My grandson is in the Hospital.. I am having one of those days :(

[Carol H]

Hi.. you all may have seen my post about kids with CF reaching out to kids with CF. My grandson is 6 yrs old has CF. He is such a amazing kid and so smart.
I think he knows more about his meds and schedule than I do! He has sinus issues has always has had a runny nose he takes zrytec and cincular plus all his other meds :0 He had a sinus infection and even with predisone and antibiotic he got worse. He was admitted to hospital Sunday for exacerbation of CF .. to me this means he cannot stop coughing! This is hard and because of a terrible reaction to antibiotics last Oct. the docs are being very cautious with what meds they can use now. He is growing strep on the culture and the new culture they took results are not back yet. They suggest having his tonsils removed because he has grown strep a lot over last 6 months. Also they may do a bronchoscopy to see if there is something else he may be growing that does not show up on sputum culture. But they will not be able to do either till he gets better. Docs said may do both in June after school is out.
Because I am a sappy Grandma I am having a hard time dealing with this right now. He is doing better and his cough has really slowed down so I am thankful for little things now like no more constant cough! He had a picc line put in today and he totally freaked out!! He is scared and knows what is going on, I asked him why he is so scared of the picc is it because it hurts? Or because he thinks it could hurt he agreed he is scared because it .... might hurt!
He is put out for the PICC line so he cannot remember the last few times he has had one...but he knows that a IV hurts and since his IV blew this morning they had to restart one before they took him down for picc so I guess I would freak out too!!
I am going to be there for my daughter and her family and I am there almost everyday with my grandson! He is on isolation (good word for it since you feel SO isolated) so we cannot leave the room! So we do lots of silly things to decorate his room and also always make a safe fort!! A nurse did this for him years ago and my grandson always wants to make one when he is a inpatient! He put a sign on the outside of his fort NO DOCTORS ALLOWED!
Please keep us in your prayers! Connor does have pen pals now and I can tell you it has been the best thing ever for him!! He even told the nurses about his pen pal and his new friends!! Thank you all!!

 

[jshet]

Oh Carol, I am so sorry Connor is having such a hard time. I know he went through such a terrible ordeal a few months ago, and I don't blame him for being so frightened. Poor kid had had a bad run lately. I will definetly keep him and your family in my prayers.
jacob had the same issues with the strep when he was younger. We did have his tonsils removed, at age 5, and at the request of his peditrician, they took the adnoids also. His ped. was concerned that the strep would just move to his Adnoids. I am happy to say Jacob has only had strep throst once since then. For him, it ended up bring a great thing that definetly cut down on future illnesses.
i know how much you are there for your family, it is amazing, but please do not forget to take some time for youself too. You are right there experiencing and dealing with everything right along side them, and that can become exhausting to even the strongest person.
please take care of yourself, and keep us posted. Janelle

 

[believingjesus]

I'm sorry Carol that your grandson is in the hospital! That is scary for anyone and probably more for a young child. He is so fortunate to have such a wonderful caring grandma on his side supporting him. So good of you to be there for him at the hospital helping your daughter and her family. I hope he gets better soon.

 

[jaimers]

I used to have those little tiny peripheral IVs blow all the time and they hurt so bad! Poor little guy. Hope he gets to feeling better soon! Not sure what hospital you're at or what the rules are these days but sometimes PT would find a time when the children's play room was closed and take me down there and then take me outside when I got older. Maybe he can "escape" for a little while if accompanied by PT. worth checking into because I know those days get long in isolation!

 

[zaj1139]

Hi Carol, Jaden and I saw that Connor was in the hospital and I asked Jaden to respond. Jaden did the strangest thing, he asked if I would do it. I have been thinking about this for a few days and I am thinking; just knowing he was in the hospital gave Jaden PTSD. I think in his young age he just didnt know how to respond knowing what it is like. After one of his hospitalization I bought a red wagon just like the ones in the hospital. He wouldnt go near it. Believe I know how tuff it is and heartbreaking. Jaden has been granted from the Make A Wish program Wednesday and although this is nice, I just teared up. It just hit home how awful CF is, how much it truly sucks! Anyway, prayers are going up for Connor and your family. And I had planned all along to sit with Jaden this weekend to help him compose a note to Connor.

 

[rtorres25]

Praying for your grandson and for you

Hi.. you all may have seen my post about kids with CF reaching out to kids with CF. My grandson is 6 yrs old has CF. He is such a amazing kid and so smart.

I'm praying for your family. I am an adult with CF. I can't imagine having a baby or grandbaby with it My daughter recently married and I can't wait for grandbabies. I know how difficult it must be to watch Connor suffer. I'm glad he has you with him.

