I didn't have many pictures of Hayden this week because most of the time he felt awful. He couldn't muster a smile even for his nurse Neal. His sole joy was getting to go to the gift shop with a gift card a dear friend had sent.
The sweet founder of CC4C asked me this week if I could "quickly" do a bullet point list of what a particularly trying day might look like in my life. This question was posed to me 3 minutes before I got the news that it was about to be one of those days.
Here is how our typical day starts:
5:30 AM: It takes an hour to an hour and a half to get Hayden ready in the morning before school. We start the day with removing the overnight catheter that he sleeps in so that we don't have to wake him through the night to relieve the pressure on the bladder. We take off his overnight leg braces to keep his knees and legs from the muscles and tendons tightening into contractures all night.We lift him to get him ready out of his bed. We carry him to a large changing table that we made in his bathroom.
Hayden is fully physically dependent on us to get dressed. He lacks the balance and bilateral coordination at this time. We dress him with orthotics to help keep his feet straight and give him extra support for any weight-bearing throughout the day. We put him into his wheelchair. We brush his teeth after desensitizing with the special toothbrush so that he doesn't gag. We brush his hair. We send him to the kitchen when our nurse arrives (we have been blessed with punctual ones that arrive on time and are extremely reliable).
7:00 AM: Our nurse then feeds him breakfast through his G-tube and gives him his seizure medicine for the day as well as any other medicine he may be on.
When our nurse comes it relieves us to quickly to help Hanna and Garrett to get dressed, breakfast and have their bags packed.
6 Backpacks: We check that all of the kids have their backpacks ready like anyone else only our three kids require six backpacks. Hayden has four backpacks that are ready for school. 1: The first backpack is full of emergency medical supplies for seizures and should his G-tube accidentally be pulled out at school. 2: The second backpack is for his G-tube feeds as he cannot physically eat enough calories. 3: The third backpack is for his lunch to eat with his aid that will assist him so that he can eat in the cafeteria with his friends. 4: The fourth is the regular school backpack, with his folder and nursing notes and binder with all of his diagnosis and instructions. If anyone of these backpacks has an item missing, it will require another trip to the school. We double check these every night and morning before we load the car.
7:20 Quickly we grabbed any breakfasts that are remaining, school lunches and #5&6 backpacks for the other two children and leave.
7:30 We say a prayer together as a family in the car before the day starts. We pull into the school parking lot drop off line. We sneak around all the cars to go to the front so that we can find our handicap spot (hoping that no one is illegally using it) to begin our unloading process. Our school aide is there to greet us and help us unload our car. I say goodbye after unloading the wheelchair and the backpacks. By now anyone that was in the car drop off line has left on their way.
8:00 This is the time of day when I never really know how things will go. I typically do one of two things: 1) I do my best to go straight to the gym with my youngest to exercise to get out any anxiety or stress and to get mental clarity for the day or, 2) I go take a trip to the grocery early to restock for the week.
The Back Story from the Previous Week
Hospital Wednesday- Hayden complains about intense pain that manifests in his leg even though it is his urological system. I rush Hayden to the hospital and Scott rushes home to take care of Garrett and Hanna. After a month off antibiotics for the first time in 2 years following two previous surgeries to remove the infection, his images don't look good and emergency surgery is again scheduled for Friday.Hospital Thursday- We are back at the hospital for an endocrine apointment that has been scheduled 6 months ago to start the journey of why Hayden isn't gaining weight and growing. They order labs to be drawn during Hayden's surgery.
Hospital Friday- attend the high school football team's champions breakfast as they prepare for the state playoff finals. Hayden goes to school until noon to watch his sister's school performance on a fast prior to surgery that afternoon. Surgery was at 3 and we are back home by 7 pm that evening to go to bed.
Saturday& Sunday- Hayden is feeling great. He sleeps well and is acting like his old self. He plays in his treehouse with his brother. We have a picnic and roast marshmallows.
Fire Drill
Hospital Monday- 7:30 drop kids off at school
- 8:00 pick up groceries
- 9:00 throw them in the fridge to put away later in the day
- 9:10 rush to the chiropractor for my
- 9:15 apmt
- 9:13 got a sweet text from CC4C asking for an outline of a tough day
- 9:15 got a call from our nurse saying that Hayden suddenly had a temp of 101 and would be in the nurses office waiting
- 10:00 pick up Hayden up from school, take him home where he can be entertained with Garrett while preparing to go to the hospital
- 10:15 frantically call doctor on his personal cell phone following surgery to see if we can see him or have to go through ER, call husband to come back home after he just finished driving into downtown to come work from home
- 11-12: frantically shower, cancel all therapies, appointments, call nursing agency, pack meds, feed kids and load the car for the doctors office
- 1-4 Arrive at the doctors office where they fit us in for an examination. Admittance to the hospital is mentioned (from another doctor as our doctor was out of town at a lecture) for IV antibiotics even though the tests after surgery showed everything was clear. PA says surgery site looks good and to continue antibiotics at home and if temp persists or swelling starts to come back.
