Strength For Jace

***Please scroll down for updates!***

Jace was born 09/19/12 at 36 weeks gestation. He grew as a strong boy the first several months but encountered complications with severe anemia and oxygen requirements due to unknown lung issues. After multiple trips to see doctors and specialists, and after a 5-day hospital stay in May 2013, he was admitted to the hospital again on Sunday, September 1, 2013, after persistent high fevers of up to 105.1 degrees even while medicated. It was quickly discovered he had a severe case of pneumonia which turned out to be bleeding in his lungs. He has undergone multiple work-ups and had a bronchoscopy and CT scan Sept 3. They are keeping him sedated and intubated as he currently cannot breathe on his own and more tests will follow (including a possible lung biopsy). He had more x-rays and a contrast CT on Sept 4. They still don't know the cause of the internal bleeding. His dad, Tommy is an active duty soldier in the Army. His parents have not left his side and continue to pray and have faith that Jace's precious little life is in God's hands.

Update 09/05/13: The CT and EKG were unremarkable. His bronch looked better than the last. The pulmonary and cardiac specialists walked in just as his oxygen levels hit 0 and he turned dark purple. He stayed at 0 for awhile and his heart rate (HR) dropped to 60. They went to work on him and his HR spiked to 220 which is about as fast as the human heart can go. They said a large piece of mucous was lodged in his lung and they broke it up and got it out. His color returned and his oxygen and HR returned to normal. At that time I mentioned for the 3rd time to another set of doctors that his stomach looked different the past few days. They felt and his abdomen muscles that run vertically between his abs are stuck in a contracted and tense state, like they are "guarding." They don't know why. They will do some gastrointestinal tests later today. He is continuing to lose blood and may require a transfusion. Please continue to pray.

Update 09/06/13: Jace had another tube occlusion today which spiked his heart rate to 205 and lowered his SPO2 to 46. Not as scary as yesterday's episode. The mass in his stomach was a distended bladder which was alleviated by a straight catheter. His bladder retention was due to the Fentanyl they are using to keep him sedated. (However, the many different med concoctions they are using have not been successful at keeping him sedated. He keeps waking and thrashing, which can cause irritation from the tube down his throat. The only 2 meds that are working best cause his BP to drop too low so they are trying to compromise with saline. Although he has not met his allowable max doses, he is technically on enough meds to sedate a full grown adult but he keeps trying to break free anyway because of his fiery personality). They do not know where the bleeding is coming from but suspect small capillaries in his lungs may be leaking. They are still considering a lung biopsy but don't want him intubated without cause so he may be extubated as early as tomorrow morning after pressure tests determine whether he can breathe well enough on his own. His ventilator settings are weaning down slowly and he is remaining stable so that is also good news. We just spoke with the G.I. Team and they believe his liver is swollen. They will do an ultrasound to see if some of the internal bleeding was caused there. For now, hematocrit levels are stable at 26. I will update more as soon as we know anything!

Update 09/07/13: The ultrasound results from yesterday came back and everything looks great. Jace's blood levels have actually increased by a few points, as his hematocrit is now 29! However, they still do not know what caused the bleeding, the exact source of the bleeding, or where all the blood went. He lost well over 1/3 of his blood volume but never expelled any blood through vomit, urine, or fecal matter. They performed the extubation this morning and it was very traumatic for him. His heart rate spiked into the upper 220s for about 15 minutes but remained high (above 180) for over an hour. He initially was not breathing well on his own (despite passing his pressure tests and blood gas tests earlier this morning). He is on steroids to help eliminate his persistent stridor and they are continuing his antibiotics as he previously tested positive for rhinovirus and alpha strep. Jace is tired but is excited to have his arms freed from the bed retraints and he is enjoying being held in the arms of mommy, daddy, and his grandparents.

Last night his feeding tube migrated from his intestine back into his stomach which caused him to vomit everything he had been given through his NG feeding tube. They removed the feeding tube and will place it back in him tonight or tomorrow morning because he needs nutrients and is not ready to take food by mouth. They will conduct a swallow test on Monday to see if he is aspirating what he eats/drinks. They will then mildly sedate him again on Tuesday for an upper endoscopy to explore his G.I. tract for any further issues/bleeding. We may be out of here as early as Wednesday 9/11 but they will likely have him return in a few weeks to have the lung biopsy done once his airways have healed a little more from this last intubation. So nothing much happening until Monday. Will update again then. Thank you for all the prayers and support!!

