Updates For Jacob

Update from Kieva 1/10/ 2026 

I wanted to update you on baby Jacob. We are still in the PCICU. He has been taken off of the Bipap machine and put onto a CPAP machine. The infection he got weeks ago that was in his lungs has done some damage that's going to take a long time to heal from. He also fought sepsis a couple weeks ago from the same infection that got into his blood. He is doing better now though. Yesterday we had a big meeting for him and we all agreed that despite our best efforts Jacob is not going to recover his respiratory function fully in the immediate future. In the interest of getting him home and out of a hospital bed with tubes strapped to his face 24/7 we have decided it's time to get him a tracheostomy. This is a good thing and a bad thing. 

My husband and I both have to do extensive training on Trach care.

He's changing so much! I can't wait to see everything off of his face and him smiling.  Kieva

From Grandma Donna, I would like to add that this is a difficult thing to learn Trach care and especially when even being in a hospital makes some people uneasy much less doing a procedure on your child.  Please keep Kieva and her husband in your prayers to help them to learn this special care for little Jacob. 

You can find some pictures of Baby Jacob and the first article  in the forum  called A special Thanksgiving wish. 

Thank you, Donna for posting this. I just saw your post today after Sharon  told me she read the update.  I appreciate you updating people. I was just telling my husband that Jacobs first birthday is going to be a big one because his first year of life is likely going to be the roughest for him (and us). 

I would like to post more pictures but it is hard to find pictures currently that I can post that won't be disturbing to some because a lot of them are difficult to look at, especially now while he's in the middle of his struggle. Later, they likely won't be as hard to look at because they will be a testament to what he's overcome. It's pretty widely known among the Down Syndrome community that the first year or so of life is usually the roughest (I'm glad to know he won't remember it). I do hope that in a few weeks there will be more pictures that aren't hard to look at as long as a trach doesn't bother people. Having the trach will make it so that Jacob can now focus on learning to play and simply be a baby. 

While I was home sick with a cold last week, his doctor called me very excited because Jacob smiled while occupational and physical therapy were working with him! The nurses , doctors, and therapists have all grown quite fond of "Mr. Jacob". Jacob likes working with the occupation and physical therapists. They do fun things with him. I am grateful for them also because they teach me how to safely play and work with him while he recovers and they teach me ways to help strengthen his muscles.

 Transferring to another hospital is going to be hard because we have become quite fond of our nurses, doctors, and therapist who know Jacob so very well. I don't think I've met one person here that I don't like. Take, for instance, Dr. Cardarelli who is a very skilled pediatric cardiologist and performed Jacobs heart surgery....he is about as humble a man as I've ever met yet the thought that he has the strength of mind and emotion enough to perform these life saving surgeries on BABIES is mind boggling. The nurse who made Jacob his Thanksgiving art project and unknowingly gave us his first footprint since we were not afforded that luxury the night he was born. Or Mr Colby (one of his nurses) who saw a stuffed animal that reminded him of Jacob, acquired it, and quietly tucked it in next to Jacob one day while I was on another home visit. I wonder in the mundane routines of their days if they truly understand how much they change and touch people's lives....

Our Sharon is doing something very 1940ish in that this Saturday she's coming to visit Jacob and I (again). I am grateful for this blog introducing us! She and I hope to try our hands at crocheting as we visit bedside. Thank you to all those who have found an interest in Jacobs journey and have kept us in your thoughts and prayers. 

New Message from Kieva,

Jacob had his surgery today. I have a sinus infection so I could not be with him in case I was contagious. That was very upsetting but I did get to zoom meet with the doc and nurse after he came out of the surgery. He did well. I got lots of screen shots of him and he looks so good. He looks peaceful and almost looked like he was going to smile! It makes me feel so much better to see his face bare and him breathing comfortably. He struggled with that mask. It wouldn't seal right and it would blow air all over his face. They had to put padding all under the masks and straps to avoid pressure sores. It had to be re-adjusted multiple times a day...all that was so much for that little man to bare! But now his face is free. 

Grandma Donna Wrote, I am so happy Kieva that this surgery has now been done and Jacob has his beautiful face free from that irritating mask.  This is going in the right direction now to getting home and having all of your family together.  We will keep Jacob, you and your family in our prayers and for your sinus infection to completely heal so you can be back with Jacob.  

Much love, Grandma Donna

Oh, I only just now saw this.  Must have somehow missed it when it was initially sent.   I have thought about you all and wondered how things were going.  It's so good to hear that Jacob's surgery is over and that soon you will be going to the new hospital where you and your husband can learn the skills to take care of him when he gets home.  Tiny steps but leading in the right direction.

