With EoE, Allergies, Asthma and a G-Tube


February was a bad month for us. Grab a cup of coffee and settle in for a long story.

About 3 weeks ago Charlie came home from school and had a snack. After he ate his snack I noticed he kept itching his eye. I figured he had rubbed food in his eye and it was irritated. So we washed it off. By bedtime it was producing gunk. When Gage had his peanut butter incident his eye produced gunk too. So I thought that was all it was. We did briefly think maybe it was pink eye. We figured we would know the next morning for sure. We woke up Friday morning and it wasn’t really crusty. The eyeball itself was a little pink but nothing more. I kept him home from school just in case and called the doctor. I asked if I could use the eye drops on Charlie that I had used on Gage for his chalazion. The nurse called back and told me no that they would call something in for pink eye specifically. My parents  happened to come visit that weekend, I feared they would leave with pink eye. As the day went on Charlie’s eye looked ok. Dad and I went to pick up the prescription. It was $78! I declined the eye drops and called the nurse back asking for a generic to be called in. She found something that wouldn’t cost nearly as much. I just couldn’t imagine spending $78 on eye drops especially if it wasn’t pink eye. Well that night at bedtime his eye started making gunk again. We decided it was pink eye and started the drops. The next morning it was in his other eye as well.  I have never seen pink eye and could not believe the gunk an eye can make. It was so gross. Thank goodness the eye drops kick in quick.

On Wednesday, five days later, Gage had pink eye. On Thursday he tells me his ear hurts. We head into the doctor right away because his ears never hurt. Double ear infection. So he starts a round of antibiotics. A few days later Tinleigh’s eyes start making gunk and were a little pink. They didn’t produce nearly the amount the boys did and were never swollen or crusty when she woke up. The nurse suggested she had blocked tear ducts. We didn’t treat it, but now looking back on it, I think she had a mild baby version of pink eye.

That weekend Charlie started coughing. The breathing treatments started. Then he ran a fever on Monday after school. So after dropping Gage off at school on Tuesday I ran Charlie to the doctor. Double ear infection! That day when I picked up Gage from school Charlie said “Hey Gage, I gave you my pink eye and you gave me your ear infection!” Then they both giggled. I didn’t find it so funny.

Wednesday morning Nathan left and wouldn’t return until the following Wednesday. I would also like to point out that we have no family around to help out, they’re all 12 hours + away. We have a few friends in the area, but they all have kids whom we didn’t want to infect! The morning Nathan left Gage started wheezing and coughing with a fever. Then Tinleigh started coughing and running a fever. We went to the doctor and they tested Tinleigh for strep. The strep test came back positive and the doctor said Charlie probably also had strep because they had the same exact cough. They didn’t test Charlie though because he was already on an antibiotic. Tinleigh started her antibiotic. They didn’t test Gage for anything because he was still on his antibiotic which was coming to an end. That weekend I had to call the doctor on call to see if I could give Tinleigh albuterol. She was starting to wheeze with her cough. This broke my heart. Neither of the boys started wheezing this little. By Monday Tinleigh was a lifeless rag doll. I rushed her in to the see the doctor first thing Monday morning.  Her breaths were at 100 per minute. They should be down around 35ish. Passing the doctor in the hall the nurse mentioned this and the doctor literally dropped everything and followed us right into the room. They suctioned Tinleigh’s nose and gave her a few breathing treatments. We got her breaths down to the low 60’s but the doctor wanted her tested for rsv and a chest xray for pneumonia. While we were there I had her listen to Gage too. She said he sounded tight. We had the tests done for Tinleigh and the rsv came back positive and the xray showed she had bronchiolitis.

I’m starting to stress over these sick kids by myself. Sunday I also started a cold which quickly turned into bronchitis. Monday night I started at 4:30 – fed them all, bathed them all and everyone did their breathing treatment. By 7:30 I had not stopped once and I had them all in bed. Three hours just to get to bed! I was wearing out.

Tuesday we went back to the doctor because Tinleigh was dehydrated. She wasn’t eating for me and not producing enough wet diapers. It was to the point that I was putting formula in a medicine dropper and putting drops in her mouth trying to get her to eat. I knew she needed fluids, an IV. So after the doctor examined her she asked if I wanted her admitted. I told her no I thought I could handle this. I’ve had sick kids on breathing treatments before, I knew I could do this. She just needed some fluids in her and we would beat this. So over to the hospital Gage, Tinleigh and I go. Because things are never easy for me there is a hospital story. I’ll cut it short. After finally getting us to a room someone came to “make things right”. She gave us free movie passes and brought us free lunch. Luckily without telling her Gage’s allergies it was a tray of food he could actually eat. So we got Tinleigh’s IV fluids and headed back home. She had a bath that night and was happy and feeling good. Gage had been so good all day, that night I realized why, he had a high fever. He felt like crap.

