Letter Eighteen

January 14th, 2008

Carol, 

The scariest thing just happened. It was 4 in the afternoon and I feel asleep for like 30 minutes I was in the deepest sleep ever because I don’t think I’ve slept in 3 days. It’s so hard to sleep in a hospital. People are in and out of the room every couple of hours. Not to mention the insistent alarms of Noel’s. She has a pulse ox that measures her oxygen level, and monitors for her heart rate and breathing. They never actually pick up correctly so there always going off. 

Well in this sleep I felt like I was out of my body or something, it’s probably from complete exhaustion. But then what brought me back was the alarm going off nonstop. It took me a second to actually come to and when I did it said Noel’s Oxygen was 62. I jumped up and ran over to her half thinking that the monitor fell off. When I got to her she was blue. The monitor was working, but Noel’s lungs weren’t. I yelled out the door to have a nurse come quick. 

That’s when the whirlwind began and didn’t end until 3 AM. In minutes there were at least 15 people in Noel’s small little Hospital room. Nurses were trying to place IV’s and trying to draw labs. Respiratory therapists were in the room discussing what would be best for her. They fit her for a bi-pap, a mask that goes over her nose in order to push air into her lungs. Shortly a ventilator showed up in her room. Pulmonologist came in to consult. Seriously I saw more people in about 15 minutes than I had all day. I was so worried and scared as more people showed up and more equipment showed up.  

Then the decision was made to transfer Noel to the Pediatric Intensive Care unit at about 9:00PM. She had been on the bi-pap for several hours but she was not improving, she was actually getting worse. All of blood work was showing that she was building up more CO2 and working harder to breath. 

I was so panicked as I quickly packed all my stuff preparing to head down to ICU. Noel has never been in ICU so I had no idea what to expect. When we got downstairs to the ICU it was like we were in another hospital. The rooms were twice as big and full of windows. Clear glass sliding doors replaced the regular privacy doors on the main floor. Every patient in the ICU has only one nurse and they sit right outside of their room in order to keep a close monitor on the patient. I felt like I entered a whole new world. 

Everything felt more serious and intense down here. I could tell from my surrounding that Noel must not being doing good to have been transferred down here. I feel so unsure and uncertain right now. This is all new to me. And poor Noel, she is working so hard to breath. Her poor little body is so fatigued and so worn out. I’m sitting on the little bench in her room as I write this. I still can’t sleep and now it’s because I’m full on adrenal and uncertainty. I don’t know what’s coming next. 

Tina 

Letter Seventeen

January 10th, 2008

Heather, 

Hey Friend how are you? I feel like I’m always writing people with bad news and I hate that. I guess this is the chapter of my life that is the hardest with the most trials. I sure hope the next chapter is full of happy experiences and ponies! lol. But I use writing as my therapy as I navigate this crazy ride Noel and I are on.

The last few months have been uneventful, I suppose. She has been eating fairly well. She doesn’t throw up anymore so that’s good news. Thanksgiving was spent with her dads family and Christmas with mine. Nothing big has happened with Noel’s health until now. 

We came to my parents house last weekend to participate in an MDA Muscle walk. I was happy to meet some other families who have children with conditions similar to Noel’s. Sadly we never made it to the walk that was suppose to take place on Saturday morning. Instead I had to bring Noel down to Children’s Hospital. 

I knew she needed some oxygen at least. She started looking a little dusky and was working hard to breath. Then she got really lethargic and could barely stay awake. These were all signs that she needed oxygen so I knew I had to take her in. When I started packing an overnight bag my mom asked me what I was doing, “Doesn’t she only need oxygen Tina?” “Mom,” I said, “ you can never be to prepared for a trip to the hospital with a kiddo like Noel.”

It’s a good thing I packed that bag. We waited in a room in the Emergency Room for 13 hours! When a room finally opened up it was 3 in the morning.  They have Noel on 2 liters of oxygen which is the most she’s ever been on. They also started monitoring her carbon dioxide levels and they said they were dangerously high. So the plan is to keep her on oxygen while we wait for the cultures to come back to see if she’s sick. So for now I’m sitting in a little Blue Chair in room 604 of the hospital while we wait. 

I hope you’re doing alright, hopefully the next letter I send you will be about happy times, after Noel’s back home. 

Love you Friend, 

Tina 

Letter Sixteen

October, 15, 2017

Veronica, 

Finally there is hope! Someone finally heard me out and realized that Noel never got a Nissan when they first placed her g-tube. I went to see the specialist at Children’s Hospital and they finally listened to me. A Nissian is where they change the the function of the valve in the esophagus. It takes it from a two way valve- where food can go down and come back up; into a one way valve so that only food can go down and nothing can come back up. I don’t know why this procedure wasn’t done originally because in most cases when they place a g-tube they also do this procedure. The good news is they didn’t do it for Noel, so this is probably why she’s been having all her feeding issues. So the good news is she is scheduled to have this procedure next week right here at our local hospital; we don’t have to travel!