Update 09/08/13: Last night, Jace had problems going through some pretty severe withdrawls from his sedation meds (Fentanyl). He was having frequent and worsening muscle spasms and body convulsions. He hasn't slept in over 14 hours and he was exhausted. These withdrawals were preventing him from getting any rest. At 1:00am they gave him a small amount of Oxycodone which binds to the same receptors that his Fentanyl did, only we can wean him off of this in much smaller amounts over a longer period of time. It helped him get a few hours sleep last night. They gave him some Ativan to help him transition from the Fentanyl as well. They are progressively weaning him from high flow oxygen to low flow in his nasal cannula. They just replaced the feeding tube a few hours ago so he can get some nourishment, as he has only been on IV fluids the past day and a half. However, they haven't started feeds yet. The swallow test will take place on Monday as well and the Upper Endoscopy is still on schedule for Tuesday. They were going to move us from the PICU to the children's ward upstairs since he has been extubated, but he is showing some signs of stridor, especially when he gets upset or agitated. They will keep him here in the PICU at least one more night to watch his breathing and his irregular heart rate (which can jump from 90 to 113 to 82 to 146 to 165 in a matter of seconds). He still hasn't really smiled since he was extubated and he is weak and uncoordinated, which is to be expected. He is gaining strength as time progresses. I really miss his little personality though. They will be doing a lung biopsy but want to wait 2-4 weeks for him to heal a bit more. They will track his blood count in the meantime to ensure the internal bleeding doesn't continue. He is stable for now. Your prayers are working! God is good!

Update 09/09/13: Jace saw the swallow team this morning. He was allowed a couple gulps of water from a bottle but then he stopped like he didn't want it. The swallow team will give him a full evaluation on Thursday or Friday once his congestion and swelling goes down more. The upper G.I. Endoscopy is scheduled for tomorrow at 3:00pm. They may need to reintubate him, which would be AWFUL since his airways are still healing from his last intubation and he is still very hoarse and sore. He has been pretty weak and irritable today. He was having more x-rays done and he started vomiting mucous, saliva, and blood. He had several episodes of vomiting. They gave him some Zofran which stopped the vomiting and just now resumed his feeds. They moved us out of the PICU and into the regular children's ward. They felt he was stable enough from a respiratory standpoint. We are still going to be keeping an eye on his irregular heart rate.

I noticed something very disturbing today. Jace's muscles have already atrophied to the point where he can't sit up on his own. He wobbles and is too unsteady. He needs to be held up in the sitting position. They said he will need physical therapy/occupational therapy/speech therapy. But we will be here another week so he will only become weaker before he gets better. He doesn't move much at all and is even too weak to really cry. He makes the cry face and he squeaks with his hoarse voice, but that's it.

They still don't have a diagnosis.

I'm broken and devastated. I can't stop crying. I hate that he is going through this and I want it all to be over. I miss my son.