The next morning Tinleigh wasn’t good at all. There wasn’t anything I could do for her at this point. I called the doctor office and let them know I wanted to admit her to Children’s hospital. They told me to come on in to the office so they could see her so we wouldn’t have to go through the ER when we went to the hospital. Into the office we go. They agreed she needed more than I could do for her. I felt defeated as a mom. There was nothing I could do for her, worst feeling ever. The admitting doctor at Children’s said he did not want me driving her because the trip was over an hour-long to get there and by the time she would be admitted and get a room he didn’t want too much time to lapse between breathing treatments. They said we had to go by ambulance. At this point Nathan is minutes from home. The nurse said I could run Gage home and get the things I needed but I had to leave Tinleigh with her. She promised she would not let the ambulance take her with out me. I had the doctor listen to Gage’s lungs again before we left and told her about his high fever. She told me with everything else going on Gage more than likely had walking pneumonia and gave him another antibiotic. So I run Gage home, Nathan had beat us by a few minutes. That was a tough hello and goodbye. Not seeing each other all week, the stress of my being sick plus dealing with 3 sick kids and one headed to the hospital. I finally had my moment of emotions. I had to quickly run through the medications of who got what when. I hated leaving my sick boys.

Hopping back in the car it was time to suck it up and go take care of my baby. The ambulance finally arrives, they put an IV in her head, I sign papers, they strap her down and we’re off. I had to ride in the front. I was not aware they had little televisions up front so I could still see her in the back. She enjoyed the ride. Took a nap, but spent most of her time looking back and forth between the two nurses on board.

Upon arrival at the hospital and getting checked into our room they immediately stuck a tiny tube up her nose and down her throat to suction her out. This is what they did the entire time we were there. There were no breathing treatments, only suctioning. If I would have known this was how they treat rsv from the start I never would have kept her home with me. She was put on oxygen that night. The poor thing just slept and slept.We stayed until Friday evening around 7pm. By the time we left Tinleigh was only taking an ounce and a half a feeding. She would nurse, but not very well. The doctor told me once they cross over the hump they rarely go backwards. So as long as I could keep her eating and getting her intake up we would be fine.

I was also still trying to nurse through all this. I don’t produce a lot so our routine is I nurse her both sides then she takes a bottle. Well she hadn’t really eaten since Monday and trying to do everything on my own I didn’t really have time to pump for her. The hospital was actually a good thing because it gave me a break and time to pump. I spoke with a lactation consultant while I was there, she gave me guidance on getting things going again. I also got to actually eat and drink while we were there. This helped me to feel better. With bronchitis my body would just stiffen up by evening. I was in pain and didn’t want to move every night. My legs and my entire back would just burn. I’m sure part of it was lack of food and water. The first night at the hospital I was in such pain I actually begged and offered a nurse money for two IB Profrin. By the time we left the hospital my cold had moved from my chest to my sinuses and I was well hydrated!That weekend it turned into a sinus infection.

The boys were great by the time I got home with Tinleigh. We stuck to pulmacort for 2 more weeks in the nebulizer just to keep our asthma and wheezing at bay. Tinleigh started taking in more and more formula with in a few days. I did end up quitting nursing. She would try, then just look at me like I was crazy and there was nothing in there. It’s always hard to quit nursing, that bond is so special. She got 5+ months of breast milk, better than nothing. I got on my own antibiotic that next Monday and was healing quickly.

I am not sure how I actually made it through those 3 weeks without having a break down. I just did it. At one point I had 14 medications sitting on my counter for 3 kids. That’s insane! I will say that the final week my housework did come to a halt. I absolutely could not do it all. Nathan did come to the rescue and helped out with some things while we were at the hospital. He sent me a text while I was there telling me he has a new profound respect for me as a stay at home mom. Made me feel good. Nathan started his cold that following weekend and got pink eye from the eye doctor that next Monday.

Everyone is much better now.

However, everything is in bloom and the sniffles have started.

The saga continues…

March 17, 2012 Posted by | LIVING | , , , , , , , , , , , | 2 Comments

It’s airborne

I couldn’t sleep last night and started thinking about what the doctor had said that maybe Charlie’s EE is caused by an aeroallergen. I think he might just be right. Charlie started this cough/clearing of the throat thing over the last few months. It was this exact time last year that he started having problems and was diagnosed! Then I started thinking about Nathan. When I first met Nathan he would say that he was deathly allergic to poultry and fish and that he could only eat pork as long as his seasonal allergies weren’t bothering him. DING!  It has to be more airborne related for my family. I can’t wait to find out the results of this new blood test and get the scope results back. If we know that Charlie is going to flare up only during a certain time of the year we could treat it a little stronger and maybe keep it under control. Wouldn’t that be awesome!

May 19, 2011 Posted by | Charlie's allergies, Nathan's allergies | , , , , , | Leave a comment


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