Take care.

Thank you for your thoughts and kind words, Victoria W. Tomorrow he will have his first trach change. The docs and nurses have been looking forward to this day because he should be fairly well healed and they can start allowing him to move around a bit more. For the last week he has been petty sedated and mostly sleeping. 

Today I came back to the hospital from a home visit and he was wide awake. He was looking around intentionally and really engaging with the nurse and I. He looks like a totally different baby since his trach surgery. I feel like any day now he's going to be playing and laughing..... Like we might actually have the worst of all this over with. 

Next week he will be 5 months old. I had imagined before he was born that we might be in the hospital for a couple months but 5 months....it's been a long long journey and we likely have a couple more months still before we can get home. 

Grandma Donna Wrote, 

So happy to see a new update on Jacob, that must have been so wonderful to see Jacob looking around and engaging with the nurse.  Oh how that made my heart happy!  Charles and I constantly keep you, Jacob and your family in our prayers. 

Kieva, you and Jacob remain in my prayers. What a comfort to have the care of such good people for Jacob! He's a beautiful boy.

Hello everyone! Thank you Margaret P and Grandma Donna. Jacob first trach change went beautifully. He is being weaned off of sedatives now which can cause some rocky moments due to withdrawals but it hasn't been too bad so far. 

Jacob and I are hunkered down and riding out this storm at the hospital (of course). The docs think it best to convert his feeding tube from a G tube to a GJ tube. I'm not well versed on all this but I do know that instead of feeding straight into his belly he will be fed straight into his intestines to reduce the risk of reflux and aspiration pneumonia. They were considering doing a surgery on him called a Nissen but they don't think he requires that at this time. That surgery looks serious so I hope he never requires it! They were aiming to take Jacob to the OR (again) tomorrow for the conversion but that is unlikely now because of the snow and limited personnel available. Therefore, sometime early this week they aim to do the conversion. They say it's not a real complicated procedure especially since he already has a G tube so I'm not too worried about this procedure. This is one more step closer to going home that will help keep him safer in a none hospital environment. Hopefully the conversion is the last time he sees the inside of an operating room for a very very long time! If I'm counting right this will be the 7th time he's been taken to the OR and put under anesthesia for surgery or other procedures. 

Jacob has discovered his toy! I placed a toy that I've dubbed "His everlasting gobstopper" next to his head just to see if he would even look at it.  A few minutes later I heard rustling in his bed so I went to check on him and he had found a way to get the toy close to his mouth so he could nibble on it. He was looking very intently at it and even knocking it about with his hand. I was so excited to see him exploring. Now that his delirium has pretty much gone away I am starting to see his personality come out. I can't wait to see him playing more and more. 

As always, thank you for your continued prayers and interest in my little boy. God bless. 

Grandma Donna wrote,

Awww Keiva, I cried a happy cry about the toy (Heart) that is so encouraging news, this moment must have felt like climbing to the top of a mountain.  I hope that this next surgery goes well and we are hopeful that he will not need that other surgery.  

I feel this wonderful little personality wanting to emerge from Jacob.  Much love and warmness, Grandma donna

Kieva, I can't believe 5 months have already passed.  I was surprised to read that Jacob will be 5 months, I guess this week!  He has come a long way and sure has had a challenging start!  He is so sweet looking!  I am trying to decide if he's a red head or more like a reddish brown?

I hope that his upcoming surgery goes well, and that life gets a little easier for him, you and your family.  I look forward to seeing your little guy's personality blooming!

Hello all! Thank you Debbie. Jacob's hair was dark brown when he was born but it is lightening and does seem to have a hint of red in it. My daughter had reddish colored hair when she was born and it lightened to a blond color now. I suspect Jacob will settle into a dark brown with reddish tints. But only time will tell. 

Jacob is scheduled for his procedure here in a couple hours. They had originally planned it for earlier this week but the snow storm that hit this region meant less personnel were available at the hospital. They might take him in earlier than 9 AM though but for now he's washed up and resting as he awaits their timing. 

The sock on Jacob's hand is to prevent him from pulling on the yellow tube on his face. In a few hours we shouldn't have to be concerned about that.