 

[Carol H]

Carol Lynn, I am so sorry.. Jaden got so upset with the news Connor is in the hospital. I just shows what a caring thoughtful kid he is. I can say one thing about Connor he is a deep thinker and he would probably react the same way if roles were reversed. These kiddos remember what is it like to be in the hospital and no one likes it!
Please tell Jaden that Connor wanted him to know he is working on a star wars set trying to get all the ships to create his own galaxy
I hope what ever his wish is!! he gets to do something awesome because he deserves it! And I have to agree with you after this week.. how much CF truly sucks sometimes!
Thank you so much for the support and prayers! We will get over this hump!! Prayers so work!
Carol

 

[Carol H]

Hello, everyone. I first want to Thank you all for prayers and support! It makes me feel better to know just like Connor we are not the only one
Update on Connor .. he is ok but kind of up and down. His cough is not constant anymore, one positive I will take it!! But he still has episodes where he just coughs and coughs. He has a rash on his arm all around he picc line, it is not a reaction to meds!!! but a reaction to tape he has really sensitive skin. So cream and Benadryl to treat that .
he is on zosyn antibiotic and it is giving him real bad diarrhea but you guys know these kiddos have stomach issues already and his tummy is not liking the zosyn. So he cannot go home this weekend they did PFT's yesterday and he dropped from 95 at clinic a couple weeks ago to 81 Docs said he will stay in hospital till at least next Friday. Not sure he can handle being stuck in that room for another week They also added Tobramycin today to his IV therapy hoping that kicks in with the Zosyn to get him to turn the corner! The docs added this because he has had pseudomonas a few times in the last couple years but not growing on this culture.
Connor just wants to go home.. I felt bad yesterday as I was leaving I told Cara my daughter I was going home see her later.. he wanted to go with me. Watch what we say!! right! So this week we have to get even more creative with stuff to do in the room!! His child life specialist is just awesome and helps with games and new things to do almost every day! He also has a teacher visit with him once a day during the week and PT to do exercises!! Busy little guy
Please keep him in your prayers!! We can do this.. need those super hero powers this week!! Thanks everyone!

 

[mumof1]

Hi Carol
I understand what you are going through it is tough to watch your child/grandchild suffer and the days seem to drag on and on when you're in the room with them. I hope that you can find ways to have fun with Connor but remember to take a day away from the hospital to recharge and get some energy back. Sometimes you just need some fresh air and sunlight!
My CF son who is now 17 had terrible trouble with IV needles and has recently had PICC lines in- sooo much better!!!! I hope that the doctors and nurses are showing great care and understanding to your family, dont forget to ask for help when you need it. I am praying for Connor to get better and for you all to get home soon.
Mum of 1
in Australia

 

[LittleLab4CF]

I believe that almost always, a loved one's own perception of their child's suffering is greater than the actual suffering from the child's standpoint. If that's any consolation. It has got to feel overwhelming to have so many issues and decisions. At the same time, it sounds like you and your doctors have everything in hand. You understand the complexities behind his treatment. At least you appreciate that they are complex.

I spent about a week a month at a local infusion center daily, three years ago when I had a nasty infection and a tender gut. It was more instructive than inconvenient spending a couple hours each day at the infusion center during a flare. I was doing two or three different antibiotics and the infusion nurse asked me if this was going to continue for the foreseeable future. This led to a discussion of PICC lines and ports. First she explained IV, PICC and a Port in considerabe detail. In the summary of each method, the advantages and drawbacks were weighed. She felt that sometimes doctors move too slowly getting patients from IV's to piccs and a port. Remember this is the educated opinion of a 20 year nurse without necessarily knowing the issues of the potential danger of port surgery or such. Neither do I, my expectation is they're very successful techniques. If a port is inevitable, even understanding the caution a gradual process, why trash the nerves and blood vessels just to prolong the installation of a port? At a young age, this would require advice beyond me. From about 12 years on, an candid conversation with your doctor might be in order to determine if and when a port is going to be the optimal choice.

What she did know was the nerve damage arising from concentrated antibiotics and other IV infusion. Branch nerves, veins and arteries along with lymph nodes form a bundle and follow close to bones for protection and provides a built-in strain gauge for the bones in the bargain. Veins and nerves intertwine and veins are intentionally leaky to service cells with nutrients, oxygen and allow white blood cells an opening. IV infusion is hard on the vein and the nerves nearby that vein. At a point, neuropathy and loss of vein health will force a change to a picc line. That sucks because the line is exteriorized meaning that it passes through the skin. But it is easily removed. The infusion nurse thinks the world of ports. They are so easy on the patient. No hunting for a vein, no showers with taped bags that pull hair and always leak. A port is under rather insensitive skin and all one sees is a button shape showing under the skin. At six years, there's time for your little patient before neuropathy creeps in but be realistic, with the doctor's help, in moving forward with a port if and when it will be needed, and not too late. Hopefully this will ease the decision making process as you try to distract your grandson when they announce "here comes a little stick". It is so hard sometimes to watch somebody in pain and profound discomfort.

