Tuesday, April 22, 2014

Easter

Easter 2014
 
We had a great weekend celebrating Easter. We took the kids to the local grocery store for an Easter egg hunt, coloring contest, visit with the Easter Bunny, and cookie decorating. It was such a great time. A free event that was wheelchair friendly! It was great being able to have Logan participate in the activities.
 
He really loved the Easter Bunny. He just stared at the Easter Bunny and loved his/her soft fur on his forehead. After we had photos with the Easter Bunny we took the kids to decorate cookies. The Easter Bunny made its way over to that area and again Logan laid eyes on him/her. I wonder what he was thinking! He seemed content and happy.
 
The atmosphere was great. It wasn't too loud or overwhelming for him. Lauren and my niece Madelyn also had a great time. The activities were perfect for them as well. Of course they all made off with a ton of candy and a cookie full of icing!
 
I actually went up to the store manager and thanked him at the end. I was choking back the tears! I thanked him for putting together the event and told him how Logan friendly it was. He mentioned that he saw Logan and the Easter Bunny from upstairs in the store. He smiled and mentioned how great it was to see.
 
Later that afternoon we decorated Easter eggs. Logan wasn't really into it. He slept in my arms most of the time. He did wake up to decorate a yellow egg and that was about it. Most of the weekend he was pretty infatuated with his tongue. He seemed uncomfortable and a little out of sorts. He bit his tongue a few times. Since then it has seemed to resolve. Who knows!
 
I don't have the photos but the kids also received great Easter baskets. Logan got a hulk man that speaks to him, some arts and crafts, a book, and a bubble blowing machine. Lauren got all sort of girly stuff and tons of candy!
 
We also had the kids out on a gorgeous Easter afternoon for an Easter egg hunt. Logan got a few eggs along with his sister and cousin.
 
All in all, it was a great weekend. I love when we have the opportunity to do a Logan friendly activity. I feel like a better parent when we involve him! Thanks to my thoughtful husband for mentioning the idea!
 
 

















Sunday, April 13, 2014

Hospitalization



Logan had surgery a couple of weeks ago. He had a Nissen Fundoplication. This is a surgery designed to basically wrap part of his stomach around the esophagus. This then tightens up the espophagus to prevent reflux and vomiting.

Currently, Logan is fed into his jejunum. This is the beginning of the intestines. We were bypassing most of his stomach for feeding as we found he would vomit feedings/medications if given too much volume in a short period of time. His GI Doctor felt that over time it would be best to move to only a G Tube instead of the GJ Tube he had. This would decrease the need for going to the hospital every couple of months for the GJ Tube to be replaced under fluroscopy (radiation/xray). This would allow us to feed Logan into the stomach, change the tube at home, and decrease the need for continuous (almost 24 hour) feedings.

We met with a surgeon a few months ago and came to the agreement that this was best for Logan. A surgery date was set. So on that day we set out for the hospital knowing we would spend a couple days in the hospital. The plan was for a laporoscopic procedure unless complications arose.

The morning was pretty uneventful. We made the trek to the hospital in morning rush hour traffic. We arrived to the surgery waiting area and were quickly greeted. We were quickly escorted back to a pre-op room. Our nurse was great. She had the usual amount of questions, and we were ready.

After consulation with the anesthesiologist and surgeon, I was able to carry Logan back to the operating room. He was asleep, so I laid him on the table and left him in the care of the surgery team. While waiting in the OR lobby with Joel, I realized that I may have been premature leaving him. I get so nervous in those situations. I see all the medical equipment and quickly become uncomfortable. I am an ER nurse so this area should seem normal but it never has felt good to me. I didn't know if I was to stay or go. In the past, when he is awake, I have stayed for a short period of time. Just long enough for them to put the gas mask on and make him sleepy for surgery and then I was escorted out. This time I wasn't sure what I was supposed to do so I laid him down and left him in the care of the team.

Joel and I waited in the lobby as usual. The staff member in the lobby informed us that his surgery was just getting started. This was at least 45 minutes after I had left him. I was worried and immediately thought I should have stayed with him in the OR until they had kicked me out. I told Joel, "he must be a hard IV stick today". Well come to find out, he was. Four sticks later and they were able to proceed with surgery. The surgery itself was quick. Logan had five laporoscopic incisions. All had internal stitches. Our surgeon reported he did well throughout. Unfortunately the surgeon was not working the rest of the weekend, so we were left in the care of his co-workers.

