Sunday, May 8, 2016

No more tube!

Friday April 22 finally arrived. This was the happy day that Elsie's gtube was permanently removed! After speaking to our GI doctor late Thursday night and finally receiving permission to remove her tube, I was so excited that I almost wanted to wake her up and take it out right then. But I restrained myself and somehow waited until morning. By some cruel irony, that day just happened to be a rare morning that Elsie slept in until after 9am, haha. She finally woke up and I waited until she had used the bathroom and had a few bites of breakfast before springing the good news on her. 

Our feeding therapists had both warned us that removing her tube might be a little traumatic for Elsie. After all, she has never known life without it. It is a part of her body as much a finger or toe is, so to suddenly remove it might be hard on her. Not painful, mind you, just different and strange. We have been talking with Elsie for the last few months about when she gets her tube out, and talking about how she doesn't need it anymore, but I don't know if she really understood that it would be coming out, for good. So I was a bit apprehensive that morning when I collected all of the supplies I would need to take her tube out. Some parents with tubie graduates suggested having a new, clean gtube available to put into a stuffed animal or doll if the child was upset about losing the tube from their body. I grabbed a new gtube button, a few pieces of gauze, some medical tape, scissors, and a syringe. 

This is what Elsie's Mic-Key gtube button looks like:

The feeding port and balloon port are the parts that are outside her body. The stem of the gtube goes through her stoma (hole in her skin) and into her stomach. It is kept in place by the small, water-inflated balloon that is inside her stomach. The balloon, if properly inflated, keeps the gtube from being pulled out of the stomach. When you want to remove the gtube, either for replacing an old tube with a new one, or to permanently remove the tube like in Elsie's situation, you take a small syringe and attach it to the balloon port. You draw all of the water out of the balloon, and the balloon deflates and shrinks in on itself, and all you're left with is the narrow stem. The stem is easily pulled out of the stomach because there is nothing holding it back now that you've deflated the balloon. It's actually pretty easy to do. 

Once I had all of the supplies ready, I sat Elsie and Evje down and explained to them that the doctor told us we could remove Elsie's tube. I tried to make it a positive, exciting thing. I could tell Elsie was a little bit wary, but with my excitement and Evje's help, she let me lift up her shirt. I deflated the balloon inside her stomach, and gently pulled on the tube. There was a small amount of resistance, but then it came right out. I cleaned her stoma with some water, then rubbed some Vaseline on the surrounding skin and taped a piece of gauze over it to contain any stomach contents that might leak out. We cheered and celebrated, and took many pictures of the special occasion. I offered the new gtube button to Elsie and asked if she wanted to put it in one of her dolls or stuffed animals, but she said "No, I don't need that anymore!"

Last picture of the "tummy tube"!

It's out!

Generally speaking, a gtube stoma closes quite rapidly if the gtube is not in place. It's like when you have your ears pierced, but you don't wear earrings for a long time, and the hole closes. But with a gtube stoma, the closing of the hole happens a lot more quickly. If a gtube is ever accidentally removed, it is advised to get it back in within 20 minutes of removal, because it really does start to close that quickly and becomes very difficult to get back in without medical help. Elsie has had her gtube for almost 3 years, so there was some concern that her stoma wouldn't close all the way on its own and that she would need a surgeon to stitch it shut. However, Elsie's stoma has always been very clean and never irritated; she never had any issues with granulation tissue or other problems that might delay the healing of the stoma. I was pretty confident and hopeful that it would close on its own, but I kept a close eye on it for the first several days to make sure that there was no stomach acid leaking out and that Elsie's skin was protected. 

24 hours post-removal

It is now more than 2 weeks post-removal, and it appears that her stoma is completely closed on its own! She had a very very small amount of leakage during the first hour or so that the tube came out, but none since then. It looks like she has a second belly button where her tube used to be. We're so very proud of Elsie's accomplishments in graduating from her feeding tube, and we love to let her show off her tube-free tummy to all of our friends and family. I'm so happy that Elsie has finally reached this great milestone in her life! She is now free from all medical devices. All that's left is her scars, that remind us of all that she has been through, and all that she has overcome. Elsie is one tough little cookie!