Update 09/10/13: So last night was rough. He hadn't had a bowel movement for over 24 hours despite being on antibiotics. He had been having diarrhea and then all poop just stopped. He also started vomiting mucous, saliva, and blood. He continued vomiting until about 1:00a.m. He was given a dose of Ativan in case the vomiting was a result of his continuing withdrawals from the Fentanyl, and it was. So he hasn't vomited since. He was also given a glycerin suppository and we woke up to the beautiful smell of poop. He cleared his bowels quite beautifully, all over himself, his cords/wires, and his bed. His upper G.I. endoscopy went AMAZING today. They took pics of his esophagus, stomach, and upper portion of his small intestine. He responded well to the anesthesia and he didn't have to be reintubated, which was a definite concern. He was weighed at 17lbs 9oz this morning, which is just under a pound less than what he weighed when he got here. They have continued his tube feedings again so he can try to catch up on nourishment. I want to thank you all for your prayers, as Jace has been gaining a little more strength every day. He actually sat up in bed today and was playing. He even smiled and started to do a little wiggle dance briefly. He is definitely trying to get back to his old self! He is still irritable and seems to be in pain 95% of the time, which has seriously thwarted any attempts he has made to sleep soundly for more than an hour. His heart rate isn't jumping as high as it used to; now the concern is his heart rate is staying rather low. It used to be about 145-160 while awake, and 100-120 while asleep. Now it is about 95-110 while awake and 60-80 while asleep. We may have a Holter monitor placed tomorrow to monitor his heart for a period of about 24 hours to see why it is behaving this way. In the meantime, we have to be careful with any more doses of Ativan for his withdrawals, which can slow his heart even further. (To date he has only had 2 doses of Ativan ever, so that is not causing his current HR issues). The swallow test is still happening either Thursday or Friday this week, and after that, hopefully they will remove the feeding tube and allow me to nurse him and bottle feed him as well. So after all these tests, they still don't understand where the bleeding was actually occurring, why it started, why it stopped, or if it will happen again. I happen to believe the Lord is miraculously healing my boy (thanks to the faith and prayers of many of YOU) and so that is why the doctors can't explain anything. I will continue to pray this is not a chronic condition so that once he is fully recovered, we never have this issue again. Doctors are still talking about doing a lung biopsy in a few weeks once he is healed, just to see if there are any irregularities. They will not do anything that is unnecessary so the biopsy is still being discussed. We are under the care of some amazing doctors and nurses and we truly feel the Lord has placed us here for a reason. Please continue your prayers! They are being answered!!

Update 09/11/13: Holy cow. Prayers and miracles work overnight! He has been incredibly irritable and fussy (partially due to overcoming the meds still, and partially because we just found out he is sprouting TWO more teeth!). But his energy is increased and he sat up and played for longer today than yesterday! The swallow team came and did a brief evaluation. He got to sit up like a big boy in a high chair again! He cough/choked a little while eating some applesauce so they could see how he swallows. He grabbed the spoon and even tried feeding himself! They are moving his TP tube from his intestine up into his stomach to continue tube feeds. If he tolerates those well, they will give him scheduled doses of pureed baby foods. I'm still not allowed to nurse him or bottle feed him because they believe he may be aspirating the thinner fluids he takes in, so that will wait til after Friday's swallow study. They do not plan to do the Holter monitor now, because they believe his heart rate is responding normally to what he has been through, and some irregularity is expected. They are continuing to wean him off his oxygen and he is doing really well. They want to observe him and make sure his blood levels are stable and he is eating well before we go home. They will likely release us home on Monday! That means he will be home for his birthday next week!!! We will have to return for a lung biopsy in a few weeks which means he will spend more time inpatient in the hospital, but it will be so nice to get him feeling better at home in his own environment before they cut him open for the next surgery. Please keep praying for my boy. I can't believe how quickly things are turning positive!

Update 09/12/13: Jace woke up in a better mood today than he has in the 12 days we've been in the hospital. He is pretty much back to his old silly self! Laughing, playing games, and getting stronger with crawling and pulling himself up. This boy never ceases to amaze me. Nothing can stop him. We were scheduled for the swallow study tomorrow afternoon, but due to the insane flooding here in Colorado, someone didn't show up for their appointment today and they let us have the spot! Jace did extremely well and passed with flying colors. This just proved he does not aspirate (breathe in) the thin liquids he drinks, so that eliminates yet another cause for the pneumonia and pulmonary hemorrhaging. It is a bit frustrating to the doctors that they can't find a cause for Jace's respiratory distress, but what matters most is he is healing and his body is returning back to normal. This, however, does not eliminate the fact the doctors STILL want a lung biopsy, so we will be back here in a few weeks so they can do that. We need to ensure this is not a chronic condition, because I would hate to be back in the hospital battling this same issue in the future. Jace has been less fussy lately but he is still having periods of irritability...largely due to the fact that on top of all these current health issues, he is cutting TWO more teeth right now. As if he didn't have enough to deal with! He is currently sleeping but every 10-15 minutes he wakes up freaking out and crying. Not sure what that's all about. I hope we can all get some rest. Tomorrow he will be allowed regular feeds via nursing and bottle feeds, as well as purees. He still isn't allowed any solids until we see how he does with the feeds tomorrow. Hoping we can convince the doctors to let us go home early so we can get Jace back into a normal routine and prepare for his birthday next week. Please keep praying for his continuing strength and for whatever pain/discomfort he still feels to go away. Thank you for your prayers and thank the Lord for his faithfulness!

