Monday, May 29, 2017

Day 11 - 12 May 28-29

May 28:

Lazy Sunday.

R did good today and even better with his aerobika.  It's amazing how much progress he has made with it here.  I do believe some of it comes from the oxygen nebulizer vs air at home.  Either way, huge success.

He is still refusing to eat much of anything other than the occasional orange slice. So thankful that web made the decision a few months ago to get the gtube. It has been so resourceful and prevented various exacerbations.

He weighed 13k, biggest weight yet.

His cough is gone and his lungs are clear.

Today I really missed being at church.  I missed the people,  the learning,  and even the dirty pew. I thought about what my prayer request would be and tried to sort through all the praises in my mind.  Being in the hospital is mentally hard asks takes your heart and mind to scary places.  Thankfully,  I have my God and i know he has a unfailing plan for mine and r's life. I couldn't make it through a single day without  my faith. I can't wait until we are able to return to church and I can share Christ's works.

May 29:

Finally, poo!  Today r took a 15 minute nap, insert overly exhausted sign here, which was rudely interupted by his tummy roaring saying to go potty. It was very uncomfortable for R but he survived. Woohoo. (I thought last night he was going to do the deed because he tossed and turned all night. You could tell his tummy was causing him issues... my obvious thought was, "oh no, he has the virus" but I kept pushing that aside and rementioning that he just needed to poo. Ha! Either way, he worked it out without any nasty meds and is good to go!)

Today was a long one... r refused to nap. He was hateful and honestry so was i. We were both tired and didn't have some of our most favored nursing staff and that resulted in us being very aggatated majority of the day. Thankfully though, no matter how difficult we can be, - together we always manage to laugh and have a good day.! I am always encouraging r to express his emotions. I often remind him it's okay to be mad and upset but it's not okay to let it
A. Ruin your day
B.  Hurt other
C. Deliberately be ugly.
We are in 100 % control of ourselves, our actions, and our joy. Yes, today was rough. Yes, today I watched more tv and played less legos. Yes, today I cried when my dear child wouldn't nap and he was smacking me in the face with a stethoscope. But hey - I found joy when together he and I beat level 55 in angry birds. I found joy when the nurse delivered our orange slices. I found joy in the endless hot water during my shower. I find joy holding my tired little boy as we watched Moana for the 447x time. I found joy in his smile and in the way he says momma. I found joy in him learning to make his kiss pop against my cheek then repeatedly ask to do it again.

I found joy in this difficult day because it's my joy to create. I will create for myself and my child a life full, literally overflowingly full, of happy overwhelming joy.

Weight today was 12.6k
Temp was alittle higher than normal, 98.9 [97.2 normal]

Our pulmonary doc will be here tomorrow and should talk about our plan to go home. I'm hoping before we go to do another culture to ensure his lungs are clear, check out his tonsils to see if they have shrank, and a possible xray to check out the sinus diease and get a final look at the lungs before departure.


Saturday, May 27, 2017

May 26-27

May 26.

I felt a lot better today, thankfully! Thank you to everyone who texted and sent their love!

Also a huge thankful to Mrs. Angie and the Lehans for watching Big Bentley for us. He sent us lots of videos and thought he was on vacation. We can't wait to see him and R asks about him almost every day!

R did great with treatments and is really improving on doing hypersal through the aerobika. I am so proud of him, that is not an easy task and most kids are 6+ before they can do it successfully. The staff is always impressed by his hard work and compliancy. I work really hard at home to make treatments a priority and a serious time. In order for treatments to work like they should they need to be taken seriously vs a game.

R's weight is staying in the same window which is totally fine. Between 12.2K and 12.8K. I am really missing my blender and I can tell commercial real food blend we are using isn't as easy on his digestive system as our home blends are but it is way better than formula.

He is having some issues pooing so I have been adding prunes and crossing my fingers. I'm anti miralax so I will find an alternate solution...

We are doing great and r keeps looking forward to going home, riding the four wheeler, and he keeps saying he wants to go to walmart?! LOL

May 27.

Today was a easy and lazy day.

 We got a new pulmonogist since one of our current ones is retiring soon. Let me just say, change is very hard. Trusting some random person to care for your kid whom you don't know has its challenges. My advice would be stand you ground and be your childs advocate.  Yes,  they went to medical school but you know your child and they are your only patient. So many times throughout our journey we would have became just a number if I wouldn't have been studied up on cf and advocated for my son.  I believe that knowledge is key,  the more you know the more proactive you can be and the better health your child will have...

Weight today was 12.7k

Still no poo.... may try a hot bath tomorrow.

R has a weird above the skin rash surrounding his face ay his hair line and on his back. I have mentioned it daily for the last 5 days with no avail. Our fav. Doc is here on Monday I will mention it to her with hope of some treatment plan and diagnosis.

R has started acting out which tells me he is feeling better and is tired of this room. It's so hard to discipline him here. Here he is the sick kid who does blood draws and constant vitals. Here he gets filled with medication through a line which travels to his heart. Here he is scared and angry which I fully let him be. He is allowed to he angry and scared. He is allowed to be mad that he has to do treamtents. I support him having emotions and voicing his feelings but no matter how bad you feel physically you are always in charge on how you act. Here I don't let be ugly or disrespectful. Here I still punish him and teach him how to be a polite patient and good tiny human. Here I still encourage him to learn and have fun. Just because we are in a hospital room that isn't an excuse to just fade away from life. Christ entrusted me to raise this little human in a way to make him proud and no matter where we are or how sick he is I always will.

