Monday was a busy day that began very early and ended sometime Tuesday. Thankfully our terrific overnight nurse came in on Sunday overnight to be sure the twins got all their meds. He was also able to help kid wrangle during pre-op and recovery so that each of the twins had a familiar adult, while Nana oversaw my youngest. It was a smooth process overall, thanks to skilled and responsive hospital staff and our surgeon. Much of the news was good, some changes with the twins- both have larger trachs- and my youngest has an airway & larynx that now “look great”. My kids are easily amused at the hospital with videos and the food was good so they enjoyed their 36hours there for the most part. I am very thankful my kids are so easy-going with the procedures necessary to assess their medical needs.
June is here & has already begun to close in as one of the busiest months for getting things done. At the end of the week, we go to a new hospital and the Mitochondrial Disease/Metabolism Clinic for one kid- although they want me to bring along records for my youngest. Last month, about 3 weeks ago, a request for “complete medical records” was made. Today I received records for the ones to be brought along- not one pulmonology note, not one neurology not, not one orthopedist note, none from cardiology… Complete? Not exactly. So tomorrow will be spent calling the medical records department and following up on this & the other request- while I do not have a nurse along for the ride.
The appointment Friday will be tough. I am trying to write a summary list of strengths and concerns. I still feel pretty ambivalent about whether this is truly what we are seeing. At least it is also metabolism- cuz this kid has got some SERIOUS ability to burn calories! Maybe they will have a suggestion that outweighs the GTube recommendation of the GI & Cardiology- maybe they won’t but it’s worth an ask.
The next scheduled appointment is the day when all 3 kids are scheduled to go under anesthesia and have their airways looked at. June 18th will be a crazy-busy day and I have yet to line up hands to hold & rock kiddos pre- & post-op. The appointment may be bound with an in-patient stay overnight- making this a crazy 2-day extravaganza. At least it is at a hospital I 100% trust with the care of my kids so it won’t be as stressful being in 2 rooms if all 3 need to stay.
Closing out the month will be an ACTUAL pulmonary appointment. We have been bundling these with the Complex Care appointments and not really getting much time sometimes. Our pulmo has a great reputation, is easy to talk to and has significant creative ideas on how to treat my kids- but is SO busy taking care of everyone complex in our medical mecca that he is hard to get together with outside his clinic. I will be glad when the month is over and am hopeful the information we get or changes we make will help my kids thrive throughout the rest of summer- & beyond.
My twins celebrated their birthday today. They woke early and had a busy day of:
- Ice cream for breakfast
- Opening presents
- Testing new toys
- Playing outside
- Gettting reading to “party”
- Having pizza, cake & ice cream with FIVE of our wonderful Home Care nurses- including 2 who are no longer working here
- Getting to bed late
Let’s hope they sleep in in the morning. Be well & goodnite.
Today my son spent hours off oxygen when he should have been on it. A nurse forgot. The nurse switched him from a portable tank back to the recently filled liquid tank and forgot to turn on the Liter flow.
I watched him have a higher than normal respiratory rate. I watched him play lying down. I watched him develop black circles under his eyes during dinner- yet I never second-guessed the nurse’s competence in following doctor’s orders.
I made the assumption that the nurse had turned the oxygen ON when his tubing was attached to the tank. I looked for reason’s beyond what would have been my first instinct had I been home alone and been responsible for providing him oxygen. Such a competent nurse made a simple mistake. And tonight my son pays. He struggles to maintain sats above the ordered minimum & requires oxygen to supplement his fatigued ability to breathe strongly enough. Again my son pays for the mistakes of others.
And I live the guilt.
My oldest child is 18. I remember Saturday morning with him: a time of lounging together, sleeping in, Saturday morning cartoons… It was the morning we ate at the diner, got out to the park, met friends for hiking excursions…
Now Saturday “morning” typically begins as a continuation of Friday evening. Getting to bed before Tavish completes his first “barrel roll performance” is impractical. I typically stay awake and occupy myself with the computer or TV or laundry until just about 1a.m. before settling in to my first nap of the night. Overnight “morning” continues as I am startled awake by an oximeter alarm, or a breath that sounds off, or the crashing of knees into the metal siderails of the medical cribs. On & off, I steal sleep in 2-3 hour increments until true Saturday morning begins.
Gone are the Saturday morning snuggles, the invasion of my bed by young children to gently awaken me. Today’s Saturday mornings begin with a startle to awake and realizing that the morning neb treatments must begin or the feeding schedule will be so off we will miss an essential 200-300 calories for the day. Typically I shut off oximeters and then the mist compressors. Together the twins and I stretch our arms to the side, close our eyes, and mark the “moment of silence” before the mechanical deluge begins anew with nebulizer compressors running the first of 2 morning nebs. As the first neb runs, I get Keva from her room or the nearby cushion on the nights she “rooms in” in our “ward”. She gets to the bathroom as I try to make my coffee so I can complete all the rest of the morning tasks which keep my kids breathing well-enough to enjoy some of the day.
It has been quite an evolution from the morning of rest, of “refresh”, to the morning of “assess, neb, toilet, meds, nutrition, assess, repeat”. The most difficult part of the transition? There no longer IS a “refresh”…
This week is a “quiet week” – 4 days no nursing & only 2 doctor appointments, 1 for each twin. O sure, the doctor appts we are going to are genetics (results) and an ECHO with cardiology follow-up, but it’s only 2 trips in- and one of them I will have a nurse.
Maybe its just that the next 46 hours are covered with nursing. Maybe it’s that place of denial where a parent needs to live to get through the stress of waiting for testing to see if your 5 year old is suffering from pulmonary hypertension… Maybe. But this is my quiet week.