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.

Saturday, May 20, 2017

Day 3 May 19

Today was a good day! We learned there is 7 other CF patients on our floor and there are no vacant rooms. The hospital is packed. I do ask that everyone please pray for each individual here, whether they are patients, parents, guardians, friends, family, or nursing staff. They all need our love and prayers. Hospital life is physically and mentally demanding. It is often a helpless time for parents and a scary time for patients. So please take 2 minutes and lift up all this who consider the hospital home.

Today we did a finger prick to test the antibiotics in r's body to ensure the levels are just right. He weighed in at 12.7k. His appetite is very minimal and we are doing a few bolus feeds throughout the day. His cough is getting worse but his fever is staying down. We are still waiting for results from the bronch cultures so we are still doing tobi and ceftaz. Today his picc dressing was already looking rough so we changed that and are hoping it lasts a few more days this time...

R is doing good in the hospital and his spirits are still high. He enjoys talking to the nurses and watching the new movies. Our care here is great and we are blessed with wonderful staff.

Sidenote. They are amazed by his progress with the blended real food diet vs formula. He is the first patient here to do so. Woohoo.