Open Sesame

Another chest X-ray was taken at 5 this morning. (Why all chest X-rays must be taken between 4 and 5 am in the PICU is a mystery to me.) At 6, the nurse woke me up and asked if I wanted to see the X-ray. I jumped up knowing it must be good news. They don’t want to SHOW you the bad news. They start that off with “the look” followed by “the sigh.” The computer screen showed yesterday’s X-ray next to today’s and YES, the lung is open. Start the Choir, release the doves, and dance. AMEN! Today, we will be staying in the PICU with the higher vent settings and aggressive chest treatments, but hopefully tomorrow, we will try to get back to the regular settings on his home vent. We thank you so much for all the prayers!


Honk, Honk

Thanks to everyone’s prayers and some aggressive chest therapy and suctioning, Benjamin is looking much better. Tomorrow morning, he will have another chest x-ray. If there are no further changes, Benjamin will have a bronchoscope. He has had two before, so this is nothing new. Based on how much he is moving around, I expect good news. 🙂


Flip, Beat, Suction, Repeat

During Benjamin’s 8 am feed, he started to look a little agitated and pale. Since his heart rate was hitting 190, I called in the nurse. She immediately called in assistance and they began bagging and suctioning Benjamin. For about 20 minutes (felt like eternity), they suctioned getting up thick and yucky secretions. Thinking they got most of it and needing to give Benjamin a break, they put him back on the vent. Within seconds, Benjamin’s sats began to drop. They called in the physician and people came jogging down the hall. They began bagging and suctioning for another 20 minutes or so sucking out more sticky and yucky secretions. They would flip him, beat his chest, and suction, then repeat. This time they were able to put him back on the vent comfortably. Another x-ray was taken, and with all the suctioning, beating, and flipping, the top of his lung has opened some. Everyone was amazed. Hopefully, now the lung can begin to open up. If not, they plan on doing a bronchoscope (tube down trach to lungs to clean everything out) tomorrow.

Benjamin looks exhausted, but maybe now with a clearer airway, he can rest a little easier.


Holiday Transfer to PICU

Last night around 11 pm, I noticed That Benjamin looked a little pale. He only had slight changes in heart rate and sats, but a momma knows when something is wrong. I called in the nurse to come assess Benjamin, and along came an army of people in scrubs and white coats. It is nice to be heard, and listened to. As soon as they pulled back the blanket to listen to his chest, I knew by the flatness of his left chest wall that his lung had collapsed. The residents listened, and called in for a chest x-ray. After the X-ray, the resident called me over to take a look at it, and just what I had feared, the lung had collapsed. She called PICU, and we were quickly transferred. He was placed on the hospital vent, and settings were slightly adjusted. (Increased the PEEP-positive end expiratory pressure)

Benjamin’s color looks a little better, but he is still sleeping all day. There was no change in the lung this morning on X-ray. They will continue various techniques to try to pop the lung back open. Please keep him in your prayers. It is so hard to watch him sleep all day, and I am so ready to see that smile.


Christmas Virus Update

Though we are still waiting on a lab confirmation for a bacterial infection, the decision was made to go ahead and start antibiotics. It looks as though there are signs of pneumonia in the left lung on xray. Physicians will only use antibiotics when absolutely necessary to avoid Benjamin becoming resistant, but since Benjamin hasn’t showed much improvement today, we agreed to go ahead. Benjamin slept most of the day, only opening his eyes briefly during treatments or feedings, and then going right back to sleep. Hopefully tomorrow, we will see bigger improvements.

I have always believed that people are put in your life for a reason. I also believe that God knows just what he is doing when he nudges us to send a message to someone or make a call. Every time I feel a little down, it seems as though I get a call or message from someone that brightens my day. Today, sitting alone in the hospital with Benjamin, I read a poem that made me cry and made me smile. This poem was written by an aunt (Lisa Nicole) of another little boy (Luke) that happens to have Myotubular myopathy. His mom (Diana) reposted it today on his fifth birthday. 🙂


The Christmas Virus

Boy were we wrong when we thought everyone was recovering from their illnesses. Today, instead of a Christmas wreath, our door at Ochsner holds PPE (personal protective equipment).

After Isla’s episode Saturday night and Benjamin’s fever Monday, soon started Lennon at 3 am Christmas morning and a one time repeat performance from Isla. Isla slept through Christmas morning and Lennon slept through Christmas lunch.

