No Pain. No Gaines.

Ramsey had a follow-up recently with his surgeon, Dr. Barbara Gaines. He is doing so well! The surgery never slowed him down. Some swear that he's brighter and he's even had fewer problems in the poop department! (LOL, my sister and I were just questioning why our kids always talk about poop and now I'm doing it too) 

Dr. Gaines has been with us since day one. Looking back, it's great to see the transformation in her demeanor; it has everything to do with how far he has come.  We knew Dr. Gaines would likely perform Ramsey's surgery; hearing from several nurses that she would be THEIR choice to operate on THEIR child was a huge relief. Knowing that she had also completed surgery on my nephews and a friend's child was also encouraging. I remember the morning rounds, and specifically our conversation following Ramsey's repair. As her team stood behind her beaming from ear to ear, she remained quite serious, nevertheless pleased with the outcome of the surgery.  She knew he still had a lot of progress to make.

As the months have passed and Ramsey continues to do well, it is so awesome to celebrate with Dr. Gaines. She shares that big smile of relief. I look forward to our appointments and I would imagine that she does too- patients like Ramsey are a victory.  I was amused on the day of his recent surgery as she exclaimed, "this is so exciting"! I wouldn't have thought to use those words regarding my son's surgery, but in the scheme of things, it WAS exciting. Dr. Gaines was thrilled, even relieved, because she remembered how fragile he used to be. She knew all too well how things could and did change from moment to moment. She recalled the day he came closer to being placed on ECMO than anyone has ever come. The surgeons were prepped and ready until his oxygen improved so much that they realized, "this kid doesn't need ECMO". That's my amazing child for ya! 

Soon, Dr. Gaine's says we won't even have to worry about Ramsey. I assured her that will never happen. Still, it's good to know that from her expert standpoint, it will.

Home Sweet Home

Ramsey awoke on Saturday as if the surgery had never happened! He was happy and eager to walk and leave the hospital room. We gave him many wagon rides and he said "Bye" and waved to everyone he saw. He ate a bit more and his pain was controlled. We were discharged around lunchtime. Ramsey got to have one last visit to Ronald McDonald House before we went home and he even tried to help us clean. (I'm sure that wasn't part of his discharge instructions!)

He loves his new Snoopy!

Post-Surgery Update

Today wasn't easy for our buddy. I've never seen Ramsey in so much pain. They suspended his epidural and when he awoke, he was feeling pretty rough. They gave him Oxycodone just prior to stopping the epidural, but he needed something more and when we tried to administer Morphine, his IV wasn't working. Luckily, as we waited for a new IV, he settled enough that we didn't have to give the Morphine. By this afternoon, he was finally happy enough to bear the pain. They removed the epidural, the catheter and all that other junk he was carrying around. With his new-found freedom, and better mood, we were even able to take him for a short walk and visit to the playroom. Hopefully we can bring him home this weekend.

We stayed at the Ronald McDonald House the night before the surgery. It was fun to have Ramsey stay there with us for the first time. Both Reed and Ramsey were so excited, you'd have thought we were on vacation. Ramsey decided crawling under the sofa bed was a good idea...

We played a bit the morning before the surgery at RMH and in the pre-surgery waiting area. Thank goodness for these distractions because Ramsey was HUNGRY!

Even Daddy had a good time in the playroom!

This is me as the marshmallow man

Wednesday night, RMH hosted a luau on the patio complete with entertainment. As you can see Reed had such a good time he didn't make it to see the end of the party...

This photo is begging for a caption!

We even had dinner with Case and Liz...we love them!

As always, being at the hospital helps to bring things into perspective...it reminds me how blessed I am. I look around and see other patients and their families enduring unimaginable and varied trials. I witness spoken and unspoken pain. Sometimes, the aching is even hidden behind a smile. Still, I see goodness, and joy found in healing and in miracles and I remind myself once again, how lucky I am to be taking Ramsey home.

Surgery went well

Ramsey's surgery went well. He actually woke and stood up
in the recovery room! He is resting now in his hospital room.

In surgery

They took Ramsey in to begin the surgery at 12:00. The surgery is for a ventral hernia (abdominal hernia). Nothing like his original hernia... We expect to be here a few days until he is discharged. We had two updates already and things are going smoothly!

Angels Among Us

Ramsey is himself again. It's so great to see that smile on his face. He is entertaining and bright. The more he learns and begins to communicate with us, the more amazed I am. I can't explain why...it's not as if I expected any less from him. I believe it's just that his life and his survival as a whole still amaze me. He didn't just survive, he thrives.