Getting permission to remove the tube!

For some time now, we have been really wanting to take Elsie's gtube out. I wanted it out a month or two after we weaned from the tube back in July 2015, but our doctors were very cautious and wanted to make sure that Elsie could be successful without it. Some criteria for being able to remove a gtube is eating 100% orally for at least 3-6 months depending on the doctor, consistently gaining weight, and able to maintain hydration during an illness without needing to use the feeding tube. Most doctors also prefer the gtube to be left in during cold and flu season, because often a serious illness will cause the child to have a setback with eating and drinking.

Elsie has been eating 100% orally since July. We went through several colds and minor sickness throughout the winter, and then Elsie was hospitalized for 3 days in February for a respiratory virus. During none of these illnesses did Elsie need supplemental food or fluids through her gtube. She was even able to swallow medicine orally while she was in the hospital. The only factor that we were somewhat struggling with was Elsie's weight gain.

Elsie is like her older sister Evje, in that both of them eat enough to survive, but not a whole lot more. They eat to live, not live to eat. To my children, eating is sometimes regarded as a chore to get through before they can go play. They enjoy eating and they like food, but they often only eat enough to abate their hunger before they are off, burning more calories than they have taken in. Both girls are very active; non-stop on the go wiggle worms. It's not a huge surprise to me that Elsie's weight gain has been slow. BUT although it has been slow gain, she IS gaining weight. She has remained on her own curve on the weight chart.

After cold and flu season was over, I began to pursue getting Elsie's gtube removed. I wasn't quite sure who was the authority that had the final say on when it could be removed. Elsie's feeding therapists know her the best, but they are not doctors. Our new pediatrician is great, but when I asked about removing the tube at Elsie's 3 year well-check in January, he referred us to the GI doctor who placed the tube. This was frustrating to me, because we haven't been seen by GI since a few months after Elsie's PEG tube was replaced with her Mic-Key button ... so sometime in the fall or winter of 2013. At that time, he told us that he didn't need to see Elsie again unless we had problems with the gtube, which we haven't, so he hasn't even seen Elsie since she was like 9 months old. Why did he have the authority to tell us that we could remove her tube when he is so unfamiliar with her case? Who knows. The medical world is confusing and frustrating.

Let me just insert here that removing a gtube is not a complicated procedure. I have done it myself at home several times, because gtubes don't last forever and need to be replaced periodically. I was fully comfortable removing her gtube myself, and contemplated taking it out on our own and not telling her doctors that we had done so. The only thing holding me back was that if her stoma (hole where the gtube goes through her skin and into her abdomen) doesn't heal on its own, it would need to be stitched shut by a surgeon. And since Elsie has had her gtube for almost 3 years now, there is a stronger possibility that her stoma won't close on its own and would need the surgery. I've read a few stories of kiddos whose stoma did not close, and there was much leaking of stomach acid and breaking down of skin, and other really awful things. So while I rebelliously wanted to remove her tube on my own, I refrained.

In March or April, we had a lovely informal visit with our wonderful friend Helene, who was Elsie's feeding therapists previous to the tube wean. We had lunch together, during which Elsie ate a small bowl of tomato soup, two slices of French bread with butter, two cheese sticks, a few bites of Caesar salad, and a package of fruit snacks. It was awesome, and Helene was quite impressed. Helene and I discussed removing Elsie's tube, and she kindly volunteered to send a message to our GI doc, relaying how great Elsie was doing with her eating skills.

GI's response was that Elsie hadn't gained enough weight to remove the tube. The last time Elsie had been weighed was back in February ... when she had been hospitalized ... when she had been very sick. So yeah, at that time, her weight was probably down from what it normally was. Grrr.