Grandma Donna wrote, 

Kieva, we have been keeping Jacob in prayers for this new procedure.  I hope that everything is going well today.  We are praying for your strength too and hope the your sinus infection is clearing fully and out of your body.  Hugs to you and Jacob, Grandma Donna 

Thank you Grandma Donna. Jacobs procedure went well. It was done and over within an hour. But we did have a rough afternoon. He took a good hour to an hour and a half to calm after and he was warm to the touch. We gave him Tylenol and took his blanket off of him. He fell asleep but then woke up hot to the touch and thrashing around. I tried everything to calm him but eventually I asked the doc for any medication he could be given to calm him and treat his fever. We also put cool rags on his forehead which he seemed to enjoy. He usually hates cold stuff. Seeing him that worked up really stressed me out. I worry about his heart when he's that upset. They think the fever was just an inflammatory response to the procedure. After he calmed, he slept for a good while and woke later cool to the touch and calm. I am certainly glad that is over.

The docs are ordering a helmet to help shape his head because the left side of his head is very flat due to his favoring that side. We have not addressed this with positioning as well as we could have because his comfort was more important through this journey than the shape of his head. But now we can focus on those less dire things. Early next week the docs hope to transfer him to another hospital for recovery and home care training on my part. This will require another ambulance ride. I'm grateful that each ambulance ride he has had has never been while he was in a life or death crisis. 

I called Jacobs name while he was sleeping and managed to get half a smile and a picture of it. He's been showing more and more "smiles" though I'm not sure they are under his control yet. I live for those smiles. I included that picture below. The red mark on his face is from the tape that was taken off during the procedure. 

what a beautiful boy!

Grandma Donna Wrote,

Kieva, I am so glad that procedure is done and over with, the fever and Jacob being upset had to be very concerning to have another what does this mean moments.  Moving Jacob to another hospital is a happy and sad time, to remove him from the care of these wonderful nurses and doctors but knowing this next step is going to get you home.  We will keep praying, for Jacob, for you, your family at home, your husband that has been juggling work and family.  May God fill you with strength.

Hello Everyone. I figured I probably should update these forum because there has been a change in plans. Late Sunday night and early Monday morning Jacob started showing major signs of delirium and very quickly spiked a temperature. His blood pressure plummeted and his heart rate raised sharply. 

At first they were thinking his raise in temperature was due to routine vaccinations given the day before. But as it went higher and all his other vitals started getting weird they quickly realized he was likely going septic again. They started antibiotics quickly and even ended up putting him on a paralytic and sedative to calm him as he got through that. They took samples to test for infections. So far all respiratory viruses they've tested for has been ruled out. They think it might be his PICC line that's been in for a month. So that was removed. 

He's been hooked up to all kinds of medications, fluids, and monitors. Even put him on a mat that regulates his body heat by the flow of water of varying temperatures. Today he is doing a lot better. They still are trying to see if the PICC line was the source of infection of not. But he seems to be responding well so far. It looks like we likely won't be transfered to the other hospital until early next week if all goes as planned. The good news is, this is not heart or lung related, as far as we can tell, so this event is just a bump in the road before we are on our way. 

I tried updating all this yesterday but for some reason it didn't post..I might have just neglected to submit it properly. Thank you for all those following Jacobs journey and continuing to keep him in your prayers. 

Grandma Donna wrote,

Thank you Kieva for the update so now we know more about what we should pray for.  I hope they get this figured out so you can learn more about the things that can cause Jacob to have issues so you can have some insight and get ahead of things for when Jacob does get to go home.  

Sometime the page will time out if you start typing and leave it for a bit.  I have had it to do that when I am commenting, that is the only thing I can think of.  Warm hugs and love, Grandma Donna

I just saw the new update posted under "about this forum."  Maybe it could be moved here?

Tea S, I realized I posted in the wrong forum after I posted it. I emailed Donna to see if she is able to move it. If not, I will attempt to move it this evening. Thank you. Sorry for the confusion.

Good morning,

I wanted to let everyone know that Jacob has finally been transferred to the pediatric hospital that will be training us on his tracheostomy care before we go home. It took three tries to finally transfer. 

The first transfer attempt was canceled because Jacob developed sepsis. The second transfer attempt was canceled because Jacob developed a fever of 106F/41.1C and we never did find the cause of it. Three weeks later we are now settled into the pediatric hospital. I am sorry it took so long to update you all but repeatedly saying we've had a set back was awkward to post. 

The new hospital is so much smaller! It's quieter and in a more rural area. The first night there was a bit of a shock for me. While the move is a good thing, going from an intensive care unit which is a loud and busy environment to a slower and quieter environment is a bit of a shock on the system. I was almost a bit homesick for the PCICU! We had got to know the in people so well and even the hospital. But that shock is wearing off now and we are acclimating to our new environment. 

