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Just when you think you’re safe

I promise, I will write about NYC and the SHARE Union soon…..I have to take some time to sort out my thoughts and emotions (of which there are A LOT!), and then I will tell you all about my experience (which was AMAZING)….

Today, I need a little help. Ryley was recently diagnosed with asthma and has his asthm action plan, get his puffer and nose spray every morning, and Singular every night. I have been giving him his meds faithfully since we got our plan and his new meds. I was a little worried about being gone for three days. Would Michael keep up the routine? I don’t expect him to do everything exactly as I do when it comes to the kids, and I’ve learned to let go a little bit, but I was concerned. Since we started this plan, Ryley has done really well. I know colds will come and go, especially being in preschool full time, but we’d held off everything for almost a month.

Here is why I was so afraid….Michael doesn’t really believe there’s anything “wrong” with Ryley. I asked him straight out the other day as my fears surfaced. He rolls his eyes when I give Ryley his meds. He doesn’t think Ryley needs them. He doesn’t think he has asthma. WHAT? I looked at him like he had three heads. I specifically asked him on Saturday to please give Ryley his puffer and other meds, whether he believes it or not….I am not having a repeat of last year…….Four visits to the dr’s office, threee visits to Radiology, four rounds of albuterol and everything else we could think of to keep him from going into pneumonia. Michael agreed, he would give him his meds. I leave them on the counter just so they’re out and I will remember everyday.

I got home yesterday and went to pick Ryley and Grace up. The first thing I notice after hugs and kisses is the yucky green stuff coming out of Ryley’s nose, and that his voice is crackling with congestion. I asked if he had been getting his medicines….Nope, Daddy didn’t give it to me, Ryley said. WHAT? Now, Ryley has been known to not always be as truthful as he could be (he’s five…self–preservation has kicked in full force!), so I thought I’d better check with Michael. As soon as Michael got home, I asked him. Nope, he hadn’t been giving Ryley his meds. Why, I asked. “He doesn’t need them…He’s fine….He’s not coughing” was the answer I received. I nearly exploded. How could my own husband, the father of our preemie, say that, after all we’ve been through? Is it still denial on his part? Does he still honestly believe that once we left the NICU, we had a “normal” child? Does he not think that there could be any after-affects of being born 14 weeks early?

I woke in the night to hear Ryley coughing. He was still coughing, that dry hacking cough this morning. The peak flow meter still showed blessedly green, but we are back on schedule with the meds as of this morning, and the preschool director knows to give him his inhaler if the coughing persists throughout the day.

How do I deal with my husband? How do I get through to people who don’t know anything about premature births and preemies if I can’t even get my husband to deal with it?

12 thoughts on “Just when you think you’re safe

  1. Donna,
    What is up with these men. Mac usually gets neb treatments every four hours. he is horriable with thepuffer and Flovent is the only thing that keeps his coughing under control. In Ny I was not able to givehim treatments around the clock.He used the puffer during the day. Needless to say bythe end of tues he could not stop couching. When wegot home tues pm I started to give him a neb treatment. Mark looked at me and said he thought we were not going to do this anymore, he did so good,Was he not in the same car? I ask myself if he just wants his son to be perfecf that his judgement is clouded or is he just DUMB.

  2. Oh, my….I am really not sure what to say. Has Michael ever taken Ryley to the doctor when he is sick?? Has he ever been with you when you take him so he can hear what the doctor is saying? Maybe this would be a good start. Oh, Donna…I am so sorry!! I know you do wish that Ryley really didn’t have this. I know you, like me, would like to just quit giving meds altogether, but that is not our reality. I think I would start with Michael talking with Ryley’s doctor for a little parental education!! You are a GREAT mom!! Hang in there!! Hugs!

  3. Thanks, Michele and Christa. Michael did take Ryley in once last year, and sat through the 2 hours at Radiology. For some reason, it still hasn’t sunk in. I don’t know why. Another battle to face…..

  4. Donna, I am so sorry that you had to come home to this…to come home to realize that your biggest fear from going to NY had come true, and Michael had done as he said he wouldn’t do! I am at a loss!! I know men have problems admitting there is anything wrong with their children, but Dads of Preemies (DoPs) should know better!! I am so sorry! I like what Michele suggested, talk with Ryley’s doctor about this for some parental suggestions/educations/materials! Something in writing…as if you don’t already have it, I know! You are doing everything you can…and you are an awesome mom!! Don’t doubt that!! Sometimes it is easier to educate those we don’t know than those who are closest to us! HUGS & Cheesecake kisses to get you through!!

