As usual, things are way busier at home so it is harder to get our updates in. We are so happy to be out of the hospital. The first night home was rough for Lalo, but it has gotten better each day. I think I only gave him tylenol once today and his reflux has definitely gotten better, but there is still room for improvement. Our home nurse will visit us 2-3 times a week for a few weeks to help us monitor Lalo's recovery and weight. We follow up with the surgeon at the end of next week, so hopefully by then we will have a better handle on how the GJ tube and the hernia repair have affected his reflux. We are hoping to have a quiet weekend with no suprise trips to Baltimore. In a perfect world, I won't have any updates until after our appointment next week!
Thursday, May 26, 2011
Tuesday, May 24, 2011
Going home!
We are getting discharged! He is still vomiting but the surgeon is going to let us manage it at home/outpatient. Couldn't get him in for an MRI today, so that will also be scheduled outpatient. But, in good news, the neurology team is pretty convinced that the vomiting is not related to the brain injury.
The iv is out, the monitor is off, we are ready to go within the next hour or two!!
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Monday, May 23, 2011
Still here
Just a quick update so I can get to bed - the surgeons come around in the 6:00 hour and the nurses do vitals every 4 hrs, so it's hard to pack in enough zzz's. This morning the surgical team decided to go up on his feeds, but for whatever reason (busy OR?) they didn't put the actual orders in until 5pm. Unfortunately, Lalo is back to frequent vomiting even before the feeds went up. Now that feeds are going through the jejunal (small intestine) tube, he is only throwing up meds and stomach bile, but he still has reflux pain and still occasionally seems like he is choking, which I'm sure means he is still a pretty high aspiration risk. :(
We were able to get Kennedy Krieger (the neurodevelopmental hospital) to come do his assessment while we are here. We had an appointment scheduled for them on Wednesday, that took at least 3 months to get on their schedule so I was glad we don't have to miss it and they will come to us. We already talked to their resident and will see the attending doc in the morning. We also got neurology to come take a look at him too, and it sounds like they will see him again tomorrow. He is doing well with pain management and they have backed off a bit on his meds. We are at 15/hr on his feeds and they will increase by 5 every 5 hrs. I heard from the nurse that the doctors ordered an MRI for tomorrow, but I haven't found out exactly why yet. I'm sure the MRI will be sedated - fun, fun! An abdominal xray didn't show any issues today. We will see what other tests they can find for us tomorrow to try to figure out the vomiting. The surgeon seems optimistic that he will send us home tomorrow, but no one else seems to agree.
Sorry for the brief run through. Just wanted to get out my notes on the day!
Sunday, May 22, 2011
Saturday, May 21, 2011
Post Op day 4
Yesterday ended up being an awful day for Lalo. He was in frequent pain, he vomited multiple times and his belly was getting super swollen since his digestive system hadn't woken up yet. We have a button we can push to get an extra push of morphine in his iv drip - we pushed that button LOTS yesterday. We eventually got an xray but that looked fine. They also stopped feeds yesterday evening to let his gut rest. Finally, about 2 am we got the diaper we had been waiting for (tmi, I know).
We had some other issues too. He lost yet another iv last night, which sucked since he is still on all iv fluids and pain killers. Luckily, we had an awesome woman come to place his next line. She was super gentle and comforting and used a special vein light to guide her. Lalo was much more relaxed and didn't have his normal iv freak out session. I tried to get her on speed dial but she thought I was joking ;) I was also woken up at 4am but the pediatrician examining Lalo. Apparently, his respiratory rate was pretty high, his heart rate was too high, and his lungs sounded "wet". All worrisome because of his underlying lung disease. But thank god, it was easily fixed by reducing the amounts of iv fluids he was getting. The next step would be a diuretic and we've had enough of those to last a lifetime!
Today we have gotten more smiles from Lalo and his bursts of pain seem to be spaced a little further apart. We are going super slow on his feeds (remember that song and dance?) to try to help him tolerate it. We are currently only doing 5 mls of pedialyte an hour and they don't want to move forward until he is comfortable with that. Since we need to get up to 33/hr and switch to milk it looks like we have at least another day or two at Hotel Hopkins. Caleb and Lalo sr also came to the hospital today and we got to spend some time together and will tomorrow too. Caleb was happy to see mommy and Lalo! And so were we!