At the end of April, Evje had her 5 year old well-check, and while we were at the pediatrician's office, I plunked Elsie on top of the scale to get a current weight. I discussed again with the ped the possibility of removing the tube. He was supportive of it being removed, and told me to talk to GI again, letting him know that our ped was supportive of the tube being removed. AND the last thing he told me was that if our GI doc did not agree with him that it was time to take the tube out, that I should let him know, and that he would find another GI doc to approve the tube's removal. Whaaaa?? Oh yes, this is so going to happen, finally!

I called GI that afternoon, leaving a message with the nurse, laying out all of our arguments as to why we believed her tube was ready to come out. Elsie had not needed her tube for eating or drinking since July, she made it through a 3 day hospitalization without needing her tube, and I told them what her current weight was and that our pediatrician was supportive of the tube coming out. This was on a Thursday afternoon, and I was not even expecting a response until the following week at the earliest. However, later that very same night, GI doctor personally called me! We discussed all that Elsie had been through and how she was succeeding. He said that now that he knew her current weight, she had gained enough for him to be comfortable removing the tube. He offered to set up an appointment to remove the tube in his office the following week, but I asked instead if I could remove it at home, to which he readily agreed. He let me know that they generally give the stoma a few weeks to close on its own, and to let him know if we needed a referral to surgery to get the stoma closed surgically. And that was it! We finally had our much-sought after approval to remove the tube!

Monday, February 29, 2016

After the hospital

After we were discharged from the hospital, we were brought an oxygen concentrator by home health. Luckily, the oxygen concentrator has 50 foot long tubing, so that Elsie wasn't confined to a 2 foot radius while hooked up to the oxygen. She was able to go almost everywhere in our house. It was still fairly annoying, because the tube connectors would get caught on things, and she'd get stuck. And we all tripped over the tubes once or twice. But whatever we have to do to help her breathe, we do, so we dealt with it.

We had a follow up appointment with our pediatrician on Thursday, and he checked her oxygen sats to see how she was doing. She was still showing up in the mid 80s, even with her oxygen on, so I'm pretty sure that the reading was off. He wrote us an order for a pulse oximeter, so that we could monitor her sats at home and try to wean her off the oxygen. When the pulse ox arrived, her sats were in the low 90s, and have been getting better every day. By Friday, she went the whole afternoon without 02. We put it back on when she went to sleep that night, because it's typical to de-sat while you're sleeping. And she has been fine without any supplemental oxygen since then. I'm so relieved that she was able to get off the oxygen so quickly, even though it didn't seem very quick to me at the time.

Here's a few more tidbits about our hospital stay that I want to write down before I forget. The nurses all thought Elsie was completely adorable, because I would ask her if she wanted a drink or some food, and her response would either be "Yes please," or "No thank you" in her cute little voice. Even when she wasn't feeling well, she was still polite. Also, there were several times when I would ask her what she needed, and she would say "I need you, mommy". I slept next to her in the hospital bed each night, and she would frequently reach out to touch my arm to make sure I was there. Isn't that the best feeling in the world, to be just what your child wants?

We had several fantastic nurses and techs who took great care of us. One of the nurses was a girl I knew from high school! Ashley Hatch is her name. I'm so thankful to live close to a great facility like Primary Children's, where I know that Elsie will receive the best possible care. The hospital food wasn't so bad, and the facilities in the Ronald McDonald family room, where I took a shower, were awesome. Wish I would have known about that place sooner. In conclusion, they took great care of us, but we're ever so happy to be home.

I would like to make note that throughout her illness and hospital stay, Elsie was able to eat and drink enough by mouth to stay hydrated, and did not need any additional fluids given to her through her gtube or through an I.V. I'm so extremely proud of the progress she has made, and I knew that she would be ok with her oral intake, even if she got sick. Now if we can get her to chunk up a bit more, then we can get her gtube permanently removed. I can't wait for that day!