At six your little patient is not able to be dumped at the ED or register himself for admission for a hospital stay. Check out a special toy or game that you can both enjoy. All he needs is to feel secure. I am sure he'll be fine. Get a telescope, that could broaden his appreciation for heavenly bodies, and stars.

I'm sorry I don't have more. BTW I am delighted to be tonsils and adenoids free. Life saver,
.LL

 

[Carol H]

HI ... My grandson Connor is home!! Thank you for all prayers and support! I can say a big thank you to Childrens Hospital too!! They were amazing with my grandson
everyone... all the staff was really there for Connor and all of us! Thank you guys for caring!

 

[Carol H]

HI .. Hope everyone is doing good and getting ready for the summer Connor is doing so much better! His PFT is back up 105.. and they pulled his PICC line
He will have his tonsils out and bronch maybe at the end of July but for now all good!! He is back at school with only 2 weeks of school left We are looking forward to a wonderful summer because kids with CF always so better in the summer!!! right little sunshine and fun! Thanks for all support!
Carol

 

[jshet]

Amazing news Carol! So happy for Connor, he needed good news. I will continue to keep you both in my prayers. I hope he has a great summer full of fun and good health. Take care, Janelle

 

[The Dot]

Hi.. you all may have seen my post about kids with CF reaching out to kids with CF. My grandson is 6 yrs old has CF. He is such a amazing kid and so smart.
I think he knows more about his meds and schedule than I do! He has sinus issues has always has had a runny nose he takes zrytec and cincular plus all his other meds :0 He had a sinus infection and even with predisone and antibiotic he got worse. He was admitted to hospital Sunday for exacerbation of CF .. to me this means he cannot stop coughing! This is hard and because of a terrible reaction to antibiotics last Oct. the docs are being very cautious with what meds they can use now. He is growing strep on the culture and the new culture they took results are not back yet. They suggest having his tonsils removed because he has grown strep a lot over last 6 months. Also they may do a bronchoscopy to see if there is something else he may be growing that does not show up on sputum culture. But they will not be able to do either till he gets better. Docs said may do both in June after school is out.
Because I am a sappy Grandma I am having a hard time dealing with this right now. He is doing better and his cough has really slowed down so I am thankful for little things now like no more constant cough! He had a picc line put in today and he totally freaked out!! He is scared and knows what is going on, I asked him why he is so scared of the picc is it because it hurts? Or because he thinks it could hurt he agreed he is scared because it .... might hurt!
He is put out for the PICC line so he cannot remember the last few times he has had one...but he knows that a IV hurts and since his IV blew this morning they had to restart one before they took him down for picc so I guess I would freak out too!!
I am going to be there for my daughter and her family and I am there almost everyday with my grandson! He is on isolation (good word for it since you feel SO isolated) so we cannot leave the room! So we do lots of silly things to decorate his room and also always make a safe fort!! A nurse did this for him years ago and my grandson always wants to make one when he is a inpatient! He put a sign on the outside of his fort NO DOCTORS ALLOWED!
Please keep us in your prayers! Connor does have pen pals now and I can tell you it has been the best thing ever for him!! He even told the nurses about his pen pal and his new friends!! Thank you all!!

Hi Carol,

Sorry to hear about your little fellow - I know it's hard! I am an RT/not a CF parent. But I am raising my grandson, and he was so sick the first few years I had him. We tested him for CF, but the sweat test was negative. Thank God we finally found a doctor who got to the core of his troubles (bad reflux) and he was never hospitalized. (Now that he is 10 we are dealing with chronic migraines). My son, however, was hospitalized once for a collapsed lung when he was a baby and we spent MANY nights in the ER with his asthma. That's why I chose my career (started at age 30) - as Moms/Grandmoms, we really do have to learn so much and advocate for our loved ones - I could have "tested out" on some of the RT classes - lol! Just wanted to tell you to hang in there and to continue to be a blessing and be blessed by this special little grandboy of yours (as I know you will). I'm sure the whole CF community joins me in sending well wishes your way. Please, give him a great big hug from all of us!!!

God Bless!

 

[imported_MaggieB]

Hi! I'll be thinking of you guys.