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Friday, May 20, 2011
Post Op Day 3
Lalo has had a bit more pain over the last 2 days. He has had several extra doses of narcotics to help him, but the epidural isn't quite as effective as it was initially. Another issue is they have to draw labs each day or more to check medication levels while he is on the epidural. Well watching him scream for 30 min as they try to take blood at 1:30 am is NOT my idea of effective pain management. Poor baby looks like a pin cushion - we counted 16 bruises from needle sticks following surgery and we've had at least a few more since that! Anyways, today they are going to switch to all iv meds so as long as we can keep his iv we should be okay.
The doctors started feeding him small amounts of pedialyte into his jtube (small intestine) last night and he has tolerated that so far. They are going to start breastmilk this morning and gradually increase to a full feed. His digestive system isn't totally awake so hopefully this gets him going. I'm guessing this will keep us here at least another day or two.
I've gotten several smiles out of him today, so that's a great sign. I am anxious to get us out of here and see Caleb - it's been since Monday!!
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Thursday, May 19, 2011
Day after
Lalo's is doing good. He is getting transferred to "the floor" within the hour, aka out of PICU! He did pretty well overnight, although he did not pee nearly enough (something his kidneys hate about being up here). He got several extra doses of fluids and that seems to have helped. They feel his bowels need rest from yesterday, so they plan on waiting another day to begin pedialyte and progress to feeds. The epidural seems to do a pretty good job of handling his pain. He has gotten a couple of doses of Tylenol but hasn't required any additional doses of pain killers. He has been resting well and cries when he wakes up but is pretty easily calmed but some head rubs and out of tune singing. We have gotten to see lots of old friends up. It certainly doesn't get old to hear how great he looks and how big he is. And we have definitely been reminded of how amazing his neuro status is given how he left the PICU last time. The doc last night was full of hugs, and questions about how he is doing, and good wishes. She also said that he is an example of why they tell parents to have hope after a brain injury as a newborn, called him a miracle, and said that's why they do their job! Now I'm just bragging...
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Wednesday, May 18, 2011
Surgery is done
Our surgeon just came out. Lalo did fine and is waiting to get transferred to a room in the PICU. He repaired the diaphragm using a gortex patch and it was a clean break away from his ribcage and he could see the old sutures attached to the diaphragm. He was not able to fix his pylorus because he couldn't get to it from the same incision and didn't want to put to him through additional stress. If the vomiting remains an issue, we will like go back to the OR in 6 - 12 weeks. He also fixed the incisional hernia. We are waiting for them to extubate him. They did not need to place a central line, just 2 peripheral lines. They also placed an epidural catheter to help with pain management post op.
While I was typing they just brought him out, extubated and looking around - he even turned to see his daddy when he called his name. He looks good!
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Waiting Room
Lalo is still in surgery, so here comes some pics of the day to keep mom busy!
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In the OR
We just left Lalito in the OR. They gave him some gas to fall asleep and then will tackle the issue of getting iv access. It will probably be on hour before they start surgery and then they expect surgery to take about an hour and a half. Due to his history, the current plan is to take him to the PICU to be on the safe side. Keep those prayers going!
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Tuesday, May 17, 2011
Not today
The surgeon decided to put him on the schedule for first thing tomorrow (wed). They weren't able to get him in early enough today and don't want to hold his food that long. Lalo is still happy for the most part and enjoys getting lots of attention. He has been tolerating his feeds to his small intestine very well with some retching and gagging, but no throwing up. It is very nice that we don't have to fortify his feeds with extra formula so far. He is requiring a little bit of oxygen with nasal cannulas, but seems to be mostly when he's asleep. Thank you for all the prayers and well wishes.
Monday, May 16, 2011
Reherniated :(
Just what we get for assuming a simple day. They were able to place the GJ but the xray showed a loop of bowels in his chest...which means he reherniated or that there was a second hernia that is now causing an issue. Either way, he needs surgery to repair it and they are not comfortable releasing him until it's done for fear of a bowel obstruction. Good news is it doesn't seem to be causing him any respiratory distress. So we are being admitted now and are getting added to the surgery list for tomorrow. They also saw his pylorus (the opening out of stomach) looked extremely small, when it had last looked okay. Also, it was extremely difficult to place the GJ because of his anatomy. The small intestine drops off from the pylorus in a sharp right angle when usually it should slope in more of a "c" shape. All of these issues are hopefully contributing to his awful reflux. The surgeon plans on also opening his pylorus and repairing the incisional hernia that remains from his original repair. We will be at Hopkins for a few days and are very happy to have such a great team of doctors and nurses taking care of us. Please send Lalo some more prayers.