Sunday, February 28, 2016

3 day hospitalization

It all started last week, when Evje was getting over a cold/cough, and Elsie was starting to cough a bit here and there too. Friday night, both kids had been in bed for a few hours when we heard crying. Clayton went upstairs to check out what was going on, and found Elsie coughing so hard that she was having a hard time catching her breath between coughs. She felt quite warm and fevered, and was coughing a lot, so we calmed her down and doctored her up, and then I let her sleep in bed between me and Clayton so that we could keep an eye on her. We discussed taking her to the emergency room, because I could tell this wasn't just a cold, but decided in the end to try and get some sleep, and see how she was doing in the morning.

After a mostly sleepless night, Elsie woke up Saturday morning feeling fine. Her fever was gone, coughing was minimal, and she ran around the house playing. Unfortunately, as morning turned into afternoon, I could tell she wasn't feeling well. She was clingy, a bit lethargic, and her fever and coughing came back. I decided that, rather than take her to the ER in the middle of the night when she got worse, I would be proactive and take her to the InstaCare now.

I just want to say that I normally am not the type of mom who takes her child to the InstaCare or ER for a cough and fever. I tend to make Evje tough it out when she's sick, unless things get really bad, because it's usually a virus and there's nothing to be done except tough it out. Does that make me sound like a horrible mom? I promise I'm not. But with Elsie ... I get worried more easily. I could tell something wasn't right this time, so I went with my mommy gut and took her to the InstaCare.

After a very brief examination, the doctor thought that Elsie might have pneumonia, and told us to take her to the ER. We went home, I grabbed my phone charger and my toothbrush, just in case we had to spend the night, and headed in to the ER at Primary Children's Hospital.

I was pretty worried that our ER visit would be like the last time we came here, just over a year ago, when we had to wait in the ER exam room for over 3 excruciating hours before they admitted us. Luckily, this time the ER wasn't terribly busy, and we only had to wait in the exam room for maybe an hour before being admitted. Elsie actually fell asleep in my arms while we were waiting, so I could tell she really didn't feel good. She wasn't keeping up her oxygen saturation levels very well on her own, so they hooked her up to supplemental oxygen. I've explained this before, but I'll explain again. Normally, your oxygen levels range from 92-100% saturated; the higher the number, the more oxygen is circulating in your blood. Anywhere below 90% is a cause for concern and will generally call for supplemental oxygen. Elsie's sats were in the mid 80s, which isn't horrible, but she definitely needed some help. After a nose swab and an exam, it was determined that Elsie had human Metapneumovirus.

Metapneumovirus generally produces cold-like symptoms, but for young babies or people with lung problems, it can cause more severe problems like bronchiolitis or pneumonia. Luckily for us, Elsie's lungs sounded remarkably clear throughout the illness, which is great, and it never developed into pneumonia. We thought we might be sent home on Sunday afternoon, because Elsie seemed to be doing better and was off the oxygen for several hours. However, the doctors were cautious and worried that the virus would be getting worse before she got better, as is apparently typical with this particular virus. Since it was still pretty early in her illness, they didn't want us to leave just yet. Which was annoying, but it was definitely good that we stayed. Elsie had to be put back on oxygen later that night, was really coughing a lot, and spiked several very high fevers that scared the crap out of me.

