Our New Normal
Since our last visit to St Louis, Reiss has continued her hymoptysis (coughing blood) every 7 to 10 days. At first, the doctors in St. Louis told us that this should last for 24 hours, then taper off. After our first bout of 48 hours + of hymoptysis, we were then told that since she seems to be a normal 2 year old who plays, laughs and is otherwise healthy, and to just watch her and let them know if something changes. Other than coughing up blood, we are also looking to see if the following change from day to day.
- Dark, tarry stools – which would indicate she is swallowing blood
- Overly purple-ish tint to her fingernails and lips – she already has a purple-tint to her lips, so this one is hard to determine also
- Change in her baseline pulse ox numbers – we have a pulse ox machine that we use for this. Her normal sats are 76-81.
- Lethargic demeanor
- More blood than her baseline – this seems to change with each week. She has coughed up blood for 2 days and 7 days – we are told that both are “normal”
- Frank blood – blood that clots instantly outside of the body
- Eating and drinking patterns – and output
- Shortness of Breath – which is hard, because her baseline now includes being short of breath
Other than hymoptysis, Reiss also gets short of breath easily, as mentioned above. She can be excited to see you – shortness of breath. She goes down the slide a couple of times – shortness of breath. She wants to jump on the bed – shortness of breath. She is on allergy and asthma meds to help lessen the effects of asthma-related shortness of breath. However, her heart defect causes a reduction in oxygen-rich blood to circulate in her system. This could be the root of the breathing issues. The doctors at St. Louis Children’s Hospital (SLCH) think that if she has the second surgery to make her heart a single ventricle heart – The Fontan, this will help the shortness of breath issues.
Reiss is also puking on a daily basis. We have tried to teach her how to cough up the mucous she feels in her throat, but that doesn’t stop her from puking. If she gets upset and starts crying, there is a good chance she will puke. If she over exerts herself, there is a good chance she will puke. Over-exertion is not the same for her as it could be for a normal child. She may hop like a bunny four times and puke, she may scoot down a staircase of 10 stairs and puke, or even run 5 feet to the bathroom and back to you and puke. The doctors tells us that she is just a puker, and it sucks that she is a combination of a puker and a heart/lung patient. Children tend to have a sensitive gag reflex since things are so close together when they are young. Once Reiss starts growing more and the distance between her trachea and her stomach increases, we should see a decrease in her puking. But what does that mean exactly? Does that mean when she is 3 there will be a reduction? or when she is 10?
Getting a Second Opinion
Have you ever looked up the medication you or a family member was taking on the internet? Or checked into what your bloodwork results meant? or looked at the side effects of a surgery? Well, don’t. If you want to drive yourself crazy, please go ahead and take a look at what the internet has to offer. Be sure you are smart about your research, however. Stay on sites that are backed by actual, accredited medical facilities. For us, we found enough on the internet to push us to getting a second opinion. Is the Fontan really the way we should go? Is her hymoptysis really because of extra blood vessels in her lungs? Is there a better scenario and outcome?
We are lucky that a family friend knows a pediatric heart surgeon at New York-Presbyterian. We used that connection to help get a second opinion. In addition to that, we contacted Children’s Hospital of Philadelphia (CHOP). Through our research since Reiss was born, we know that Boston and CHOP are the Top 2 in the USA in terms of children’s hospitals. We tried to talk to Boston, but just to get a consultation we were going to have to travel to Boston for a face-to-face appointment. The two second opinions we have requested are free of charge (Thank the Lord!) and neither require a face-to-face appointment. Hopefully we will get a plan of action – either different than what SLCH says or agreeing with them. There are many other “next steps” depending on what these institutions say. They should both have Reiss’ information in hand at this point and we expect a call 7-10 business days from today with more information.
If we end up going with what SLCH recommended the last time we saw them, we will be scheduling the Fontan for later this Summer. The other hospitals could come up with a different option, however. Maybe they can “re-plumb” her heart to pump as it should? Maybe there is another option we haven’t discussed yet?
We have tried to give Reiss the most normal life since she started coughing blood. She loves hanging out with her family and playing with the dogs. Reiss has decided that her favorite color is orange, she loves watching videos of “boys and girls getting shots” and “boys and girls getting iv’s” (yes, she actually asks for those things specifically) on youtube, feeding and petting the cows with daddy and building with blocks and leggos.
Fortunately, she is super smart. I’m not sure I know of another 2.5 year old who knows that “the needle goes in the vein, mommy” when administering an iv to her baby dolls. She also knows that when she coughs up mucous or pukes, we look to make sure there is not blood in it. Reiss to mom: “mommy, there’s blood in it. call my doctor. show my doctor there is blood in there.”
Unfortunately, she is super smart. She knows that if she cries too much, coughs too much, runs too much, she is going to get a lecture from one of us. She has already started finishing our sentences. Me: “reiss, it’s okay to cry and be sad. Let’s try to talk about it instead of crying, ok? You know that crying…” Reiss, interrupting me: “can hurt Reissie’s lungs and make Reiss go to the doctor. I don’t want to go to the doctor.” [insert mommy’s heart breaking here].
From Reiss’ standpoint, I know this has to be effecting her emotionally and mentally, but it is hard to tell how much. And if it is effecting her, how is it effecting her?
From a parent’s standpoint, we. are. exhausted. There are some days I just want to curl up in the fetal position and stay there. Our brains are jumbled with medical talk, normal life responsibilities, relationships and work. In terms of Reiss, there is so much information to digest. Are we doing enough? Are we with the right doctors? Did we ask the right questions? Which surgery is best? Are her medicines working? Are her medicines working enough to outweigh the consequences of long-term use? Are her doctors doing enough? Which gives her the best life long-term, even if the short-term may be awful? Can we take her to public places if we want to reduce sickness exposure? Are any foods causing her puking? How do we discipline knowing she gets upset then pukes? What are we missing? How do you cope in the now with the thought that eventually her CHD may take her life?
This is something we work daily on – making sure each other is okay. Making sure Reiss understands the positive side of life. We believe everything happens for a reason and that there is a lesson in each action, scenario and outcome. We did not choose for Reiss to have a CHD, nor is it anyone’s fault that she has it. How we handle ourselves around Reiss in terms of doctor visits, procedures, medicines and outcomes, will be the basis for how Reiss handles living with her CHD in the future. We want Reiss to live with an optimistic viewpoint, ready for whatever life may throw her way. What will happen the first time she tries to play with friends on the playground and can’t keep up (assuming lung issues persist)? What about the first PE class? When she changes in front of other girls with her scar there for all to see – does she hide it? does she embrace it? How does she deal with the harsh words of her classmates? It is our job to build a strong foundation in Reiss’ heart and mind – to make sure she understands how strong she is – no matter what anyone else says. Her confidence is key – today, tomorrow and years down the road.
Thank you to everyone who has followed our journey. Your kind word are much appreciated.