August 18, 2020 at 10:37 am #26787
@colleensteele needs our support right now. She had to take her son to the ER last night with high BP and chest pains. He is being admitted. Please send positive thoughts, vibes, and prayers their way.
Colleen is one of the kindest people that I know. She is an amazing mom, caregiver, and friend. Let’s show her our love and support for her and her family.
Colleen, I am keeping y’all in my thoughts and prayers. I hope that they can find a balance with his BP and he will get some relief. Please try and rest when you can, too. We are here to support you when you are ready. Update us as you can. We love you!
August 18, 2020 at 11:05 am #26788
August 18, 2020 at 2:21 pm #26794
Colleen so very sorry Cullen is in the hospital. My prayers, thoughts of good outcomes are with Cullen, you and your family. Please remember to take care of yourself too. Warm hugs from my husband and myself.
August 18, 2020 at 3:15 pm #26798ShannonParticipant
Colleen I am praying for your son! I hope that your taking care of yourself and resting as much as you can. Please stay strong and keep your Faith. I realize it’s hard when it’s our kids and not us. But he will get through this! One day at a time. Please keep us updated.
August 18, 2020 at 3:35 pm #26799
August 18, 2020 at 3:55 pm #26800Douglas KnuthParticipant
Sending support and love for you, your son and the rest of your family. Praying for a quick and complete recovery. It’s hard to do I know, but take one day at a time.
August 18, 2020 at 5:10 pm #26802Mendo BruceParticipant
Sending best wishes and support
August 19, 2020 at 7:04 am #26805SherriParticipant
Looking forward to a positive update concerning your son’s condition. You are a constant source of comfort and support for everyone on the forum. Sending the same to you and your family.
August 19, 2020 at 7:45 am #26806
August 19, 2020 at 1:07 pm #26810Nancy FantParticipant
Colleen, I am lifting your son and your family up in prayer – that the doctors can home on with exactly how to treat Cullen to heal him quickly and get him home! 🙏🙏🙏🙏🙏🙏🙏
August 19, 2020 at 2:12 pm #26812
Thank you so much @jenc. I appreciate how caring you are, not just towards me but everyone.
To update everyone: my son has stage 3 kidney disease and trouble keeping his blood pressure regulated. On Monday night it went dangerously high then meds dropped it too low and too fast. He got really sick so I took him to the ER.
He was admitted and staying several days for monitoring as they try a new medication and increase one he is currently taking.
He had a rough night but is feeling a lot better today. BP is looking better too.
Thank you everyone!
August 19, 2020 at 2:18 pm #26813
I just read through everyone’s messages and they mean so much to me! I can’t thank you enough!
August 19, 2020 at 3:25 pm #26815
@colleensteele, my heart aches for you. But I am happy that today Cullen is doing better. I am hoping and praying that he will do better on this new med. Please take care of yourself and let me know if there is anything that I can do.
You are so supportive and kind to all here, and we want to offer that same compassion to you. We will be here when you are ready to update. Thank you for letting us know.
Thank you all for your sweet words of support to help Colleen during this difficult time. – I am sending you hugs from Texas, @colleensteele.
August 20, 2020 at 4:58 pm #26832
August 20, 2020 at 5:02 pm #26834
I’m so sorry of hearing of your son’s struggle with lung disease and now in the hospital. I know being with him is so very hard unless you have nurses and doctors there who truely like your son. If you are lucky enough to have a son who can get these people to adore him, then you can go about your daily routine knowing he’ll be cared wonderfully by the staff. If not, then plan on staying with him 24/7; you can take breaks when other family members or neighbor help you out by being with him
I wish you both the speediest recovery and love. Know that all of us are sending great vibes your way.
lots of big hugs,
August 20, 2020 at 5:22 pm #26836
Thank you @annefox. I have been staying with him except for last night. I went home to shower and grab things we need that we didn’t bring to the ER. Cullen is pretty likable guy and usually gets along well with hospital staff. They have been taking very good care of him except for one mistake that I will share with everyone in my next post.
I appreciate your concern and kind thoughts.
August 20, 2020 at 5:33 pm #26837
Update: Well, I’m working from the hospital. Cullen will be here until at least Saturday. His labs continue to show that he definitely has some type of major episode that his kidneys did not like. The theory is that the new blood pressure medication he started a few weeks ago is not a good one for him to be on because it interferes with his immunosuppresents. His body had a bad reaction to it and instead of helping his BP, it made it go crazy, from dangerously high levels to a concerning low…back and forth.
They have put him back on amlodopine but this time, 2 times a day. They have taken him off of metoprolol and are trying Coreg. So far his BP has improved. His kidneys are still angry and they don’t want him to discharge him util they are doing better and his BP has remained stable for a few days.
I went home last night and returned this morning to find out they accidentally gave him 3 doses of his immunosuppresent yesterday instead of two. Luckily it hasn’t made him sick but this is the medication that attacks his kidneys the most soooo….yeah. Not real happy that happened.
August 20, 2020 at 8:41 pm #26842
It is so hard to trust the hospital medication staff to use their common sense. I had been on a ward having toxemia from an infected wound. When I went into the hospital I told my hubbie to watch my meds like crazy since I would be “out of it” for a couple of days as my fever rages until my antibiotics contain my disease. When I came back into being me, the nurse told me my BP was very low and if I had another low BP, I’d be taken to the ICU. In came my meds and I made them tell what each pill was for (same kinds of meds, but not same ones) They told me BP med and I asked if it was to lower my BP or to raise it–she’ looked horrified and ran out. You’d think someone should have caught it.
You’d think someone should have caught your baby’s 3rd extra dose of immunosuppresent. I’m so glad he’s OK, but still……….he could have been really hurt! You need to be able to leave the hospital without fear someone will do wrong.