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GJ take 2?
Lalo's back at Hopkins today. The GI dr is going to take a stab (bad choice of words?) at placing the GJ tube (putting a longer tube through his stomach into his small intestine). Prayers please that this helps his reflux! Lalo's grandpa is also having a procedure today, so please share some prayers with him too. I think these two may have conspired just to spend some quality time with some nurses!
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Wednesday, May 4, 2011
Overdue post
Sorry for the long delay since our last post. Things have been busy!
The GI doctor was supposed to attempt the GJ this past Monday but they had to reschedule it so now we are waiting a few more weeks. His vomiting is still awful (maybe one day I won't have to post that anymore...), but he has been doing okay with weight gain - most recent weigh-in was just over 18 lbs!
We are getting ready to add an occupational therapist from the county to Lalo's schedule. She will help him work on fine motor skills, particularly with his right side, and positive oral skills since he's still not eating. First on her agenda is ordering him a splint for his right hand. Although he has greatly improved, the splint will force him to keep his hand open for portions of the day. His frequently holds this hand in a tight fist because of the stroke and this will help prevent muscle issues and promote him to use that hand more.
We also added a more holistic physical therapist that is part of the therapy we are allowed through our insurance plan. This therapist includes a method known as craniosacral therapy. It also incorporates some tradional physical therapy and a few other things. The craniosacral therapy should have positive results on his digestive system as well. Fingers crossed!
We just had a helmet appointment today. He has had good growth over the last month and if he continues we may be able to kiss it goodbye in just another month or two. That will be an awesome day!
We have also weaned him off of his seizure medication as of today! One more med down! We now only have 2 meds and a multivitamin - not bad. We also added a probiotic (so 3 meds I guess) yesterday that our pharmacist recommended. He said it may help with the reflux, as a lack of good bacteria in the stomach may cause or increase digestive issues. Again, fingers crossed!
Our Easter was wonderful! It was our first holiday all together and we got to celebrate with both of our families as well. Caleb loved his basket and all the candy. He now has a major M&M habit. One of these days I will get around to downloading some pictures from our actual camera. There are some great pictures on there, but that still sits on my to-do list :-)
Almost forgot...Lalo did his first roll last Tuesday!! He rolled from his belly to his back. This is big stuff! Meanwhile, Caleb has started refusing to sit in his high chair to eat. That would be okay if we could just convince him he is not supposed to stand/sway/bounce on chairs :-)
Hope everyone is well!
The GI doctor was supposed to attempt the GJ this past Monday but they had to reschedule it so now we are waiting a few more weeks. His vomiting is still awful (maybe one day I won't have to post that anymore...), but he has been doing okay with weight gain - most recent weigh-in was just over 18 lbs!
We are getting ready to add an occupational therapist from the county to Lalo's schedule. She will help him work on fine motor skills, particularly with his right side, and positive oral skills since he's still not eating. First on her agenda is ordering him a splint for his right hand. Although he has greatly improved, the splint will force him to keep his hand open for portions of the day. His frequently holds this hand in a tight fist because of the stroke and this will help prevent muscle issues and promote him to use that hand more.
We also added a more holistic physical therapist that is part of the therapy we are allowed through our insurance plan. This therapist includes a method known as craniosacral therapy. It also incorporates some tradional physical therapy and a few other things. The craniosacral therapy should have positive results on his digestive system as well. Fingers crossed!
We just had a helmet appointment today. He has had good growth over the last month and if he continues we may be able to kiss it goodbye in just another month or two. That will be an awesome day!
We have also weaned him off of his seizure medication as of today! One more med down! We now only have 2 meds and a multivitamin - not bad. We also added a probiotic (so 3 meds I guess) yesterday that our pharmacist recommended. He said it may help with the reflux, as a lack of good bacteria in the stomach may cause or increase digestive issues. Again, fingers crossed!
Our Easter was wonderful! It was our first holiday all together and we got to celebrate with both of our families as well. Caleb loved his basket and all the candy. He now has a major M&M habit. One of these days I will get around to downloading some pictures from our actual camera. There are some great pictures on there, but that still sits on my to-do list :-)
Almost forgot...Lalo did his first roll last Tuesday!! He rolled from his belly to his back. This is big stuff! Meanwhile, Caleb has started refusing to sit in his high chair to eat. That would be okay if we could just convince him he is not supposed to stand/sway/bounce on chairs :-)
Hope everyone is well!
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