Late Monday night and Tuesday morning was when things were at their worst. Elsie's fever was almost to 104 degrees, and I could tell the nurses were concerned. Luckily she responded well to the Tylenol and Motrin, and her fever went down. But that didn't stop me from having a bit of a meltdown. You see, Clayton was home with Evje, who apparently had developed an ear infection and wasn't feeling well herself, and she was missing her mommy. Clayton had to go back to work early Tuesday morning, so we had arranged for Evje to sleep over at our cousin Shannon's house Monday night, and Shannon would watch Evje during the day Tuesday. However, during dinner, Evje broke down sobbing that she missed me and for whatever reason, didn't want to sleep over at Shannon's house. This is not typical behavior for her. Clayton called me on the phone, and I tried to talk to Evje, but she was just crying so much that I couldn't even understand her, and it broke my heart. In the end, she ended up sleeping at Grandpa Joel's house, because according to Evs, "Grandpa Joel is daddy's dad, so that reminds me of my dad, and I won't be so lonely." I felt so torn up, knowing that my girl was sad and missing me, but needing to be with Elsie in the hospital. I cried a lot, and the doctors probably thought that I was losing my marbles. I asked my dad to come on Tuesday morning and give Elsie a priesthood blessing, and he gave me a blessing as well, and then I didn't feel so bad. Thanks, Dad.

We had several lovely visitors; my sister Ramona and niece Riley visited a few times and brought me chapstick and clothes to sleep in. My parents came on Monday morning and brought me some more essentials, as well as a watercolor book for Elsie and a story book. My dear friend Staci came on Tuesday afternoon with a bag of goodies for me and a basket of toys and treats for Elsie. She encouraged me to go take a shower while she played with Elsie, and I did go, and I did shower, because I smelled very badly. After almost 3 whole days of not leaving Elsie's side, it was quite nice to stretch my legs a bit and look out a window with a view besides the parking lot.

On Tuesday afternoon, things were looking better and the doctors finally started discussing sending us home with supplemental oxygen. We finally got the ok to leave, signed the discharge papers, packed our bags. and then, as I was changing Elsie's clothes before we left, I noticed that she was feeling rather warm again. I debated with myself for a few seconds whether or not I should tell the nurse, or just leave, but I decided to be responsible and told the nurse that Elsie was fevered again. It was up to 103 degrees, so they gave her some Tylenol, made us wait for half an hour to make sure that her fever was going down, and then they finally let us leave. We trooped out to the car with all of our stuff and an oxygen tank, and then we zoomed out of there before anything else could happen to make us stay.

Tuesday, January 5, 2016

Elsie turns THREE!

Happy 3rd birthday to Elsie!

We celebrated with Elsie's favorite meal for dinner, spaghetti. Isn't it awesome that she has favorite foods now? The kid loves pasta.

Next was opening presents, which was super fun. Elsie loves stuffed animals, and kitties, and since we will probably never get a live cat, we bought Elsie a white stuffed animal kitty. She's enamored with it, of course. She also got the movie Bambi, and My Little Ponies, and clothes/books/etc.

Then I had this idea that since Elsie never got to enjoy a smash cake when she turned one, I would make her a smash cake for this birthday! I had all of these visions in my head of her being silly and making a big mess, gobbling up handfuls of cake right and left. We brought the cake out, sang happy birthday, let her blow out the candles, and then told her to dig in.

She asked for a fork.

Haha, what? A fork? It's a smash cake, you eat it with your hands or stick your face in it! Both of my kids looked at me dubiously when I tried to explain. Elsie thought I was kinda nuts, but she (and Evje) put her head down next to the cake and took a small nibble. Then asked for a fork again. I sighed, and gave her a fork, and she did eat.

Well, you can't blame me for trying. At least she's eating cake now! Don't ask me where my prim and proper girly-girls came from; hopefully someday I will have a little boy who won't be afraid to get dirty once in a while.

Tuesday, November 24, 2015

Neonatal Follow-up Clinic appointment

Today was one of my most-looked-forward-to appointments: Neonatal Follow-Up Clinic day!

The reason I love these appointments that come once a year is that Elsie is looked at and evaluated by several specialists in different areas. I really like knowing how she is doing compared to her same-age peers, and what things we need to work on. This place has such great resources for parents and families in need, and they truly want the best for each child.