- 6:00 get home to feed the family
- 7:00 Start our bedtime routine with baths, books and prayers and a 45 minute bowel/Mace program for Hayden
- 8:30 all the kids are in bed
- 9:00 throw laundry in the machine, do dishes, pack lunches and backpacks for tmrw
- 9:30 check e-mail, check finances, make sure overnight hospital go-duffle bag is packed for potential hospital stay for the next day
Hospital Tuesday
- 7:30 Take Hanna to school. It is a beautiful morning feeling relief that we didn't have to be admitted to the hospital.Leave Hayden and Garrett sleeping in today as Hayden can't go to school for 24 hours following a fever.
- 8:00 When Hayden wakes up I see that he is terribly swollen and his fever is back and spiking. I shower and prepare to take him to the hospital following Garrett's drop off at preschool. I drive frantically and call Scott to leave work and come back home from downtown.
- 10:00 Arrive at the hospital ER. Hayden is still in extreme pain even after the hydrocodone dosage and two antibiotics. He cries but endures his pain well. We have to answer a million questions over and over again. Tests and images are taken for hours. We are admitted to our room at 5:30 that evening. I am starving but know to pack food before going to the ER.
Hospital Wednesday - Friday
The swelling increases and all of the labs and test don't show any bacteria. Once infectious disease came on as consultants for the urology team, they intercept the labs and cultures and worked with them to retrieve all specimens and grow them out for atypical bacteria. We now call it H-typical because nothing about this little boy is typical.
I cried a lot of tears in pleading prayers this week as I ran along the Mueler trail. I also listened to scriptures as I ran and found comfort in the following:
Psalms 30:55 For his anger endureth but a moment; in his favour is life: weeping may endure for a night, but joy cometh in the morning. 2 Corinthians 1:66 And whether we be afflicted, it is for your consolation and salvation, which is effectual in the enduring of the same sufferings which we also suffer: or whether we be comforted, it is for your consolation and salvation. Moroni 7 Wherefore, if a man have faith he must needs have hope; for without faith there cannot be any hope. 43 And again, behold I say unto you that he cannot have faith and hope, save he shall be meek, and lowly of heart. 44 If so, his faith and hope is vain, for none is acceptablebefore God,45 And charity suffereth long, and is kind, and enviethnot, and is not puffed up, seeketh not her own, is not easily provoked, thinketh no evil, and rejoiceth not in iniquity but rejoiceth in the truth, beareth all things, believeth all things, hopeth all things, endureth all things.
This is one of my precious children I don't get to see all week when in the hospital. It's the text I got at bedtime.
Thursday was the first day for smiles and an attempt to play and sit up after receiving a blessing from the Missionaries. https://www.mormon.org
I love smart friends that know the toys we didn't know we needed.
It was free toy Friday. Hayden said it was the best Friday of his life. I nearly started bawling over that. The hospital gives him loads of toys every day thanks to the non-profits that blanket the hospital like this sweet little 16 year old that started this non-profit for kids in the hospital like she once was. Hayden got these two stuffed animals for his brother and sister.
Hayden also got a gun (and books and toys every day) to shoot with a visit from his friend Josiah. He perked up enough energy to race down the halls of the hospital. Thanks to the Assistance League Austin who buys toys from the money they raise from profits from their thrift shop.http://www.alaustin.org
After finally having an appetite after a long week, he got a surprise with his favorite chocolate chip cookies and ice cream thanks to CC4C. He also shared them with all the nurses, so naturally he was their favorite.http://cc4c.org
Hayden wasn't able to attend the last two Lake Travis Football games and was especially disappointed because they are in the state playoffs. Here is what he had to say #LTakeover.
We ended the day with a great movie night at the hospital for patients and their families watching Finding Dory thanks to Amber's Angels. Scott brought all the family for movies, pizza, popcorn and candy. We got to be together for a few minutes before Scott and I did our shift change. Shortly into the movie, Hayden got called back to the room as his 4th IV had blown and his 5th was being placed for the weekend.
So far they have discovered 4 bacteria. Two have been identified and two more have yet to be identified. It is too risky to bring him home before we know what he has grown resistant to and before we know just exactly what these other two bacteria are.
Thank you for your many kind calls and for letting us know of your concern. You never bother us. If we can't talk we simply won't answer, but thank you for reaching out. This year we are very excited to not continue on our tradition of being in the hospital for the holidays.