Last week, when he was hospitalized, every one kept telling me how strong I was, how sorry they were, and the like. At the time, I felt unaffected by the circumstances, that is, until the morning of his discharge. Ramsey was napping so I decided to steal away to the cafeteria. As I entered the elevator, there was a man hauling a cart filled with breast milk storage bottles and a cooler. That's when it struck me; his wife ran out of storage space in the freezer! During Ramsey's stay in the NICU, I too ran out of room in the freezer. I remember being both mortified, saddened and slightly amused when they told me I had to find another place to store it. Some acted like I was a lactating superhero, but that had nothing to do with it. Until my son was able to drink, of course the supply would accumulate. As I stood in the elevator, I felt speechless. I remembered so many moments, and I couldn't help but wonder what the "milk man's" story was.  Bottom line- his wife and child had likely been there for a long long time.

As I headed back to Ramsey's room, I heard a familiar voice in the hallway. It was the voice of the doctor on duty the day Ramsey almost needed ECMO. Like that day, his words became a blur; again I was taken back to those first fearful days. Something told me not to look back.

We brought Ramsey home that afternoon, and guess what happened?  He grabbed my cell phone and suddenly the song "Angels Among Us" started to play. I don't believe that was a coincidence. Next a silly kid song called "I Need a DOG" came on....(OK, I don't think there was any hidden message there). BUT, the next song was even better: Rascall Flat's "I Won't Let Go" played. "I Won't Let Go" was released prior to Ramsey's birth. A local CDH mom shared with me that she followed our blog and that she prayed that her angel, Logan, would watch over and protect Ramsey. She felt that the song was Logan's song for Ramsey.  I am comforted to know that there are angels among us, and I would bet one of them is him.

A Hospital Stay and Asthma Diagnosis

Ramsey's cough began early this week. A day later, he sounded so bad I knew something was wrong.  We took him to the local ER where they quickly discovered his oxygen was on the low side (it should preferably be 93 or greater; it was falling into the 80's). To me it didn't seem quite so alarming compared to his NICU days when 80 was good. I recalled the near ECMO day when his oxygen dropped in the 30's.  Still, I didn't want my little guy to be so sick and so upset. Aside from the coughing he was developing a temperature. He threw up several times in the triage area, possibly because he was so distressed over just being there. Let's just say he has an aversion to most scrub-wearing individuals.

We spent several hours at the local ER. They gave him an IV for some fluids and offered some albuterol to help with the breathing. Next, they decided to transfer him to Children's Hospital. Based on the stormy weather, Ramsey's history, and the fact that he was borderline critical, they decided to transport him by air. In typical fashion, I casually told my family that they were "flying us there". I couldn't bring myself to say they were life flighting him. I know it was partly because I knew he was going to be OK, and partially because those words would cause sheer panic to anyone that heard them.

In the midst of it all, my husband Dennis made a surprise phone call from his trip to Canada, near Saskatchewan. We live in PA....so we're talking 2,000 miles apart. I was tempted to lie, instead I told him where we were. I believe at that point, Dennis had a helpless all-out meltdown while Ramsey and I prepared for our flight to Pittsburgh. I told him Ramsey how lucky he was that we were sharing our first helicopter ride together but he wasn't buying it. He did not enjoy the ER experience. The transport team arrived, and ironically we recognized one another; they had also attended church many Sundays at he hospital. They were absolutely great. They assured me Ramsey would fall asleep once he was lulled by the vibrations of the helicopter and thankfully they were correct. The flight was 10 minutes long and he slept the whole way. I can't lie, I was strangely tempted to take his picture on that helicopter...but I decided a photo opp was likely inappropriate.

We arrived at Children's and spent several hours in their ER giving Ramsey more albuterol before receiving a room at 4:30 am. Fortunately, Dennis was vacationing with the husband of our original NICU nurse. (Let's just say Dennis made a bit of a promise as she tended to Ramsey that first critical day) She contacted the hospital, and with my permission, they were able to release info. about his status. She was able to calm Dennis and to confirm that he didn't need to find a way to rush home.

They kept Ramsey for two nights. They determined that he had a viral infection that triggered Asthma. Also he had an ear infection that was causing the fever. Finding out he has asthma was not so much a surprise. I've expected it all along. I just hope that it remains a mild form of asthma, that he will outgrow it and that we will learn when/how to properly treat him.

I have to keep reminding myself that Ramsey's surgery is still approaching. I had been preparing for his hospitalization and now a part of me feels like we already got that over with. June 20 will be here before we know it.

Being at the hospital brought back all sorts of memories...I'll save that for my next post!