I love my child more than comprehensible and being here is draining. I won't lie. Being here hurts physically and emotionally.  But being here with him by his side in this hospital room is still a dream for me. He is brave. He is kind. He says thank you and please to the people who stick him with needles. He smiles when they awaken us at 3am for a blood pressure. He hugs me and says he loves me when I am failing at being his mom. He is a gift from God and I cherish him daily. I cuddle him every second I can, I take every hug and kiss that he is willing to give. I take selfie after selfie to cherish every memory I can with him. He is loved more than any other little boy because he is his mommas hero and dream come true....

#Fight65


Friday, May 26, 2017

May 23 - 25

*Note to self, must make time to blog on day of to prevent forgetting valuable information.*

The past few days have been easy peasy.

We have done treatments and lots of tube feeds since r isn't much on eating these days.

His lungs are sounding clearer and his cough is fading away.

His lab work was all great and his bronchial culture grew moraxella catarrhalis. This bacterial growth is one that we have grew before and probably occured when he was fighting haemophilus parainfluenza.  It also explains his swollen  tonsils, adenoids, and lymphoids. Since he did not grow pseudo or anything severe we stopped the tobi and are only on the fortaz/Ceftazidime.

We changed his dressing again on may 25. That is never a fun task but he did great and his picc site looks wonderful no redness or swelling and it draws blood like a dream.

Since it has been rainy we have spent all of our time tucked away in our room. We have been building with leggos and learning lots on our tablet.

On Monday our nurse went home sick with a stomach bug and on wednesday night I caught it too. I was up all night wednesday and thursday day puking my guts up. I couldn't keep anything down so I spent most of the day laying on the cold bathroom tile. I felt horrible and I felt even worse because I was unable to care for r like he needed me to. It literally broke my heart to be unavailable to him. We got up at 0430am on thursday and spend the next 3 hours sitting in hot shower. He was great company and took wonderful care of me. Thankfully my mom was able to save the day and she helped keep the ship afloat.  Thank you mom for stepping in and helping us when I could not.

We should be heading home somewhere around the 31st-2nd.

R is doing great and I couldn't ask more of him. He truly is so much more than I deserve and I love him more that I know how to explain.

Weight & Temp:
23: 12.4k 98.3
24: 12.6K 97.2
25: 12.3k 97.6

Tuesday, May 23, 2017

Day 5-6 May 21-22

I missed a day of blogging and in my mind those two days have blended together so here is a summary of both.

Day 5 and 6 had zero issues. R did great tolerating the real food blends formula through his gtube. At home I blend his meals and here blending is not an option. Therefore, I had to find an alternative or they would be putting him back on that awful formula. Thankfully, I found real food blends. RFB is exactly what it sounds like. It is real food blending up to g tube bolus feeding consistency. It comes in a pouch and honestly looked like soft dogfood ha. I usually add prune juice or protein milk to it to then it down even more. I was so thankful we were able to order this and use it in the hospital.

R's appetite by mouth is very minimal. He is mainly eating chips and occasionally fruit. I have been utilizing his tubie 2x daily and more for liquid intake.

We have been doing treatments 3x daily both nebulized and cpt. His weight is ranging from 12.2-12.9. I blame this fluctuation on not being at home with out real blender eating a variaton of foods. But oh well we can work on that later.

His cough is still present but is contuining to break up and gradually be coughed up/out.

On Monday they took more labs to check the antibiotics in his system and his vitamins and iron levels. Since we have the picc line we are able to pull some of the blood directly from the line, the other requires a finger prick and lots of squeezing. R has learned what blood is and informs everyone that he is bleeding.

The staff is impressed by his vocabulary, ball skills, and his ability to do the aerobika properly. He loves the nurses and staff here, they treat him like family. (Most of them anyway, there is always a few sour apples in the bag) The floor is still full of CF people battling the same issues we are. Everytime I leave our room I hear the sound of the vest and I'm reminded we are not alone. I had the opportunity to share Christ's love with a fellow CF mom and that was a huge blessing. Her daughter is really struggling and I kept trying to encourage the mom to find hope in christ. Please pray with me for that family. For every family here. Hospital life has its challenges whether they be giving your child away to a surgeon, being awoken all hours of the night, or going to eat your leftovers from the hospital fridge to find that someone already ate them. Each day is different and requires something more from you here.

But even here, amiss the beeps of IV's that nurses have forgotten to turn off, amiss the screaming of a child who is getting blood drawn, amiss the shaking of chests during a vest treatment, amiss it all Christ Remains and He Is Good.

Always find the beauty, and I'd you cannot be it. Create it.

Sunday, May 21, 2017

Day 4 May 20

12.7K
98.3 Temp

0830: Albuterol,Hypersal 7%, Pulmozyme, 30 minutes cpt
0900: Vitamin, Prevacid
0915:4oz food via tube
1100: Applesauce
1200: Ceftazidime
1245: Lunch + 4oz tubie food + multivitamin with iron
1330: Pulmonary doc came to visit. The bottom of lungs sound clearer but the upper are still full. Stopping Tobi.
1400: Nap
1530: Albuterol, Hypersal 7%, 30 minutes CPT
1600: Picc line cap change and administered ceftazidime
1800: 5oz Real Food Blends via tube, first time using this prepackaged blend...
2000: Albuterol, Hypersal 7%, Pulmozyme, Aerobika, and 30 minutes CPT
2100: Ranitidine, Ceterizine, & Montelukast.
2200: Tiny Human Asleep.


Today was an easy day. We had a short visit from neuro and they said everything was great. R is coughing really hard and sounds super junky but we feel its moving up and out so that is good. R and i were both hateful harry today but that is totally okay. We worked it out together. Ha! Fun times.