Today's appointment went very well. Elsie was seen by a speech & language specialist, got her vital signs taken, did cognitive testing, and was seen by a developmental pediatrician. All of the people we encountered were thoroughly impressed with Elsie. She is at her age-level or above for both speech & language and cognition. The lady who did the cognitive testing was stunned when I told her that Elsie had had Grade 2 and Grade 4 brain hemorrhages.

I talked to a few people there about when we could remove Elsie's gtube and who had the final say in authorizing its removal. We haven't used her feeding tube since July. I can't even imagine using it ever again! Elsie is doing so well eating orally. She eats like a typical 2 year old in every way. I know there are some doctors who recommend leaving the tube in until after cold/flu season is over, just as a precaution in case extra fluids or medicines are needed if the child gets sick, and that is reasonable. It won't be the end of the world if we keep it in until spring. I don't think it's necessary, but it won't be the end of the world. We all decided that I would call the GI clinic at Primary's, where Elsie's gtube was placed, and ask what their recommendations were.

I called the GI clinic this afternoon, and the nurse I spoke with didn't see any reason why we should keep it in, but she sent a message to the GI doctor to get his approval. Since it is almost Thanksgiving, she said they might not get back to us until Monday, but that they would call us back when the doctor responded. This possibility of being done with the feeding tube very soon is very exciting to me. Again, if the doctor says that we should keep it in until spring, I'll be a bit disappointed but it's not the end of the world. After all, spring will be here before we know it!

I'm so proud of my sweet little girl today. Elsie is incredibly smart and has overcome so many obstacles. I love her so much!

Tuesday, November 10, 2015

World Prematurity Day

November 17 is officially "World Prematurity Awareness Day", so I've been seeing a bunch of articles in my news feed on social media lately about preemies. One thing in these articles that always strikes me is when they discuss "viability", or in other words, the cut-off date between being too little to save vs. working to save the child's life after he or she is born. Being "viable" has typically been set at 24 weeks. When a child is born at 24 weeks or later, the doctors will do everything they can to help the tiny baby survive. Before 24 weeks, it is generally a decision between the parents and doctors if they want to try to save the baby, with the knowledge that if the baby lives, she will almost surely suffer from physical and mental disabilities throughout her life.

While I was reading an article on prematurity this last week, a thought came to me that I hadn't thought of before. Did any of our doctors ask us, before Elsie was born, if we wanted to try and save her? Or did they just do it? I could not remember. So I asked my live-in memory bank, aka Clayton who remembers everything, and without hesitating he responded "Yes." The doctor at our local hospital, before she summoned the helicopter to come save us, asked if we wanted to save our child. It jogged my memory a bit, and I remembered.

She asked us if we wanted the doctors at the U to try and save our baby's life. At this point in my pregnancy, I was 23 weeks and 1 day pregnant (Every single day that they remain safely inside their mother's womb is hugely important for a micro-preemie, so that's why I differentiated that I was 23 weeks and 1 day. Elsie's development would have been drastically different had I been 23 weeks and 6 days pregnant, even with just 5 days more inside of me.). Elsie was not yet in the "viable" category, and the doctor told us that she only had a 25% chance of survival. And if she were to survive, she would almost definitely have a range of physical and mental disabilities. Did we want the doctors to try and save our daughter?

Without hesitating, even though our hearts were breaking, both Clayton and I firmly answered yes. We wanted them to save our daughter's life.

I know now that Elsie is kinda special, in the fact that she doesn't have any lasting effects of her prematurity. She has truly defied the odds, especially considering the bleeding that happened in her brain in those early days. But even if she had disabilities, would we love her any less? Of course not.

Every day, we are thankful for the medical miracles, modern medicine, and skilled nurses and doctors that kept our dear child alive, despite the odds that were stacked up against her. Elsie was not considered "viable", according to the technical terms. She should not have survived, but she did. May she always be an example to keep trying, keep persevering, and overcome the obstacles in your life. Miracles happen.