Post op went as it normally does. The nurses asked me to come to the post op room to make sure he was to baseline. After we established that, we all went to his room on the floor. This hospitalization was done at a different children's hospital. We went to this hospital as I found this surgeon to be a good one. He only did surgeries at this hospital instead of where we normally go. I was a little nervous going in to it as we did not know how things ran at this hospital but thought it would be similar as they are affiliated.

Things were very different and honestly, not really what I had hoped for. I am not here for hospital bashing. This is only a reflection of our one experience. We truly had a great experience, but it was very different than what we had been through during the past.

I am an ER nurse in a teaching hospital. I understand what it means to have resident doctors involved in the care of patients. I always thought it was hard on the patients as they had to tell their story multiple times but thought, "hey, they are getting great care because so many eyes are looking out for them". I still believe the care in a teaching hospital is top notch but unfortnately for me, it impacted our satisfaction. I had to recite Logan's medication list more times then I can count despite having a well written list that any staff member could make a copy of. We went through the list with the pre-op nurse extensively but on arrival to the floor, we had to do the same again with the nurse, then the resident doctor, and then the nurse again as she needed to clarify that the resident placed the right orders.

The pediatrician (hospitalist) came to see Logan quickly. He was nice but only got a few questions in before the resident arrived. He quickly excused himself in order to allow the resident to do her exam and assessment. She was nice and respectful. She was thoughtful of the fact that we had recited Logan's story over and over again in the past. She still wanted the details which was fine by me. I want people to know his story. It helps them learn his quirks and special needs. The resident was kind but obviously seemed out of her element. At one point she did admit that she was a family practice doctor in training and that Logan was out of her normal comfort level.

The first night in the hospital was tiring. Joel left as we were getting a snow storm and didn't want to get stuck in traffic. We had a very nice and eager nursing student that evening. She was very kind and did a great job. Logan's IV stopped working so the resource nurse had to place another one. Three sticks later we had a working IV. Logan was pretty restless for the first half of the night and after that I passed out and our night shift nurse did a great job caring for him.

Logan's tracheostomy secretions were very thick and yellow after surgery. The anesthesiologist gave him a medication to dry up his secretions. It did the trick so well that even the next morning they were thick. I was on high alert as we could not give him his vest treatment the night before as his abdomen was so sensitive. He was so lethargic from all the pain meds that he wasn't moving much or coughing. Thankfully by mid-morning things were improving.

I was very nervous even going to the bathroom or falling asleep while we were there. The rooms at the hospital are very nice but are so quiet the nurses can't hear him and don't see him very well through the window. Plus we were on a floor that doesn't take care of tracheostomy kids very often. Now that he is having seizures, I am scared to even leave him to go into another room. So I was stuck in the room until Joel arrived at lunchtime the next day.

As alway, the elusive discharge date is an interesting game to play. We always put in our guesses as to when Logan will go home. Most of the doctors felt he would stay a few days. I thought we would at least stay two nights. The surgical resident saw Logan in the morning and made it sound like he would stay another night. The Pediatrician and his team came a little later and felt there was no reason to keep Logan. He said there were some kiddos in the hospital with bad viruses so it would be best for us to get home as soon as possible.

I was frustrated when we were discharged as the doctors didn't want us to start feeding Logan into his G Tube. I was confused. I thought that was the goal of keeping him in the hospital, to start feedings and see how he tolerates. I am not sure if it was a miscommunication between our surgeon and myself or if the different doctors working had a different plan. It wasn't the end of the world but I was frustrated not knowing what our plan would be. Thankfully our surgeon called in a few days to check in. He was suprised at how quickly Logan recovered and thought he may still be in the hospital when he returned on Monday. Logan is a rock star!!

So now we are advancing feedings into his stomach very slowly. He hasn't been fed directly into his stomach for over two years. I'm sure his stomach is a little shocked. When we do feed him, he is tolerating it really well. I am praying his current feeding tube lasts another week. We aren't quite ready to go away from the GJ Tube and move to the G Tube. Crossing my fingers!

Logan is still having about 2-5 seizures a day. They are upsetting as he "screams" through his trach when it happens. The seizures have occassionally been more vigorous and lasting longer. So far
never more than 30 seconds. I am so scared he will have a big seizure requiring rescue medications. Prayers he doesn't. Logan's neurologist is working to increase his medications to try and control the seizures. We are about a week or so in from the last change and have seen little to no improvment.

On a happy note, Logan's new bed is arriving tomorrow. It is still like a crib with hospital bed qualities. It will be twin sized and have the ability to have the head raised. I am excited because now I can crawl in with him and cuddle. It will be a tight fit in his room but who cares!

Now that the weather is warming, Logan has been out on a few walks with his nurses. I can't wait to get him out and about now that we aren't in a deep freeze!