Do you have someone who could take over for you for a few hours each day to make sure everything is done right?
Oh, you poor mommy and your sick little loved one. Do take care and keep him in good care and get him home soon. Tell him silly kidney stories to help him heal.
We do feel love for you both.
August 20, 2020 at 8:50 pm #26847
Wow @annefox! Way to advocate for yourself. That could have gone on for a long time before someone noticed.
My baby is 20 now, but once my baby always my baby…(he would be rolling his eyes now if he knew I said that). He knows his meds and always looks at them before taking. He insists they only gave it to him two times like they are supposed to. But their logs show it was given 3 times and his levels are too high. I think my son is just experiencing hospital time warp. You probably know what I mean, when you can’t keep track of the days and times…they all kind of blend together. Poor guy, I think he is feeling defensive about not catching the mistake himself.
For the most part I trust his team but they are human and humans make mistakes. That’s why I try (and have been teaching Cullen) to be on-top of things too. Think of it as team work. Well, a similar mistake was almost made again with his other immunosuppresant. I was here and caught it before it was given.
Due to hospital policy concerning covid, I have to stay in his room. If I leave for even a few minutes I can’t return until the next day. I went home last night but I’ll be staying with him until discharge…hopefully on Saturday.
Thank you for your concern! I really appreciate it!
August 21, 2020 at 3:15 pm #26866
I’m so glad he’s willing and wanting to become his own advocate. He will still need you overseeing during the bad times. So glad you can stay wwith him.
When mine was 12 (now 42) he was in Washington DC’s children’s hospital for 3 weeks of tune-ups then 6 weeks then 3 on again. He had interstitial lung disease and bulbous lesions. Plus my bad type of lungs. I never stayed over night. I visited at least once a day and so did his dad. He gained so much weight eating all the high carb desserts in the open to everyone fridge (cystic fibrosis kids were the main group and they were skinny) He went through 3 game boys (pilfered out of his room, so I refused to buy him any more until after he got well. He was almost well by 13, but then he started getting problems with his ears (he only had one that worked). He had 3 ear drum replacements due to the drum being sucked onto the little bones. Each time he got a new ear drum, he lost a little more hearing. He has all his vowels and no sibelent sounds (S’s, CH’s, SH ‘s, etc) Does fine hearing from his right ear pointed toward you and a little lip reading.
Is Collen (your baby), in college now? Doing course work from his computer?
wish all will continue to get better and Saturday will be the big day for him to go back home.
August 21, 2020 at 5:58 pm #26867
What a battle you have been and still are in. It is very good to hear Collen may be going home tomorrow and you both can get some rest. Coreg has been a wonder drug for my husband for his heart issues. I hope it will do the same for Collen. It seems being in the hospital and expecting the correct meds at the correct time is nearly impossible but oh so important to get it right – I am so sorry Collen experienced one terrible screw up! Praying for you both and hoping you both get home tomorrow! Hugs across the Sound 🙂
August 23, 2020 at 4:40 am #26884TraceyParticipant
I’m so sorry that your family and Cullen are going through this. I keep you in my thoughts and send positive vibes to you.
August 24, 2020 at 3:55 pm #26897SandyParticipant
I haven’t read messages for nearly a week and have just read about Cullen’s hospitalization. I am hoping and praying that both of you are home by now, resting and recuperating. Hospital stays are SO exhausting; add the stress of having to track his meds so closely, COVID restrictions, and drug reactions and I’m guessing that you two are utterly exhausted. I’m sending wishes for healing, rest, and calm . . . you are both overdue for it.
August 24, 2020 at 9:52 pm #26899
Once again, I just want to thank everyone for your words of concern and support last week. I read every message and they each meant so much to me. Cullen was discharged on Saturday. They managed to get his kidneys and blood pressure better stable than they have been in over a year. Lot’s of medication changes that he is trying to adjust to as well as a lower BP than he is use to. Just praying he can maintain at home what was achieved at the hospital. IV fluids, protein and magnesium tend to be more effective than drinking water and popping supplements, but fingers crossed it will be sufficient enough to keep him well for longer this time.
Thanks you @cdvol3gmail-com for sharing your husband’s experience with Coreg. So far that and amlodopine seem to be helping.
@sandydenn we were exhausted by the time he was discharged. Being a heart and lung transplant patient with kidney disease and other co-existing conditions requires many specialists. It felt like there was always a doctor in his room requesting more labs and tests and on-going vitals. It was impossible to get any rest. We slept A LOT this weekend!
August 25, 2020 at 1:41 pm #26907
We are so happy @colleensteele that y’all are home and resting. I continue to keep y’all in my thoughts and prayers. I, too, know how important these med changes are and hoping this is the best regimen for him.
This is awesome news about his BP and kidney improvements. I pray this continues. You are loved here, and we are always here to support you. Take time to rest, too. You need it, not just Cullen.
August 25, 2020 at 3:18 pm #26918
Yeah! You and Collen are home and the new meds seem to be working. Please do rest you both need it. You have been through an awful lot and a very stressful time. Well wishes, gentle hugs and love and hoping Collen contines to feel better each day and his meds continue to be better for his kidneys and heart.
August 25, 2020 at 3:19 pm #26919Jimi McintoshParticipant
I am glad to hear that Cullen is on the mend, he is truly a fighter. Kidney issues and BP issues can change your life rapidly. I hope they can get and keep his BP regulated.
August 25, 2020 at 7:19 pm #26926Carol alexanderParticipant
Cullen so glad your son is on the mend and you are their to watch over him that is so important to have someone to watch what goes on.
Blessing to the both of you
August 27, 2020 at 10:36 am #26953
August 27, 2020 at 1:05 pm #26957
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