  5. Donna,
    I wish I had an answer for you…..but I don’t. (The control freak in me wants to just come stay at your house whenever you’re gone so I can make sure Ryley gets the meds he needs!!). I preached to Charlie about saline drops last week. He wouldn’t use them. Didn’t think she’d need them. Then he was up (and mad) all night long. After saline drops? Emerson slept all night. With Leighton, he’s tired of paying for her Zyrtec, so he’s (on his own) started halving her dose. I saw the note he gave to his mom this weekend when she had Leighton. (“Give her half of what the dosage says”). I was livid. I told him when he has his medical degree, he can prescribe meds to his kids. This is nowhere near as severe as Ryley’s, but it just goes to show that men are all alike. I wish I had a better answer. Hang in there. You’re home, and Ryley will get the meds he needs. I’ll pray for an “awakening” for Michael! Who knows, maybe Charlie and Michael really ARE long lost brothers!! Take care, and I’m glad you’re back safe and sound. Denise

  6. Oh Donna. I’m so sorry. I’m am without advice on this one and actually quite speechless. I understand your frustration because you really need to be a united front.
    Keep us posted on the progression and resolution.

  7. Donna, Maybe you could call your doctor…maybe a few doctors…to explain *why* they feel like he *does* have a problem with asthma. If he does not accept this *Truth* from you…then perhaps he will from field professionals. As Michele has suggested, I would encourage you to *go with* Michael to several doctor visits with Ryley. Let him witness first hand x-rays….exams….neb treatments….the whole SHA-BANG! As for the dishonesty part of the equation….that is another issue. It was not a harmless misstep of the brain…Micheael purposefully deceived you. By saying he *would* give Ryley the medication while you were gone…even if he did not believe that it is necessary… was what he *promised* to do…He *said that he would do this*. Frankly, it was a sneaky thing to do. Probably he *believes* he is doing the right thing. If the doctors are wrong…If Ryley does not need his meds…then his point would be proven.
    However, the risky part of this is….he may try to *prove* the doctor wrong, but find himself at the losing end of the bet. Either way…playing roulette with a child’s health is a risky…serious….dangerous business. I am *so* sorry you are having to deal with this. HUGS! Melissa

  8. Donna, I am so sorry you came home to that!!!…What a way to bring you down in a hurry from the exciting Hi of your trip… I do not know what to say.. Except that goodness for the Mommy…You do an awesome job with your family. ..I am sure your little ones was happy you are back!!!.. Welcome home I have missed you!!
    God Bless

  9. Oh, Donna! Sorry that you came home to such a “surprise”. I was gone just for about 48 hours and was worried about Scott giving meds and saline drops. He remembered most of the meds but not the saline. I don’t think it was intentional, he’s just selectively lazy and doesn’t listen. I am so sorry your husband did this. I always felt so thankful that, for all of the dumb questions we got and misconceptions from well-meaning family, at least Scott and I were a united front. I second the opinions of having a doctor tell him how important it is!! It seems so simple that he would want the best for his son and do what he should but seems like he doesn’t get it! I am *sure* he is not intentionally trying to hurt Ryley, I hope I am not coming off as implying that, it’s just that unless he is a doctor, he should probably leave it to the professionals.

  10. Donna, I’m sorry you had to back to your child being sick. My nephew has asthma,and gets sick right away,if he doesn’t have at least one breathing treatment a day,he too is a preemie. My daughter was born at 28 weeks,and gets nasal infections and colds a lot. they never checked her for asthma,you can never be too careful with a preemie.

  11. Donna, I’m so sorry… I know we had talked about this on the bus… and we had both hoped things would be different when you returned home. I’m sorry!! I wish I had a better answer for you… I think Michele has made a great suggestion… have Michael come to the doctors with you for a consultation. Let the doctors explain the process.. that Ryley appears to not need these meds because he’s on them… that shows they are working and doing their job. Have them explain exactly why they believe Ryley has Asthma, and how crucial it is for him to have a safe airway, and how quickly that airway can become compromised as a result of an Asthma attack. We’ve experienced the illness induced Asthma attack, but we’ve also experienced a true attack.
    Hanna.. has now “officially” had 2 Asthma attacks, one of which required a 3 day hospital stay on O2. She was cold free/ infection free, both of these times, and simply began the Broncho-Spasms you know all about. I wish I had a better answer for you. I understand how frustrating this must be for you. I hope you can get Michael to at least accept the responsibility, when you can’t be there to take care of it, even if he doesn’t agree with it. HUGS to you!! I hope this has been helpful in some way!!

  12. Donna, So sorry you are having to deal with this on your return trip home. I would also support the ideas above, especially having Michael go to a few doctor visits with you and Ryley. Perhaps you can give the MD’s a heads up so they can have the flash cards ready for Michael. We would all love our children to be “challenged free”, but just because something appears to be normal, doesn’t mean it still doesn’t exist. It sounds like Michael needs to be “scared straight” by a really good doctor who can paint a real picture of the dangers to Ryley. You know we are all here for you…..please let us know how things work out. HUGS to you! Brenda

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