Update: 

So the procedure is done and Noel is resting. But, unfortunately we are not at our local hospital, we are at Children’s Hospital again. I am so mad and frustrated. I had talked with the surgeon, who was suppose to do Noel’s proceed back home, at length about her muscle disease and making sure that he and his staff would be able to adequately care for Noel. He kept reassuring me, almost to the point where he was getting annoyed, that everything would be fine. I was just extra concerned because every procedure she’s had at children’s they were extra cautious with Noel. So the morning of the surgery we are in the pre-op room and the anesthesiologist comes in and says, “I don’t feel comfortable putting Noel under anesthesia. I just found out about her this morning.” He said he had never worked on someone with the diagnosis of Muscular Dystrophy and there could be serve complications putting her under. He said, “if she was my daughter I wouldn’t want me to preform this surgery.”

I was so mad. This is exactly what I was trying to avoid and what I was trying to communicate to the surgeon about; but he wouldn’t listen to me. After the anesthesiologist left the surgeon came back in the room with his “tail between his legs.” He knew that he had been disrespectful to me and that now he was in the wrong. I couldn’t even make eye contact with him. Not only was I so mad that he didn’t take the time to really listen to me, but now Noel wasn’t getting the procedure that she needed so bad. It is so hard to try to advocate for your child to a Doctor who thinks they know everything and that your some uniformed parent. I get so discouraged dealing with this. I didn’t even sleep the night before because having your little 11 month old go into surgery is terrifying and it was all for nothing. 

So thankfully children’s hospital was abled to fit her in yesterday! I’m so thankful that she finally has this procedure done. It means that she’ll finally stop throwing up all of her food and she’ll finally be able to eat and gain weight! It was also nice that Noel was one of the first patients to be seen at the new Children’s Hospital. Its a brand new state of the art building, so if we have to be in the hospital this is a great one to be at. We’re hopefully going to get discharged later today or tomorrow which means we may be able to make it to your bbq this weekend after all!  I could really use some time relaxing and hanging out with friends after the week I’ve had!

Love you friend, 

Tina

Letter Fifteen

August 18th, 2007 

Cassandra,

I’m so frustrated and so exhausted. Noel is 8 months old and her feeding issues have only been getting worse. It’s been such an emotionally and physically demanding job. I have to pump every three hours, in order to give Noel breast milk into her tube feeding. After I do that I get Noel’s tube feeding ready which includes fortifying my breast milk with extra formula so that she’s getting more calories than just breast milk alone.

By the time I get her tube feeding hooked up and going it’s already been an hour long process. The food takes about an hour to get done. Then, not even 15 minutes later Noel throws up half, if not all of the food I just gave her! After cleaning it up I basically start the whole process over. It’s exhausting and all consuming.  I’ve tried everything I could think and everything the doctors have told me to help her not throw up. But nothing works!

The doctors have told me I lay her down after she eats, that doesn’t work. Then they say sit her up at a 45 degree angle, that doesn’t work. Last time they told me to trying feeding her when she’s sitting up, even that didn’t work. No matter what I do she ends up throwing up everywhere. 

It’s so challenging and frustrating. I can’t even take her to the store let alone to someone’s house because I don’t want to have to clean up the mess in public. I feel stuck and trapped in my house. No matter what I tell the doctors they don’t have any other options for me. I am so discouraged right now. And I just don’t know what else to do. We are suppose to see a specialist next week so maybe they will have the answers?? I sure hope so because this is so difficult. Thanks for letting me vent. 

Tina 

Letter Fourteen

May 28th, 2007

Sarah,

I need to tell you thank you friend for being with me today. This was such an intimidating appointment to go and it would have been nearly impossible to show up today alone. I really needed your friendship and support on such a challenging day. I couldn’t have asked for a better person to have with me at the appointment today.

On one hand, I woke up this morning  hopeful to find out what is going on with Noel. But on the other hand I was scared to know what’s really going on with her. As we sat in the doctors office waiting for the doctor to come in I knew I  needed to be light hearted and cheerful. That’s because I cried all my tears last night. I thought of all the what ifs, I mourned the worst case scenarios. I know I seem lighthearted and easy going to everyone. But the truth is I feel so deep that it’s actually hard to let my true emotions out to others. 

That’s why today, when the doctor said that Noel was diagnosed with Muscular Dystrophy my response was, “That’s ok she can still be in the special olympics.” I was able to accept it that easily because I have already been imagining the worst case. As much as I was hoping that the results would come back as nothing, deep down I knew. I knew that her condition was more than just a traumatic brith. I knew.