Today, after church, my husband and I are going to make the 1.5 hour drive back to Baltimore to see Jacob and for my husband to get his first training session with the respiratory therapist. He has decided to rip this off like a bandaid and instead of starting small he is jumping into the most daunting and new wrecking task that trach families must face...our first trach change. He must take the trach out and put the new one in. This action takes all of ten seconds but it's a huge step in our lives as parents in transitioning to a trach baby family. If you can do that part of the care, you can do any part of the babies care. I am excited to have this done and over with. I have personally taken the trach out and replaced it more than once. The first time for me was unsettling. The second time was easier and I am sure it will get easier and easier as time goes by. The respiratory therapist at the pediatric hospital gave us a stuff bear with a trach so my husband can see the trach and how it works before we even go in for his first training. 

The docs are trying to get us approved for up to 22 hours a day of home nurses. I was t expecting any because of our location. I am still not sure if we will get a nurse to be able to come to our house but we are currently rearranging our house for the possibly of many many people coming in and out at all hours of the day. We are going to need things I never thought I'd need...the changing table I almost got rid of because I never used is about to be unpacked from the attic. We might have to buy a table for the nurse to sit at to do their computer work. We might have to add another breaker box to our house to handle the electric load his hospital equipment needs. Who knew getting a recliner chair in his room is a bad idea because it sets the night nurses up for failure because it gives them a comfortable place to sit where they might be lulled to sleep! So no soft chairs! The small fridge will likely happen and possibly a small coffee station in his room. We have to declutter so that we can easily clean the house. We might have to get a new fence system outside so our dogs can be put outside more because of strangers coming in the house constantly. We are trying to buy a new van to accommodate us and all his supplies and I am going to have to buy a double stroller so that his supplies can be put in one seat and him in another...there is so much to think about and so much to buy! Even typing all of this out is a bit overwhelming. 

Jacob is settling in well though and we are very much looking forward to all the progress he is going to make while at this hospital. The docs say they are going to be making him a custom chair in a room there at the hospital they have come to call, "santas workshop". Workers on site design and build these custom chairs out of wood, vinyl, and padding for the children who need them. Another women volunteers there to sew adapting features on the children's clothes that can accommodate the g-tubes. I have asked if they can ask the women if she will teach me how to sew these things. Buying the clothes with these special features already on them can get very very expensive especially for a baby who will put grow them in a couple months!

I will end by adding a picture of two if I am able. The first picture is Jacob getting ready to be transported to the new hospital. The second is him settled in, and the third is the training Teddy bear. God bless and thanks again for the caring thoughts and prayers for Jacob. 

Grandma Donna Wrote,

Kieva, I am so happy to see an update on Jacob.  This is a very big change for you and Jacob at the new hospital but good preparation for the lack of medical equipment sounds from the PCICU to be more prepared to the sounds of home life.

I love the training teddy bear, what a wonderful Idea someone had. 

Jacob is growing and his hair is getting longer and I think of how he is going to go through so many changes, especially when he can be around his little sister and family that is waiting for him at home.  This interaction will be so good for him.  

When you wrote about needing to work out a fence system for the dogs due to nurses coming in and out gave me flashbacks to that same issue we went through the nurses coming and going with when Madge was with us and they never came when I was expecting and then came when I wasn't and that constant having to run the doggies out to Charles workshop and then back in when they left.  Just that one thing was so stressful to me, so whatever you workout make it as easy as possible to be able to just open a back door or front door that the nurses are not using to get them out easily because whatever you do is for much longer than what we went through.  The main problem is the dogs did not like this, they wanted to be inside where they normally were.  We finally worked out gates in our house where we had part of our house that was nurse proof.  :)  This was another reason our living room became the main room for Madge and the nurses.  A living room can be swapped and a bedroom can become a living room as long as there is another outside door.  

There are so many wonderful people in this world that do these special things such as sewing on the needed adjustments on the clothing, those that step up and help.  

I have already said a prayer for today with the trach change.  Love, Grandma Donna

Kieva,  I am so glad that Jacob is at the Pediatric Hospital and you and your husband have started training.  It is nice that you can be at home more too.

One thing I thought I would tell you that you might add to your long to do list is that our electric company asked that people who use electrical powered medical devices let them know in case of power outages.  They did say that they don't guarantee that they can get the power back on quickly, but they like to know this.  I don't know if this would apply to Jacob or not since he doesn't need power for his trach, but might have other things that would.

We also had to deal with dogs when we had home health services here and I didn't find a really good solution.  Mainly I would hear the car come in the driveway and get them out of the way.

Wish you well with your training and hope Jacob gets home soon.

Thank you for the update, Kieva

Jacob looks so tiny on the transfer gurney!  And so cute and alert in the second picture!