Wednesday, everyone looked to be healthy, and we headed back home from the country after a wonderful Christmas celebration. Healthy, we were not. That night, KC started to get sick and by the next day, it was my turn. (We just knew we had beaten it) With no nurse on Thursday, Lennon and Isla went to daycare, and Benjamin and I laid around the house. I literally laid down while feeding him. I could barely stand. Benjamin slept most of the day. I was a little concerned, but since he had fever the day before, I figured he was just recuperating. Well, around 8 we went to wake him up to feed him and he wouldn’t open his eyes. He was very pale and lethargic. I immediately made the decision to take him to the ER and we were on our way.

After multiple tests and numerous attempts at an IV site, he finally received some fluids and started to open his eyes briefly. He was back! We were moved into a room around 1 am and are waiting for more test results. Right now, we are assuming that Benjamin has the same stomach virus as the rest of us (and now extended family. Sorry.), but they are running additional tests to make sure that everything else looks ok. I was told we will be going home when Benjamin gets closer to baseline.

We pray for a speedy recovery to ring in the New Year.


The Journey

Presents are wrapped, batteries are bought, and a few toys have already been played with. (Wish I could insert a pic of KC with the Princess Mic stand). Christmas just isn’t Christmas until you see it through the eyes of a child. I am so excited that I am having trouble going to sleep.

Of course, our Christmas week didn’t start as planned. After a night of cleaning throw up (Isla), and today wiping down Benjamin with a cool rag to bring down his fever, we are finally on the mend and ready for Santa. In previous years, I have always been so ready to skip to Christmas Day and to get to opening presents. (Yes, I am a little spoiled) This year has been completely different.

I read a quote earlier in the month and I am paraphrasing, but it talked about realizing that some of the best moments are found on the journey, not just at the destination. Though cleaning up after sick children is never glamorous, and I had to miss a few Christmas events because of it, I really enjoyed spending the extra time with the kiddos I would have missed otherwise. Yesterday was actually the first time that I was able to enjoy a 5 hour car ride with the kids. I was not in a rush to our destination, stressed about time, and concerned about how fast or slow KC drove. I was actually able to enjoy the journey, more in tune to Lennon’s and Isla’s funny comments, as well as, sweet glances and light conversation with KC while the kids napped. I repeatedly stepped back, took in the moment with a mental picture, and thanked God for every second I have with this awesome family of mine. Remember… it is what happens on our journey that eventually determines our destination.


Pictures With Santa

Tuesday was Lennon’s picture day with Santa at school. I knew I wanted to take Isla to have her picture taken with Lennon, but I wasn’t sure if I wanted to take Benjamin. The day before, it was decided that Benjamin would also go to have his picture taken with Santa. I knew that if I didn’t do it now, it might be difficult finding time to have Lennon, Isla, and Benjamin together to have their picture taken with Santa somewhere else. Benjamin’s nurse and I went back and forth on if I was going to ask Santa to hold Benjamin. It took some members of our family and friends months to be able to hold Benjamin, how could I expect a complete stranger. On the other hand, he is Santa. 😉

Lennon woke up early Tuesday morning excited about her pictures. She woke up ready to get dressed and Isla followed behind. Starting at seven, we were ready and out the door at 8:25. This is impressive for us, especially with everyone dressed up in their Christmas best.

We arrived at school and anxiously waited for pictures. Lennon was so proud to have her sister and brother there. When they are not fighting, they truly love each other.

We received the word that Santa was ready, and the school allowed us to go first. (Thank goodness) My plan was to pull Benjamin up next to Santa in his wheelchair and have Lennon and Isla sit in Santa’s lap. By now I should know that life rarely goes as planned. I scooted Benjamin up, and the photographer asked if Santa could hold Benjamin. I said, “of course” and took a quick look at Santa’s face. Priceless! Santa had a look of worry, nervousness, and anxiety, but never hesitated to hold him. I placed Benjamin in Santa’s arm, and Santa barely budged. Santa let us know if Benjamin’s head was moving so we could make sure to reposition him.

Benjamin was the easy one to deal with. Isla, on the other hand, screamed as if Santa haunted her every dream. After multiple attempts to have her stand in front of him, I ended up in the picture, sitting in front of Santa, holding onto to Isla so she wouldn’t run.

By the time we arrived back home, we were all exhausted, and it was only 9:30 am. Sometimes the most hectic of times, lead to such unbelievable moments. Photos soon to follow.