I’ve been preparing to hear these words and today I felt ready to tackle it; whatever it may be. Through sports and adversity I’ve been preparing my whole life for these kinds of moments. The moments when I feel like the world is falling apart around me, and this is my moment to triumph over the obstacle. My optimistic nature also helps. I deeply believe that even in the darkest moments you can find light if only you’re bold enough to look for it. 

However, since we left the appointment, I’ve had a million questions come to mind: Wheel chair? Is that what’s in her future? Oh my gosh how do you even live life with a child in a wheelchair? The only thing I knew of Muscular Dystrophy before this was on Jerry Lewis’ Telethon I watched as a kid, and the fire fighters “Fill the Boot’ for kids with MD. I’m sure I’ll become an expert on this disease soon. The doctor said they were very hopeful and that her low muscle tone only seemed to be effecting her ability to move. 

You know I didn’t ask the question; but I couldn’t help but wonder will she ever walk? I don’t know if I really want to know the answer to that. I sure hope she does. It kinda seemed like they were saying hope for the best but prepare for the worst. She’s only 5 months old, that is so hard to do right now.

So I’m just going to focus on the positives right now. Since she’s had her feeding tube for a little over a month now she is finally gaining weight! They told me, even though we’re using the feeding tube for all of her feeds, to keep trying to have her drink a bottle. They don’t want her to loose the ability to suck or not be able to eat when she is older. I am just so glad that we can now focus on more things than spending the whole day trying to get her to eat. 

Thank you so much for being with me today at one of the most challenging appointments of my life. A friend like you means the world to me. I have no idea what this journey will bring but I’m sure glad I have someone like you in my life right now. 

Love, 

Tina 

Letter Thirteen

April 18th, 2007

Mom, 

Thank you for being here for me today. Everyone has finally left Noel’s hospital room and now it’s actually quite. It has been a whirl wind of a day. Today was the hardest day of my life so far. Having your little baby go into surgery is so stressful. I know that having the g-tube is going to be best for Noel so that she can finally get all the nutrition she needs. It’s been a hard choice to make, but seeing her sleeping soundly and getting feed without her having to do so much work gives me a lot of peace. I’m hoping that now we won’t have to have out life consumed with feeding difficulties. 

I am worried though about the muscle biopsy, the doctor did today. They said they normally wouldn’t do it on Noel since she is so young, but since they were doing surgery anyway they might as well get this done while she was under anesthesia. They haven’t told me what the results of her muscle biopsy could be. They said it’s because there are too many possible diagnoses that they don’t want me to get overwhelmed. They also said parents tend to go research the worst possible condition and that would  just create fear and cause me to be overwhelmed. 

On one hand it would be nice to have a diagnosis so we finally know what the heck is going on. But I also don’t want to give up the hope that nothing is really wrong and she’s going to grow out of all of this. It’s such a challenging position to be in; to want to know what is going on, but to also be sacred of the possible diagnoses. I know we can get through anything, I know I am strong and so is Noel. 

Well I’m gonna crawl into my little sofa bed under the window in Noel’s room and try to get some sleep before the night nurse comes in to check Noel’s vitals. I love you mom so much. I will see you in a few days when Noel get’s discharged. 

Love, 

Tina 

Letter Twelve

April 16th, 2007

Susan, 

Thank you for finally listening to me. I have been telling everyone in the Emergency Department that they can’t send Noel home. She is not ok and  needs help. I need help too. I’ve been trying to do this alone and I just can’t anymore. You are the first person who actually listened to me.

If it weren’t for you I would be sitting at home in a ball of tears instead of in this hospital room with one of the pediatric nutritionist. This journey of Noel trying to gain weight has been exhausting. I am still trying to feed every 3 hours, then pumping and trying a bottle of formula all to no avail. The only reason I’m even in town is because I came home to see my family. 

The first two days Noel was doing great, but the last two days she’s been so lethargic and tired. She has even less muscle tone than normal. I brought her here to Children’s knowing you guys would know how to help her. But when they were about to tell me she was just dehydrated and she could go home and be ok, that’s when I about lost it. 

She is not ok! She hasn’t been ok since the day she was born. Of course I’ve been trying to pretend that everything is going to be ok with her and we’ve all just been overreacting. But now I’ve come to the realization that something is really wrong and she needs help! 

I know nothing more about whats wrong with her than when I took her home from the NICU months ago.  Thank the Lord the ER nurse went and found you after my emotional plea about how I couldn’t try feeding her anymore on my own and that I needed help. 

I guess that’s your job though as the Charge Nurse to handle the situations that are out of control. Well things would have been even more out of control if I would have had to leave today with Noel and go home to continue to do this alone.

 I know the nurses mean well, but sometimes it’s hard to not feel like they are just trying to get through their patients and not truly listening to the parents. 

Help is what I came for and now I’m hopeful that that is what I’m going to get. 

Tina