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!

Wednesday, March 12, 2014

Seizures

Since December, Logan has had episodes that seem to be temper tantrums. They began with less frequency and we thought were related to irritation from oral secretions. Since the start of them, they have increased in frequency and are more vigorous. 

Last week I sat on the couch holding Logan when he had an episode. He started thrashing and crying through his trach. His heart rate went high and his eyes rolled up and over to the right. It didn't last long, but afterward he was agitated and did not seem himself and then became tired. 

I am an ER nurse and have seen many seizures. This episode, did not look like a classic seizure but all the signs were there. I cried afterward and couldn't understand why. I finally realized how much the episode bothered me when I cried all the way to work. It felt like PTSD from Logan's big febrile seizure in 2012. It was not to the severity of that seizure but for some reason brought a lot of the feelings back. 

Before I left for work that day I called the neurologist office to tell them of my concerns. The nurse listened and said she would run it by Logan's neurologist. After I arrived to work they called with an appointment for a 12 hour overnight videotaped EEG. We scheduled it for the next day.

So I spent the night with Logan at the sleep center. Poor bubba was hooked to all sorts of wires. He had a very uneventful night. He had zero episodes until we were about to finish the study. The episode was very short and I felt very defeated. 

Today I received the results. A year ago, his EEG showed that he had tendencies for seizures in one part of his brain (the temporal lobe, which one, I can't remember). Today they said he now has these tendencies or can be at risk for seizures from both sides of the brain. They also noted that the one episode he had during the test was a seizure. 

So now we start by increasing his seizure medication dose in hopes it controls the seizures. We will watch closely and keep in touch with his neurologist. 

This information was very hard to hear and I'm doing my best to keep it together. Joel and I both agree that this was to be expected but that makes it no easier. To me it means we are closer to worse. I worry that his brain degeneration is progressing. It isn't fair that we can't fix it or slow the progression. He deserves a chance at life as much as anyone else. I am sad, mad, and scared for what the future holds. I don't want him to suffer from seizures. 

We could use some extra prayers and suppor right now. At least Ieast I could! Logan is doing really well otherwise. I am in Orlando for a conference an before I left I asked him if he wanted to go to Disney World and see Mickey. He looked me in the eye and with his talking valve on made a very purposeful noise. I think he wants to go! Maybe some day. I will keep you all posted on the new medication change. 

~Rachel 

Saturday, February 22, 2014

More Tests


I heard from genetics this week that insurance will cover further mitochondrial testing. Thankfully Baylor College still has samples from Logan. Makes the process much smoother! They are estimating 70 business days for results. If it really only takes that long, it will be one of the shortest turn arounds for results we've had so far! I hope this finally gives us answers. 

Logan had yet another feeding tube issue last weekend. It was loose in the morning, meaning it was pulling away from the skin. We suspected the balloon that holds the tube in his body broke and it did. I have no idea how this keeps happening. We all work very hard to protect his tube. I could write paragraphs on all the ways we keep his tube from getting pulled! 

Anyways, after a visit to the ER last Saturday, we learned that hospitals don't always have supplies. They were out of his size feeding tube. They did have the size at the other children's hospital across town but the radiologist was leaving soon and there was no radiologist at the other hospital to put it in. They don't have a radiologist in house 24/7. Big bummer! We were initially told we would have to be admitted to get Logan IV fluids until the tube could be replaced. I ended up convincing the doctor to take an X-ray to see if the tube was still in far enough. When we noted the problem at home we immediately taped it down. The X-Ray showed it was in good position so we took him home with a lot of tape and was able to feed him. On Monday the tube was sent over from the other hospital and it was changed. 

Logan's surgery to have a Nissen Fundoplication can't come soon enough. At the end of March, he will undergo the surgery. The goal of this surgery will be to allow Logan to be fed into his stomach versus into the intestines. This means he will have a feeding tube that we can change at home and Logan will have the ability to absorb food and medications better. We are hoping to only be in the hospital a couple of days. Fingers crossed! 

Otherwise all is well here. We just had another snow-maggedon! About 10-11 inches in one night. Thank goodness for snow blowers and husbands! The roads are still ice and snow packed as now we are moving into a polar vortex! Who hoo. I am adding a few pictures from this past week. Hope everyone is well.










Sunday, February 16, 2014

More results

So we found out two weeks ago that Logan's pending DNA sequencing was back. I have been given so many random timelines as to when this test would be complete. We were told about a month ago, that the results would not be back until July. Suddenly results appeared! This test was a two step process and we were on the second leg. Well, the second set of testing came back unremarkable. No surprise here. I just knew this wasn't going to be the answer. We started this testing in October of 2012. Since then, so much has changed. Logan is so different. We have learned many new things about his unknown diagnosis including the onset of brain degeneration.

We have learned that he and his cousin Sarah, who passed away at the age of two and a half are most likely to have the same medical problem. Their brain MRI's are very, very similar. This points to Logan most likely having an inherited disorder from me as it was my sister who gave birth to Sarah. 

Our neurologist at Mayo Clinic thinks the answer may lie in the mitochondria. These are the powerhouses of every cell. Most children and adults with mitochondrial disorders have progressive worsening of their disease process including loss of motor function. Logan shares so many similar symptoms and a similar path as many children with mitochondrial disorders. We are waiting to hear back as to whether insurance will cover this testing so for now we wait as usual! 

Valentines day just flew by. Logan had a celebration at school. He brought valentines from the movie Planes and some bubbles. I always like to buy the kids a few things for the holidays. It is so easy to shop for Lauren; candy, candy, and toys. For Logan; no candy and really no toys. He can't pick up toys and play with them and to buy an adapted toy, it's at least a hundred bucks and most of the time they don't work well for him. So I ended up buying him a movie and Lauren found him this cute caterpillar stuffed toy. His nurses give it to him to snuggle at night. It is the perfect size to cuddle with! 

I have come to dread holidays more and more. I feel inadequate. Logan gets barely anything while Lauren is spoiled rotten. I have no idea what he wants or likes. I think he likes music, movies, and books but really I have no clue. He should be playing with trains and climbing all over the furniture in the house. It just isn't fair. We have so little to choose for him and so little to entertain him with. And it is impossible to know if he enjoys what we do play with. All I know is that when I hold him in my arms and he snuggles in to my neck, he is happy. He is relaxed and all is okay. 

Easter will be up next and I welcome any ideas for gifts! I'm sure many people will say it's not about the gift and that holidays are about so much more. That is easy to say, but when you have a five year old at home that gets to participate in the traditions like so many other kids, it is hard to stomach not being able to treat your other child the same. We try to adapt things to him to make it similar but nothing really compares. It hurts so badly not to be a able to provide the same experience. 

Once again, I blab and end up in this negative place. I can say I don't talk this negatively every day (don't ask my husband!). There is something a out this blog forum that just pulls it out of me. I spew thoughts onto this artificial paper and tears stream down from my face. It is therapeutic and torturous all at the same time! 

P.S. I haven't even started on the topic of Logan's feeding tube issues. Let's just say his tube is being held in by tape with the hopes that the hospital can get his size feeding tube ordered and get us in for an appt. ASAP! More to come on that whole mess!