwing them in to a suitcase and eventually my mind cleared.

false alarm day

false alarm day

The day was surreal. Matthew was full of smiles and chatter; more so than he had ever been. His sisters were super cooperative and happy. Everyone involved in the process responded quickly and the things just rolled incredibly smoothly. Even the drive was smooth. Matthew didn’t make a sound the entire drive. There wasn’t a car on the road. It was like that scene from Bruce Almighty, when he clears the clogged street so that he can drive past the traffic. Everything was perfect. Rusty and I were calm about the process and excited about the changes it would bring (and nervous about the changes it would bring). We checked in to the hospital. Matthew began his labs and the list of other pre-surgery checks. And, we settled in to wait. We had been told that the surgery would start around 2 AM but that Matthew’s prep would start at 1AM. We expected an 8 hour surgery, so we went to bed early to rest up for the early and nerve-racking morning. At 4 AM, we both woke up to find Matthew still in the room. Hmm. That’s strange. Maybe surgery got delayed. We found a nurse, who found a doctor who told us that the surgery had been cancelled, and then found a surgeon to talk to us about it.

The surgeon explained that the team member retrieving the donor’s liver found an anatomical anomaly that made it not a good organ for transplant. As we understand it, when the donor’s liver was forming, one of the veins had wrapped itself around the liver, creating an end point location that is slightly off from a typical liver. The donor’s liver functioned perfectly for him or her. However, trying to manipulate that vein to fit Matthew would have greatly increased his chances for clotting and rejection, and for needing a second transplant. The team was very kind and apologetic. They kept saying they were sorry and giving us sad faces or hugs.

Here’s the thing. Yes we are disappointed that this long, long awaited transplant didn’t happen, but we are not sad about it. In fact, we are very happy about how things developed. We are glad that we had a trial run. Glad that everyone was able to scramble together at the last second. Glad that the girls didn’t have any transition problems into a new house with new rules and new bedtime routines. Glad that we now know what to expect in the hours leading up to transplant. But more than any of that, we are so very glad that his team of surgeons didn’t try to force something to work that wasn’t the safest possible option. We are very thankful for a team that is taking their time and being picky, a team that is searching for the perfect liver for Matthew.

But, um, Perfect Liver,  my house is clean and the bags are ready and the kinks in the plan are all worked out… so, you can go ahead and show up now. Please and thank you.