Update 09/13/13: The docs have watched Jace closely and were astonished at his rapid recovery. He was doing so well they actually released us from the hospital 3 days early! We have a few more tests and outpatient appointments, but we are HOME!! I will update after each of those appointments and then will resume daily updates once he is admitted back into the hospital for his lung biopsy surgery on October 4. Thank you to all our supporters!!

UPDATE 10/04/13: Pulmonologists said his bronchoscopy went well. He didn't have any more bleeding but his lung still looked a bit swollen. The surgeon who completed the biopsy said he was able to get two lung samples from both lobes that had shown pneumonia/hemorrhaging in the past. The samples were discolored and abnormally a bit darker than a healthy lung would be, but that doesn't really give us any answers as to what may be going on. Biopsy results will come next week after the pathologist examines the samples. The anesthesiologist was able to get the breathing tube out without any issues. No stridor like last time and not as much swelling, but they did give him some steroids for the inflammation and morphine for the pain. They discovered he may not really have any subglotic stenosis but rather his airways are naturally a little smaller than most kids his age which could've lent difficulty to some of his problems. Great News! The surgeon said there does not appear to be any air leaks and they were also able to remove his chest tube already--something we were originally told wouldn't happen til the 2nd or 3rd day after surgery. So that means of he continues to recover well, we may be able to go home as soon as tomorrow!!

UPDATE 10/05/13 (morning): Every doctor keeps saying he looks good and we should get to go home today. His oxygen levels were pretty stable last night. He is just awaiting another chest x-ray to confirm he doesn't have any air leaks/seepages. He had the whole surgical team cracking up this morning during rounds. He was waving and grunting at them and dancing. This kid is a ham!! He came out of this procedure 10,000 times better than the last one. This kid is resilient like none other. Daddy is feeding him breakfast right now and he's going, "Mmmmm!" LOL

UPDATE 10/07/13: Sorry for the late update! We've had a lot going on... the doctors found some bacteria in Jace's lungs during the pre-biopsy bronchoscopy. So they started treating him with antibiotics on October 5. We got a visit from a hospital therapy dog On October 6 and Jace loved it! He was recovering so well and they decided to let us go home on October 6 at around 4:00 p.m. It was so nice to get back to our home! Jace has been recovering well but the nerve block he received wore off completely and he is now extremely fussy and will suddenly scream in pain at random times throughout the day. We are keeping an eye on his incision sites to ensure they aren't getting infected. So far, so good. We just have to try to keep his pain in check. Today we got a phone call today regarding his lung biopsy results. His lung, although a bit discolored, was 100% perfectly healthy. No disease, no capillaritis, no indication of reactions to anything. The doctors are stumped. The pulmonologist said that he could've just had pneumonia twice and that some viruses can cause bleeding, so he may have caught that particular strain. But all these answers are just "maybes." We are still awaiting the milk protein antibodies results and the Cystic Fibrosis testing. But, if you ask me, God heard the prayers of hundreds of people and performed a miracle in my son's little body. Of course, if he gets ill again in the future, we won't hesitate to bring him directly to the doctor for chest x-rays and blood work to ensure the issue isn't happening again. The pulmonologist did say that if he were to have evidence of bleeding in his lungs again, they would need to do another biopsy immediately while the symptoms were actively being presented. For now, I will hold my boy tight and thank God for his health. He is extremely fussy and seems to be in pain as he recovers from his surgery. He isn't sleeping well and he screams suddenly quite often. But this is only temporary. He will heal and he will be himself again. Thank you all for your prayers! We have a follow up with his primary doctor tomorrow and a follow-up with the outpatient pulmonologist on October 15. Then we call the surgeons again in 2 weeks to schedule one final follow-up appointment. I will update when we get any more news!
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Cheri Pacheco Barnhart 
Colorado Springs, CO
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