I hope that life is going as smoothly as possible at your home.  Must be a huge change for you all!  In regard to the dogs, if you haven't thought of it already, perhaps the home care people can text you ahead of time to let you know they are on the way.  I imagine all kinds of thing can delay them, especially if they are visiting other homes before you.

Good luck to you all!

Debbie (in PA)

Hello All,

Today's update is not a good one. But, it certainly came very close to being a really bad update. The good news is, it's not that really bad update. 

On the 18th Jacob was transported by ambulance back to John Hopkins. He came down with sepsis again and again we don't know why. It took a bit before the docs at the other hospital realized what was going on. Therefore his treatment for sepsis was delayed. I had advocated for them to take his temperature more frequently and in a specific way and had they adhered to my request, I am certain Jacob would have been diagnosed and seen way earlier. Early treatment of sepsis is key to a good outcome. As it is, he had to endure an emergency surgery on the 19th to open his stomach and relieve pressure. The docs warned that the stress of the surgery could kill him either during the surgery or within a day after but they had to do it. My husband and I got to see him before the surgery which was incredibly hard. Longer story short, he did make it out and it went well. 

 That night, he had been maxed out on his blood pressure meds and his blood pressure was still dropping. They told me I should probably hold him because they have pretty much maxed out what they could do for him. I held him late into the night and watched as his breathing got worse and worse. It came to a point where it looked like he would pass within minutes. I prayed hard. I gave him to God and was sort of at peace with it as much as I didn't want it. We discussed autopsy, we started to get his hand prints on canvas but we didn't finish that project. I even discussed stopping some of his life supportive meds and what that might look like.  The nurse even let me know after listening to him that his breathing was starting to subside. I remember thinking that the only way he has even a remote chance is a miracle because there is absolutely nothing else that can humanly be done for him. I saw no way he'd make it.

Right at the brink of death his decline stalled. I ended up having to put him back into bed and decided I wasn't going to make any decisions until I got a nap because I was beyond exhausted and my husband had headed home already. The nurses said they'd wake me if he got worse. When I woke not an hour later the docs and nurses were almost literally scratching their heads in disbelief. He had turned the corner and was improving. I have never seen a human being that close to death. It's unbelievable that he made it that night.

The whole floor is buzzing about the fact that there is no medical explanation as to how he is alive right now. We are finally at a place where we can confidently say that as long as no major complications arise, he is likely going to make it. He is still very very sick. At this point we are assessing the damage. He likely will lose a couple toes and the tips of a couple fingers. We are consulting with many docs and hoping that all his limbs are safe. 

I am desperately trying not to be angry with the hospital we came from. They are a recovery hospital that focuses on therapies, not an ICU. That said I know very well their lack of awareness came very very close to killing my son and likely has lead to even more disabilities for him. I even warned them before that he had taken this path before and I feared he might take it again since we never found out the cause. The docs here at John Hopkins are contacting them directly and setting them straight on the mistakes they made and likely telling them to listen to me next time. I will yell next time if I have to and am likely going to carry my own thermometers and possibly blood pressure cuff from now on. 

Sepsis is so serious. Knowing the signs and treating earlier means the difference between life and death, ability and disability. We will likely be here at John hopkins for weeks, if not months more now. One of these days I pray we will go home. 

I debated on this update. I mean it's almost unbelievable to me to even write it out. I can almost not even believe all that this 6 month old has brought our way. I just hope there isn't a next thing in this serious of "unfortunate events". I pray that one day these horrible days will be behind us and Jacob can just be a kid. 

I am sorry for such a morbid update. But the morbidity of it makes the miracle of it more understandable. Needless to say this is all messing with my head a bit now. Prayers are greatly appreciated for Jacobs recover and for our mental stability. God bless.

Oh Kieva, that must have been so frightening.  I hope that will be the last big scare you have to go through, and that his health will steadily improve from here on out. But even if the worst eventually happens, know that the love you give him now matters.  You are very strong to be spending so much time at the hospital with Jacob, so he doesn't have to be alone.  I'm sure he feels so safe and loved whenever you hold him or speak to him.

Kieva, my heart aches for you and Jacob. I pray for you everyday.

I recently had a horrible experience with a family member and her hospital care. I too would explain her needs & previous medical history and would be ignored. Like your son this had serious consequences.  I hope you are in better hands now. 

Kieva A I am sorry that Jacob and you and your family are going through this serious setback and if they had listened to you it could have been avoided or at least minimized.  I will be sending prayers your way for strength for you and recovery for Jacob.  

Oh Kieva, I am so sorry baby Jacob had such a serious setback!  It sounds like it was terrifying for you in many ways.  The older I get, the more I am willing to lean in to mystery and miracles, and I am so happy Jacob is your miracle.